"Simon's Grey Zone" 12y/o, JRT - Simon has passed

[SavingSimon]

ADMIN NOTE: This post and the post just immediately after this one were originally posted in other topics on the message board. They were copied to here, in order to create a thread/topic where Simon's person can post about Simon and where our members can reply. :)

___________________________________________


My little 11 year old dachshund was just diagnosed with Cushing diseases. My holistic vet has Apollo on Cushex, and supplements, and said I should get the Ach test, etc. test to make sure he has cushing diseases, which he has. I know I have to decide on a treatment.
The specialists is strongly suggesting Lysordern. I have also heard of Anipryl, and Tri (not sure of spelling will have to look up)
Would like to know what other pet owners have used to help their dogs with cushings. Pretty overwhelmed right now.
Any suggestions would be appreciated.
from San Diego, ca.

Oh, I remember when I felt like you did, sometime over a year ago - just absolutely overwhelmed and terrified. I found out Simon had Cushing's earlier than most owners (Simon is my best friend and a twelve year old Jack Russell Terrier) I also have six other dogs, (all Simon's fault, but that's another story. I also discovered there was "no advantage" to knowing early once I found out his Cushing's was pituitary dependent, like 85% of dogs with the disease. I took him to twelve vets besides the two I have known and trusted him with his entire life. Specialists, internists, etc. etc.. Every vet except the two I knew and trusted told me there was no downside to trylostane, to my surprise even the holistic vet I took him to said this (and I'm not much for holistic stuff for people or dogs, just so you know but I was willing to try ANYTHING). What I found in my quest for knowledge is that the University of TN has a Veterinary Endocronologist named Dr. Oliver who is THE MAN when it comes to Cushing's disease. To try and make this long story as brief as possible, let me just say, thank God I trusted the vets I trust instinctually and didn't just go with the opinion of those with more experience with Cushings that were really pushing trilostane. Before we started the trilostane, one of the vets did suggest I do some lab work on Simon, and find out how the cortisol was distributing itself in his blood. This test cost somewhere a little over a hundred dollars I think. But it saved me from making the biggest mistake I almost made in my life, and it saved Simon's life. It turned out, according to Dr. Oliver that Simon has "atypical Cushings" and that trylostane would have hurt and or possibly killed him. That is NOT the case in all, or even most dogs, but it is in some, and they are learning more and more every day that shows trylostane is not really much safer than the older medication lysodern. What Simon's bloodwork showed was that his cortisol is mainly being absorbed by the hormone estradiol in his system. Dr. Oliver told my vet that the best solution was flax seed hull for Simon. It mimicks estradiol, and therefore the flax lignans will absorb a lot of the cortisol that would normally be absorbed into his system and start making him a lot more symptomatic. He also recommended melatonin twice a day to prevent hair loss and thinning skin. Simon also takes Sam-E once a day for his liver, and milk thistle twice a day, for the same reason. For his little pot belly, he was originally prescribed Hills RD, but I have read a lot of research that says that ID is a better choice for dog's with Cushings. His disease has not progressed, and since we have just worked out his treatment plan within the last month, all I can say is I am already beginning to see some changes for the positive. I cannot tell you how surprised I am that holistic type treatments are the right answer for him. And I cannot recommend enough that your vet gets the test kit from the University of TN. Since I was about to cave in and try trylostane, against the better judgement of me, and my most trusted vets, because of all of the other "experts" I had taken him to, I really feel that this test saved his life. It is worth every cent. Simon's symptoms ranged from a newly ravenous appetite, when he used to be a "picky" eater. A "pot belly", and weakening of his hind legs (he was a Jack Russell with "springs in his legs" before the Cushings became noticeable.) He pretty much has all of the symptoms, except for only a slight bald spot on his tail instead of a large bald patch, and the one symptom that most owners notice first - the drinking too much and frequent urination are the main symptoms he does not have. The only way I knew he had Cushings was his Alk Phos level had doubled in six months, and it really wasn't terribly high. It was enough for my vet to mention it, and me to ask what it could mean. He said it could be Cushings, but he doubted it, because Simon was not having the symptoms most owners notice first and because it is very debatable how accurate an indicator alk. phos. levels are for Cushings - there are many other things that can cause it to rise and fall. But after his Dex suppression, and the other test (can't think of the name at the moment -ACTH stem?) there was no doubt that Simon was in the range of Cushings disease. That combined with his symptoms made deciding to treat or not to treat and how to treat if to treat an absolute nightmare. I feel your frustration, confusion, and depression that comes with this diagnosis. But trust me when I tell you it is not as dire as it seems at first. Simon also has some more rare symptoms, like licking the furniture until it is soaking wet, and some other things I can't think of now, but have confirmed are rare signs of Cushings. It is just unusual that he is missing the more common symptoms. Regardless, catching this early did not help other than it gave me time to figure out the best treatment, and to find the best diagnostic test to decide what that would be. I cannot recommend enough that you have your vet get in touch with the UofTN Veterinary Endocronologists and find out how the cortisol is distributing so that you can figure out the safest and most effective treatment for whatever stage of Cushings your dog is dealing with. There is so much more hope than I originally thought. There are so many treatments that are not so radical that they can cause your dog to get Addison's or crash. Read everything you can. Flax lignans help people with hormone problems also. Try the website flaxhulls.com and read about how they may help your dachshund. But first make sure they will help by getting that bloodtest. It is also good to get an ultrasound every 3to 6 months to see how your dog's liver and other organs are doing, because there are other medicinal and dietary aids. Your dog can live out it's full life span with this disease if you keep it in check and do everything you can. I am not saying that WILL happen for sure, but I am saying that there is a lot more hope than I was originally led to believe, and there are advances being made all the time in treatment. The most important thing to do is get all of the basic testing done, the stuff your vet will know to do, and then to be sure and send bloodwork off to the University of TN. I am honestly not here to promote any product, or endorse any person, or University, or anything like that at all - I am just telling you what I wish I would have known from the beginning. My vet was so excited about this news, and I have to say I am too - I am already seeing a change for the better. Exercise helps too to keep your dogs leg muscles from getting any weaker, and to strengthen the abdominal muscles. If you are like me, you will do any and everything for your best friend to have the longest and best quality life possible. If the time comes that Simon develops more symptoms (which may or may not, according to my understanding of the disease) trylostane is NOT an option for him, even though it is considered the safer option for many dogs with Cushings. Without the lab work at the University I would not have known that. I will keep you and your dachshund in my prayers - I know this news can be absolutely devastating, and yet after over a year I found out that there are answers that are kind of "outside the box" that really do work after all. I hope this helps you, and others that are depressed and discouraged over this diagnosis. I wish you and your dog many more happy healthy years together, and a year ago I thought my boy might not still be here - but I am thrilled to tell you, not only is he here, he is getting visibly better. Just be careful to do everything through your vet, and be sure that you get the advice and labwork of an endocronologist, preferably the one that is so well known for what he does, who is Dr. Oliver at the University of TN. Oh - and a quick note - I don't live anywhere near TN, but the bloodwork can be shipped out, and you should have results within a week of the best course of action for your dog.
Wishing you and your dog the best, and really hoping that my experience gives you hope and answers. :)

[SavingSimon]

Harley's symptoms were excessive drinking and urinating, ravenous appetite, pot-belly, panting, minor weakness in his rear legs and he started to lose the hair on his tail.

In the beginning his cortisol remained in the normal ranges so we only treated the high estradiol. Looking back now...Harley had ALL the cushings symptoms and I should have loaded him on Lysodren then. We did not start him on the Lysodren until his cortisol rose to 18.5 ug/dl and it's only been a maintenance dose.

I have done alot of testing on my boy...full adrenal panels, endogenous tests, LDDS test, 2 ultrasounds, etc... :eek: His last full adrenal panel done in Nov. 09 showed that his estradiol has decreased from 132 to 96 and some of his symtoms have also waned. He is no longer the piggy who wants to eats everything in sight, he does not drink or urinate excessively anymore and he does not pant alot. He does have a rat tail...poor Harley. :p:)

His drop-off in appetite, I believe, could be caused by the excessive cortisol in his body. The maintenance dose he is on is not working as of yet to control the cortisol. But the decrease in panting I think is definitely because his estradiol level is lowered.

Here is a link to another members thread, Tammy and her Atypical pup Crash. Crash has had great success on this treatment of melatonin and lignans for his Atypical Cushings.

We're back...
http://www.k9cushings.com/forum/showthread.php?t=407&page=6

Hope this helps.

Love and hugs,
Lori

I'm new here but WOW - my Simon has the exact same diagnosis as Harley and even the same symptoms. We just started the melatonin and Flax lignans ... seeing a little difference and hoping for great success. Simon even needs a "tail toupee" - that is the only place he is losing hair. Is there anything else helping your boy (or that didn't help) that we should know about? Please keep in touch as I haven't read everything about Harley yet, but he seems to be in the same boat as Simon, down to their tails from what I can see. Did Dr. Oliver at the U of TN diagnose him? Just curious ... that is who told my vet not to put Simon on Trilostane but to be sure and treat with melatonin and flax hull lignans. So far, it seems to be working in just around a month of treatment - except for his weight, pendulous abdomen, and for his weak hind legs. Did Harley happen to lick the furniture until it was so wet you thought maybe he or another dog peed there? Just wondering if that is another sign (I have only read that it is in one place, written by one vet). Hope to get to know you and Harley better! Take care, and hug Harley! ~T.S.D. & Simon

[Harley PoMMom]

Hi and welcome to you and Simon from me and my boy Harley. I do remember, like it was yesterday, how terrified and confused I was when Harley was dx'd with Cushing's. :eek::confused: Boy was I thankful when I found this forum with these amazing and knowledgeable people.

So Simon's been dx'd with Atypical Cushing's by the full adrenal panel from the University of TN headed by the wonderful and brilliant Dr Oliver, right? It would be of great help to us if you could post the test results from the University of TN. In fact any test results that you could post would help us immensely, you see, the more we know about your precious boy the better our feedback will be.

We are here for you and Simon, remember that, ok, so ask all the questions you want and we will try to answer them the best we can. :)

Love and hugs,
Lori

[jrepac]

just a suggestion...the supplement L-Glutamine is used by some of us to combat muscle wasting/weakness...I give that along with the melatonin and lignans...

Jeff

[SavingSimon]

Hi and welcome to you and Simon from me and my boy Harley. I do remember, like it was yesterday, how terrified and confused I was when Harley was dx'd with Cushing's. :eek::confused: Boy was I thankful when I found this forum with these amazing and knowledgeable people.

So Simon's been dx'd with Atypical Cushing's by the full adrenal panel from the University of TN headed by the wonderful and brilliant Dr Oliver, right? It would be of great help to us if you could post the test results from the University of TN. In fact any test results that you could post would help us immensely, you see, the more we know about your precious boy the better our feedback will be.

We are here for you and Simon, remember that, ok, so ask all the questions you want and we will try to answer them the best we can. :)

Love and hugs,
Lori

Thank you for the welcome! This forum works a little different than any other I have ever been a part of, so I'm sorry if I mess up anything here in advance. I will gather all of Simon's test results and post them ASAP - from when Cushing's was first suspected to now. He has had 3 ultrasounds so far which are pretty cool to look at - I wish I knew how to post the videos so you all could see. Maybe it's just interesting to me because I am Simon's Mom. I also always watch all of my dog's surgeries, because my vet T.K. is awesome too and confident enough that it doesn't bother him at all. Simon has been through all of the tests (some of them several times), and yes FINALLY the most recent test that actually gave us useful information was from the brilliant and wonderful Dr. Oliver at the University of TN. A test for some reason that Simon almost didn't even get. A lot of vets were just saying he's "borderline Cushings" - other vets insisted there is no such thing as "borderline" he either has it or he doesn't. From the dex supression and stim tests, we could tell something was up with his cortisol, and of course, his alk phos which was the first thing that had Simon's brilliant, caring and most awesome vet, Dr. T.K. Warfield let me know it was possible but not probable Simon had Cushings. T.K. ended up talking to Dr. Oliver for several hours over the past couple of months, and we finally got our diagnosis and treatment plan for now. For our vet, T.K. to be impressed with Dr. Oliver, says a lot - and he was impressed. He said that Dr. O knows everything anyone could ever want to know about Cushing's and more. So thanks to some great teamwork, my vet, who takes my dogs files home with him at night when he can't figure out what is wrong, and Dr. Oliver who went through the results with him, we are finally much less in the "grey area" that we were when I found out Simon probably had Cushings. I KNEW he did, it's just so many of the other vets he saw confused me as to whether he did or not because of him not drinking more than usual, or urinating more than usual. He does however, have a pendulous abdomen (pot belly), he pants like he is having a hot flash (interesting to me that his cortisol level in his estradiol - at least, that is my understanding of it, is high - which makes me wonder if it feels like a hot flash). T.K. (Simon's regular vet) said that was what concerned Dr. Oliver the most (the amount of cortisol in the estradiol) and made treatment with trylostane not an option. I am not sure why that rules out trylostane, but there is still so much that I have to learn about this infuriating, frustrating, devastating disease - I can't tell you! I am so thankful that someone like Dr. Oliver is out there to give us answers! I am not sure now if I already gave a list of all of Simon's symptoms but the licking the furniture really was bizarre - and his hind legs are so much weaker. He has had "tremors" since he was a puppy, but now he seems to tremble a lot more. That bothers me - because I wonder what it feels like - I wonder if he feels like I feel when I am on prednisone. Whenever I have had to take that awful medication, it made me feel like I wanted to come out of my skin - I felt like climbing the walls - the slightest sound or movement made me jumpy and the anxiety was almost unbearable. I hate that drug. And I worry maybe Simon feels like he is on prednisone all of the time. Does anyone know what it must feel like for the dogs? I don't know how we could know - but just what I sense from Simon is that he is more anxious. Though the melatonin does seem to be helping - I think, it is a little soon to know. I have a briefcase full of information on Cushings, I bought the diet online (nothing as magnificent as it sounds, by the way - save your money for flax lignans, and I'd be happy to answer any questions on that).
One last question for now, is Simon is not drinking more water that I have noticed, but since he has been on the flax lignans he has started peeing in the house more than normal. I think I read that was the case with someone else's dog, and they just needed to adjust the dose of flax? Oh, and I guess the other question no Vet seems to be able to answer for me, which keeps Simon and I in the grey zone is this: Is Cushing's Disease a progressive disease or not? I have had answers ranging from "absolutely, I cannot think of anything MORE progressive" from an onlline vet - to "Not necessarily, every dog is different and some live with the same symptoms they had at their initial diagnosis for years" - from a local, well respected veterinary internist. So, what is the black and white answer - is there one?
I want to thank whoever thought of this forum. And especially Harley's Mom, for being so welcoming and kind. I have more questions than I can think of right now, and I will try not to overwhelm everyone right now. I just want you all to know that Simon is my "heart and soul" dog, he is THE SPECIAL ONE. The once in a lifetime dog. He fooled me into thinking Jack Russells are - well - different than they really are, :rolleyes: though I ended up falling in love with the breed and all of their different doganalities anyway - Simon is the first Jack I have ever owned. I grew up with Boxers and I love all dogs, big and small. When I lose Simon - I warn you all - I will lose my mind - I know it. Everyone else I know that has Jack Russells have had them live to be 18 years old. I hope and pray this is not progressive, and that Simon has at least another good six years. I have loved, and I have lost many dogs. One Boxer came very close to the place Simon holds in my heart, in fact, I would say that the empty spot he left when he died of cancer five years ago is the closest part of me to the part that loves Simon so much. All dogs are wonderful, but some just are so in tune with you, and you with them, that your heart-beats merge into one, and losing them will throw off the rhythm of your heart for the rest of your life. Knowing I am closer to that day is so hard to live with. And my heart breaks for everyone that has this in their life. I truly hope that we can help each other, and learn together, and give our best furry friends the best and longest quality lives despite the dark shadow that has fallen over all of us that have to live with this diagnosis. I am so thankful for the vets, the pet owners, and this forum you all have no idea. I am so sorry for anyone who has lost their loved one to Cushings. I will be here for you guys and pray that day is far, far away for us all, and if it has come recently for any members of the forum, I am here for you. I know the pain of this kind of loss, and there is nothing like it.
I have to say I am much more hopeful and optimistic after Simon's vet, T.K., got the results from Dr. Oliver. I just pray this isn't a false hope. I am scared, and I hate this, but I am thankful there is a supportive group here. I think we finally have all of the tools we need to get through this. Thank you all. We are here for you. With great empathy, compassion, and gratitude,
Simon's Mom, and Simon

[SavingSimon]

just a suggestion...the supplement L-Glutamine is used by some of us to combat muscle wasting/weakness...I give that along with the melatonin and lignans...

Jeff


Thanks for the suggestion Jeff! I'll ask our vet about it. Another supplement someone suggested was Co-Q10, but the lady who suggested it does NOT have a dog with Cushing's. She swears it helps as an antioxidant and has kept her sixteen year old dog's teeth clean and well, still there. Simon has lost most of his teeth, he was always a hard chewer on bones, etc - but he has the most awful breath, and the pharmacist who suggested this supplement said it helps with circulation, as well as helping with dental health. I don't want to throw in anything at all that can hurt my boy, and I already am confident that your suggestion is a good one. I am just wondering if anyone has tried Co-Q10 in a Cushing's case, or if it is a bad idea?

Also, Harley's Po Mom, I saw three letters that go before the kind of Cushings Harley has. Since his version of Cushings sounds so much like Simon's can you tell me what those letters stand for, and what they mean? And did Dr. Oliver tell you that is what Harley had?

Sorry if I am leaving questions in the wrong place - still learning ...

Oh, one more question (sorry) :o Hills ID or Hills RD? T.K. has

suggested I feed Simon R.D. but there is an article I read somewhere that says I.D. is the best food for Cushnoid dogs - something to do with the protein levels. I'm so confused I've just been mixing the two - along with a little J.D. to help with his joints.

I am always open to, and look forward to reading suggestions from you all. Thank you so much!

[Rebelsmom]

I just startd Rebel on Glucosamine for his joints. he has only been on it a couple days now so I don't really have anything to report on that.

I do have some opinion on the food though. Here is a link that was given to me so you can compare and see what is in your dogs food. www.dogfoodanalysis.com

My original vet had put Rebel on the R/D. To my horror and surprise it does not seem to be a great food. It is loaded with grains, corn and fillers. I went with Acana Pacifica. It is 60% fish (real ones, not processed) and 40% fruits and veggies. No fillers and grains and esp no corn.

Hope that helps.

Melissa

[Harley PoMMom]

The "PDH" is an abbreviation for Pituitary Dependent Hyperadrenocorticism, which means my boy has a tumor inside the pituitary gland. The tumor usually grows very slowly.

If Simon does indeed have very bad breath, then this is something that should be looked into. When was the last time your vet did a dental cleaning on him?

Love and hugs,
Lori

[SavingSimon]

The "PDH" is an abbreviation for Pituitary Dependent Hyperadrenocorticism, which means my boy has a tumor inside the pituitary gland. The tumor usually grows very slowly.

If Simon does indeed have very bad breath, then this is something that should be looked into. When was the last time your vet did a dental cleaning on him?

Love and hugs,
Lori

Oh, duh, I knew that ... I am just so bad with acronyms. That is what Simon has as well. His last dental was sometime within the last year, but he does have gum disease (along with the Cushings) - I guess if that Co-Q10 enzyme isn't a good idea (does anyone know, I know it would thin his blood like aspirin does, which is what makes me hesitate ... don't know if that is good or bad in Cushing's). Also wondering if anyone went so far as to get an MRI. Before Dr. Oliver, I was considering it, and sometimes I wonder if maybe Simon's tumor would be operable by one of the top neurologists in CA who says it is possible. I would do ANYTHING to make him well, but T.K. thinks the risks outweight the benefits. Thank you again Lori, for your quick response!
Love,
T.S.Dena (Terribly Sad) and Simon

[SavingSimon]

I just startd Rebel on Glucosamine for his joints. he has only been on it a couple days now so I don't really have anything to report on that.

I do have some opinion on the food though. Here is a link that was given to me so you can compare and see what is in your dogs food. www.dogfoodanalysis.com

My original vet had put Rebel on the R/D. To my horror and surprise it does not seem to be a great food. It is loaded with grains, corn and fillers. I went with Acana Pacifica. It is 60% fish (real ones, not processed) and 40% fruits and veggies. No fillers and grains and esp no corn.

Hope that helps.

Melissa

Thanks Melissa,
I have been reading a lot more about dog food lately that is absolutely horrifying. I have always had more confidence in Hills and Science Diet, because my Boxers lived to be 14 years old that ate it for all of their lives. And because of the research grants they are given, but perhaps overly confident because I know times have changed since then, and with the economy corners get cut. I don't think they are as horrible as some of the companies that actually put roadkill and euthanized pets in their food but I do worry that Hills/Science Diet isn't the quality it used to be, just the price has gone up, not the quality. I appreciate the tip on the food - and also am wondering if it is true that a high protein diet is better for Simon and other dogs with Cushings. I understand why R.D. is mostly fiber, since the point is weight loss, but I don't think Simon would be overweight if his muscles weren't becoming atrophied due to the Cushings.
To all of you that have already offered us advice ... thank you so very much! I hope that your pets are doing well, and look forward to finding some time to read all of the threads. I will keep you all and your dear ones in my prayers.
As always - we are open to more advice -
T.S.D. & Simon

[SavingSimon]

just a suggestion...the supplement L-Glutamine is used by some of us to combat muscle wasting/weakness...I give that along with the melatonin and lignans...

Jeff

Jeff,
Is this different than glucosamine and chondroitin? Or is it basically the same thing?
Thanks!
T.S.D. & Simey

[Rebelsmom]

Thanks Melissa,
I have been reading a lot more about dog food lately that is absolutely horrifying. I have always had more confidence in Hills and Science Diet, because my Boxers lived to be 14 years old that ate it for all of their lives. And because of the research grants they are given, but perhaps overly confident because I know times have changed since then, and with the economy corners get cut. I don't think they are as horrible as some of the companies that actually put roadkill and euthanized pets in their food but I do worry that Hills/Science Diet isn't the quality it used to be, just the price has gone up, not the quality. I appreciate the tip on the food - and also am wondering if it is true that a high protein diet is better for Simon and other dogs with Cushings. I understand why R.D. is mostly fiber, since the point is weight loss, but I don't think Simon would be overweight if his muscles weren't becoming atrophied due to the Cushings.
To all of you that have already offered us advice ... thank you so very much! I hope that your pets are doing well, and look forward to finding some time to read all of the threads. I will keep you all and your dear ones in my prayers.
As always - we are open to more advice -
T.S.D. & Simon

A higher protein diet should also help with weight loss. You don't want all those grains and fillers that our pups can't process. I believe one of the main ingredients in R/D is corn. Which our pups can't digest anyway. Maybe that's why they lose weight. I had Rebel on R/D for awhile and I saw no results with it at all!! I was unhappy that I was paying for a food that did nothing and was even more unhappy when I found out what was in it. I compared the ingrediant list on the R/D and on Iams with the list from the Acana. I could not believe the difference. I actually could pronounce all the ingrediants in the Acana and knew what they were! When I spoke with the gentleman at the pet store that only carries the Acana food he told me to ask my vet how much nutritional training she got for dogs. He said they get none! I was blown away. I didn't come right out and ask her but when I brought up the food issues she really didn't have much to say on it.

Melissa

[StarDeb55]

This is the first time I have posted to you. I really don't want to knock Science Diet as you say you have a lot of confidence in the food. I will tell you this much that I quit feeding Hill's anything years ago because of all the "junk" & fillers that they put in their food. In fact, when one of my pups developed lymphoma, the on-line lymphoma support group I belonged to referred to all of Hill's products a "science death". I would suggest you take a look at the following website which will give you ratings for a huge number of dog foods. They also have a detailed list of ingredients for each food.

http://dogfoodanalysis.com/

Debbie

[Harley PoMMom]

Any supplement that you are thinking about giving to your pup should be approved by your vet/IMS first.

Here is looong article about L-Glutamine:


Role of Glutamine in Health and Disease
Colorado State University
Elisa Mazzaferro, DVM, MS
Timothy Hackett, DVM, MS
Wayne Wingfield, DVM, MS
Greg Ogilvie, DVM
Martin Fettman, DVM, PhD

http://www.scribd.com/doc/23752319/Role-of-Glutamine-in-Health-and-Disease

The "DVM" behind their names, it means...Doctor of Veterinary Medicine


As far as the CoQ10, I've read that a study was done in human patients with kidney disease, and giving supplemental CoQ10 decreases serum urea and creatinine. This is basically all I know about CoQ10.


and sometimes I wonder if maybe Simon's tumor would be operable by one of the top neurologists in CA who says it is possible.

Hypophysectomy is the removal of the pituitary gland, we have a member here, Gina with her precious pup Lucy, who has had this surgery done by a team of expert surgeons who are associated with Dr. David Bruyette. Dr. David Bruyette is a nationally known veterinary endocrinologist and the medical director of VCA West Los Angeles Animal Hospital.

Here are links to Gina and Lucy's Thread:

Lucygoo updates
http://www.k9cushings.com/forum/showthread.php?t=534

Lucygoo - Pit. macroadenoma, endoscopic transsphenoidal surgery, trans-oral approach:
http://www.k9cushings.com/forum/showthread.php?t=1009

Love and hugs,
Lori

[apollo6]

Dear Simon and her mother, How do I get in contact with Dr. Oliver, email, phone, ? I have looked on the website on the tests etc they provide. Do I have my vet contact him or how does it work? Also costs? I already had the ACH STIM TEST, ULTRASOUD, BLOOD PANEL. I am open to what is the best for my little guy. I live in San Diego, Ca. I blame myself for his condition. He was on allergy medication for years, because of back problems, at times on Prednisone, dexa?, meth? Every time he had vaccines got sick, throwing up, more medications. The funny thing is when I stopped the vaccines and allergy medications, he stopped throwing up. He has lost most of the hair on his tail, his beautiful floppy ears hardly have any hair on them, side of neck, on both sides hair loss. Skin liaisons(in grown hairs), some hair did grow back. Increasing weakness in hind legs. I love this guy so much. We also have another dachie, Karma almost the same age who doesn't have any signs.
Love and prayers to you.

[SavingSimon]

I was asked to post Simon's tests and results so far, so maybe this is where his thread should begin - I guess the mods can move it if they think so. I am going to try and sum up the whole Cushings story so far, for Simon here. I know I have mentioned some of this in his thread, but this way you can read and compare his story to your dog's, and his test results to your dog's test results. Right now he is laying on a chair, licking it, like he's determined to lick it all away, my poor boy!

The first thing I noticed was the panting in the middle of the night, like Simon was having hot flashes, but he didn't come out from under the blankets to cool off. Next the excessive appetite -a formerly "picky eater" one day Simon ate an empty pizza box that was sitting by the door to be taken to the trash. Then I was trying to figure out which one of my seven dogs kept peeing on the furniture (this is something new, and none of my dogs are) and one day I notice Simon in a pool of drool, licking away on a chair. I realized why it never smelled like urine - it was saliva, and Simon was the one doing it, licking his legs and the furniture compulsively. He also no longer had that JRT "spring" in his step, it was hard for him to get on the chair or the furniture, and he had a bald spot on his tail. The symptom Dr. T.K. Warfield (Simon's AWESOME vet, hereafter referred to as just "T.K." noticed was simply his alkaline phosphatase going from 102 (which is in the normal range of 5-131) March 21, 2007 to 499 on October 2, 2008. Though their is over a year window of time there, I believe Simon developed Cushings very close to the October 2 test, because I had not noticed the pot bellly or other symptoms yet. On August 27, 2009, Simon's ALK-P had jumped up to 956. Still T.K. did not think this was reason for great alarm, as the rest of Simon's bloodwork was normal, and apparently ALK-P is not a reliable indicator of Cushing's according to many vets. An elevated level can mean a plethora of things other than Cushings - including nothing at all. But August 2009 was when T.K. felt that he should mention to me that Simon's ALK-P had almost doubled since his last check-up. I asked him what it could mean and he said "possibly Cushing's disease" but he doubted it very much because Simon did not have excessive thirst and was not unable to control his bladder However, after reading up on Cushings and knowing Simon (I have had a lot of dogs in my life, and have seven now, but I have never had one so in tune or such a part of me - he's my once in a lifetime heart and soul dog), so I knew he had the disease - no question in my mind -so much so that I bet T.K. a cruise to the Gallapagos for him and his wife to a pitcher of beer (that I would find necessary to cry in) that Simon had Cushings. [In the interest of being more concise than i tend to be, and because I have already expressed some of what I went through in the other posts on Simon's thread, I will now just try my best, but warning - I am not good at being concise on a first draft :o) to stick to the numbers and tests. I apologize in advance for any redundancy and for the way I tell a story the long way.] On September 23, 2009 Simon had a Dexamethasone Supression test by Dr. Burrows, his other wonderful primary care vet. His pre- dex level (I guess of cortisol?) was 10.6 the reference range is 1.0-6.0 so this was flagged as HIGH. Post 4 hour Dex was 1.4 and post 8 hour was 3.6. It is my understanding that this is unusual test result, as they usually see the post test numbers go up instead of down, but because his test was above baseline before the dexamethasone was introduced, the lab circled the lines "Consistent with pituatary-dependent hyperanderenocorticism (PDH)." It also said on the lab results "hyperandrenocorticism[Cushings] is a clinical disorder with clinical signs. If the animal has no clinical signs, we do not recommend treatment." T.K. agreed with Simon's other regular vet, Karen that he was not syptomatic enough to warrant treatment. I couldn't stand not doing anything, so we went to a holisitc vet that recommended fish oil, milk thistle and Sam-E. Then we ventured on to other vets. I forgot to mention T.K. had his internal meds vet do an ultrasound in which Simon's adrenal glands were slightly enlarged. One 500 mg capsule of fish oil and 100 mg of Sam-E a day were recommended by the next vet to give Simon an ultrasound which showed his liver slightly enlarged and his adrenal glands also very slightyly enlarged. This second ultrasound was done on September 17, 2009. On September 23, 2009 I repeated the ultrasound, at the recommendation of the next vet to get involved mainly because T.K. has an older ultrasound machine, and I preferred a Specialty Center for this. This vet came highly recommended as on of the best Internal Medicine vets in Tucson. Also I forgot to mention on the initial testing day with T.K. that Simon's thyroid level was just a little low so we put him on thyroxin. The second vet after this, Dr. Prahl, who gave Simon his second ultra-sound thought that possibly all of Simon's problems were thyroid related. She recommended to stop the thyroxin for three weeks and then pefrom a total T4, free T4 and a TSH to determine if hypothyroidism is indeed a problem. We followed up with that, however, and Simon's thyroid tests all came back normal that time, so I took him off of the thyroxin permanently. As I write this now, I am wondering if Simon's thyroid is something to keep an eye on - does Cushing's affect the thyroid? I can't stress enough how frustrating these tests were, because one, as far as tests go they are not seen as very reliable (they are the kind that can rule something in, but not rule it out, and even if it rules it in, that is not nnecessarily the "rule"!!!) Dr. Prahl also noticed some mineralization within Simon's prostate which she told me gave her some concern that he may also have prostate cancer. Subsequent vets said they doubted that very much, and in an eleven year old dog some mineralization is normal. I have no idea so I just hope they are right, or that it is some other Cushing's related issue. This is kind of exhausting to relive, I don't want to lose this so I will post it now and just put to be continued .... (coming up more tests and numbers, the next tests are another ultrasound - which was not necessary for anyone but that vet's bank account, and then another CBC and of course at least one ACTH stim test and then the work of Dr. Oliver (FINALLY - some answers :) from God bless Dr. Oliver at the U of TN ....

[SavingSimon]

Dear Simon and her mother, How do I get in contact with Dr. Oliver, email, phone, ? I have looked on the website on the tests etc they provide. Do I have my vet contact him or how does it work? Also costs? I already had the ACH STIM TEST, ULTRASOUD, BLOOD PANEL. I am open to what is the best for my little guy. I live in San Diego, Ca. I blame myself for his condition. He was on allergy medication for years, because of back problems, at times on Prednisone, dexa?, meth? Every time he had vaccines got sick, throwing up, more medications. The funny thing is when I stopped the vaccines and allergy medications, he stopped throwing up. He has lost most of the hair on his tail, his beautiful floppy ears hardly have any hair on them, side of neck, on both sides hair loss. Skin liaisons(in grown hairs), some hair did grow back. Increasing weakness in hind legs. I love this guy so much. We also have another dachie, Karma almost the same age who doesn't have any signs.
Love and prayers to you.

Dear Apollo06's (Mom?),
The way I got in contact with Dr. Oliver was through a vet. I was just getting to that part of the story, but any vet (even the ones who have never heard of him) should be easily able to contact him at the University of TN. He will send your vet a kit to do a complete blood panel, that from what I understand, shows exactly where all the cortisol that your dog is producing is going in his body. Your vet will get back a report, and an education on Cushing's disease. T.K. (our brilliant vet) was super-impressed with Dr. Oliver, and with his treatment plan for Simon, and fascinated by the science of how it works. I also think Harley'spoMom (one of the moderators) has more direct contact information. I actually wanted to talk to Dr. Oliver myself, but my vet said that wasn't a good idea. I respect that, I am sure Dr. Oliver is very busy, but I still would like to talk to him some day - maybe Harley's Mom knows if that is possible or not.
You have a beautiful boy, and I totally know how you feel. I blame myself sometimes too - for not noticing things sooner, stuff like that, but listen, you DID NOT GIVE THIS TO APOLLO. If all of the allergy medications were what gave it to him - in other words, if you did give it to him, you would be LUCKY because, just like you gave it to him, you could take it away. Simply by stopping all of the steroids, the Cushings would go away. But if he isn't on any steroids of any kind, and he is testing positive for Cushings, then it isn't something that you did. You are obviously as loving and caring of a dog mom as they come, and this is just one of those things that happen. There is no way you gave it to him if it has not reversed.
The allergy shots, if you went through Spectrum labs or something like that, are just a little bit of the allergens so that the dog hopefully builds up an immunity to them. It is probably why he was sick from them, for most dogs it doesn't work. But those shots do not have any kind of steroid in them. And like I said, if you gave it to him by giving him medicine, you could take the disease away by stopping the medicine. I had a little Jack Russell terrier who's immune system was shot - worse than Apollo's. He was allergic to almost everything in the environment, and on top of that, he was allergic to every food except for venison and pork. He ended up getting valley fever, because of his compromised immune system, and what looked like a mass on an x-ray, was actually all of his organs had grown together. I always watch my dog's surgeries, and I am so thankful T.K. lets me watch, because that day he went in to do exploratory surgery on my little Sirius, I don't know if I would have been so sure I had made the right decision to let him go, if I hadn't actually seen for myself what was happening inside of him. His intestines were smaller than angel hair pasta, and all of his organs were one big mass. T.K. had never seen anything like it, asked me to come into the surgery room and look, and told me that if he was human, he would have to sew him up, and he would have to suffer recovering from the surgery, and then slowly die of starvation. I had no doubt at all that letting him go there, while he was still under anesthesia was the right thing to do. But I will tell you who WAS to blame - one hundred percent - the breeder of my little guy. She knew that she was breeding allergies into an already allergy prone breed. She knew she was breeding compromised immune systems, because allergies are inherited directly from the parents. But she bred for money, not to better the breed - she bred dogs for all the wrong reasons. And although he was one of the prettiest little dogs you could ever meet, Sirius was seriously messed up, and immuno-compromised. He died of Valley Fever at four and a half years old. Living in AZ almost all of my dogs have had and recovered from Valley Fever. But with Sirius, he just couldn't fight it, his immune system was way too weak, and that was from CARELESS BREEDING- SELFISH, GREEDY BREEDING. Even if you bred Apollo yourself, I know that it would have been an accident that you bred in allergies because you probably didn't know what I just told you. But for someone who is supposed to be a professional breeder, that shows dogs and teaches about the breed and is a big shot in the breed club to breed in allergies is just selfish and stupid. Especially when so many of her dogs end up in rescue (meaning since I do rescue, I end up with her immuno-compromised dogs, and trying to find loving homes for them that realize they are going to have a dog with health problems, for all of it's life.) I wish there was a way to put people like that out of business! You can't not know that when you breed dogs as long as this breeder had been breeding. (Double negative, but you know what I mean).
So, anyway, please don't blame yourself for trying to treat your dog's allergies, what else can you do when they are miserable? And don't blame yourself for the Cushing's either. Anyone in this forum will tell you that you didn't do anything to give Apollo Cushings, because, like I said, if you did you would be one of the lucky ones, with a one hundred percent curable case. Okay? You are just unlucky like the rest of us, and it really sucks - but there was nothing you could have done to cause or to prevent it. It just happens, like any other kind of tumor - a lot of times there is no reason why. At least no reason that any human being has figured out yet. So God only knows, and I know He doesn't want you blaming yourself for something that you did not do.
Do you know if Apollo's tumor is adrenal or pituitary? Usually it is a adenoma in their brain - 85% of the time. And 15% of the people with a Cushing's dog are lucky enough to have an operable tumor on one of the adrenal glands.
I think guilt is a phase a lot of us go through. I wonder what if I would have fed him better food? Things like that, but trust me, please, it is just one of the many emotions on the rollercoaster you got on when you found out your dear Apollo has Cushing's.
Please let me know if there is anything else I can do to offer you support or help. Hug your babies, and rest assured that it is nothing you did or didn't do.
Love, Simon's Mom, Simon, and the rest of the pack ... we will keep you guys in our prayers. :)

[SavingSimon]

This is the first time I have posted to you. I really don't want to knock Science Diet as you say you have a lot of confidence in the food. I will tell you this much that I quit feeding Hill's anything years ago because of all the "junk" & fillers that they put in their food. In fact, when one of my pups developed lymphoma, the on-line lymphoma support group I belonged to referred to all of Hill's products a "science death". I would suggest you take a look at the following website which will give you ratings for a huge number of dog foods. They also have a detailed list of ingredients for each food.

http://dogfoodanalysis.com/

Debbie

Debbie,
Thank you for your kindness in letting me know how bad Science Diet/Hills is. I looked at the ingredients and truly was surprised. I think at one time (when I was a kid) they were a good company ... but things change. Shortcuts are taken, especially in today's economy and the rapidly changing world we live in. I would say I don't trust ANY pet food company anymore, and I have read a lot about how the food we feed our dogs is probably what makes them sick and not live as long or healthy of lives as they could live. I initially set out to be a Vet in college, and knew that there is little to no nutritional training for vets. It is sad, because of the things that so many pet food companies get away with. A lot of people are feeding their dogs roadkill and euthanized animals - it just makes me sick. So this takes me back to the guilt I mentioned to Apollos Mom - I really hope this isn't my fault for what I have been feeding my dogs. Has anyone tried the "Cushings diet" that is like the first thing you pull up when you search for Cushings disease in dogs? I went ahead and bought it when Simon was first diagnosed. It is basically just cooking him a lot of fresh vegetables, and protein like chicken. I am not a "cook" even for myself, so in my case, I think it was probably worth the money to get some recipes that most of you could probably come up with yourself. Just wondering if anyone else is going that route (cooking for their dog?) Simon loves carrots and broccoli (well, heck, right now he even loves cardboard) so I figure if I try to fill him up with vegetables at least he won't feel like he is starving all of the time (which is how he acts like he feels). Any warnings on things I should not cook for him (I know the basics and beyond when it comes to dog poisons that are fine for humans, like onions, raisins, chocolate, etc.) but I guess the question is are there some proteins that are better and easier digestable? I would guess chicken is good, and guess I can go by this guys diet - the only thing that bothered me was that some recipes have garlic in them, which I have read is toxic to dogs, so it makes me wonder how much he knows about what he wrote. :eek: I will try to be back tomorrow with a much more concise part two of Simon's test results - I realize now that I have already said a lot of what I started saying - I just haven't checked in for a while. I hope and pray everyone and their dogs are doing well. I know how much better it feels once you have a plan. :) Debbie, I have been reconsidering Science Diet since a little bit before I joined this forum, but then some vet (probably paid by Hills/SD wrote an article about ID being the best food available for dogs with Cushings, and it made me regress in my thinking. I was headed away from all premade dog foods, and more in the direction of cooking for my dogs, and giving them supplements. The only hard part with that is that two of my dogs are allergic to anything related to a bird. From eggs to feathers to chicken, turkey, you name it, and I am not sure if Simon has any food allergies, but maybe I should get him tested. I have a twelve year old female JRT that one vet told me was too old to have any food allergies, but it turns out she is one of the dogs allergic to all things bird - and of course her food allergies are identical to those of her son. So those two I can't give any kind of fowl, and not being too good a cook, it would be easier if I could cook one meal for all the dogs - but I am also considering just cooking for Simon. I was thinking that the tryptophan in Turkey might help counteract the effects of the cortisol. Has anyone tried using L-Tryptophan, or any tryptophan as a supplement to help with Cushings? It seems to me that it would be a very helpful, calming supplement ... I am curious if anyone has tried it or been recommended it by their vet. Thanks again Debbie for the kindly worded caution on Science diet - I kind of knew it in my gut even though I had a lot of confidence in it from the past, I have to remember that it is a different world than a little over thirty years ago, when I believe Science Diet probably really was one of the best choices on the market. Thanks for a well needed heads up! :)

[SavingSimon]

Any supplement that you are thinking about giving to your pup should be approved by your vet/IMS first.

Here is looong article about L-Glutamine:



http://www.scribd.com/doc/23752319/Role-of-Glutamine-in-Health-and-Disease

The "DVM" behind their names, it means...Doctor of Veterinary Medicine


As far as the CoQ10, I've read that a study was done in human patients with kidney disease, and giving supplemental CoQ10 decreases serum urea and creatinine. This is basically all I know about CoQ10.



Hypophysectomy is the removal of the pituitary gland, we have a member here, Gina with her precious pup Lucy, who has had this surgery done by a team of expert surgeons who are associated with Dr. David Bruyette. Dr. David Bruyette is a nationally known veterinary endocrinologist and the medical director of VCA West Los Angeles Animal Hospital.

Here are links to Gina and Lucy's Thread:

Lucygoo updates
http://www.k9cushings.com/forum/showthread.php?t=534

Lucygoo - Pit. macroadenoma, endoscopic transsphenoidal surgery, trans-oral approach:
http://www.k9cushings.com/forum/showthread.php?t=1009

Love and hugs,
Lori

Thank you Lori, for the info. I don't think that I would ever consider a Hypophysectomy for Simon, but I haven't read your recommended sites yet, and look forward especially to reading how this worked out for Gina and Lucy. I just have some hope that instead of removing the gland they could remove the micro or macroadenoma and that it wouldn't cause too much trauma, and that there isn't already too much damage to the gland. But that is probably wishing for a bit much, I realize that. I have heard of and read a bit about this approach, and it is generally discouraged so I am excited to read about Gina and Lucy because in some ways it makes a lot of sense, I guess it just depends on the adenoma. If it is totally destroying the gland anyway, then it makes sense to me. If it is just barely touching on it, then it seems like a bit radical of a procedure.
I will say this, I am going to continue to research until I find all of the answers that there are to be found and I am going to do absolutely everything I can for Simon including selling my house - going into debt - whatever it takes for him to have the best and longest life possible for him now that he has been diagnosed with this rotten disease. He has been with me twelve years now, he is the best friend I have ever known and he deserves the best care in the world - whatever I may have to sacrifice (as long as it isn't him). Of course, I realize someday I might be faced with that horrible decision, but I am just hoping and praying that it is several years from now. In the meantime he is getting all the love I can give him.
All I know about CoQ10 is that it is some kind of antioxidant and blood thinner helpful for high blood pressure and heart problems in humans. I think I will check what the holistic vet has to say about it, although her entire attitude about holistic medicine is unusual she said 'I'm fine with any supplement that makes the owner feel better, but I don't thinik they really make that much of a difference for the health of the dog". I was actually shocked since she is from India, and a certified holistic vet. She kind of had what was my attitude towards it until T.K. explained to me how Dr. Oliver's plan for Simon would work. Two supplements I am curious what Dr. Oliver would think of are CoQ10 (because several vets said that Cushings could cause Simon to throw a blood clot to his lung, which would kill him, and this supplement thins the blood) and tryptophan because it seems to me that it would kind of fight off the effects of the cortisol running through his system. And of course, I will check in to the glutamine I believe it is called that many people recommend. I will be back as soon as I can with a more clear outline of the test results and anything else I can find out about the questions I have mentioned tonight, but if anyone else has answers, I am always very open to hearing anything that has helped for someone else. Thank you all for being such a wonderful support to us.
XOXO to you all and to all your beloved Cushings babies, and your other pets as well. God bless you all.
Thank you Lori so much for all of the tips and pointing me in the right direction for more research.:)
Love,
Simon's Mom

[SavingSimon]

One last quick question before Simon, and the pack and I cuddle up for the night. On all three ultrasounds "sludge" was described as being on Simon's gallblader. I have noticed reading some of the other threads that some dogs have had gallblader attacks. I know this is EXTREMELY painful in humans but I also know how stoic dogs can be. How will I know if Simon is having a gallbladder attack? Is he likely to because of this "sludge"? And is there anything I can give him that will help clear the "sludge" up? "Sludge" just does not sound like a good thing to have on his gallbladder, but all the vets have just said that it's normal. Sometimes they frustrate me to no end. If it is normal then why do they bother mentioning it? I know it is not normal, I'm not that naive. Maybe they mean normal for dogs with Cushings. Whatever they mean I could use some pointers as to how to recognize and better yet how to prevent a GB attack. Thank you all, and goodnight and God bless.

[apollo6]

dear Simon's mother.
according to all findings it is PHD, both adrenal glands are similarly enlarged. The new IMO i am going to wants me to start Trilostane.
I insisted on a small dose, 10mg versus 30mg. Apollo normally weighs 9.8 to 10lbs. but has gained weight now is 10.6lbs. I am very strict about his weight because being a dachshund he has back problems.

I should be getting the Triolstane in a few days. Secretly I want it lost in the mail. That is how scared I am of starting him on it. Keep wishing maybe diagnosis is a mistake.
Imo says I don't need to do THE FULL ADRENAL/HOROME test at this time, (can do latter once cushing is under control?)because of tests I already did.
List of tests done:
Sept 16, 2009-blood panel
January 2010-ultrasound-abdominal (disc)
May 25, 2010-blood panel
May 28, 2010- (Pet Emergency & Specialty Center-La Mesa)
ACTH Stim Test
Blood pressure
Urinalysis-Antech
Urine Culture MIC
Ultra sound, Focal Abdomen (only gall balder- sludge )did not get any report?
Says I need to trust him, see last few posts on my thread.
God Bless

[SavingSimon]

:(Back to the numbers, I will try to tell more numbers and less story, since my posts tend to get lengthy. On March 2, 2010 Simon had a CBC in which his Neutorphil SEG was 80 (slightly high) and Lymphocytes were 10 (slightly low). Those were the only flags on his blood work and the vet did not feel they were significant enough to mention. I do not know what those results mean. He also had a Urinalysis in which the gravity was 1.042, and not dilute, so I was told it was normal, though looking at the results I see something else the vet did not mention, and that is a flag by BILIRUBIN that says 1+/Negative/HIGH and in the section where it says BLOOD it says TRACE/NEGATIVE and is flagged H and PROTEIN TRACE (<100mg/dL) and after that it says "NEGATIVE TRACE" I am not sure if that means there was a trace of blood in his urine or not, but they did think since it was dense, he did not have the drinking and frequent urination that so often goes with Cushings. (I told them that he didn't). I was told all of those results were "normal". March 3, 2010 another ultrasound. I am sure every dog has different size organs, so rather than give you the measurements from this ultrasound, I will give you the summary "The liver is diffusely hyerechoic and contains multiple hypoechoic nodules of varying size the largest of which is 1.61 cm. None of the nodules disrupt the normal hepatic borders. Mildly enlarged adrednal glands [my note here, the rt is 7.7 mm and left is larger - 8.8 mm]." and then "Ultrasound Assessment: the diffuse hyperechoic liver could be consistent with a steroid hepatotopathy. The hypoechoic nodules likely represent benign nodular hyperplasia.l The mildly enlarged adrenal glands could be normal for dog, hyperplastic secondary to stress from underlying disease process, or consistent with pituitary-dependent hyperadernocorticism"
Those tests were done by another highly recommended internist and confused me more. I think I was frustrated to the point of tears when the vet said "I could send his bloodwork in to the University of TN for you. I am not really convinced your dog has Cushings, but it's another tool we can use to find out." So, okay March 26, 2010 the lab results from Jack W. Oliver, DVM, Ph.D. are in - and I do have contact information here if anyone wants it, although I was told not to use it by my vet, so I'm not sure if I should give it out - any input from Lori on that would be appreciated.
The way this lines up is:
TEST/ RESULT/ Normal Range/ RESULT (post ACTH)/ Normal Range
Cortisol/21.9/2.0-56.5/320.8/70.6-151.2
Androstenedione ng/ml/ 0.20/0.05-0.36/1.50/0.24-2.90
Estradiol pg/ml/ 103.3/23.1-65.1/97.8/23.3-69.4
Progesterone ng/ml/ 0.21/0.03-0.17/2.70/0.22-1.45
17OH Progesterone ng/ml <0.08/ 0.08-0.22/0.73/0.25-2.63
Aldosterone pg/ml/116.2/11-139.9/506.2/72.9-398.5

I was going to try to color code the above so it is easier to see Simon's results and I was going to put in red the ones above normal, however that is really time consuming in this format, as is posting all of these test results in the first place. I hope that will be easy enough for everyone to read. It is important to note that because of these results, Dr. Oliver said I should NEVER use Trilostane to treat Simon. the reason, I believe is in the following quote from the "Treatment Option Considerations" sheet that accompanied the test results. "7) TRILOSTANE ... NOTE: Trilostane always increases 17-hydroxprogesterone (some cross-reactivity with pregnenolones in assays??). and frequently increases estradiol and androstenedione as well. Lysodern may be preferred for Atypical Cushing's cases." This is in bold and underlined, as well as a warning about switching from Trilostane to Lysodren, and how that should be carefully done. In these results there is also a website some may find helpful, www.vet.utk.edu/diagnostic/endocrinology.
Also, interesting I just noticed that there are "MELATONIN IMPLANTS" available for dogs and ferrets. www.melatek.net Thhe effects last from 3-4 months.
To answer Apollo6's Mom, there is further information on Dr. Oliver and his team at the UofTN at their website that I listed above. I do have Dr. Oliver's email, as well as phone, and direct contact information, if anyone wants it please send me a PM.
I am wondering here if this was a "complete adrenal panel" or not, because it says "Several patterns of hormone increase occur, so doing the comlete adrenal panel is advised" Actually, to answer my own question yes, six hormones tested are a full panel

I am currently waiting for the results from the second blood panel sent out to Dr. Oliver, the results should be in any day, and should be intesting since Simon has been on the flax hull lignans in between these two tests.

I am concerned about the trace of blood and the trace of protein that was found in Simons urinalysis, these things were not mentioned to me by Dr. Matz probably because I was so stressed I could tell he really didn't want to answer all of my questions. Not a vet with a good bedside manner.

I will now end this post because I just got off the phone with T.K. with very upsetting news. The test results are in. They change everything, so I will start a new post, with tears running down my face.
:(

[apollo6]

I am praying for you.

[SavingSimon]

I just got the results back from Simon's second testing at the U of TN (in which almost every number went up significantly). Unfortunately, the name of his disease just changed from "atypical Cushings" to" full-blown Cushnoid" according to T.K.after speaking to Dr. Olvier. I am sick and heartbroken, and on top of that, I have an emergency at work. So I just wanted to finish that, I will post his second TN test results when I get back from work. The plan now is to start him on Ketoconazole. Immediately, as T.K. says we have slim choices. Trilostane not being an option means that a very corticaliac treatment is what is going to be the final option if the ketoconazole doesn't help. I still actually think he has "atypical" Cushings, I think it just became more real to T.K.. I can tell Simon hasn't been feeling as good. I am SO SCARED right now, you all, I'm petrified! I feel like I am losing Simon a whole lot faster than I thought it would be. I HATE CUSHINGS DISEASE!!
A quick question - a little out of the box - wondering if they have ever used the drug Lupron in treating atypical Cushings. What if he didn't have any hormones for the cortrisol to bind to? Would it be more destructive, or less? Lupron wipes out hormones. Lysodren destroys the adrenal cortex. I wonder if there is any research using a drug like lupron in dogs with Cushing's disease. I'll do more research on that when I get home. I had to be on Lupron for six months because of my hormones, it kind of makes sense to me, but maybe not because the cortisol would somehow be more destructive. Is cortisol considered a hormone, or is it a steroid? Or something else altogether? The weird thing is Simon's cortisol isn't all that high, but his other hormone numbers just took a huge leap up. I'll be back...
I am T.S. Dena (TERRIFIED SICK) and right now I hurt for all of us and these awful catch-22 type choices we have to make becauseof this @#$#@%$#% disease! Love and prayers for all,
T.S.Dena & Simon

[SavingSimon]

I am praying for you.

Thank you, I can tell. I can feel it, and you and Apollo are in my prayers too. You are a truly dear friend - faster than Cushing's! Everyone here helps me keep my sanity, God bless you all and your four legged shining stars of love! And may He help us all through this dreaded time in their lives and ours.

XOXO - gotta get running to work, I'll be back in a couple of hours if I can keep myself together. I'll bring Simon with me so I don't totally lose it and run off the road crying. Prayer helps a LOT! TY!!!! {{{{{{{{{{{{}}}}}}}}}}}}}

[SavingSimon]

dear simon's mother.
According to all findings it is phd, both adrenal glands are similarly enlarged. The new imo i am going to wants me to start trilostane.
I insisted on a small dose, 10mg versus 30mg. Apollo normally weighs 9.8 to 10lbs. But has gained weight now is 10.6lbs. I am very strict about his weight because being a dachshund he has back problems.

I should be getting the triolstane in a few days. Secretly i want it lost in the mail. That is how scared i am of starting him on it. Keep wishing maybe diagnosis is a mistake.
Imo says i don't need to do the full adrenal/horome test at this time, (can do latter once cushing is under control?)because of tests i already did.
List of tests done:
Sept 16, 2009-blood panel
january 2010-ultrasound-abdominal (disc)
may 25, 2010-blood panel
may 28, 2010- (pet emergency & specialty center-la mesa)
acth stim test
blood pressure
urinalysis-antech
urine culture mic
ultra sound, focal abdomen (only gall balder- sludge )did not get any report?
Says i need to trust him, see last few posts on my thread.
God bless

please wait if you haven't had the tests done by the u of tn - and when i get home trazee needs to talk to you - i will figure out how to get you two together!!! Trilostane is not as safe as they are telling you and if your baby is atypical it can kill!!!!!!!!!!!

[Harley PoMMom]

Hi Dena,

First, take some breaths and breathe...a little more relaxed? ;):) We do have another member here whose dog is taking ketoconazole, melatonin and the flax hulls and is doing well on this treatment plan. :)
Here is a link to their Thread and a particular post: Update on Zoe Claire "Atypical Cushing" http://www.k9cushings.com/forum/showpost.php?p=25518&postcount=67
post: http://www.k9cushings.com/forum/showthread.php?t=620

When you get time, please do post Simon's UTK test results and the Dr. comments at the bottom of the page.

Now concerning contacting Dr. Oliver, I have emailed him many times and he usually always responded back very quickly and was always very courteous in his emails. On the forum here we do provide contact information for Dr. Oliver in one of our Threads: http://www.k9cushings.com/forum/showthread.php?t=1896

We are here for you, Dena, you are not alone, remember that.

Love and hugs,
Lori

[StarDeb55]

I just read on another thread that Dr. O is apparently on vacation until after the 4th of July, so responses may be delayed.

Debbie

[apollo6]

hang in there . This disease sucks. we have to be strong for our little ones.
prayers for you and Simon
Sonja and Apollo

[SavingSimon]

:(Back to the numbers
The way this lines up is:
TEST/ RESULT/ Normal Range/ RESULT (post ACTH)/ Normal Range
1. Cortisol/21.9/2.0-56.5/320.8/70.6-151.2
2. Androstenedione ng/ml/ 0.20/0.05-0.36/1.50/0.24-2.90
3. Estradiol pg/ml/ 103.3/23.1-65.1/97.8/23.3-69.4
4. Progesterone ng/ml/ 0.21/0.03-0.17/2.70/0.22-1.45
5. 17OH Progesterone ng/ml <0.08/ 0.08-0.22/0.73/0.25-2.63
6. Aldosterone pg/ml/116.2/11-139.9/506.2/72.9-398.5

I was going to try to color code the above so it is easier to see Simon's results and I was going to put in red the ones above normal, however that is really time consuming in this format, as is posting all of these test results in the first place. I hope that will be easy enough for everyone to read. It is important to note that because of these results, Dr. Oliver said I should NEVER use Trilostane to treat Simon. the reason, I believe is in the following quote from the "Treatment Option Considerations" sheet that accompanied the test results. "7) TRILOSTANE ... NOTE: Trilostane always increases 17-hydroxprogesterone (some cross-reactivity with pregnenolones in assays??). and frequently increases estradiol and androstenedione as well. Lysodern may be preferred for Atypical Cushing's cases." This is in bold and underlined, as well as a warning about switching from Trilostane to Lysodren, and how that should be carefully done. In these results there is also a website some may find helpful, www.vet.utk.edu/diagnostic/endocrinology.


I am currently waiting for the results from the second blood panel sent out to Dr. Oliver, the results should be in any day, and should be intesting since Simon has been on the flax hull lignans in between these two tests.
:(

I trimmed the quoted post a little so I can go ahead and post the verbal test results I received yesterday here, the normal range obviously remains the same. I wanted to put part 3 here for now, since I currently only have the results from the U of TN over the phone from Simon's vet, T.K., which I received yesterday. He started the conversation letting me know "this is not what we expected" I really had no expectations so I knew bad news was coming. Not only that, but he called when I was on the other line finding out about horrible lack of common sense mistakes being made at my business, so I told him "I need a second to get myself out of "rage" mode. He said," Yes, you do, I will wait ..." which made me also realize I was in for a blow. I have never switched emotional gears so quickly. Anyway, here are the results that are about three months later, after Simon has been faithfully taking the flaxhull lignans, melatonin, Sam-E, and milk thistle faithfully. He is also scheduled for his fourth ultra-sound tomorrow. I will post all results and progress as - and if I am able to, and fill in any blanks, as well as do my best to answer any questions anyone has.

Real quick, here is the first full adrenal panel again:
TEST/ RESULT/ Normal Range/ RESULT (post ACTH)/ Normal Range
1. Cortisol/21.9/2.0-56.5/320.8/70.6-151.2
2. Androstenedione ng/ml/ 0.20/0.05-0.36/1.50/0.24-2.90
3. Estradiol pg/ml/ 103.3/23.1-65.1/97.8/23.3-69.4
4. Progesterone ng/ml/ 0.21/0.03-0.17/2.70/0.22-1.45
5. 17OH Progesterone ng/ml <0.08/ 0.08-0.22/0.73/0.25-2.63
6. Aldosterone pg/ml/116.2/11-139.9/506.2/72.9-398.5
------------------------------------------------------------------------
For the second panel, I will just post the base result followed by the post result in numerical order, as mentioned, the normal ranges above remain the same.

BASE/POST
1. 38.9/297.2
2. 1.76/>10 (in other words off the chart)
3.80.3/86.2
4.0.17/3.10
5.0.18/3.24
6. 370.8/672.1

T.K. asked Dr. Oliver if the results were higher almost across the board because Simon was tested too early. Dr. Oliver said no.

Again, this most certainly confirms that Trilostane is NOT an option for Simon at any time. This was re-emphasized by Dr. Oliver.

One unusual point of interest is that his cortisol stayed closest to the same in both tests.

So there we have where Simon is now. He is starting ketoconazole today, which I am familiar with as an "older" Valley Fever medication, so I have no worries other than how effective it will be at Cushings - it certainly cured all cases of Valley Fever except for one that was not caught in time. If the Ketoconozale is not effective, then we will start our last option, which is Lysodren, and T.K. explained it will be given to Simon only once a week or twice a week, and the trick will be finding the balance. He assures me he has thirty five years of experience with lysodren, and that it is very effective at reducing cortisol, but the price you pay is the cortilactic effect of it basically destroying the adrenal cortex. That makes me want to explore other options and research them thoroughly before we get there. I am still curious if any research has been done with the drug lupron on Cushing's dogs, if anyone knows of anything like that. Of course I will research it myself and post my findings but I just thought maybe someone reading has knowledge or experience of whether or not it has been tried in dogs with Cushing's - any links would be greatly appreciated.
Again, I thank you all for being such a supportive and caring group. I keep everyone here and their dogs in my prayers, please let me know if there is anything else I can do to help you, or support you. I am very good at research - it is what I ended up liking the most in college, and I am a good listener, prayer, and friend.
I apologize again, for any disagreements I may have caused, I only can say that I was being honest and felt obligated to share what I have been told. I am not here to stress any one out - I just care for you all and your dogs too, and hope I can be helpful and not divisive, that never was my intention. I want to be supportive and I want to share what I have learned on my journey with Simon so far in hopes of helping, never harming. I do sincerely apologize for any undue stress I caused, or any unnecessary concerns. I would never express anything controversial if I wasn't deeply concerned myself, I assure you all - I really need this forum, and Simon does too. Your support is, as others have said, PRICELESS.
Thank you all for your patience with me through this most difficult journey I have ever been on with any dog in my life. Having rescued several hundred Jack Russell terriers, and witnessed all sorts of human cruelty, I can honestly say that the stress of dealing with Cushing's has taken a greater toll on me than anything else I have ever been through. Probably because Simon is my most dear son and best friend in the world. I lost my human best friend last year to a slow and painful death, and facing losing Simon is something that I did not expect to have to do for at least four to six more years. I am not ready, not that I ever would be, but I really don't think I can handle this alone, and I am very grateful for you all and your empathy, understanding, compassion, and wisdom.
Love and prayers being sent out from us for all here,
Simon's Mom who hopes she is "SavingSimon"

[jrepac]

Hi Dena,

First, take some breaths and breathe...a little more relaxed? ;):) We do have another member here whose dog is taking ketoconazole, melatonin and the flax hulls and is doing well on this treatment plan. :)
Here is a link to their Thread and a particular post: Update on Zoe Claire "Atypical Cushing" http://www.k9cushings.com/forum/showpost.php?p=25518&postcount=67
post: http://www.k9cushings.com/forum/showthread.php?t=620

When you get time, please do post Simon's UTK test results and the Dr. comments at the bottom of the page.

Now concerning contacting Dr. Oliver, I have emailed him many times and he usually always responded back very quickly and was always very courteous in his emails. On the forum here we do provide contact information for Dr. Oliver in one of our Threads: http://www.k9cushings.com/forum/showthread.php?t=1896

We are here for you, Dena, you are not alone, remember that.

Love and hugs,
Lori

From those cortisol "post" results, the level seems QUITE high, no? I'd suspect they want to give Keto to get the cortisol down QUICKLY. It's my understanding that keto (if tolerated by the pet) can drop cortisol very quickly (?)...

and yes, there are a few cases of it being used out there...as an alternative approach....if it works for some, why not?

I'm in the same "boat", treating w/generic anipryl...so far, so good :)

[SavingSimon]

Dear jrepac,
All of Simon's test results were alarmingly high to me, and we were expecting them to go down with the melatonin and flax hull lignans. I don't know if this means that his tumor is growing, the disease is progressing more rapidly than I originally thought, or what, but I do know bad news when I see it. It has been a heck of a day. I've felt sick ever since I got those results yesterday (I have never had a migraine hit me right while I was getting bad news until yesterday). Then today, I had to take another one of my dogs to the vet, and when I stopped to pick up Simon's RX after, I left him and CeCe in the car with the AC running, figuring I'd be back in a couple of minutess, which I was, but the silly dogs locked me out of the car. So while I was standing in the AZ heat, waiting for triple A and getting ready to break the window, I realized it was open a crack and cut a branch off some desert plant and stuck it in the window and unlocked the car just as the triple A guy arrived (oh, I forgot to mention I lit my shirt on fire on the way into the pharmacy - I smoke and the end of my cigarette had fallen into my pocket - so I'm trying to put out my smoking hot chest (not in the way I'd like that to mean) :-) in the middle of the pharmacy. And while I was waiting for the triple A guy in the 110 degree AZ sun, all of the $77 pills I had compounded into chewies, melted into one big lump. At first it looked kind of okay - I was able to give him one, so Simon started ketoconozale today, but I think I am going to have to buy it again tomorrow. The pharmacy said the heat didn't ruin the mecicine, but I am not taking the slightest chance since it is two months worth.
Then I felt like I was going to be sick, so I headed home instead of back to work, and got in the door to a call that they needed me at my store. But, just before I left, my Mom called me crying saying that a doctor just told my sister that she needs to get a complete hysterectomy by an oncologist because he thinks she has ovarian cancer. I actually have a lot more hope for my sister at this point than for Simon, because I was diagnosed with stage four ovarian cancer (CA-125 is supposed to be 1-35 and mine was 6, 338 - one for the record books) and I had HUGE tumors on both ovaries, just like my sister does, but it turned out when they did the surgery that I just had the worst case of endometriosis the doctor had ever seen. I really believe (and I am praying) that the same is the case for my sister. I lost my best friend to liver failure last year at this time, and I honestly do not know how much more I can take. But I have faith. God works in mysterious ways. Just before Simon developed Ciushing's disease, several neurologists thought my five year old nephew (same sister's son) had a brain tumor. I remember praying "Lord, if someone has to have a brain tumor, please give it to me instead of Josh, or since You know that I don't hold myself in that high of regard, if it is your will, I offer you my most precious, valued son, Simon, in Josh's place". I can't say that is what happened - I don't know. But that is when the neurologists told my sister (after many tests) that Josh was just born with a brain "anamoly" that would likely never effect anything, and was not cancer, or anything malignant. As I recall, it was within the same week of that news that I found out Simon might have Cushing's disease. At first I thought that it was something that was not really serious, and that it could be reversed. I had no idea that it was basically a tumor in his brain. Maybe it is a coincidence, or maybe I am being asked if I really will sacrifice my "son" for my sister's .... I have no human children, only my dogs. I really have no one I can count on or that is always there for me period, other than my dogs. And Simon is my most important - he is the dog who changed my life in so many ways, the one who's heart beats with mine - I reallly and truly hope that though he obviously has this horrible disease called Cushing's that he will be with me many more years in the future. All of my friends have Jack Russells that live to be at least 18 years old. I hope Simon gets a happy and comfortable six more years (at least). I need the ketoconazole to work, because our next and only option after this is Lysodren.
Thanks for listening about Simon's Mom's bad day.
Thank you jrepac for the encouragement, it means a lot!
Love and prayers for you and yours,
T.S. (Terribly Sick) Dena and Simon and pack

[SavingSimon]

Are there any other of Simon's test results that I should have posted? Tomorrow is ultrasound number four. I know the disease is taking a toll on his liver - i just hope and pray that I don't have the same radical changes for the worse on those results.
This is such a scary thing we are facing, when I am reading any of your threads it is like we all have this same looming fear over our heads every day, with every test, with every new thing someone suggests we do. I don't think I have ever been a member of a forum of people who love their dogs more than this one. My sincere apologies to anyone that I caused more fear, it wasn't my intention, but it ended up being the result, and you have no idea how sorry I am. God bless you all and your beloved dogs - this entire group is always in my prayers. I pray God will lead us all to do what is best for the dogs we love so much. I believe he will.
Love,
SavingSimon

[StarDeb55]

Dena, you have commented several times that lysodren may be a last resort. If you have to use lysodren, please do not fear it. I have successfully treated 2 dogs, now, with lysodren. Harley has been on lysodren since he was diagnosed 2 years ago at 13 & is doing well. The key to using either lysodren or trilostane is that you have a vet who is following standard protocols for the drug for both dosage & follow-up testing.

Personally, I would be more worried about using keto because of the liver toxicity of the drug. I'm sure that your vet will be monitoring Simon's liver function tests closely as his treatment progresses.

Debbie

[SavingSimon]

Dena, you have commented several times that lysodren may be a last resort. If you have to use lysodren, please do not fear it. I have successfully treated 2 dogs, now, with lysodren. Harley has been on lysodren since he was diagnosed 2 years ago at 13 & is doing well. The key to using either lysodren or trilostane is that you have a vet who is following standard protocols for the drug for both dosage & follow-up testing.

Personally, I would be more worried about using keto because of the liver toxicity of the drug. I'm sure that your vet will be monitoring Simon's liver function tests closely as his treatment progresses.

Debbie

Dear Debbie,

My vet and Dr. Oliver have said that in Simon's case Lysodren should be the last thing we try, that it is our last option, that Trilostane is absolutely ruled out in his case due to his hormone levels after the first full adrenal panel, and especially now after the results from the second. That left us with a couple of options they did not think would be helpful at all, and two that they think will, and rank in order of danger to Simon's health as a whole in the order that he will be taking them.
But, yeah - heck yeah - I am scared of the ketoconazole because his liver has been looking worse on every ultra-sound. (To my untrained eye, but also there are notes mentioning more problems each time, that they consider "slight") - to me every problem is huge and bad especially if it is new.
I have heard from many people who have used lysodren successfully like you have. I have heard the bad and good of all of the treatments, talked to other owners, and several vets on the phone and in person for what probably adds up to weeks worth of time. I am going to go with what the vets are telling me that I should do in the order they feel I should do it, and I appreciate your encouragement not to be afraid of lysodren and the warning about the ketoconozale - just as I appreciate every owner's opinion and input that I have received. It is just overwhelming. What works for some dogs, and some owners swear by has been the detriment of others, and that is what has me, and I am sure so many of us here that are not yet comfortable in a treatment plan scared to death. It is that nagging "what if I make the wrong choice?" that has me on the verge of a complete breakdown.
I just want what is right for Simon, and as T.K. said "it isn't black and white no matter how much you and I want it to be" which is why I call this thread 'Simon's Grey Zone".
Maybe the ketoconazole melted today for a reason. Maybe I should skip it and jump to the last option for Simon,which is Lysodren. It scares me also to get to a place where there is a last option - I mean if it doesn't work for him, what then? (Obviously that's rhetorical - the 'what then" is what I am afraid of too!!!)
I do hate things that are not black and white, that don't have clear answers and are in the grey zone.
I am not sure what else to say - I am afraid to see what his liver looks like tomorrow and he has only taken one keto pill that probably was ineffective due to the melting in the sun today.
Looks like another sleepless night for me .... which is nothing new ever since Simon's diagnosis.
Thank you for letting me know how lyso has helped your babies that is another encouraging story out of quite a few, and as for letting me know what you were worried about with the keto - I was there way ahead of you. ;) believe me. I am just trusting the vets that Simon has been blesssed with all his life, and decades of my own dogs and hundreds of rescue dogs give me a lot of confidence in his vet, T.K. and all the miracles that he has pulled off with so many dogs over the years. People here seem to have great confidence in Dr. Oliver who T.K. is working very closely with and Simon has two other vets that are on the case and all in agreement when it comes to his treatment plan. I am trusting them, and I am trusting God as much as humanly possible (for me) but I still am scared to death. I'm not sure what else to say ... I think maybe I don't express myself right sometimes, lyso is the last resort because, it is the last option. And the Vets are in agreement that we are going from least dangerous for Simon to most dangerous in his case - I am just going to have to trust them on that, they are the experts, and it does give me comfort that all four of them are in agreement. I am not sure what else to say except, as always, I am
T.S. (Totally Scared) Dena who prays she is "SavingSimon".

[AlisonandMia]

Hi,

My little Mia was a Lysodren dog. I live in Australia where the UTK testing is not available (I've since heard of someone here managing to get it done though) - and anyway neither I nor my vet had ever heard of it at that stage. So when Mia's treatment started we had no idea what other hormones were out of whack along with cortisol or even that anything other than cortisol could be an issue.

We (vet and I) discussed the options - he wasn't keen on ketoconazole because of the risk to the liver and because it is not always well absorbed and therefore isn't necessarily so effective. (Absorption seems to depend on gut pH and therefore can be affected by diet, I believe.) This left trilostane and Lysodren: The vet was one of those vets who insisted that the owner was well up on all the issues before treating - he didn't believe it was safe to use cortisol-lowering meds if the owner didn't have a good understanding of things. For this reason he gave me all the info he had got for himself (he was not really experienced with Cushing's as many people don't want to try to treat) and we decided that Lysodren actually looked to be the best bet - the old, tried and true treatment -v- something less known and still being learnt about.

Mia's treatment went very, very well all in all and it was like a miracle to see her go from looking like a frail, geriatric wreck with a big swollen liver, a voracious appetite and a severe bed-wetting problem to being a trim, fit, muscled happy little dog again within a couple of months - and I could see big improvements from the day her cortisol was at a healthy level. She was only 10 years old when diagnosed. We expected her to go for many, many years but unfortunately she passed away about two years after diagnosis because of a brain tumor totally unrelated to the Cushing's. But until that time her physical health and vigor was second to none - my teenage kids envied her her energy levels even though in human years she would have been about 65 years old! She had a great last two years thanks to the Lysodren she took.

I've seen a few dogs here taking ketoconazole - not many so it is hard to judge, really. I will say, however, that I have come to like keto more as I've seen it help some of the dogs here - usually it is used in the more atypical dogs rather than those with really high cortisol though.

I am thinking that the reason that Dr. O may be favoring keto over Lysodren (if he is) with Simon is that Simon's estradiol levels may be quite high. Keto can be expected to lower estradiol (as long as it is absorbed and tolerated ok) whereas Lysodren may or more may not help with that particular hormone - depending if the source is adrenal or not. Estradiol is can be produced by tissues other than the adrenals and Lysodren only works on hormones produced by the adrenals.

I would myself be more nervous about ketoconozole than I would be about Lysodren, because of the theoretical risk to the liver. Most dogs seem to handle keto just fine - it just seems that some rare individuals don't - and it's impossible to know beforehand. This is why monitoring the liver function is so important when using ketoconozole. Lysodren is very safe and effective (aside from possibly not helping with estradiol) if used as per protocol - the horror stories almost invariably come from when the correct protocol of dosing and testing is not followed. ( I get the impression that your treating vet has not used Lysodren before and/or isn't comfortable with it?)

If one day I have another Cushing's dog I would go with Lysodren again.

Try not to stress out - you will find the right treatment for Simon and there is no reason why he can't live out his normal life span as many treated Cushing's dogs do. The course of Cushing's treatment, like true love, doesn't always run smooth - but if proper protocols regarding the med you use are followed and owner and vet are alert and know what to look for, a disaster really shouldn't happen - more just some little hiccups here and there maybe. I was thinking recently that although my dog had a couple of little glitches (cortisol too high (Cushing's symptoms came back at one point) or cortisol a little low - easily remedied within the hour with a little prednisone) I really believe that if I could have asked her she would have said she suffered more when she was spayed (no complications) than she did during the entire time of her Cushing's treatment.

Alison

PS: The unhappy-looking liver will be a result of it having to work hard to metabolize all the cortisol and other steroid hormones that Simon's adrenals are producing. When the liver has a lot of work to do it gets big - just like a muscle does. But the good thing is that the liver is an immensely forgiving organ and can be expected to eventually return to a normal size and function once the hormone levels are brought down by treatment.

[addy]

I have insomnia, have had it for years and since Zoe's diagnosis it is really bad. I find myself too emotional and not being able to cope. So i figured if I am to help my Zoe, I need to help myself first. When I go for too many days without sleeping I open a drawer (I mean really open a drawer and I tell Cushings "Get in the #$#? drawer!!! I don't want to see you again for a few days!" I say it OUT LOUD. Then I try to ignore Zoe's rat tail and coat and think of her beautiful face and live in the moment with my dog and forget Cushings for a few days. After a few more hours sleep I feel calmer, stronger and continue on until Cushings consumes again and I go too many nights with 2 hours of sleep.

My point is, we have to take care of us, do whatever you have to to take care of you so you can save Simon. It is okay to put Cushings away for awhile until another day :)

Cushings will not defeat you. Keep telling yourself that. Take one minute to smile at your dog and live in the moment. I know you can even though I know only too well just how hard it is.

We talk alot about how to help our dogs. We need to talk about how to help us too.

Addy
Zoe and Koko's Mom

[apollo6]

like
Andy and Simon's Mom. I am not sleeping, keep wishing this is just a dream.. I have allot going on in my life also, taking over more responsibilities for my 78 year old mom, struggling in our business to just pay our payroll, wondering if we'll be in business by the end of the year, my own health issues. Apollo , all 10lbs of him was my steady constant. Every day it seems he has another sore, bruise , cut from no where. Seeing the muscle weakness in his hind legs, the sweet little face getting bony, the rat's tail. I am obsessed with cushing day and night. But I know if I don't take care of myself, I can't be there for Apollo.
I am praying for both of you and everyone.
I have the IMO, now my regular vet and my holistic/acupuncture vet in the loop. The reason I have the holistic was of Apollo's back problems and changing his diet and getting off certain medications.

[sunimist]

First of all I agree with what Alison said and she gave you some very valuable information.

I can truly relate to the feelings you guys have....we all can, but we have to bite the bullet, pull up our britches and find the determination to make our babies better. That's not easy I know, but that is one reason we are here..to help and encourage you. It took me a few months to gather my senses and learn all I could but when I did, there was no turning back and I actually was very proud of myself for being in control again.

My Misty was 7 years old when diagnosed with cushing disease, and after much testing and several vets, we opted to treat with Lysodren. Sure it was challenging but anything worth doing is challenging. After a while, you gain your confidence and are so happy to see the changes, that it just becomes a way of life.
Misty lived over 7 years with cushings, and she had some other complicated issues also. She went to Rainbow Bridge July 24, 2009 at the age of 14 years 4 months.

Just wanted to share another success story and help you understand that cushings really is a treatable disease. :)

Hang in there! It will get easier.

Shelba and Suni

[labblab]

Hi Dena,

I know you have so much going on right now, but I'm hoping that you'll soon be checking in with us again. It sounds as though Simon was due for another ultrasound last week, so we'll be anxious to hear about those results.

Just like Shelba said, please try to hang in there!! I know that can be a very hard thing to do, when there is so much information to digest and so many decisions to be made. But just remember, you can come here any time to vent or to discuss or just to "talk." We will be here for you and Simon.

Hoping to hear from you soon,
Marianne

[apollo6]

We are all praying for you and Simon.

[Squirt's Mom]

Hi Dena,

First, a very belated welcome to you and Simon!

Honey, you sound so much like me when my Squirt was first diagnosed. I heard that word "Cushing's" and the tone of my vets voice as she explained it to me...and my little world went bananas! :eek: Those first few months were a complete nightmare...not just because of the worry I now had for her health but also because of some of the things people had said to me in my quest for help. I was absolutely terrified every second of every day; I cried, screamed, prayed, bargained, you name it! Then I found this wonderful bunch of folks here and life for us began to make sense again.

It has been over 2 years now - granted there have been some tough times, but Squirty is doing fine today. She is Atypical. A tumor was found on her spleen and when it and part of the organ were removed, her cortisol returned to normal but the intermediates remained elevated.

I was so scared of Lysodren I had decided that would not be a drug I wanted to use on her unless nothing, nothing, else worked. She had every test available, at least once :o , just to be sure what we were dealing with. That is when the tumor was found and the elevated intermediate hormones were diagnosed. If I had it all to do over again, I would approach this the same way....test, test, test and take the time to be sure what the problem was before any major drugs were used.

As time has passed and I have learned more, Lyso no longer scares me. In fact, I am an oddball in that Trilostane scares me much, much more than Lyso does. :rolleyes::o If the day comes that Squirt needs the Lyso to control the intermediates, then I will not hesitate to get her on it. BUT...no way I could tackle that without the loving support and exceptional knowledge and experience of our K9C family...now yours and Simon's family too!

It is strange to say, but Squirt's diagnosis literally saved my life. Just a couple of years before I had experienced a tragic loss in my life, one I was finding myself unable to cope with; I was losing hope, will, and desire. Darkness was my constant companion. When she got sick my life once again had a purpose, a reason to keep going one more day. I have wondered if she was "sacrificed" in order to bring me back for some reason but I know that is not how things work. Her Creator and mine does not cause suffering in one to save another. But I do believe things happen for a reason, and Heaven knows, I have been really questioning the reasons for things lately. At times it is most difficult to see the positives but they are always there, whether we can see them just now or not.

Among the greatest positives to come of these last 2 years or so are the friends we have made all over the world. Friends who love their animals as I do, who go to great lengths to help them, who see them as family...and who are always there any time for any reason. They have held me up when nothing else could have; they do today and I know they will tomorrow.

Dena, what you are feeling is completely normal. It is simply a manifestation of the deep love you have for your son and the concern you feel for him. But don't let it take you down so far you can't see your way back up. Reach for us and you will find many, many hands reaching back with love and strength. You are NOT alone, ever.

Keep your chin up, honey,
Hugs,
Leslie and the girls - always

[jrepac]

Hi,


I am thinking that the reason that Dr. O may be favoring keto over Lysodren (if he is) with Simon is that Simon's estradiol levels may be quite high. Keto can be expected to lower estradiol (as long as it is absorbed and tolerated ok) whereas Lysodren may or more may not help with that particular hormone - depending if the source is adrenal or not. Estradiol is can be produced by tissues other than the adrenals and Lysodren only works on hormones produced by the adrenals.

I would myself be more nervous about ketoconozole than I would be about Lysodren, because of the theoretical risk to the liver. Most dogs seem to handle keto just fine - it just seems that some rare individuals don't - and it's impossible to know beforehand. This is why monitoring the liver function is so important when using ketoconozole. Lysodren is very safe and effective (aside from possibly not helping with estradiol) if used as per protocol - the horror stories almost invariably come from when the correct protocol of dosing and testing is not followed. ( I get the impression that your treating vet has not used Lysodren before and/or isn't comfortable with it?)



UTK is now recommending a "low dose keto" treatment, in which keto is combined with melatonin and lignans; I am considering that option, but, as you say, keto is hard on the liver. They suggest that the lower dose of keto, in tandem w/the melatonin and lignans, is still effective with much less risk of liver damage.

re: Lyso, I have to disagree with you, I am sorry; it is a very strong drug w/risks attached that must be understood. And, you can follow the "protocol" to a "T" and still have problems. That's the risk you take. Been there, done that...never again.

[sunimist]

Wouldn't it be wonderful if every dog that was diagnosed with cushings disease had a standard protocol for treatment and one drug that would sucessfully control it? Then we could have a definite and set protocol that would be right for all of them. Unfortunately that's not the case and each dog must be treated with the treatment/drug that targets the specific type of cushings diagnosis (pitituary, adrenal, atypical) and one that will produce a successful outcome for that particular dog. To repeat what is so often said to remind us, every case is different.

When my girl was diagnosed with pitituary dependent cushings, and before we found our "angel vet", our old vet who was inexperienced and afraid of treatment prescribed Ketoconazole for my baby and she could not tolerate it. I then learned that a large percentage of dogs cannot tolerate it and in her case, it only made her sicker. In other cases, it might work great. We went on a mission to find a doctor who was knowledgeable and experienced in treating cushings disease, and that was the single most important thing we ever did.

My girl was a very sick little girl and had it not been for an experienced and caring vet, no telling where we would have ended up. The doctor highly recommended Lysodren as the treatment that would get my baby back to her healthy state and taught me not to believe, or fear, all the bad raps about the drug. With her guidance and the support of the great folks on the old cushings forum, we became one of those many Lysodren "success stories".

Hope this makes you feel a little better. We are here for you.
Keeping you and Simon in my thoughts and prayers.

Shelba and Suni

[SavingSimon]

Hi Dena,

I know you have so much going on right now, but I'm hoping that you'll soon be checking in with us again. It sounds as though Simon was due for another ultrasound last week, so we'll be anxious to hear about those results.

Just like Shelba said, please try to hang in there!! I know that can be a very hard thing to do, when there is so much information to digest and so many decisions to be made. But just remember, you can come here any time to vent or to discuss or just to "talk." We will be here for you and Simon.

Hoping to hear from you soon,
Marianne

Thank you Marianne, and thank you ALL so much. I am having a hard time knowing what to say because I would like to just scream. Because of things like Simon's ultra-sound. I show up for it, and Dr. Matz (who originally recommended I do the UTK test - by the way why is it called that and not UTN?) asked me why I was there for an ultrasound. I told him because T.K. wanted to know what was going on with Simon's insides I guess. He said it would be a waste of my money and time. Then he asked if I had results from Dr. Oliver so I told him yes, and showed him both panels. Then he told me he was going to call another vet who taught him endocrinology, and would be right back. So, he came back and told me I needed to ignore T.K. and Dr. Oliver, and start Simon on Trilostane right away. :rolleyes::confused::confused::confused::confused: :confused:(:mad::mad::mad::rolleyes::mad::confused ::confused::confused:
I want to SCREAM at all of these people can just one of you give me a consistent answer???????????? PLEASE!!!!!!!!!!!!!!!!!!!! So I asked Dr. Matz if he would at least ask T.K. why I was there. So he called him and said he wasn't in the office, but my dear friend and vet T.K. is always available for me and Simon, and so I called his cell phone, and though he is having his own personal problems right now he took the time to talk to Dr. Matz. Dr. Matz still said I didn't need the ultrasound, so Simon did not get one. Dr. Matz wrote an RX for trilostane - the compounded kind starting Simon at about 1mg per lb I think, I don't know, I didn't fill it because T.K. called me later and said "let's just try the Ketoconozale for a month." Dr. Matz thinks it won't help at a low dose (50mg) which T.K. prescribed, which makes me wonder, am I approaching it conservatively and cautiously when I need to be aggressive and go for the Trilostane (which T.K. noiw says we will go to if the Lysodren doesn't work, which is confusing because it is what Dr. Oliver says NOT to to in Simon's case). Is Dr. Matz influencing T.K.'s decision? Should I heed Dr. Oliver's warning? Do any of these guys even know what they are talking about? Simon has lived with the finest care from T.K. and Dr. Burrows for twelve years. They both had the SAME opinions until other voices came onto the scene.
Anyway, though confused, and frustrated with feeling that way, Simon started Keto treatment, and will be on it for a month. If it does nothing to drop his cortisol, at that point, I guess unless someone freaks us out again, like Dr. Oliver did, we will proceed to Trilostane. That's the game plan. And T.K. told me that Dr. Oliver just is not happy with any of the current options for dogs with Cushings. I couldn't agree with him more - so I hope he comes up with something that we all like ... in the meantime this is where we are. Thank you all for putting up with my vents and confusion and for sharing your stories of similar feelings. I love this group and you and all of your beloved dogs are in my prayers.
Love and thanks,
T.S.D. & Simon

[SavingSimon]

Hi Dena,

First, a very belated welcome to you and Simon!

Honey, you sound so much like me when my Squirt was first diagnosed. I heard that word "Cushing's" and the tone of my vets voice as she explained it to me...and my little world went bananas! :eek: Those first few months were a complete nightmare...not just because of the worry I now had for her health but also because of some of the things people had said to me in my quest for help. I was absolutely terrified every second of every day; I cried, screamed, prayed, bargained, you name it! Then I found this wonderful bunch of folks here and life for us began to make sense again.

It has been over 2 years now - granted there have been some tough times, but Squirty is doing fine today. She is Atypical. A tumor was found on her spleen and when it and part of the organ were removed, her cortisol returned to normal but the intermediates remained elevated.

I was so scared of Lysodren I had decided that would not be a drug I wanted to use on her unless nothing, nothing, else worked. She had every test available, at least once :o , just to be sure what we were dealing with. That is when the tumor was found and the elevated intermediate hormones were diagnosed. If I had it all to do over again, I would approach this the same way....test, test, test and take the time to be sure what the problem was before any major drugs were used.

As time has passed and I have learned more, Lyso no longer scares me. In fact, I am an oddball in that Trilostane scares me much, much more than Lyso does. :rolleyes::o If the day comes that Squirt needs the Lyso to control the intermediates, then I will not hesitate to get her on it. BUT...no way I could tackle that without the loving support and exceptional knowledge and experience of our K9C family...now yours and Simon's family too!

It is strange to say, but Squirt's diagnosis literally saved my life. Just a couple of years before I had experienced a tragic loss in my life, one I was finding myself unable to cope with; I was losing hope, will, and desire. Darkness was my constant companion. When she got sick my life once again had a purpose, a reason to keep going one more day. I have wondered if she was "sacrificed" in order to bring me back for some reason but I know that is not how things work. Her Creator and mine does not cause suffering in one to save another. But I do believe things happen for a reason, and Heaven knows, I have been really questioning the reasons for things lately. At times it is most difficult to see the positives but they are always there, whether we can see them just now or not.

Among the greatest positives to come of these last 2 years or so are the friends we have made all over the world. Friends who love their animals as I do, who go to great lengths to help them, who see them as family...and who are always there any time for any reason. They have held me up when nothing else could have; they do today and I know they will tomorrow.

Dena, what you are feeling is completely normal. It is simply a manifestation of the deep love you have for your son and the concern you feel for him. But don't let it take you down so far you can't see your way back up. Reach for us and you will find many, many hands reaching back with love and strength. You are NOT alone, ever.

Keep your chin up, honey,
Hugs,
Leslie and the girls - always

Dear Leslie,
I read your post and cried. Probably because I needed to, you really touched my heart. Thank you so much, thank you - and thank everyone for the love and support. I am spent. And you guys all get it, and I thank you for that.
Our love and prayers for all of you and all of your loved ones, with and without fur coats,
Dena and Simon

[SavingSimon]

Someone up there said Simon's regular vet (T.K.) must not be comfortable treating with Lysodren - actually, that is not the case, he is or was more comfortable and familiar and used to it than Trilostane, I believe that all of the input and opinions has his head spinning as much as mine. The strong opinions expressed in Simon's thread show that none of us know what is right until we find what works for our dog. Every dog is different, like every person, what works for one, may not for another, and I couldn't agree more with sunmist. I'm so sick of the confusion and differing opinions I am going what I think is a conservative approach and yet doing something - and if it ends up hurting instead of helping you will be hearing me having big fits soon. Dr. Matz said that that there is a recent study from Taiwan that shows ketokonozale is more helpful than they originally thought. T.K. has used it for years (until better drugs came along) for dogs with Valley Fever which are probably one out of four where I live, and noticed the hormonal benefits of the drug in treating for something else. T.K. is a brilliant vet, and he cares - so I'm just going to let him be the confused one and do what he recommends at this point. (And I am one to ask questions that want to get to the bottom of it all, but he is the vet who takes my dogs charts home with him at night.) It has come down to who do I trust, and who knows Simon and that is T.K. ... and I pray I don't make a mistake along the way.

[littleone1]

Hi Dena,

Corky and I want to give you and Simon a belated welcome.

I can understand your frustration. I am no expert by any means, but I am so glad that Corky is being treated with Trilostane. Originally, he was going to be treated with Lysodren, which really scared me. I know that atypical Cushings has different treatments, which I haven't used, as Corky has adrenal Cushings.

We are not vets or specialists, but I know that everyone is trying to give some good advice, based on their experience and knowledge. You know Simon the best, and you need to do what you feel is right for Simon.

I understand what you're saying about valley fever. That's something that concerns me, as I have a friend that had a furbaby that had it.

Take a deep breath, and go with your instincts.

Terri

[SavingSimon]

Hi Dena,

Corky and I want to give you and Simon a belated welcome.

I can understand your frustration. I am no expert by any means, but I am so glad that Corky is being treated with Trilostane. Originally, he was going to be treated with Lysodren, which really scared me. I know that atypical Cushings has different treatments, which I haven't used, as Corky has adrenal Cushings.

We are not vets or specialists, but I know that everyone is trying to give some good advice, based on their experience and knowledge. You know Simon the best, and you need to do what you feel is right for Simon.

I understand what you're saying about valley fever. That's something that concerns me, as I have a friend that had a furbaby that had it.

Take a deep breath, and go with your instincts.

Terri

Dear Terri,
I never was afraid of Valley Fever, so many of my dogs had it and under T.K.'s care were cured within six months. But in 2005 I realized how devastating and quick it can be - I lost a little dude to it and it was unreal what it did to his insides (I was there for the surgery, and feel I may have already posted about that here). But I am confident that any vet in Arizona knows ketokonozale like the back of their hand. Using an anti fungal to treat a hormonal issue seems bizarre to me until I am in the presence of Dr. Warfield (T.K.). He explains it, as he does all things with me until I feel that I have a complete comprehension of what is going on. Simon has such a wonderful Vet, but his main focus is orthopedics - he's probably the best orthopedic surgeon in AZ and has definitely worked some miracles in that area with my dogs. I so much appreciate hearing from someone fairly close by. Thank you for posting. If you have been living in the same place, no construction is going on, your dog isn't a digger, and hasn't had V.F. yet, you probably don't need to worry about it too - you probably know that though. It is a bad threat to our AZ dogs. Out of my seven two have had it and are fine. Anyone who travels with their dog through desert areas should be aware of this disease though, and let their vet know because I have seen it manifest in WEIRD ways and sometimes vets in other states are totally baffled by it. At least it is one of those diseases that has an answer, a treatment - and one that works nine times out of ten. The whole thing comes down to catching it early, which is the only reason that I lost my Sirius - didn't catch it on time - he was asymptomatic.
Thanks for reacihing out to me Terri, it means a lot. :)
Love,
Dena, Simon and pack

[littleone1]

Hi Dena,

You are very welcome.

I know that there are many people and vets that don't even know what Valley Fever is. I have been in AZ for almost 20 years, and when Jay and I got Corky, we really learned alot. I keep such a close eye on Corky. If I see anything that is not in his normal realm, I write it down, and I discuss it with his IMS. Along with his stim tests, I always have a complete blood work up done.

I'm looking forward to hearing from you, Simon and the pack.

[SavingSimon]

I can relate so much to Apollo's Mom. Business is bad, life is hard, I have my own health problems, and there are so many other things going on ... Simon having Cushings on top of everything else that is going on just makes me want to crawl in a cave with him and the rest of my dogs and just cuddle with them until the "storm" passes. But it seems like in my life, and in so many of yours too, this isn't just the only strorm that is going on. It is like a hailstorm and an earthquake and a tornadoe and a flood and a tsunami and a fire and the whole entire wrath of God unleasheddd. I know it could definitely be worse .... but seriously, life sucks right now for so many of us I can't believe it. I take deep breaths. I pray, I cry, I scream, and swear, and I am still in the same place - looking in the eyes which truly are the window to the sweetest soul I've ever known, and don't know if I am helping him or hurting him - I don't know how he feels - just that he does not feel good and it rips my heart right out of my chest. God please make every decision in the process of trying to make him feel better, in the process of saving my Simon's life, the right decision. I pray to our Creator, who knows what is the right thing to do, that He makes sure that that is what I do for Simon, cause other than crawl in a cave and pretend this isn't real the only way I can cope is knowing that it is in YOUR hands, God, and that You won't let us down, and I pray the same for everyone in this forum that is in the same boat with us. God, please help us all, and especially our sick dogs that brought us here together. Amen.

[SavingSimon]

Hi Dena,

You are very welcome.

I know that there are many people and vets that don't even know what Valley Fever is. I have been in AZ for almost 20 years, and when Jay and I got Corky, we really learned alot. I keep such a close eye on Corky. If I see anything that is not in his normal realm, I write it down, and I discuss it with his IMS. Along with his stim tests, I always have a complete blood work up done.

I'm looking forward to hearing from you, Simon and the pack.

Hi Terri,
T.K. has told me a CBC is the best and cheapest way to watch for Valley Fever (for vets in AZ that know what to look for). After Sirius died every six months all of my dogs, and every rescue dog would get a Valley Fever test because I was so freaked out, until T.K. explained that I didn't need to do it that way (I was having another vet test them that gladly took the money because it isn't as far a drive). I decided about three or four years ago that even though it is thirty minutes farther away, T.K. needs to be the one doing my dogs shots and physicals because he is meticulous and catches anything at alll that might be wrong quicker than any other vet I have ever been to.
Can you help me find Corky's thread? Thank you. :)

[sunimist]

http://www.k9cushings.com/forum/showthread.php?t=392&highlight=littleone1

I think this is the thread you are looking for. :)

[littleone1]

Hi Dena,

Corky's thread is listed as The Corkster,updates, and it it is on page 2 at the present time. Bless your heart for looking for Corky's thread.

Thanks Shelba for posting the link.

[apollo6]

Dear Dena can so relate to everything you said.
The hardest thing is to remain positive. Look for the little blessings each day, each day you have Simon, simple stuff, sunshine, flowers, birds, every day we have with our babies. It is hard out there, but God does give us little blessing each day. We just need to be open to them. Even the hard stuff. "God doesn't give you more than you can handle". Sometimes I think when I pray , I am not talking in the same language as God. It is in God's time, not ours. I have taken baby steps with Apollo. If I see his little rat tail shake in excitement or when he gives me his paw when I ask, I have joy.
Hang in there we are hear for you.

[SavingSimon]

Dear Dena can so relate to everything you said.
The hardest thing is to remain positive. Look for the little blessings each day, each day you have Simon, simple stuff, sunshine, flowers, birds, every day we have with our babies. It is hard out there, but God does give us little blessing each day. We just need to be open to them. Even the hard stuff. "God doesn't give you more than you can handle". Sometimes I think when I pray , I am not talking in the same language as God. It is in God's time, not ours. I have taken baby steps with Apollo. If I see his little rat tail shake in excitement or when he gives me his paw when I ask, I have joy.
Hang in there we are hear for you.

You are so right, my friend. Thank you and Apollo for being there to help me stay focused on the positive. Simon helps me do that too - because it is the way he lives. I love him so much, as all of you love your sweet ones and I am taking the time to try and read the thread of everyone that has stopped by to visit us. I am a person who is set in my ways and very conservative in all ways. I also have great faith in a Great Creator who made all of these wonderful dogs that have really dug in to our hearts and our lives. I often vent the negative in Simon's thread, but I know that we are blessed, and I thank you for reminding me. Some of your babies are having worse problems than Simon, and some aren't as bad off yet, and every day that I don't see anyone added to the ones that have left us link is a day I thank God we all made it through!
We love you all and are so thankful for you!
Love,
Dena, Simon, and the rest of the pack.

[SavingSimon]

Oh, cool - it said Simon's picture wasn't saved as an avatar - but it looks like it is! Hope everyone can see my handsome prince now. God bless you all - you are in my prayers as always!
Love,
Dena, Simon and the rest of the pack.

[Harley PoMMom]

Hope everyone can see my handsome prince now. God bless you all - you are in my prayers as always!
Love,
Dena, Simon and the rest of the pack.

He is a very handsome boy! :D

Love and hugs,
Lori

[SavingSimon]

He is a very handsome boy! :D

Love and hugs,
Lori

Thanks Lori, I know, huh? ;)

[SavingSimon]

I am wondering if anyone has tried stem cells to restore damaged livers, or wasting muscle? When I am in CA I will be very near the "experts" at this stuff, that started it all. I wonder if it could help Simon and am open to any opinions on it. It is new, and most Vets tend not to like new stuff. Well, not that new, a few years ago the only Vets listed were the ones that started it. Now they have some in my area - and probably everyone else's too. I am excited to go to the source if it can help my boy. Before he got Cushings, I was thinking of having them take some stem cells and freeze them. I don't know if once an organ is damaged if they can get cells that will help. Here is the link, for anyone who wants to check it out. I haven't read up on it for a while, and don't have time to right now. But I will when I get to CA for sure, just like I will hopefully be catching up on all your threads and reading, thanking God my sister does not have cancer. If she does, I might totally fall off the boards, and kind of the planet for a while - that is how I tend to cope. Anyway, here is the link:
http://www.vet-stem.com/dogland/?gclid=CICAq9mD0KICFQUbawody09rpQ

[SavingSimon]

I am wondering if anyone has tried stem cells to restore damaged livers, or wasting muscle? When I am in CA I will be very near the "experts" at this stuff, that started it all. I wonder if it could help Simon and am open to any opinions on it. It is new, and most Vets tend not to like new stuff. Well, not that new, a few years ago the only Vets listed were the ones that started it. Now they have some in my area - and probably everyone else's too. I am excited to go to the source if it can help my boy. Before he got Cushings, I was thinking of having them take some stem cells and freeze them. I don't know if once an organ is damaged if they can get cells that will help. Here is the link, for anyone who wants to check it out. I haven't read up on it for a while, and don't have time to right now. But I will when I get to CA for sure, just like I will hopefully be catching up on all your threads and reading, thanking God my sister does not have cancer. If she does, I might totally fall off the boards, and kind of the planet for a while - that is how I tend to cope. Anyway, here is the link:
http://www.vet-stem.com/dogland/?gclid=CICAq9mD0KICFQUbawody09rpQ

sorry to quote myself, I just wanted to edit the title of this in case anyone searches for it, and it looks like I can't do that. If a mod can erase the other one, you can erase this part of the post too. If not, that is why it's here twice. Speaking of moderators, Lori, this thread title is fine, don't worry about it. :)

[apollo6]

Glad to hear about your sister. Why not look into this.

[SavingSimon]

Glad to hear about your sister. Why not look into this.

I said I HOPE I will be thanking God and looking into this. If it ends up being bad news about my sister I'm not sure how I will cope with any of it. It's okay - I see how you misunderstood. Sometimes (especially when under stress like now) I'm not real clear.

[apollo6]

Sorry about the misunderstanding. Will be praying for you, your sister, and Simon.

[SavingSimon]

Sorry about the misunderstanding. Will be praying for you, your sister, and Simon.

No need to be sorry, my friend, I see how it happened, and am praying you can say it again after the 7th anyway :) Thank you for the beautiful prayer you wrote on our other thread. Thank everyone! I am so thankful to have found you all. May God bless and watch over each and every one of you and you beloved dogs and all of your loved ones! I will definitely be keeping in touch.
Lots of love to you and Apollo from us! :)

[addy]

Hi,

I wish you only good news for your sister. I really hope cancer is not in her future but if for some reason it is, there are so many options now, don't give up hope. We will be there for you for your sister as well as for Simon.

As for the stems cells, I don't know much about it but if you have time to check in with the experts to learn more, why not? Are you talking about research at UC Davis?

I don't think I mentioned it yet but Simon sure is a beautiful boy. The avatar looks good :)

Dena, maybe the new meds will be able to help Simon. So many people have been able to help their Cush pups with the drugs we have available now. If one doesn't work we can try another. They may not be great options but all medicine has side effects and medicine is not an exact science on people let alone dogs!

Keep up the spirits and I pray your trip goes well for you. We will be thinking of you for sure:)

Thanks for the input on my thread. I respect your opinions and input.

Addy

Addy

[SavingSimon]

Thank you so much, Addy. Your support and everyone's means a lot to us. I'm looking for one of my best friends, Zeta's Mom - who is gong through this whole awful thing too. Great dog (and human) Mom, wonderful friend, and Zeta is a cool dog - I know she is going to find this a comforting and helpful group too - I promised she would, and know she will. I can't find her yet, but WELCOME! I'm so glad you joined!!!!
Love,
Dena and pack

[Bichonluver3]

Hi Simon's Mom!
Talk about scared - I was petrified when Dr Oliver diagnosed Chloe with PDH, Atypical Cushings. We all know exactly how you feel.
I, too, have a wonderful vet, Dr Lingareddy, who spends hours with me on the phone from home and the office.
Chloe's excessive thirst, hunger and peeing have stopped since she has been on the Melatonin and Flax Hulls. She still has her pot belly but I think her fur may be growing back. She also has 2 lumps - one over each hind leg. I noticed a difference within a couple of weeks of being on treatment.
She does "lick" but has always done this. She was a rescue and had been abuse - maybe it was a holdover behavior from then.
All in all, I have seen great progress with the Melatonin & Flax and hope to see even more. Chloe is back to her "bouncy" self and has resumed dancing around her kibble.
Our vet & I were just discussing diet and he has put her on a low residue diet. He says it is much easier on her digestive system (I want things as "easy" as possible!!)
Since we seem to be a step out of the gate ahead of you in time, I will post any changes we make to Chloe's regime. Chloe's panel results are posted on our thread, if you want to take a look.
She also takes Glucosamine for her joints and I am going to look into the CoQ10 and L-Glutamine.
Hope this helps a bit - if only to allay some of your fears and show you that the treatment does work.
Keep smilin' and keep postin',
Carrol & Chloe

[Bichonluver3]

Well, goofy me! You can just ignore my previous post - I must have been responding to one of your postings at the end of a page instead of the last page:o
On a more serious note, as I posted previously, I and the "herd" will most definitely be pulling for your sister on the 7th with all the energy that is in us. We pray that all goes well. Please update us as your K9 Cushings family is waiting to hear from you.
Love & hugs,
Carrol & Chloe (& Sparky & Grover)

[SavingSimon]

Hi Simon's Mom!
Talk about scared - I was petrified when Dr Oliver diagnosed Chloe with PDH, Atypical Cushings. We all know exactly how you feel.
I, too, have a wonderful vet, Dr Lingareddy, who spends hours with me on the phone from home and the office.
Chloe's excessive thirst, hunger and peeing have stopped since she has been on the Melatonin and Flax Hulls. She still has her pot belly but I think her fur may be growing back. She also has 2 lumps - one over each hind leg. I noticed a difference within a couple of weeks of being on treatment.
She does "lick" but has always done this. She was a rescue and had been abuse - maybe it was a holdover behavior from then.
All in all, I have seen great progress with the Melatonin & Flax and hope to see even more. Chloe is back to her "bouncy" self and has resumed dancing around her kibble.
Our vet & I were just discussing diet and he has put her on a low residue diet. He says it is much easier on her digestive system (I want things as "easy" as possible!!)
Since we seem to be a step out of the gate ahead of you in time, I will post any changes we make to Chloe's regime. Chloe's panel results are posted on our thread, if you want to take a look.
She also takes Glucosamine for her joints and I am going to look into the CoQ10 and L-Glutamine.
Hope this helps a bit - if only to allay some of your fears and show you that the treatment does work.
Keep smilin' and keep postin',
Carrol & Chloe

Hi Carrol and Chloe -
Glad to hear from you and really happy to hear the good changes in Chloe. When I get to CA I will definitely read up on your thread - I totally want to spend all my days here reading everyone's threads, but I am as "Marlo" says in "Finding Nemo" "a delay fish" - my nephews even call me "Aunt Dory" - I have the memory issue in common with her too LOL!
It's funny I just came on here to post real quick that I have changed Simon's diet and wanted the input of follks (the good, the bad and the ugly). I just started feeding Simon a brand named "Blue". I remember someone said I should feed him the fish, but the only senior flavor available is chicken. Of course he loves the food (the dog eats cardboard now, so that doesn't mean anything :D ) but when I did my research on dog food and FREAKED OUT that they are allowed to put euthanized and diseased animals in dog food, I think blue was the company with the most convincing advertising that I should switch to their food. I read all of the ingredients, they really do seem pretty wholesome. The only thing that concerned me is that it was giving Simon some nasty gas, with which I am sure, comes a tummy ache - but it only happened the first day (well a toot every once in awhile ROTFL ) but I think that is just from switching up the food on him. And sometimes I think probiotics can make dogs gassy just like people. If I am not faithful with the probiotics, I don't think I should give them to them, and like I said before, although not one vet has recommended Simon should be on probiotics, his MOM thinks it is a great idea - especially since he has sludge on his gallbladder - and if you read Iams ad for their WAY overpriced probiotics, it is convincing to me too. I give Simon probiotics from RXvitamins (I think that is the company - if anyone wants to know I told Frijole who it is I get the very inexpensive K9 probiotics from.) I think I am going to be happy with Blue (I think the company full name is "Blue Buffalo") because it is easily availabe dry food with good ingredients as far as I can tell - plus my two dogs that are now on ZD because of allergies to everything bird (eggs, feathers and the meat) can also eat the fish diet from Blue. Does anyone have anything bad to say about that particular brand? (I hope not, but of course I want you all to "sock it to me") I want the people here not to be afraid to scare me for Simon's sake EVER! If you think I am doing something that is going to hurt any of my dogs ever - please speak up and speak loud, we might end up disagreeing but if something needs to be really thought about before I do it (like the ketoconozale) then PLEASE don't be afraid to tell me. If you think I am going to kill my dog this is one Mom that wants people to say it, and say it just like that. I am more educated now, so I know to not just "freak out" but to calmly research until I am comfortable with what I am doing. So I know that I for example, scared poor Apollo's Mom to death and I was WRONG. (I am pretty sure Simon is actually going to go the same route as Apollo now) unless someone convinces ME that I am wrong. I know everyone here wants what is best for their dog and for every one else's. I am greatful that Apollo's Mom was gracious, and forgiving of me - but I have decided, that in Simon's thread, I really want people to speak up about the scary stuff with no holdiing back. If you think I am going to kill my dog, by all means speak up, and we can discuss it, and I won't freak out and maybe we can all learn together, which is my hope for the purpose of his thread anyway.
This thread is mainly two things for me - it is like a journal, where I vent a lot (but a journal with caring loving people that can relate and give feedback - how cool is that?!!! :cool:) and it is the place where I hope people talk to me about what they think and I get to meet you all and your dogs. This is where I spend my "free time" (and too much time that isn't sometimes) now.
Carrol - are Chloe's bumps like lumps or growths, or are they more just kind of a big area? I noticed the same exact thing (I think) on Simon just the other day, but I think that it is where his liver is - I think what I am feeling is his swollen liver. I remember Dr. Matz said that he could "always" (arrogant guy) feel a swollen liver, before he gave Simon his ultrasound - and then he was surprised Simon's liver was slightly enlarged and he didn't feel it. But I really think that I can both see and feel it now, and it is on his back right over his back legs where it is the most noticable. (I guess probably cause that's where his liver is - duh). I will read your thread as soon as I get time, Carrol and that goes for everyone that has come by here to welcome, support, or just say hi) if you have posted in Simon's thread, I promise you I will read your entire thread, I want to get to know you all, and all of your sweet I love the faces ... there isn't a dog here that wouldn't pull my heart out of my chest if I saw him or her in the pound or somethiing - so I want to tell everyone what wonderful dog parents that you are. As a rescuer, I speak for all of us when I thank those of you that have rescue dogs, and are sticking this out with them - they love you so much for it and all you do for them!
God bless everyone (that means the dogs too of course). I'm procrastinating now ... gotta get ready for a ten hour drive). We will keep in touch with you all as often as possible.
Love,
Dena and pack, wags from Simon's tail that needs a "tail toupee"

[Bichonluver3]

Have a safe trip. Remember, when you are passing Rancho Mirage on the 10, we will give you the "thumbs up" (well, in spirit, anyway) :D
Carrol

[SavingSimon]

Have a safe trip. Remember, when you are passing Rancho Mirage on the 10, we will give you the "thumbs up" (well, in spirit, anyway) :D
Carrol
Thank you so much, Carrol - I really hope we make it at least that far tomorrow. I'm driving a rented RV (packrats have made my little class B into a - well a packrat rewired mess) a little nervous about driving something 25 feet long! :eek:

[Squirt's Mom]

Safe travels, Dena! Remember you have a whole crowd of folks with you the whole trip!

Hugs,
Leslie and the girls - always

[SavingSimon]

Stressed out - runing around doing all the stuff I procrastinated. Tomorrow is surgery day for my sis at 4 CA time. Thank you all so much for your prayers and support. Think I can handle the RV - doesn't look so big in real life. Hope I can, for Simon's sake since he is my VIP passenger. Will update you all as much as possible. ........... Love you all and your little ones, you will be in my prayers.
Love,
Dena & pack

[mypuppy]

Dear Dena,
In North Carolina on vacation with family and the pooch. Finally got Internet access--I could just not stay away. I am sooo hooked. From the distance wishing you, Simon and more importantly your sister, lots of positive thoughts and healing prayers. Will check in upon our return. Luv ya bunches and God Bless. Xo Jeanette

[littleone1]

Hi Dena,

I want you to know that I am keeping all of you in my thoughts and prayers. I really hope that your sister's surgery goes well.

Take a deep breathe. Take it one step at a time.

It is so sweet of you to think about us and our furbabies. If you feel that you need to talk, please give me a call.

[apollo6]

Praying for you, Simon , your sister and family.
Love Sonja and Apollo

[Bichonluver3]

Hi Dena!
Just checking in. Will be thinking of you at 4:00 our time (LA Time). Do you have other family members there with you? Every ounce of our energy, prayers and good wishes will be with you and your sister tomorrow.
Love & Hugs,
Carrol

[Squirt's Mom]

Hey Dena,

It's 8:49am in ARK and many positive thoughts are flying westward for you and yours today.

Hugs and prayers,
Leslie and the girls - always

[Bichonluver3]

Good Morning Dena!
Hope you slept okay last night. Was thinking of you all evening. Prayers & wishes that all goes well today. You should feel strong from all the postings you are getting here. Everyone is pulling for you. I don't know what your support system is like in LA but, although we have never met in person, if you need anything, please let me know. I am only a 2 hour drive along the 10. Two of my kids live in LA so I am used to the drive. Do you have someone there to watch Simon? Let me know if there is anything I can do.
Love & Hugs,
Carrol & Chloe

[addy]

Hi Dena,

Well, looks like the whole family has checked in on you :)That is such a good thing. Makes you feel all warm and fuzzy.

I hope you are hanging on okay. We all are sending so many cyber good vibes, the system just might crash :p:p

Love from me and Zoe
Addy

[Bichonluver3]

Hi Dena!
So anxious to hear update. We are here for you.
Love,
Carrol & Chloe

[addy]

Hi Dena,

I am not with you physically, but sure am there mentally!!! Can't stop thinking about ya!!!!

Addy

[SavingSimon]

We are so blessed with this group of friends, thank you ALL so much ... I updated with my sister mostly in the other thread where I requested prayer for her if anyone isn't up to speed and wants to be. Later tonight I plan to start my reading of your threads ... and tomorrow and everyday until I feel like I know all of you and your situations and your dogs as well as I know mine. Some of you I'm already there with, but you all really deserve my full attention and support after being with me through this most recent ordeal. And, yeah - you all have some pretty incredible prayer power too - you should know that! I thank you all for the prayers for my sister and promise that I will be not only praying for each of you and your dogs, but recruiting prayers on your behalf as often as possible. I believe that all of you that posted were a part of a true MIRACLE. And I am hoping and praying for miracles galore in the k9cushings forums!!!! Now it's your turn! Your families and your dogs! And I truly am going to be praying that I get to read the posts of the miracles that I believe are going to happen for you all and your loved ones! May God bless you all and every one that all of you love.
With all our hearts,
Dena and dogs
Special wags and kisses from Simon to you all!
PS. Caroll we gave you a thumbs up back (and then I realized I needed to keep both hands on the steering wheel :eek: LOL!!!) We are closer to Ventura/SB county than LA and Simon is hanging out with my brother's dog, but since my sis is getting out of the hospital today (YIPPEE!!!!!) I get to hang out with my boy now, and since it is good news we are going to make it at least one day of just "VACATION"!!!!!!!!!! :):):):):):):) I wish we had a heart "smiley" lots of hearts to you all from the bottom of ours!

[SavingSimon]

Hi everyone,
Back to what's going on with Simon. While on the trip, the only thing he has been eating is his medicine, because he has chewies or pill pockets, so he has the runs, which could be stress - or just eating mostly meds every day. But something happened the past couple of days that really has me worried. Simon is staying on my brother's patio a lot, in the nice CA weather. Anyway, tonight, for the second day in a row, I guess this is the second time I have come to him from a direction he wasn't expecting me to come from. In other words, I usually open my brother's patio door to say "hi Simon" or "come on let's go" but the few times I have approached from the gate at the bottom, and said "Hi Simon! Come on let's go!" He looks for me at the door, and then he turns around and looks around the corner. (I'm having deja vu right now ... weird huh?) anyway, I watch him look for me for a good sixty to ninety seconds before he finds me. I know he has "slight cataracts" ... whatever that means. My own doctor could see them, and asked if he had cataracts, so they are noticeable to other docs besides Vets. I asked T.K. if he should have eye surgery, and he said "no". So - there's that - but if it is just his eyes, shouldn't he be able to tell which direction I am calling him from from his sense of hearing? So, now I'm worried that he is disoriented. Maybe the keto is really messing up his liver fast? 50 mg twice a day for a 21-24lb dog seems fairly low dose, but do dogs produce amonia like people from their liver, and get confused? I am really worried. I'm not sure if this is new or I only noticed it because we are in a new environment. I am pretty sure it's new. He hasn't been on the ketoconozale more than a month yet I don't think, but maybe it's close to a month. Should I get an MRI? Or a CT scan to see if maybe he has a massive brain tumor? Oh, also, he has really concentrated, and dense urine (always has but seems even more so) this is one thing that has not made his Cushing's "typical" from the beginning. But it also worries me. So tonight, I am back to worrying about my boy. And open and interested in any thoughts. Thank you all we love you all!
T.S.D. & Simon

[littleone1]

Hi Dena,

I hope Simon starts eating for you. It could be due to the recent excitement and change in his normal routine.

I'm not familiar with pituitary tumors or what problems are related to them. I'm sure others will be along that have experience dealing with pituitary tumors.

Corky also has cataracts. He also started having similar experiences like Simons. He is losing his hearing. This started awhile go. I have to talk louder so he can hear me. When I fiirst started to notice it, I stood behind him and called his name. He heard my voice, but he didn't know where the sound was coming from. He kept looking in the kitchen for me. I've also stood behind him and clapped my hands. The same thing happened. It's possible that Simon might also be losing his hearing.

I hope that others will be able to shed more light on this.

[SavingSimon]

Hi Dena,

I hope Simon starts eating for you. It could be due to the recent excitement and change in his normal routine.

I'm not familiar with pituitary tumors or what problems are related to them. I'm sure others will be along that have experience dealing with pituitary tumors.

Corky also has cataracts. He also started having similar experiences like Simons. He is losing his hearing. This started awhile go. I have to talk louder so he can hear me. When I fiirst started to notice it, I stood behind him and called his name. He heard my voice, but he didn't know where the sound was coming from. He kept looking in the kitchen for me. I've also stood behind him and clapped my hands. The same thing happened. It's possible that Simon might also be losing his hearing.

I hope that others will be able to shed more light on this.

Dear Terri and Corky,

Thank you for the quick reply. I think you are right, Simon is losing both vision and hearing. Has anyone had cataract surgery for their dog? My vet said they just remove the cornea, but I remember talking to an eye specialist when Simon was young and getting his vision certified. I thought she said that they do transplants like in humans. It seems like it would be painful the other way. Maybe I misunderstood and they just remove the cataract?
Corky seems too young to have vision and hearing problems, and Simon is also, for a JRT. I guess maybe the cortisol speeds up the aging process?
Today their is the new problem of blood in his runny poops. First he had a normal poop, and then, runny one with blood. He is up to date on shots (blood in poop always used to make me "parvonoid" but that isn't it. Maybe his little booty is just sore from too much pooping, that happened to one of my other JRTs on a trip once, this whole diarhea, bloody poop thing, the vet said it was stress to give him pepto tablets, and it did go away with that. Should I do that for Simon? He woke me up this morning by jumping off of the bed, and crouching, kind of making the motion of a dog taking a poop, but he didn't poop until I took him outside. He just did that motion like four or five times ... it seemed to me he was having bad stomach cramps. I am wondering if I should take him to an emergeny vet today? The emergency vets close to where we are staying in SB are not very good .... any suggestions on what to give him? I know pepto isn't recommended so much any more. Maybe I will call the emergency vet at home. Seems like the best plan I can think of - maybe immodium? I don't know what to do - he still isn't eating much other than meds, maybe I should cut back on them? I really hope some others come by and let me know their thoughts. I thought my family stressed ME out. Simon has pretty much just hanging out in a new environment, but not a bad one. I am very concerned about all of these new symptoms. This is the first time I have had troulbe with him at all on a trip - he usually loves to travel.. TY ALL for any input. Thank you so much Terri, hug that Corkster tight from us.
Lots of love,
T.S. (Too Scared) Dena, Simon and the rest of the pack
PS. Probiotics haven't been helping. Sorry for any typos or spelling mistakes they are there, I'm sure they are I am so exhausted!!

[Squirt's Mom]

Hi Dena,

With the development of bloody poops, I suggest you withhold all meds and foods. Let Simon have all the water he wants - FRESH water - but that is all...don't let him drink from puddles, others bowls, ect. or eat grass for now. He may have picked up a bug OR it could simply be stress but you want to give the digestive system a bit to calm down, so don't give it anything to process for now. And I would see a vet asap to find out where the blood is coming from.

Hope he feels much better soon!
Hugs,
Leslie and the girls - always

[Harley PoMMom]

With Harley my motto is: If he is not eating he does not get his medications, especially his cushing's med. I will give him something for whatever I think is ailing him...for his upset tummy he gets reglan and pepcid.

With Simon, I believe, it might be stress, so with-holding everything but water might be a good idea. Sorry refresh my feeble memory...How long has he been having diarrhea? Pedialyte (plain) can be added to his water to give his electrolytes a boost, just in case he's a little dehydrated because of the diarrhea.

With Ketoconazole, stomache acids are needed for this medicine to be absorbed, so a pups owner cannot give Pepcid or any kind of acid-reducing medicine to their pup, unless they have the Ketoconazole reformulated for this.

Hoping Simon feels better real soon.

Love and hugs,
Lori

[addy]

Hi Dena,

skip one meal, so withhold food has always been what Zoe's vets tell me for her diahrrea, though we never had blood, don't withhold water and encourgage drinking by adding homemade broth to water.
Her holsitic vet also told me sudden bout of acute colitis can cause bloody diahrrea.

For Zoe, skipping one meal and then getting 1/2 rations next meal usually helps her though sometimes we have to switch to bigger guns if it goes on too long.

Stress can do many things to them but you never know what it could be from.

It's always something with our pups!:) Hang in there and I sure know what you mean about sleeping!!!.

Addy

[SavingSimon]

Mostly, I have been doing what Leslie and the girls recommend - I haven't had a choice, Simon has not been eating ... but obviously what I have been doing wrong is continuing to give him his meds (meaning that he was only eating meds and what they come in - they are compounded chewies, or the flax and melatonin go in a "pill pocket". I really think it is stress. Had this happen before with another dog because of stress and change in routine, even down to the blood in the poo. So, I am not too worried, but want to make him feel better. This AM before Harley's Mom posted, I stopped all meds, and gave him 1/4 of a tagamet. It seemed to make him feel much better. The only tummy meds I have with me are pepto tabs (don't want to give because of the aspirin) and immodium and tagamet. The tagamet seemed to help, but if it messes up progress with the meds, don't want to do that again. Anyone have any thoughts on immodium? I seem to remember having used it long ago for something with dogs, but I'm not sure and don't know the right dose for a 21 (I am pretty sure that is his weight now if not less) pound dog. Oh, forgot to call ER Vet - that is what I will do and I will let you all know what they say I should do. Thanks for being here for us always, through every crisis big or small. We love youu all! XOXO Wag, wag, wag,
Dena & Simon :)

[lulusmom]

I just wanted to chime in and validate what Lori and Leslie have already mentioned. It is not a good idea to continue treatment of Ketoconazole if the dog is acting depressed, not eating, vomiting or experiencing diarrhea. These are all side effects of ketoconazole as well as signs that cortisol may be too low. It sounds like Simon has more than a few of those symptoms right now so if I were in your shoes, I would definitely stop the meds.

As far as ketoconazole's impact on the liver, your vet should have checked Simon's liver enzymes before starting treatment and definitely well before 30 days after starting ketoconazole to determine the impact to his liver. Was this done? If the liver is severely impaired by primary liver disease or drug toxicity, a dog will usually be jaundiced and anemic. The best way to determine if a dog is jaundiced is to check the gums, the whites of the eyes and the belly for a yellow cast. Dogs that are anemic can have very, very pale or white gums. If you see either of these symptoms, get Simon to a vet asap.

An acth stim test for purposes of determining how effective the Keto is in reducing the cortisol is usually done 10 - 14 days after dosing. Did your vet instruct you to bring Simon in for an acth stim test and if so, when?

I hope Simon starts to feel better real soon.

[SavingSimon]

:)T.K. called us from his vacation today (or, rather, yesterday since it is 2AM) to answer my questions about Simon. I feel he knows Simon well enough to know what the problem is, but he did say he would need to see him to verify what he suspects, but for now he believes he is dehydrated from the stress of the trip and variation in his routine, and that I should not have been giving him meds, just like you all said until his stomach felt better. He said that dehydration could cause many symptoms, including the disorientation I saw in him the other day.
He had me put Simon on one part chicken three parts rice, which is the first food Simon devoured since being here, I also used a lot of broth. Right afer eating this Simon had a normal poop. Allso, I was able to spend more time with him today, like usual. I thik T.K. is probably right that the cause of not eating/drinking and dehydration was all stress related.
I am also glad T.K. has plenty of experience with ketoconozale. Yes, Simon's liver values were checked, and yes, everything will be rechecked when we get back. So, I doubt this had anything to do with much now, other than me being stupid and giving him his meds when he wasn't eating (I learn something new here and or from the vet every day!) and he wasn't eating because this trip probably has his cortisol through the roof - I know it does mine! And Simon is sensitive, he picks up on that. Thankfully we are headed home soon. Could keep on using prayers for a safe trip in this huge thing, and want to thank you all again for being here for us. Simon still isn't back to normal totally this AM (I fell asleep typing, and now it's closer to 8:30 AM) but hopefully all will resolve when we get home. I will be watching him like a hawk. Though I am tempted to stay and find out about vet stem and also get an MRI or CAT scan, I can't afford that after the trip, and think those can wait, because at least the MRI or CAT scan - I think it is just going to tell me more, but there won't be anything I can do about it. I just like to know EVERYTHING going on with my Simon. I know you all know what I mean. XOXO,
Hopefully we will make it home safe, and you all should hear from use again more this week if so.
Love,
Dena, Simon and pack
PS. again TY for all the wonderful advise and pointers!! If we don't have a chance to catch up on your threads this week, we will do it this weekend for sure - I don't think there is Internet in our next few stops.
WE LOVE YOU ALL!!! & TY ALL! (And you all are always in my prayers) :):):):):)

[SavingSimon]

Could everyone who has posted here, or in my other thread send a friend request, if we aren't already friends? Also, it will make life easier for me if you can post a link to your thread on our little "visitors messages" area. And if you don't know what I'm talking about (a few of my friends won't - you know who you are, I won't embarrass you, and you shouldn't be embarrassed anyway) just ask a moderator or ask in the how to section. If you post your thread on our visitor message area, I promise to read your entire thread by the middle of next week at the latest. We want to get to know you all, and your stories. You have helped us so much! XOXO,
Dena & Simon

[labblab]

Could everyone who has posted here, or in my other thread send a friend request, if we aren't already friends? Also, it will make life easier for me if you can post a link to your thread on our little "visitors messages" area...
For anyone who's wondering ;), you can find Dena's "visitor message" area on her profile page (I've given the link below). If you wish to "befriend" Dena, you can also do that by visiting her profile page as well:

http://www.k9cushings.com/forum/member.php?u=613

Every member has a message area of their own -- you'll find yours on your own member profile page...

Marianne

[littleone1]

Hi Dena,

I'm glad that Simon is doing better. Keeping you both in my thoughts and prayers that you have a safe trip home.

[apollo6]

Just checking to see how you and Simon are doing. Hope Simon starts feeling better. My little guy is doing the best he can right now.

[addy]

Hi Dena,

Hope Simon is feeling better today.

Addy

[SavingSimon]

Thank you so much Marianne! What wonderful, faithful, and patient friends we have made here! I truly am thankful for you, and for everyone that has visited us. My goal for the week is to catch up on everyone's thread, so if they haven't already posted it on my "visitor message" area, please do - I have a lot of reading to do!! :)
For anyone who's wondering ;), you can find Dena's "visitor message" area on her profile page (I've given the link below). If you wish to "befriend" Dena, you can also do that by visiting her profile page as well:

http://www.k9cushings.com/forum/member.php?u=613

Every member has a message area of their own -- you'll find yours on your own member profile page...

Marianne

[Squirt's Mom]

Hi Dena,

Good to hear from you! How is our little Simon doing?

Hugs,
Leslie and the girls - always

[SavingSimon]

Hi everyone, sorry it has taken me so long to get to posting here. I am sorry this update is so overdue. First of all, I guess I need to ask a moderator to change the name of Simon's thread again - he does NOT have "atypical" Cushings anymore. According to Dr. Oliver, as well as Dr. Warfield (T.K.) and Dr. Burrows, and Dr. Matz, so when four vets agree on something anymore I am amazed - so maybe time to change the thread and take out the word "atypical". I learned, what I suspected was that "atypical" is a phrase kind of coined by Dr. Oliver at the U of TN at Knoxville to describe dogs that don't quite fit all of the criteria for Cushing's disease, most importantly, the cortisol level.
Since we got home from visiting my sister who (thank God, and thank those of you who cared, and who prayed, and who were there for me and Simon, and my sister) is fine, on the road to recovery from her surgery, and she did not have cancer!! That is another miracle in my family that I do not take lightly, and truly believe that all of the prayers made a difference since the doctors thought it probably was ovarian cancer. Thank you so much for your prayers and your concern!
On a Monday soon after getting home, I called Dr. Oliver to ask several questions. I didn't find him as friendly as so many of you have - I'm not sure if he was just pressed for time because it was a Monday, or because he had been on vacation, or he just didn't like my questions. Whatever it was, it was just different than I expected when I talked to him. The conversation was maybe twenty minutes and then he said he had a lot of work to get to and needed to go. That wouldn't have made me feel so bad if I didn't have such high expectations, I guess, and if he hadn't made me feel kind of stupid - I guess maybe I caught him on an "off" day, from what I have heard and read from others that have talked to him. Since I was about to switch Simon from ketokonozale(sp?) to Trilostane and T.K. originally said Dr. Oliver said that Trilostane could kill Simon I wanted to know why he said that. So that was my first question. He explained that Trilostane is a dangerous drug, it is not his first choice of treatment for any dog. He did look up Simon's test results, and said "your dog does NOT have 'atypical' Cushing's anymore, I think we can agree to refer to this as full blown Cushnoid because of his cortisol levels" - so what I got out of that is that the line between atypical and "typical" Cushings is all depending on the dog's cortisol level. Though I wonder what he would call it NOW - I'm not going to bother Dr. Oliver again unless I feel it is a life or death situation, as he had me thinking this was. He went on to kind of back-pedal and say that if my Vet wants to treat with Trilostane, I should listen to my Vet. When I asked him why he didn't like Trilostane, when at least it isn't destroying the adrenal cortex, he replied that he didn't particularly favor any treatment over another, he just thought it should be approached conservatively (which T.K. and I agree with - Dr. Matz, on the other hand wanted to take a more aggressive approach) and he did not like that if someone had to switch from Trilostane to Lysodren that it is not easy, and you have to take at least a month to make sure the Trilostane is out of the dog's system. He also said that Simon's female hormones were already high, and that the Trilostane would definitely raise his estradiol levels - when I asked the signicance of that, and how it would affect Simon, he was very short with me, and basically said he didn't know, that it might not mean anything, all dogs are different, etc.. Then he told me that if I do treat with Trilostane I should NOT continue the melatonin. When I asked why he seemed frustrated, and said because there are no clinical findings that it makes any significant difference. That answer left me with the question, "then what would it hurt?" but Dr. Oliver had been so firm in the emphasis NOT to use melatonin, but just to continue with the lignans, I kind of felt like I better stop asking him so much he felt I was questioning him personally or something - I am not sure. It was not the kind of conversation I expected with him is all I can say. He really didn't have answers to my questions - or the time to give them, I'm not sure which, like I said, but if I hadn't heard so many wonderful things about him from so many of you, I would NEVER want to talk to him again. It felt very futile. Though I learned Trilostane should not be combined with melatonin - I can't tell anyone why. He was really not open to any of my "why" questions - it was almost like he wanted to say "because I said so". I did learn a couple of things I didn't know. One is that Simon definitely had PDH not "atypical" Cushings because of his last test results, and that melatonin should not be given with Trilostane according to Dr. Oliver for reasons he didn't really elaborate on, though he seemed to feel strongly about it, and that in my opinion "atypical" is what Dr. Oliver calls Cushing's disease that does not have the expected cortisol levels, but probably will advance to having it at some time - there really is no such thing is "atypical" Cushings IMO it is just called that when they aren't positive that it is Cushing's disease because it changes to "Cushing's disease" very clearly, as soon as the dog's symptoms and mainly cortisol test results indicate Cushings and no other options.
I got off the phone and cried. To be totally honest, I got off the phone, cried, felt like a complete moron and wondered why the guy is so nice to everyone else, and felt terrible. I am glad that Terry called me the next day. It was really nice to talk to someone from here and be encouraged, because I felt really down after that talk. I'm not sure if it was just the way he talked to me or the combination of that and KNOWING that Simon DEFINITELY has Cushings, but I think I am just too sensitive - I knew he had Cushing's before anyone would confirm it.
That reminds me the title to Simon's thread needs to be tweaked a little more, so I "fixed" it for this post, not sure if a moderator wants to change it to what it is now, or not.
While we were on the trip, it is a trip I make with Simon a lot, but usually I am with him, and this time he was alone outside at my brother's most of the time, and developed a case of the runs with blood in it. This concerned me, and though T.K. was out in the middle of Lake Powell, he docked to be able to call and check on Simon every day. When we got home was when I called Dr. Oliver, because T.K. checked Simon's blood, and his liver values were higher, maybe from the keto so he decided to start him on a low dose of trilostane. I was scared to give it to Simon until I talked to Dr. Oliver, scared to talk to Dr. Oliver, and worried about Simon because it wasn't the trip that caused his bloody runs, as far as I could tell because he still had it. Also, he developed a new symptom - when I called him one day, he looked all over for me except for where I was at. T.K. thought dehydration from the diarhhea could be causing disorientation. I was afraid his brain tumor was growing or something (always worst case scenario in my mind). So, after I talked to Dr. Oliver, my next priority was to cure Simon's case of tummy troubles, and I took him to his other "regular vet", Karen Burrows for that. Sorry everyone that this is so long - a lot has happened - I am going to take a break here because I don't even know if this whole post will fit, and then finish up in a second post. I also want you guys to know it has a happy ending and I will be back to finish and give you the final part of this update by this evening ... (I hope) ...

[Squirt's Mom]

wow....I think it's good this is in two parts...I need some time to reflect....wow....

But good to hear from you, Dena! :D And glad to know this does have a happy ending! ;)

Hugs,
Leslie and the girls - always

[Harley PoMMom]

so maybe time to change the thread and take out the word "atypical".Changed your thread title for you...I copied the wording from your post but if you would prefer to have something else as your thread title, please just let a moderator or administrator know, ok? :)

Love and hugs,
Lori

[StarDeb55]

Dena, I'm glad to see that Simon is hanging in there.

Now, when it comes to Dr. O, I don't think any member of this group has actually ever contacted him by phone. I could be wrong, but every contact a member has had with him, including myself, has always been by e-mail. He has always been very prompt in replying & has been nothing but helpful. He may have been caught by surprise by your phone call, which may explain how he responded to you. He most certainly consults with attending vets by phone frequently, but he will always defer final treatment decisions to the attending vet & owner since he does not practice, only does research.

Debbie

[addy]

Hi Dena,

So glad to hear from you, I was alittle worried. Waiting to read part II:)

Addy

[littleone1]

Hi Dena,

It's good to see you back on. I will be waiting to hear if Simon had his stim test and what the results were. Hang in there my friend.

Debbie, I have actually spoken with Dr. Oliver on the phone. I did post this on Corky's thread.

Take care. Talk to you soon. Give Simon and the pack hugs from me.

[apollo6]

Dena,
We all were worried that we hadn't hear from you in awhile.:(
Please read near the end of my thread, still don't know how to get to you.
Don't jump into the trilostane. Apollo has pituitary cushing which means both his adrenal glands were enlarged equally. Also I fought my vet on starting at a lot lower dosage then he said, 10 mg. versus 30mg. Forgot to ask what Simon weighs.
And you are not stupid, just smart and asking questions. :mad:When you question these knock a few off. :DWe are the ones going through this,and we know our babies best. So ask away, don't be intimidated . I am going through the same stuff with my vet.
hugs from Sonja and Apollo

[spiritdog6]

Dena, I want to thank you for your honest post. It did give me a lot of concerns regarding my vet and that of UTK. I appreciate you honesty and frankness.

I didn't know that "atypical" was a word Dr. O. invented.

I believe your questions were honest and fair, and the fact he was vague bothers me. I know he is a researcher, but what you said in your post sounded so much like myself, I am now concerned for my own dogs test being sent there.

I only have a GP right now who has failed me a few times. The clinic/staff is worse.

My old vet in MI diagnosed my dog, over the phone no less with Cushings. No tests, just clinical signs. Now the vet here where I live now admits, that "your first vet was right". Meaning my old wise MI vet.

My MI vet recommends trying the drugs, he thinks the atypical stuff is B***. As you so well pointed out, they don't know, so lets try this.

My dogs blood will go out to UTK today, but if atypical comes back, I will question, like you did.

Thanks ever so much for sharing, and I wish you and your dog all the best..........Jean

[addy]

Hi,

Now I don't want to start an arguement but I always like to play devil's advocate, so to speak. I can understand that a doctor doing research on a disease like Cushings starts to comes across alot of tests that don't fit the exact mold, would "coin a phrase" and classify them with a new name. i don't know if you can right away discredit that, it is research. Now my IMS did state some vets do not like that adrenal panel because a dog's hormones flucuate, but she did indeed suggest the test since Zoe did not have strong symptoms.

I interject this comment only to continue the discussion. Truly, we all have to make a choice as far as what tests to have, what doctors to see, what drugs to give, what symptoms to treat. I can see the use of having atypical diagnosis as benefical to some.

With respect for Dr. Oliver and his behavior on the phone, well, we all can have a bad day, doesn't make it right, but let us not be too quick to judge a man who has indeed tried to help so many and has done important research on Cushings.

I would have the test again and I am confident in the work being done at UTK. But that is just my personal opinion.

Dena, I am sorry you had a bad time of it with Dr. Oliver and it is your right to say, never using him again. But let us not burn too many of our bridges, we don't have many of them.

Okay, I am now off my pulpit and still love you,

Addy

[SavingSimon]

Changed your thread title for you...I copied the wording from your post but if you would prefer to have something else as your thread title, please just let a moderator or administrator know, ok? :)

Love and hugs,
Lori

Thanks Lori! I still have a lot to say, and a lot to read, and got news of another change yesterday. I have to work early today, but I plan to get back to all of you that replied, and to finish part two later today. I guess I was surprised by T.K.'s call and his plan today, but I am sure you all will help explain and make me feel better about it. I just wish there were more hours in the day. I am so sorry for anyone that was concerned about us, and promise to try to get this summed up - it is just things keep changing so fast! Most changes are good, like I said. The one T.K. made to day was not what I expected of him, but he told me to trust him and I guess that is what I will do because so far so good with the treatment plan T.K. is chosing, and I am very happy with his close monitoring of Simon whether he is in town or out of town, he truly cares what is going on. So hopefully I won't be too tired to finish this all up tonight, and then respond to some comments I haven't even read yet. As always, Lori, the title is great and I appreciate your quick response in making changes.
Love to and prayers for you all and your loved ones,
Dena and Simon and pack

[SavingSimon]

Hi,

Now I don't want to start an arguement but I always like to play devil's advocate, so to speak. I can understand that a doctor doing research on a disease like Cushings starts to comes across alot of tests that don't fit the exact mold, would "coin a phrase" and classify them with a new name. i don't know if you can right away discredit that, it is research. Now my IMS did state some vets do not like that adrenal panel because a dog's hormones flucuate, but she did indeed suggest the test since Zoe did not have strong symptoms.

I interject this comment only to continue the discussion. Truly, we all have to make a choice as far as what tests to have, what doctors to see, what drugs to give, what symptoms to treat. I can see the use of having atypical diagnosis as benefical to some.

With respect for Dr. Oliver and his behavior on the phone, well, we all can have a bad day, doesn't make it right, but let us not be too quick to judge a man who has indeed tried to help so many and has done important research on Cushings.

I would have the test again and I am confident in the work being done at UTK. But that is just my personal opinion.

Dena, I am sorry you had a bad time of it with Dr. Oliver and it is your right to say, never using him again. But let us not burn too many of our bridges, we don't have many of them.

Okay, I am now off my pulpit and still love you,

Addy
I do want to respond to my good friend Addy real quick. I understand "playing devil's advocate" which may be what drives so many vets crazy when I talk to them. I always want to know the "what if's" and I am sure there are no concrete answers to that, although I would like to know every possible "what if" scenario so that I can make the best decision.
In no way did I mean to say anything bad about Dr. Oliver, other than I was not treated in the way that everyone else seems to always be. I can easily comfort myself by saying he must have been having a bad day, or question what I did wrong, and I am confused as to what the answer is. But I do respect his research, and I do appreciate the "atypical" diagnosis, I was just trying to understand exactly what that means. Most vets in AZ who did not know Dr. Oliver said there was no such thing - it either was or it wasn't Cushings. I don't believe that necessarily, since Simon did progress from atypical to typical - I guess my question is do ALL atypical dogs if left untreated progress to just having Cushing's? That is MY conclusion, and I very well be wrong. I know everyone here has great respect for Dr. Oliver, and I do too - I think that is why the conversation hit me as so incredibly disappointed. But by no means do I mean to burn any bridges. I hope that it wasn't ME - that's all - I hope he was just very busy, or having a bad day, because he was short, unfriendly, and just not at all like the man that so many of you have described conversing with. I will certainly give him the benefit of the doubt. The thing is that he made me wonder if it was ME and what I did or said that was different than others. I asked him what he thought of L-Glutamine for example, and he said he really thought nothing of it, or milk thistle, or Sam-E. If it made ME feel better to give them to Simon, then give them to him. Several answers like that made me feel like I was asking stupid questions that I should know better than to ask him, and that is all I was trying to say. He made me feel bad for calling him, and I can't help that. I thought I had very good and valid questions but was treated like a pain in the butt he couldn't wait to get off of the phone from, and I was surprised to say the least. The "atypical" diagnosis at least piqued the interest of vets here that I don't think were taking it seriously enough at first, so I did not mean to say anything BAD about that diagnosis - I agree with what you said about it, Addy. In fact, I do not think we are in disagreement about anything, at least not in that post that I just read.
I will catch up with you all more ASAP - it's just there is so little time and so much to do right now, and I don't deal with that well - in fact I tend to make it worse for myself. But I need to keep in touch with you all because you mean a lot to me, and so do your dogs - and I really do pray for all of you everytime I think of you, which is often - and I send you all my love and prayers for healing.
I think we are fine, and if there was a misunderstanding, I apologize, because, like I said, I agree with your post.
Love from me and my pack to you, friend. :)

[addy]

Dearest Dena,

No problems:) I was just worried some may misunderstand. You know I love you and little Simon:D:D:D


Thanks for indulging "my puplit speech"!!!!

Hey, WE MISSED YOU!!!!

Addy

[Squirt's Mom]

Something I want to add to this discussion...it is just in the last few years that human doctors have begun to believe in the condition called Fibromyalgia. For years, patients would complain of pain that seemed to have no cause and many of these were prescribed anti-depressants because that seems to be the current "cure all" when docs have no ready answer. Today there is a drug designed to treat Fibromyalgia because it has become an accepted condition in the medical community.

Atypical Cushing's is in it's early years of discovery and research. As such, some vets question the validity of such a diagnosis and simply stick to what they know - true Cushing's. Changes come hard and slow at times, but for those who lived with Fibromyalgia before it was an accepted condition, that did nothing to change their suffering. Accepted or not, they still suffered. The same holds true for Atypical....accepted or not, our babies still suffer damages from elevations in those hormones.

Just my 2 cents worth! :p

Hugs,
Leslie and the girls - always

[SavingSimon]

Dena, I'm glad to see that Simon is hanging in there.

Now, when it comes to Dr. O, I don't think any member of this group has actually ever contacted him by phone. I could be wrong, but every contact a member has had with him, including myself, has always been by e-mail. He has always been very prompt in replying & has been nothing but helpful. He may have been caught by surprise by your phone call, which may explain how he responded to you. He most certainly consults with attending vets by phone frequently, but he will always defer final treatment decisions to the attending vet & owner since he does not practice, only does research.

Debbie

Debbie,
I have read posts from many members that have talked to Dr. Oliver on the phone. I don't think he was surprised to hear from me, as a person who has paid a great deal for his research (he includes his phone number in with the results and says he encourages calls or emails with any questions). So the only reason I think I caught him on a "bad" or "busy" day was because he was not as kind to me as he has been to so many others that talked to him. Regardless of WHY he treated me the way he did, the fact is that I didn't deserve it, especially after I have sent so much money his way, and only to find out that he basically doesn't know the significance of his own research.
If anyone knows WHY melatonin should not be given to dogs that are on Trilostane, Dr. Oliver did not give me a good answer to that, only wanted me to know to STOP giving Simon melatonin. I am worried he will lose the benefits of a good supplement, I have not read anything about bad cross-reactions or interactions between the two substances, and am very curious why he would be so adamant about something that he couldn't explain, so if anyone CAN explain, I would appreciate it. Thanks in advance to whoever out there knows the answers! :) Maybe Dr. Oliver has more to say about it in an email than on the phone - because I think there are quite a few Trilostane dogs on melatonin because they THOUGHT Dr. Oliver recommended it, and I just want people to know he was very clear, firm and adamantant about NOT giving Simon melatonin any more, though he couldn't give me a good reason. That is really my main concern about my conversation with him. (Also he doesn't think Sam-E or milk thistle does much good, he ONLY recommends flax hull lignans for dogs on Trilostane, which was interesting but NOT clarified despite my desire for and questions trying to get clarity on those issues).

[SavingSimon]

Dena, I want to thank you for your honest post. It did give me a lot of concerns regarding my vet and that of UTK. I appreciate you honesty and frankness.

I didn't know that "atypical" was a word Dr. O. invented.

I believe your questions were honest and fair, and the fact he was vague bothers me. I know he is a researcher, but what you said in your post sounded so much like myself, I am now concerned for my own dogs test being sent there.

I only have a GP right now who has failed me a few times. The clinic/staff is worse.

My old vet in MI diagnosed my dog, over the phone no less with Cushings. No tests, just clinical signs. Now the vet here where I live now admits, that "your first vet was right". Meaning my old wise MI vet.

My MI vet recommends trying the drugs, he thinks the atypical stuff is B***. As you so well pointed out, they don't know, so lets try this.

My dogs blood will go out to UTK today, but if atypical comes back, I will question, like you did.

Thanks ever so much for sharing, and I wish you and your dog all the best..........Jean

Thank you Jean. I will be praying for you and your dog to find a wonderful Vet that can help guide you through this scary process of making decisions. Sounds like the first one you went to is the best, is it possible to continue with him? Can you go to my visitor wall and leave me a link to your thread, or leave one here?
I found it interesting that even Dr. Matz, who is the arrogant IMS that recommended I get the UTK testing done, basically through out the results when he got them, and told me to ignore them, because they don't really know what all of that means. (Thanks for telling me AFTER I spent a lot of money getting the test done twice!) :mad:

[SavingSimon]

Something I want to add to this discussion...it is just in the last few years that human doctors have begun to believe in the condition called Fibromyalgia. For years, patients would complain of pain that seemed to have no cause and many of these were prescribed anti-depressants because that seems to be the current "cure all" when docs have no ready answer. Today there is a drug designed to treat Fibromyalgia because it has become an accepted condition in the medical community.

Atypical Cushing's is in it's early years of discovery and research. As such, some vets question the validity of such a diagnosis and simply stick to what they know - true Cushing's. Changes come hard and slow at times, but for those who lived with Fibromyalgia before it was an accepted condition, that did nothing to change their suffering. Accepted or not, they still suffered. The same holds true for Atypical....accepted or not, our babies still suffer damages from elevations in those hormones.

Just my 2 cents worth! :p

Hugs,
Leslie and the girls - always

Leslie,
I might seem to be contradicting myself here, but what I think they are calling "Atypical" Cushings is just the early stages of Cushings, or not fully developed Cushings, that will eventually in all cases turn into full blown Cushings if the dog lives long enough. That's just my opinion, and my 2 cents worth ... I knew Simon had Cushing's and was frustrated it was being called everything BUT Cushing's so at least when it was called "Atypical" for that time period the word "Cushings" was in there. I have a feeling that it has to do with the location and size of the brain tumor, and the rate at which it is or isn't growing. I think if the tumor grows, or moves to where it is affecting more of the pituitary gland, what once was called "atypical" suddenly becomes just regular Cushings. I agree that the dogs with "atypical" Cushings have a disease, I just think the disease is Cushings that doesn't have enough clinical signs yet to be called what it is. I hope that makes sense. I don't mean to deny the existance of the problem - it is very real and it is very frustrating to not have anyone take it serioulsy until it is officially called "Cushings" - I agree, and think treatment could help and be started earlier if more Vets would trust the observations and knowledge of the dog's owner, who notices that something is wrong, and most signs but not all point to Cushings. It seems they will not take it seriously until the Cortisol level is serious enough, and I don't think that the test is as reliable as my own observations along with the other clinical signs. Simon was getting Cushings while he was thrown in the "atypical" category. I realize all dogs are different, but would guess that is the case for most dogs. They are developing the disease, and the only way to get it acknowledged as real at all at this point is to go through Dr. Oliver and have him call it "atypical", which I believe is just a precursor to full blown "Cushing's disease".

[SavingSimon]

Hi everyone, sorry it has taken me so long to get to posting here. I am sorry this update is so overdue. First of all, I guess I need to ask a moderator to change the name of Simon's thread again - he does NOT have "atypical" Cushings anymore. According to Dr. Oliver, as well as Dr. Warfield (T.K.) and Dr. Burrows, and Dr. Matz, so when four vets agree on something anymore I am amazed - so maybe time to change the thread and take out the word "atypical". I learned, what I suspected was that "atypical" is a phrase kind of coined by Dr. Oliver at the U of TN at Knoxville to describe dogs that don't quite fit all of the criteria for Cushing's disease, most importantly, the cortisol level.
Since we got home from visiting my sister who (thank God, and thank those of you who cared, and who prayed, and who were there for me and Simon, and my sister) is fine, on the road to recovery from her surgery, and she did not have cancer!! That is another miracle in my family that I do not take lightly, and truly believe that all of the prayers made a difference since the doctors thought it probably was ovarian cancer. Thank you so much for your prayers and your concern!
On a Monday soon after getting home, I called Dr. Oliver to ask several questions. I didn't find him as friendly as so many of you have - I'm not sure if he was just pressed for time because it was a Monday, or because he had been on vacation, or he just didn't like my questions. Whatever it was, it was just different than I expected when I talked to him. The conversation was maybe twenty minutes and then he said he had a lot of work to get to and needed to go. That wouldn't have made me feel so bad if I didn't have such high expectations, I guess, and if he hadn't made me feel kind of stupid - I guess maybe I caught him on an "off" day, from what I have heard and read from others that have talked to him. Since I was about to switch Simon from ketokonozale(sp?) to Trilostane and T.K. originally said Dr. Oliver said that Trilostane could kill Simon I wanted to know why he said that. So that was my first question. He explained that Trilostane is a dangerous drug, it is not his first choice of treatment for any dog. He did look up Simon's test results, and said "your dog does NOT have 'atypical' Cushing's anymore, I think we can agree to refer to this as full blown Cushnoid because of his cortisol levels" - so what I got out of that is that the line between atypical and "typical" Cushings is all depending on the dog's cortisol level. Though I wonder what he would call it NOW - I'm not going to bother Dr. Oliver again unless I feel it is a life or death situation, as he had me thinking this was. He went on to kind of back-pedal and say that if my Vet wants to treat with Trilostane, I should listen to my Vet. When I asked him why he didn't like Trilostane, when at least it isn't destroying the adrenal cortex, he replied that he didn't particularly favor any treatment over another, he just thought it should be approached conservatively (which T.K. and I agree with - Dr. Matz, on the other hand wanted to take a more aggressive approach) and he did not like that if someone had to switch from Trilostane to Lysodren that it is not easy, and you have to take at least a month to make sure the Trilostane is out of the dog's system. He also said that Simon's female hormones were already high, and that the Trilostane would definitely raise his estradiol levels - when I asked the signicance of that, and how it would affect Simon, he was very short with me, and basically said he didn't know, that it might not mean anything, all dogs are different, etc.. Then he told me that if I do treat with Trilostane I should NOT continue the melatonin. When I asked why he seemed frustrated, and said because there are no clinical findings that it makes any significant difference. That answer left me with the question, "then what would it hurt?" but Dr. Oliver had been so firm in the emphasis NOT to use melatonin, but just to continue with the lignans, I kind of felt like I better stop asking him so much he felt I was questioning him personally or something - I am not sure. It was not the kind of conversation I expected with him is all I can say. He really didn't have answers to my questions - or the time to give them, I'm not sure which, like I said, but if I hadn't heard so many wonderful things about him from so many of you, I would NEVER want to talk to him again. It felt very futile. Though I learned Trilostane should not be combined with melatonin - I can't tell anyone why. He was really not open to any of my "why" questions - it was almost like he wanted to say "because I said so". I did learn a couple of things I didn't know. One is that Simon definitely had PDH not "atypical" Cushings because of his last test results, and that melatonin should not be given with Trilostane according to Dr. Oliver for reasons he didn't really elaborate on, though he seemed to feel strongly about it, and that in my opinion "atypical" is what Dr. Oliver calls Cushing's disease that does not have the expected cortisol levels, but probably will advance to having it at some time - there really is no such thing is "atypical" Cushings IMO it is just called that when they aren't positive that it is Cushing's disease because it changes to "Cushing's disease" very clearly, as soon as the dog's symptoms and mainly cortisol test results indicate Cushings and no other options.
I got off the phone and cried. To be totally honest, I got off the phone, cried, felt like a complete moron and wondered why the guy is so nice to everyone else, and felt terrible. I am glad that Terry called me the next day. It was really nice to talk to someone from here and be encouraged, because I felt really down after that talk. I'm not sure if it was just the way he talked to me or the combination of that and KNOWING that Simon DEFINITELY has Cushings, but I think I am just too sensitive - I knew he had Cushing's before anyone would confirm it.
That reminds me the title to Simon's thread needs to be tweaked a little more, so I "fixed" it for this post, not sure if a moderator wants to change it to what it is now, or not.
While we were on the trip, it is a trip I make with Simon a lot, but usually I am with him, and this time he was alone outside at my brother's most of the time, and developed a case of the runs with blood in it. This concerned me, and though T.K. was out in the middle of Lake Powell, he docked to be able to call and check on Simon every day. When we got home was when I called Dr. Oliver, because T.K. checked Simon's blood, and his liver values were higher, maybe from the keto so he decided to start him on a low dose of trilostane. I was scared to give it to Simon until I talked to Dr. Oliver, scared to talk to Dr. Oliver, and worried about Simon because it wasn't the trip that caused his bloody runs, as far as I could tell because he still had it. Also, he developed a new symptom - when I called him one day, he looked all over for me except for where I was at. T.K. thought dehydration from the diarhhea could be causing disorientation. I was afraid his brain tumor was growing or something (always worst case scenario in my mind). So, after I talked to Dr. Oliver, my next priority was to cure Simon's case of tummy troubles, and I took him to his other "regular vet", Karen Burrows for that. Sorry everyone that this is so long - a lot has happened - I am going to take a break here because I don't even know if this whole post will fit, and then finish up in a second post. I also want you guys to know it has a happy ending and I will be back to finish and give you the final part of this update by this evening ... (I hope) ...

Again, I apologize that I didn't finish this sooner, I am still so behind on so many things ... but I will try to wrap this up now and get you all up to date on Simon's progress in my next post. This one is one of my "long ones" so I just wanted to add a brief note that I am continuing from here in my next post.

[SavingSimon]

So, we weren't sure what the cause of Simon's bloody diarrhea, if it was stress from the trip, the new medicine, ketoconozale, or just a part of his disease process. I was very concerned, and so was his vet who called as often as possible from his vacation. Once Simon and I got home, the diarrhea did not improve. I also have been giving Simon probiotics for a long time, which weren't heping either. T.K. didn't want me to give him any other medication, like Pepto, or Pepcid, or anything else at all. So whn I got home, we went to his other vet, Dr. Karen Burrows and she prescribed Metronidazole, which took a couple of days to work, but when it finally worked, Simon was much better. I also had been feeding him only cooked chicken and rice. (Which is hard to do when you have seven dogs, so though ideally I would like to cook for Simon every day, realistically, I need to find him the best quality dry food that I can feed him and the rest of the pack.) Maybe you guys have some input here - it is between "Blue Buffalo" brand and "Nutro Ultra Holistic" - both foods are holistic, I originally thought Blue was the best, but the dogs prefer Nutro and seem to feel better on it (which surprises me because the Blue is more expensive, and has cooler shapes, LOL). Seriously, I am really open to nutritonal input. Like I said, I would LOVE to have the time and ability to separate Simon from the other dogs every day, and cook for him and feed him, and if I absolutely have no choice, (like when he was sick) I will beg my friends or family to cook for him - my cooking would probably kill him!) I am single, don't cook for myself, and have never liked cooking. If there is a dog food out there that is quality food that is healthy - even if it is expensive I am sure everyone probably has differiing opinions, but which one is the best? I know it isn't ideal - but if you had to feed your dog food from a bag or can, what would you feed him or her? If you want you can PM me so this doesn't become a big group argument. You all have definitely taliked me out of Science Diet, and so has the guy that works at the pet food store here, who swears by Nutro, which is why I switched to Nutro's holistic food, he said he has compared EVERY food and all the ingredients, and Nutro has three sources of protein, salmon, lamb and chicken, and his research led him to conclude Nutro is the best. Also, I realize Simon could have had diarhhea from me switching food, but that has never happened to him before, and it didn't happen to the other dogs - in fact - they do better and poop less since they have been on Nutro, it doesn't have any bad ingredients that I see, but I still would like you guy's feedback. Blue seemed like a good choice too - but my dogs totally ALL disagreed - the other six plus Simon.
Anyway, I was so scared he had something called "HGE" (I think that is the name of it) because I always think the worst. At least the metronidazole cured his problem within a week, and he is doing fine on the Nutro, so I would hate to switch again, unless I learn something bad about Nutro (this isn't regular Nutro - it is the 'holisitic' one).
Anyway, during all of this time, with T.K. checking in on Simon from two different vacations (including his daughter's wedding in HI) he pretty much talked me into trying Trilostane. He thought the keto was possibly causing the digestive issues and even though he was only on 50mg twice a day, it had already increased his liver values a little bit (by one point actually). So, he prescribed it in a very much different way than Dr. Matz was going to - he was going to put Simon on the maximum dose once a day. T.K. had me put Simon on the minimum dose and split it 12 hours apart.. So he finally started Trilostane, 10 mg twice a day. And I have the results of his fist ACTH stim test, and his CBC that was somewhere in the 10-14 days after he started taking trilostane. He was just starting the Metronidazole and so some days he wouldn't eat, so I'm not positive if it was ten or fourteen days, since a few days he was off of the Trilostane - so I am not sure how accurate the first stim test was, but the results were all (finally) in the normal range. His liver values increased a little more. After the first very scary week, for which I thank Terri, Corky's Mom for being there for me at all hours, literally, of the day and night, to let me know what I was seeing was "normal" or at least very similar to what Corky went through at first (it seemed kind of like Simon was going through some kind of withdrawl when he sarted the Trilo, and I was really scared, especially after reading the article on Trilostane on drugs.com, and after the talk with Dr. Oliver0.
As usual, I am being pretty wordy, and this is taking longer than I thought, so I will post Simon's test results in my next post. T.K. got back from his vacation, and I thought he would be as thrilled with the results as I was but he said "we can do better" and wanted to raise Simon's dose of Trilostane about a week and a half ago to 15 mg twice a day. Again I was afraid, but T.K. asked me to just trust him, and said he wants to see Simon's ALK PHOS levels lower, as well as his post stim test cortisol levell (which was at the high end of normal last test). I made sure he was taking into account the fact that Simon may have missed some doses and he assured me he was.) I know T.K. takes a very conservative approach,and I also know a lot of other vets would have Simon on a much higher dose once a day, so he makes me as comfortable as I possibly can be giving Simon Trilostane. And the good news is that Simon is doing well. I think I was about to post that when T.K. called and said he wanted to raise the dose, so I had to go through a little panic and anxiety before posting again. Two days ago I noticed Simon has more spring in his step, and his back legs are regaining strength!!! :) His appetite is a little more normal, and his "pot belly" is starting to return to those "six pack abs" LOL!!! I know he is feeling better, and so am I. It took the LEAST amount of Trilostane to accomplish where we are at and I think it is important for others to know that the drug manufacturer recommends starting at the lowest dose now, and gradually going up, instead of the other way around, which some Vets, and clients may not be aware of. I know this was the right way to do this for Simon, and hope you ask as many questions as I do of all of the Doctors and specialists giving you advice on treatment for the friend you love that has Cushings. We will keep you posted. I pray all continues to go well for Simon, I worry about his liver, cholesterol, and a couple of other things - the two episodes where he was disoriented, but outside of that, we are doing well, and very pleased with his treatment and treatment plan. I am also so grateful for this group,. and all of your support. We need you all, thank you for your prayers, and for being available for us .... looks like we are finally on the right track! I will post numbers, and a little more info later as soon as I get a chance. We love you all! Love and happy wags, and continuing prayers for you all and all of your sweet loved ones. Love, Dena.Simon & pack

[Franklin'sMum]

I might seem to be contradicting myself here, but what I think they are calling "Atypical" Cushings is just the early stages of Cushings, or not fully developed Cushings, that will eventually in all cases turn into full blown Cushings if the dog lives long enough.
Hi Dena,
I think, meanwhile a lot of atypical cases become 'true' cushing's, from my experience here that it is also possible (and not uncommon) for a pup to have 'true' cushing's, and atypical cushing's at the same time.

I have a feeling that it has to do with the location and size of the brain tumor, and the rate at which it is or isn't growing. I think if the tumor grows, or moves to where it is affecting more of the pituitary gland, what once was called "atypical" suddenly becomes just regular Cushings.
Not sure about this one. The hormones involved are generally produced in the adrenal glands. Granted, the pituitary gland is in constant communication with the adrenals. The pituitary gland and the adrenal glands are all part of the endocrine system, so maybe something 'out of whack' here, will also be 'out of whack' there. There is a thought that atypical cushings could viably be considered "pre" cushing's, but again, not all pups who progress to having true cushing's continue to have elevated hormones.

I agree that the dogs with "atypical" Cushings have a disease, I just think the disease is Cushings that doesn't have enough clinical signs yet to be called what it is. I hope that makes sense. I don't mean to deny the existance of the problem - it is very real and it is very frustrating to not have anyone take it serioulsy until it is officially called "Cushings" - It seems they will not take it seriously until the Cortisol level is serious enough, They are developing the disease, and the only way to get it acknowledged as real at all at this point is to go through Dr. Oliver and have him call it "atypical", which I believe is just a precursor to full blown "Cushing's disease".

Well, two separate things, both can cause the same symptoms, and similar findings on lab results. Both issues can damage the pups organs, however treatments for each condition may not overlap. For instance, with true cushings but no elevation of the intermediates, melatonin and lignans would not make a huge impact on the level of the cortisol- it would not be as effective as trilo or lyso. If only the intermediates are elevated, obviously trilo would not be the ideal treatment, as most pups would experience an even higher elevation in the hormones, causing stronger symptoms and possibly more/faster progression of the illness.
As for Dr O's opinion re: melatonin use and trilo, I have no idea :o. It was once explained to me that if you're using trilo, the melatonin would be similar to using a bandaid each day on a scratch that you re-open each day- it may not help the scratch heal, but it may stop it from getting worse.
Possibly Dr O's non-commital answers about milk thistle and sam-e are because they aren't used in and of themselves to treat atypical cushing's. His field is intermediate hormones, and he excels (IMO :)). My vet had never heard of atypical cushing's, but I've sent him quite a bit on the subject, and he's learning :D. You might ask the milk thistle and sam-e questions of your IMS- quite often they recommend it (to help the liver regenerate).
Hope that helps, and if I've goofed anything, I'm sure someone will come along soon to clear up the mess :) Hugs to Simon
Jane, Franklin and Bailey xxx

[SavingSimon]

Dearest Dena,

No problems:) I was just worried some may misunderstand. You know I love you and little Simon:D:D:D


Thanks for indulging "my puplit speech"!!!!

Hey, WE MISSED YOU!!!!

Addy

Thanks Addy, likewise. Now I am going to try and catch up on all the links everyone has posted on my "visitor wall". We love you too.
Dena, Simon, and pack. PS. Can we get more smilies? Like hearts and some other ones? :):):)

[SavingSimon]

Hi Dena,
I think, meanwhile a lot of atypical cases become 'true' cushing's, from my experience here that it is also possible (and not uncommon) for a pup to have 'true' cushing's, and atypical cushing's at the same time.

Not sure about this one. The hormones involved are generally produced in the adrenal glands. Granted, the pituitary gland is in constant communication with the adrenals. The pituitary gland and the adrenal glands are all part of the endocrine system, so maybe something 'out of whack' here, will also be 'out of whack' there. There is a thought that atypical cushings could viably be considered "pre" cushing's, but again, not all pups who progress to having true cushing's continue to have elevated hormones.


Well, two separate things, both can cause the same symptoms, and similar findings on lab results. Both issues can damage the pups organs, however treatments for each condition may not overlap. For instance, with true cushings but no elevation of the intermediates, melatonin and lignans would not make a huge impact on the level of the cortisol- it would not be as effective as trilo or lyso. If only the intermediates are elevated, obviously trilo would not be the ideal treatment, as most pups would experience an even higher elevation in the hormones, causing stronger symptoms and possibly more/faster progression of the illness.
As for Dr O's opinion re: melatonin use and trilo, I have no idea :o. It was once explained to me that if you're using trilo, the melatonin would be similar to using a bandaid each day on a scratch that you re-open each day- it may not help the scratch heal, but it may stop it from getting worse.
Possibly Dr O's non-commital answers about milk thistle and sam-e are because they aren't used in and of themselves to treat atypical cushing's. His field is intermediate hormones, and he excels (IMO :)). My vet had never heard of atypical cushing's, but I've sent him quite a bit on the subject, and he's learning :D. You might ask the milk thistle and sam-e questions of your IMS- quite often they recommend it (to help the liver regenerate).
Hope that helps, and if I've goofed anything, I'm sure someone will come along soon to clear up the mess :) Hugs to Simon
Jane, Franklin and Bailey xxx

Dear Jane,
Thanks for helping me understand the melatonin thing better. I wish Dr. Oliver would have just given me an analogy that was simple like that, but his reason was just "research does not show it helps". The other thing he said was that "Your dog no longer has atypical Cushings I think it can be safely said he has 'full blown Cushings' judging from his last ACTH stim test. So I don't think it is possible to have atypical, and regular Cushings at the same time, because if it were possible, Simon would definitely be a candidate. The reason Dr. Oliver did not recommend trilostane is that it would "definitley raise his estradiol and possibly other female hormones, which already are off the charts high". So if the other hormones are what cause "Atypical" Cushings I think he would have said Simon had both, but Dr. Oliver definitely explained it as and either/or condition - saying Simon has "full blown" Cushings now, NOT atypical Cushing's which is what all of the other consulting vets, and IMS's said also as soon as his cortisol went over normal ranges on the stim test. So far, Simon hasn't had any bad side effects from his "female hormone levels raising" as they most certainly are, according to Dr. Oliver, but he said that the only thing that might do is mimick Cushing's disease ... making it harder to treat (and making me a little more confused). :confused::confused::confused: OH WELL, such is this awful disease!!!
Love to you and your furry kids, from me and mine,
Dena

[Franklin'sMum]

The other thing he said was that "Your dog no longer has atypical Cushings I think it can be safely said he has 'full blown Cushings' judging from his last ACTH stim test. So I don't think it is possible to have atypical, and regular Cushings at the same time, because if it were possible, Simon would definitely be a candidate.
Hi Dena,
Lori's (HarleyPomMom) little boy Harley has both atypical and PDH cushings. He started out with only elevated hormones, and sometime later (need to check with Lori on exact timeframes) testing showed cortisol became elevated also. Without treatment, both his hormones and his cortisol would remain elevated. Lysodren erodes some of the adrenal cortex (the outside layer), and thereby cuts down the amount of cortisol and hormones the body is able to produce. Estradiol (one of the intermediate hormones) is produced both in the adrenals, and in other parts of the body as well, so Lysodren may not always completely lower estradiol, that is why some use melatonin alongside Lyso. Trilostane works in a different way. Others can explain this in the more technical way, but I can't pronounce, let alone spell half that stuff :o:). In a nutshell, trilo inhibits the pathways of cortisol production. Easiest way for me to understand that is to say to myself 'the cortisol train is de-railed on route to the station'. :o
Now, as you know, trilo can interfere with the hormones, which is why trilo isn't usually the first choice when one knows that the hormones are an issue. Specifically it's effect on aldosterone, which is the hormone that regulates the body's electrolyte balance. Which is why it's essential that at each stim test the electrolytes be checked. I realise that you would probably be aware of this, but figure repetition can't hurt :o.

The reason Dr. Oliver did not recommend trilostane is that it would "definitley raise his estradiol and possibly other female hormones, which already are off the charts high". So if the other hormones are what cause "Atypical" Cushings I think he would have said Simon had both, but Dr. Oliver definitely explained it as and either/or condition - saying Simon has "full blown" Cushings now, NOT atypical Cushing's which is what all of the other consulting vets, and IMS's said also as soon as his cortisol went over normal ranges on the stim test. So far, Simon hasn't had any bad side effects from his "female hormone levels raising" as they most certainly are, according to Dr. Oliver, but he said that the only thing that might do is mimick Cushing's disease ... making it harder to treat (and making me a little more confused).
If intermediate hormones and normal cortisol=atypical cushings, and increased cortisol = true cushing's, and if Dr O said "off the charts" with regard to Simon's hormones, I would take that as it is possible to have both 'true cushings' and atypical cushings. As I wrote earlier, Harley has both, and he's not the only pup to have both cortisol and intermediates be elevated. My mind is drawing a blank right now, but there are others.
My understanding (please somebody, correct me if I'm wrong) but if trilo is increasing the intermediates even more, then Simon would still be having a form of untreated cushing's happening. Because the trilo would be treating the cortisol, but the hormones would be remaining untreated. That would be enough to cause confusion. If you were to phone up and tell the vet that symptoms aren't getting better, and he/she says that you could take the dosage of trilo a little higher, and they'll recheck in 2 weeks. If the cortisol is currently being controlled, but the symptoms you might be seeing are due to the intermediates being out of control, that slight increase in trilo dose might be dangerous. Cortisol could become too low, electrolytes might be unbalanced, and as you know, each pup handles things differently. Simon might not give an indication that something is wrong, or he could handle the whole theoretical situation with no problems.
Now, according to what Dr O said, if the elevated female hormones could mimic 'true' cushings, to my mind anyway, that would make treating with trilo all the more difficult. As for female hormones, my little guy Franklin has been getting lignans and melatonin for a month, and his brother Bailey doesn't seem very interested (anymore) in trying to hump Franklin. :) The kids can have a play date, and sniff and potter around and have peeing contests, without Franklin carrying a "Bailey backpack" :eek::rolleyes: Keep in mind that Franklin was originally dx'd as PDH (long story), and I jumped the gun and began treatment with trilo last year. He had been off trilo for 6 weeks before we got the UTK panel done in May this year.
Hope that some of this helps, and that I haven't confused the issue :o

Jane, Franklin and Bailey xxx

[labblab]

Here's a couple more thoughts to throw into the "mix"...;)

I think there are still a lot of unanswered questions regarding the incidence and clinical significance of elevated intermediate hormones. As we know, Dr. Oliver is probably the foremost researcher in this area, and even he acknowledges that a great deal remains to be clarified. We do know that some dogs may suffer from elevated intermediates without elevated cortisol, and that for some dogs these elevated intermediates can cause clinical symptoms that benefit from treatment. So for symptomatic dogs who have not evidenced elevated cortisol via ACTH or LDDS testing, I do think there is value and usefulness in attending to their intermediate hormone profile.

However, as time goes on, I'm becoming more doubtful that the opposite situation commonly occurs -- elevated cortisol WITHOUT elevated intermediates as well. The more dogs that undergo UTK testing, the more it appears as though most dogs who are diagnosed with "true" Cushing's will also have some elevated intermediates in their profile, too. I honestly cannot think of a single dog here who underwent UTK testing and did not exhibit at least a few elevated intermediates if they also suffered from elevated cortisol.

For dogs with elevated cortisol, I think that most vets still consider that to be the first priority in terms of treatment. It is highly likely that elevated cortisol will eventually cause clinical problems of some sort, whereas it is not yet clear whether/which intermediates will cause symptoms in any given dog. For that reason, I think that many vets do not yet see great value in additionally performing the full UTK profile after it has already been established that a dog has elevated cortisol via a standard ACTH or LDDS test. In that same vein, even though trilostane is known to additionally elevate certain intermediate hormones, it is not yet clear whether that actually presents clinical problems for the majority of treated dogs once their cortisol levels are well-controlled. For additional back-and-forth discussion about this issue, you can take a look at this existing thread here on our Q & D forum:

http://www.k9cushings.com/forum/showthread.php?t=1896

Marianne

P.S. Dena, I apologize for not having the time right now to go back and review all of Simon's test results, but I do remember feeling puzzled when you first started posting. Because I BELIEVE that his test results -- even when you first joined us -- already exhibited elevated cortisol. However, your vets seemed to instead be focusing only on the elevated intermediates. So I'm not certain that Simon ever has suffered from elevated intermediates alone, without the elevated cortisol component as well. When I have more time, I'll try to check back through your postings...

[labblab]

Hi Dena,

Me again! OK, I've just now looked through Simon's test results. Clear back in 9/09 he tested "positive" for Cushing's on the LDDS test. And on his very first UTK panel performed during 3/10, his cortisol was already an elevated 320.8 (normal maximum was 151). So it seems to me as though he would have been properly labelled as genuinely cushinoid (rather than "atypical") from the get-go. So in his case, I don't know that there is any evidence that he progressed from ONLY having elevated intermediates. It looks to me as though he has suffered from true Cushing's throughout this past year...

Marianne

[littleone1]

Hi Dena,

I hope you don't mind my response to Marianne.

Marianne, this is such a great explanation. I really believe that there are many of us that really appreciate it.

[addy]

It can be a bit confusing. Zoe was diagnosed with atypical and typical, four of her five intermediate hormones were really elevated along with her cortisol, though she is presenting bilateral hair loss and rats tail as her main symptoms. She also had been tested durring a severe flare up of colitis so we are not sure how this affected her test along with her stressed out state of mind durring the long testing, but Dr. O said "Significant" adrenal activity yet IMS is treating with melatonin and lignans for 3 months unless we develop new symptoms as we do not have strong symptoms yet except for hair loss.

Whew, that was a long paragraph!!! I am out of breath!!!

I did question how Zoe could have "Significant" adrenal acitivty but so few symptoms and her blood work was not really that bad. I contributed it to the stress, she was really out of her head, and the colitis flare up. IMS seeems to agree.

Medicine is not an exact science so I think as with any disease, there will always be questions, nothing is ever black and white, sigh!

Addy

[Franklin'sMum]

Marianne, this is such a great explanation. I really believe that there are many of us that really appreciate it.

Including me :), thanks for clarifying Marianne

[Squirt's Mom]

For a long time I was under the impression that a pup could have both true and Atypical Cushing's. But at one time someone asked Dr.O about this and he said that if the cortisol is elevated that is considered true Cushing's even if some or all of the intermediates are elevated as well. The key is the cortisol. It sounds like your vets are unfamiliar with Atypical and are under the same impression I was. ;)

If the cortisol is normal but only some/all of the intermediates are elevated then you have an Atypical pup. If the cortisol is elevated, then you have a pup with true Cushing's...irregardless of the levels of the intermediates.

So if Simon's cortisol was elevated along with his intermediates, then he is a true cushinoid pup, not Atypcial.

Since his intermediates were also elevated, then Trilo is not an option. Since Lyso will address all of the hormones, this is the drug of choice for him. He will be monitored via the ACTH just as always with the Lyso. After a month or so on the Lyso, I would have the UTK panel run again to see if the Lyso has brought down the intermediates, especially the estradiol. Estradiol is the only hormone that Lyso may not be able to treat because this hormone can be produced outside the adrenal glands and Lyso works only on the adrenals. This is when the lignans and melatonin are useful - to treat estradiol produced outside the adrenals.

Over the coming years, I think we will see some developments in Cushing's concerning the intermediate hormones and their effects on our babies. More and more vets are becoming aware of the possibility that these hormones can cause damages as well. I still come back to Fibromyalgia as a comparison....after many years of the medical community phoo-phooing the condition and their patients who suffered with it, it is now an accepted and treatable condition. ;)

Hang in there! You're doing a fine job, mom!

Hugs,
Leslie and the girls - always

[addy]

Wow Leslie,

This discussion has really helped me understand Cushings and hormones and the fact that my IMS does not understand atypical nor did I. From what has been said here, Zoe has true Cushings. My IMS just does not want to treat her with lysodren yet. She said she wants to see if Zoe can stay healthy and then retest. I think she wants to recheck the cortisol when Zoe isn't having a colitis flare up and also wants Zoe to exhibit more symptoms.

Dena, when Simon was tested was he having any other health issues? Just wondering.

Thanks to all of you for taking the time to explain in a way we all now understand. :) Too bad our vets can't speak as well as all of you.:(

Addy

[apollo6]

Don't have much input. Pretty confusing to me.:confused:
Only know with Apollo, both adrenal glands are enlarged similarly, had pot belly, very elevated liver, kidney, pancreas readings, loss of hair on both sides, ears and tail-starting to come back. First ach stim test high. weakness in hind legs only started a little over a month.
Trilostane for pituitary cushing. LYs and the other if adrenal gland tumor.

[labblab]

Since his intermediates were also elevated, then Trilo is not an option. Since Lyso will address all of the hormones, this is the drug of choice for him.
I just wanted to offer a somewhat different perspective here, and that is to reiterate that I've now come to believe that most all pups who exhibit elevated cortisol will also exhibit one or more elevated intermediates. If elevated intermediates were an absolute contraindication to the use of trilostane, it would never be considered as a Cushing's treatment option -- which we know is not the case. I think there is still a huge question mark as to whether or not elevated intermediates (including elevations caused by trilostane) will be problematic for any given dog. For that reason, I think that many vets will continue to at least initially prescribe trilostane regardless of the status of a pup's intermediate profile.

Marianne

[littleone1]

I need to add my two cents worth.

Corky has been taking Trilostane for about 10 1/2 months now. Some of his intermediate hormone levels are elevated, but they are not causing any problems for Corky. In reality, the only way I would switch to Lysodren is if his adrenal tumor started playing havoc on his major blood vessels and had to be eroded away. However, there is no guarantee that the part of the adrenal gland that would be eroded away is actually where the adrenal tumor is located. Even though it is infringing on a major blood vessel, it is not creating any problems. I sometimes feel that there is really not enough known about Trilostane and the effects it has. I am going with my gut feeling about using Trilo for Corky.

Dena, my friend, I hope you don't mind the postings on your thread.

[SavingSimon]

Hi, it sure looks like I have a lot of input and opinions to catch up on. I also really want to catch up on all of your threads, so if you haven't yet, please post a link to your thread on my visitor's page. I have had a very busy week. I actually still am so behind on so much, I just wanted to make a brief post that hopefully I will be catching up on Simon's thread, and on all of yours this weekend. I am going to devote one entire day to it - Saturday, or more likely Sunday. Just want you all to know I'm not trying to ignore anyone, and will reply when I catch up here. I also really look forward to reading about your stories and your dogs, and am frustrated that I haven't had the chance to do so yet - but I will - I really hope this weekend.
I am not sure if anyone answered this question and don't have time to check right now, but I thought that this site had a link to where I can order the flax hull lignans for Simon, but I can't find it any time I look. Can someone please give me a link - I had a really hard time finding that stuff the first time, and it all got ruined in the heat on our trip to CA, so I really need to order it. If someone could just post a link here to where I can order it from, or on my visitor page either one, I would really appreciate it, since ordering that lignan is one of the things on my "MUST DO ASAP" list. Thank you all, and love and prayers for each one of you and your loved ones.
Love,
Dena, Simon, and pack
PS. Terri I hope Corky is doing better and hopefully will get the chance to talk to you this weekend too.
God bless, help, and watch over you all.

[Squirt's Mom]

Hey Dena,

Here is a link, found in our Helpful Resource section under the first thread:

http://www.vet.utk.edu/diagnostic/endocrinology/pdf/20100810-LIGNAN-Write-Up-Revision03.pdf

Scroll down to page 2 and you will see a section on SDG lignan sources and further down sources for the HMR lignans.

Hope this helps!

Hugs,
Leslie and the girls - always

[apollo6]

Just a hi and hoping you and Simon are doing better. It is hard to keep up with every one's threads.

[addy]

Hi Dena,

I thought I posted about Zoe's lignans but don't see it, I must be having one of those moments:D

I get Zoe's lignans from Vitacost on line, they ship right away

NSI Flax Seed Lignans -- 40 mg - 120 Capsules Zoe gets 2 capsules which is 16 lignans to her 18 pounds, that was as close as I could get.

It is 20% lignans so each capsule gives you 8. The other brands I checked seemed better for larger dogs.

Hope that helps.

Addy

[SavingSimon]

Hi. I just lost a page where I answered you all now that I am caught up on what people are saying here. That was irritating, and to be honest I am frustrated.

Thank you for being nice, but how can I possibly be doing a "good job" if my dog is on the wrong drug? But on the other hand, Apollo's Mom said the exact opposite of what someone else said to me today, and basically of what all of you seem to agree on. Then there are fourteen out of sixteen vets that were telling me "Trilostane is the safer drug, with less side effects" which I am learning is complete B.S. and if you read, under veterinary medications, at www.drugs.com about it, the study that they did with 100 dogs on Trilostane about 5-7 died right at the beginning of the study. Then they break it up into thirds, and EVERY group of dogs in that study had some horrible reaction that pretty much killed them. So I don't know if it is the drug company preaching it is "safer with less side effects" or what - but I am from the "show me" state - and they need to show me some evidence that it is true, on my own I can't find it. It works different than Lysodren, but no one can, or maybe just no one has explained (except Marriane) how Trilostane works. And I have questions about that - is the cortisol blocked, or where does it go? Is it rerouted somewhere else? I doubt it just dissapears and if it did then Trilostane would be a miracle drug, which is pretty much how it is marketed and preached by Vets (14 out of the 16 I saw with Simon).

I am really ticked off about this. I did not know better and even one of the two resisting Vets became swayed that Trilostane was "safer" which is why Simon is on it. It is helping the cortisol levels, I have no idea what it is doing to his hormones, but if what Dr. Oliver says is true, then it isn't doing anything good for them, which I guess can be tested, and I will check on.

Obviously, with a pituitary tumor EVERYTHING is going to be affected - NOT just cortisol ... that part of the brain regulates an awful lot, and if what Dr. Oliver says is accurate, Trilostane is guaranteed to cause a problem with too many female hormones. And THAT is a condition that mimicks Cushings, according to him, so what am I doing? I was so afraid of Lysodren killing off his adrenal glands that I put him on Trilostane because it is called "safer with less side effects" - who wouldn't pick somethng talked about that way? Only people that do their homework, I guess, and see what is just advertising and what are facts.

I am learning that the fact is both drugs are not safe, both are not a good choice because there is no good choice right now. There probably never will be because in humans it is much easier to just remove the tumor than it is in dogs. I doubt there is much money out there for research on a disease that is usually mistaken for just the aging process in dogs, and where humans have an option for a complete cure. That sucks. :(

I wish I could tell every dog lover that if their dog gets old suddenly and fast - it is likely that there is a disease involved. I wish I would have known that over a year ago. I am very afraid from what Marianne said that Simon had this for two years at least, not one, but that as it slowly became more noticable that something was wrong I had a lot of vets resisting my realization that Simon did indeed have Cushings. Thank you for looking back through the numbers, Marianne (and I am sorry I spell your name wrong at least half the time - maybe I'd be better calling you lab-lab :o

Okay, so I would have to look how long Simon has been on Trilostane, but his dose went up, which someone told me could be "dangerous" and I know that - all of these drugs are dangerous - but I am VERY confused now about ONE thing. Who is right?

Is it actually as simple as "Trilostane is for dogs with ________ type of Cushings and Lysodren is for dogs with ________ Cushings?:confused::confused::confused:

Since I have heard this more than once now, with different things filling in the blank (or the same words, but different places.) Those things, or words, are "pituitary" and "adrenal". Who is right? Is anyone right or is that an opinion? Because it is a black and white answer, which I like, and I just need to know the right order of that sentence and if it is TRUE or if it is "opinion" and where it came from.

I am hearing stories of better and faster improvement from Lysodren lately. I am not seeing that much with Simon other than improvement in the cortisol number, symptomatically none of the great miracles of his pot belly going away, and stopping panting, and just feeling better - I'd say he feels a little better some days. Am I impatient? Should I see a change in a month or six weeks or maybe we aren't even that far into it - I would have to check. Thank you for all of the input. I know some of you are well informed and some of you are more strongly opiniated and some of you are both. Remember - I HATE the "Grey Zone" and I LOVE the black and white answers, but I need to know if it is in your well researched opinion and experience or if it is what your vets are telling you and/or what you believe is true, but cannot prove. If you can prove something is black and white about the difference and which medication is optimal for Simon, and I am maiking a terrible and possibly fatal error - I need to know. But please, give me something that SHOWS ME whjy you believe what you believe. Vets, in my experience do NOT know what many of you are saying are facts. So again I am left going :confused::confused::confused: and will ask a vet a question, who will tell me to trust them, not what I read on the Interenet - however if I can find supportive evidence, objective studies, I will believe, obviously what is on the Internet.

I find many people here tend to be subjective, (I am guilty of it myself) and yet I realize what works for my dog, may not work for yours even if they had the same tumor of the same size and in the same place. That's just life. I would like to read your subjective experience and opinions on YOUR thread, and to read well informed and researched answers when I ask a question. I enjoy reading the threads and experiences and still have a lot of catching up to do ... but unless you can really make this less of a "Grey Zone" for me and Simon, it really does not help us very much. It has made my scared, it has made me cry, it has made me panic. And I have talked to others that feel that way after they post something. I understand it will happen once in a while, I did it myself to Apollo's Mom when I was new. I had no idea what I was talking about, I was just parroting what I was told by a couple of vets (and I apologize for that). I am here looking for clarity - a way out of the fog and the grey, not anything that sinks me deeper in, and I think I speak for a lot of people in that.

So, maybe this is the longest post ever, but I really want to get to the bottom of what are opinions and guesses and what is truth and fact. Probably, (LOL) that was all I needed to say. Sorry I took so long to figure it out, I tend to "think outloud" ...

Love to everyone, and theiir Cush dogs,
From me and mine

PS. And I do know you are all just trying to help, and many of you have. I thank you for that.
I also apologize if any of this seems harsh, or severe, I am just frustrated and confused, and often leave here in tears of frustration and confusion and fear.

PPS. Terri, thank you, of course I don't mind, and to the person who gave me the link to the lignans, THANK YOU VERY MUCH! :):):)

I think this is a group of well intended people - good people - people who love their dogs through an awful disease like this are usually amazingly good people, I hope I am not coming across as attacking any of you in any way, I thank you for contributing - if you contribute to my clarity I thank you all the more, but at this point, well ....:confused::confused::confused: Is my boy on the wrong drug? He has a ;pituitary tumor, so he should be treated with ______________ is it really that easy? I hope so! (And doubt it at the same time, ;) but if you can SHOW ME! :)
Thank you!




For a long time I was under the impression that a pup could have both true and Atypical Cushing's. But at one time someone asked Dr.O about this and he said that if the cortisol is elevated that is considered true Cushing's even if some or all of the intermediates are elevated as well. The key is the cortisol. It sounds like your vets are unfamiliar with Atypical and are under the same impression I was. ;)

If the cortisol is normal but only some/all of the intermediates are elevated then you have an Atypical pup. If the cortisol is elevated, then you have a pup with true Cushing's...irregardless of the levels of the intermediates.

So if Simon's cortisol was elevated along with his intermediates, then he is a true cushinoid pup, not Atypcial.

Since his intermediates were also elevated, then Trilo is not an option. Since Lyso will address all of the hormones, this is the drug of choice for him. He will be monitored via the ACTH just as always with the Lyso. After a month or so on the Lyso, I would have the UTK panel run again to see if the Lyso has brought down the intermediates, especially the estradiol. Estradiol is the only hormone that Lyso may not be able to treat because this hormone can be produced outside the adrenal glands and Lyso works only on the adrenals. This is when the lignans and melatonin are useful - to treat estradiol produced outside the adrenals.

Over the coming years, I think we will see some developments in Cushing's concerning the intermediate hormones and their effects on our babies. More and more vets are becoming aware of the possibility that these hormones can cause damages as well. I still come back to Fibromyalgia as a comparison....after many years of the medical community phoo-phooing the condition and their patients who suffered with it, it is now an accepted and treatable condition. ;)

Hang in there! You're doing a fine job, mom!

Hugs,
Leslie and the girls - always

[BestBuddy]

I can see you are really struggling with this and I can't say anything to make you feel better, sorry.

Grey is something we have to deal with because diseases of any kind are just not black or white. Both Lysodren and Trilostane are dangerous if used incorrectly and there are many good and bad stories about both. The best we can hope for is a knowledgeable vet to guide us in the right direction.

In my Buddy's case we were advised by the specialist that Trilostane would be better for Buddy because as he was diabetic it would be a disaster if he was overdosed on Lysodren because he would not have survived addisons and diabetes. Trilostane blocks the cortisol so it isn't produced and recovery is much quicker if it is lowered too much.

The only way to be sure you are using the right drug is to watch for symptoms and do all the required testing to make sure you are getting the results you need.

Jenny

[SavingSimon]

I can see you are really struggling with this and I can't say anything to make you feel better, sorry.

Grey is something we have to deal with because diseases of any kind are just not black or white. Both Lysodren and Trilostane are dangerous if used incorrectly and there are many good and bad stories about both. The best we can hope for is a knowledgeable vet to guide us in the right direction.

In my Buddy's case we were advised by the specialist that Trilostane would be better for Buddy because as he was diabetic it would be a disaster if he was overdosed on Lysodren because he would not have survived addisons and diabetes. Trilostane blocks the cortisol so it isn't produced and recovery is much quicker if it is lowered too much.

The only way to be sure you are using the right drug is to watch for symptoms and do all the required testing to make sure you are getting the results you need.

Jenny

Thanks Jenny,
I appreciate your honesty. And your assessment of my really struggling with this is right on.. I agree with you about how to be sure, but there are a lot of people that seem to use their experience as the "Correct protocol for treatment of Cushings Disease" and their are a lot of people who understand that it IS a "grey zone" I guess I look for the understanding from those with experience, and for advice, and guidance from those who are more studied in the disease and sometimes it is hard to know who is who, as you can see from my former post.

[Harley PoMMom]

Hi Dena,

I believe every pup has to looked at individually and assessed. With Harley the Lysodren was tried but he could not tolerate it so he did start the Vetoryl. For me this decision to start Harley on the Vetoryl was pretty black and white...I know the excessive cortisol running through his body WILL eventually kill him. Harley does has elevations in his intermediates especially his estradiol but knowing without a doubt that elevated cortisol is very lethal to a pup and not knowing for absolutely sure whether the elevations in his intermediates will harm him I have started him on Vetoryl to get his cortisol under control.

I believe I was forced to look at two evils, elevated cortisol and elevations in his intermediates and I had to make a chioce as to which one to fight so my treatment plan for Harley was to fight the one that I knew could do him the most harm. I chose to fight the cortisol with Vetoryl.

Hope this helps.

Love and hugs,
Lori

[Squirt's Mom]

Hello Dena,

When Squirt was first diagnosed (nearly 3 yrs ago), the most important things I heard were 1) this is a slowly progressing condition so don't rush, and 2) educate yourself. So, I took my time and made sure she was thoroughly tested before any real consideration of putting her on Lyso or Trilo. I talked with many other vets, including Dr O, listened here, read all I could find and asked many, many questions. My approach was not only right for her, it saved her life.

When she was diagnosed as Atypical, Dr O told me that as such, "Trilostane is not an option" and that is what I have stuck to. He has since said that Trilo can be used in these pups but he also still holds to the effect it will have on the intermediates. Yet, we have had Atypical pups do fine on Trilo whether that was a choice out of fear of Lyso or out of necessity like Harley.

In looking at the big picture, there really is no "black and white" in the medical field...whether human or animal. We are continuously learning, and that learning changes how we look at things, how we treat things. Studies and research are constantly ongoing....making what was once "black", "white". Then you add the fact that each body is unique, unlike any other, and you have a "grey zone" in which that individual may not follow the expected route. In the years to come, we may see an altogether different approach to treating Cushing's in our babies making everything we know now "wrong". For today, tho, all we can do is what is best for our own babies based on current study, research, and experience...for each of our babies on their own, not what some other pup has done or what some study has said, but what works for our baby.

Hugs,
Leslie and the girls :D - always

[littleone1]

Hi Dena,

I know this can be very confusing and upsetting.

I know that even with Corky having an adrenal tumor, Lyso would be the best option, but it's not the best one for Corky. Even though Trilo isn't safer than Lyso, it is a better option for Corky because it is easier on him with all of his medical issues. The best option would be the surgery, but he's not a good candidate for it.

Whether the treatment is Lyso or Trilo, it helps reduce the cortisol level, which definitely improves the quality of life. I know that without the Trilo, Corky wouldn't have any kind of life. When my friends see him now, compared to the way he was last year, they can't believe the difference.

Talk to you soon. Give Simon a hug from me.

[StarDeb55]

Dena, if you will read the article that is posted on this link from the important information section of the forum, I think it will go a long way to answering some of your questions. Dr. Feldman is probably one of the foremost experts on canine Cushing's disease in the world. He has written the book on Cushing's & other endocrine disorders for vets.

http://www.k9cushings.com/forum/showthread.php?t=2231

The other thing you have to consider is each vet, whether they are an IMS or GP, have personal preferences for which drug they use to treat. Dr. David Bruyette, who is another leading IMS, by far & away uses trilostane, no matter whether it's ADH or PDH. I had a rather long discussion with my derm vet about using trilostane to treat Cushing's earlier in the year. He is extremely knowledgable about Cushing's as his practice will see undiagnosed pups because of skin/coat issues. During the discussion, I mentioned that everything that I have read seems to indicate that a lot of vets are finding out that trilostane is not the "magic bullet", safer drug that it has been advertised to be, & they seem to be backing off from a wholesale endorsement. He was in total agreement with what I said, but both of us agreed that both drugs have to be used, following suggested protocols for dosage & monitoring. The derm vet emphasized that if protocol is not done, both drugs are dangerous, but he reminded me that any medication when used randomly without following instructions can be unsafe.

Debbie

[labblab]

I am learning that the fact is both drugs are not safe, both are not a good choice because there is no good choice right now. There probably never will be because in humans it is much easier to just remove the tumor than it is in dogs. I doubt there is much money out there for research on a disease that is usually mistaken for just the aging process in dogs, and where humans have an option for a complete cure. That sucks. :(

Hi again, Dena.

Since my husband has suffered for years from limited treatment options for a rare inherited skin condition, I "hear" what you are saying about the lack of research funding/concern about conditions that are not common (nor carry the same ramifications for humans that they do for animals). It is frustrating to the max, no doubt about it!!! But if I were to have the liberty to alter the first part of your quote, this is the change that I would make: "Both drugs carry risks, and neither drug offers a perfect solution. But when used with proper vigilance and supervision, some risks can be minimized and both drugs can offer an improved quality of life for Cushpups." That is why, as a group, we have been so fortunate to witness so many success stories here. That in no way changes our sadness when some pups end up traveling a very rocky road. But if improvement was not possible, I don't think many of us could bear to remain here, day in and day out, to offer support and encouragement.

I, too, am a person who prefers black-and-white answers. But as others have already said so well, Cushing's is not an illness that tends to be black-and white. The medication choices are not perfect, and you can definitely make yourself crazy with second-guessing. But once a treatment decision has been made in consultation with your vet, there are some specifics that are common to both medications that do seem more clearcut to me: the need to monitor symptom resolution, and to conduct regular ACTH stim tests to see whether or not cortisol levels fall within the recommended therapeutic ranges. If either medication is not producing the desired results, then changes can and should be made (including the possibility of switching medications altogether). And there are specific treatment recommendations to help guide those decisions.

Having said that, though, unless somebody here identifies themselves as being a vet, I think you have to assume that all of the personal suggestions that we make here come in the form of a layperson's opinion. We can offer our own experiences and point you to research summaries and resource info that are generated by experts. But you should never assume that any of US are experts. We can raise questions for you to consider and discuss with your vet, and we can point you in the direction of published information to educate your discussion. But none of us are qualified to tell you what to do, and I'm afraid that nothing that we write can relieve you from the burden of sifting through the info personally and discussing your own dog's individual needs with your vet. I know that can feel really overwhelming at times, but I don't think there is any better or safer alternative. :o

Marianne

[labblab]

Hi Dena...me, again!

I've just seen from a reply you posted elsewhere that you don't feel as though Simon is improving as much as you had hoped on the trilostane. Would you want to update us regarding his dosing history and also his monitoring ACTH results? Cuz this is an example of what I was trying to say above... We're not qualified to tell you to make dosing changes without consulting your vet. But we might be able to make suggestions or refer you to published treatment guidelines that you may wish to discuss with your vet. And that could result in a dosing readjustment that may be helpful to Simon.

Marianne

[SavingSimon]

Dear Marianne,
Thank you for both of the recent posts. I really got the understanding that I need out of them. I hate this disease. I worry that while every vet in town was scaring me out of medicating Simon at all until he got "worse" - and you brought up a really good point earlier than that his numbers were too high -- I am wondering when but I have so much to do, I haven't had a chance to read even my own thread! I do get sidetracked on some issues on other threads on occasion. I need to stay focused.

To answer your questions, Simon has been on Trilostane since he switched from Ketoconozale, (that was in July, when my sister had her surgery in the beginning) and his dose was raised maybe a month ago by five mg I think. It is hard for me to tell now because of the way my Vet has me dosing him - he is on a split dose of a liquid, that instead of me actually having to give Simon more of it, the Vet made it more concentrated.

I am not seeing a lot of change.

His legs seem the same or weaker, and his pot belly the same or worse. Those are Simon's two main obvious symptoms. The panting is less, I think but it wasn't often to begin with, and the licking furninture until it was soaking wet has stopped. The two symptoms I am least concerned about are the two that seem to be resolving, meanwhile, he looks like a miniature cow with one udder from behind, and he is still eating too much and I am afraid he is getting weaker and has more atrophy of his muscles and that is the main symptom - the number ONE symptom I want gone. Does anyone know which drug wouldl address that issue better? If his back legs get much weaker he isn't going to be able to walk and it is going to be hopeless.

I am scared.

I will have another test done next week and see what the numbers are to give you something more concrete.

And yeah, I have been trying glutamine-L or something like that someone recommended for muscles and it doesn't seem to be helping, and my Vet would rather I didn't add it in the mix, so I stopped that. I just want to see him get better so bad that I am ready to try and switch to Lysodren - maybe the test numbers will help me and my Vet know what to do, but I am afraid if he is happy with the numbers that maybe critical symptoms won't be addressed. Also, it has been too hot here for him to get much exercise, so I really look forward to October, although it will also mean more time has gone by - it will mean he can exercise without overheating.

I can't thank you enough for your support and understanding. I am so sorry about your frustrations, Marianne.

Thank you for your support and help - and to everyone that is so supportive here, thank you.

Love and hugs to you and your loved ones,
Dena and pack

Thanks for listening. Thank
Hi Dena...me, again!

I've just seen from a reply you posted elsewhere that you don't feel as though Simon is improving as much as you had hoped on the trilostane. Would you want to update us regarding his dosing history and also his monitoring ACTH results? Cuz this is an example of what I was trying to say above... We're not qualified to tell you to make dosing changes without consulting your vet. But we might be able to make suggestions or refer you to published treatment guidelines that you may wish to discuss with your vet. And that could result in a dosing readjustment that may be helpful to Simon.

Marianne

[addy]

Hi Dena,

From what I have read, the weakness in the back legs takes awhile to improve on either drug. I remember Marie's Maddy is on Lysodren and it was some months before she saw improvement. It is that age old question, is it the drug side effect causing the weakness or the pup's drop in cortisol unmasking arthritis or is the dose wrong? Hard to know sometimes. I just reread about Trilostane and it said if pups symptoms are not controlled but ACTH test is good then switching to twice a day dosing may help.

The pot belly can be caused by shifting muscle mass. Again, that is not a symptom that resolves right away from what I read, but not sure why it would get worse. Hair, coat issues last to resolve and on Trilostane can get worse before better.

Could also be if Simon has high estradiol that is not controlled by Trilostane ,----- the unknown and questions go on and on so I know why you are scared and frustrated. From what I read Trilostane may need more dose tweeking than Lysodren.

Cushings is sooo hard and I am afraid it will always be gray. We can only try our best to help our pups and hope we make the right choices.

Thinking of you and hoping it gets easier.

Hugs,
Addy

[apollo6]

Dear Dena,
Hi
I am going through the same with Apollo, his hind legs starting getting weaker in June. The vet has told me to up him from 10mg, to a compounded liquid form 12.5mg/1.25ml. I haven't started yet.
I am just a worried about Apollo's weakness in his hind legs, his gait is very stiff back there and he falls sometimes. I just start crying .:(
I bought a red carriage so he can enjoy the outdoors when he gets tired. I am praying for you and Simon. I hate Cushing.:mad::mad:

[labblab]

Dear Dena,

Thanks so much for this additional info. But I am so sorry to hear that you're not seeing much improvement yet. That has to be so upsetting and frustrating for you!!!

At this point, I think the best thing we can do is wait to see how the ACTH test results turn out next week. Because as Addy says, there are different dosing options available depending upon the test results (in combination with Simon's symptoms, of course). After the test has been run next week, please do try to get the specific numbers so that you can post them for us here. And then we'll put all of our collective brains together to work out some suggestions for you.

I know it must feel so hard to be patient in the meantime. I'll never, ever forget all those sleepless nights over my own Cushpup. He was doing so poorly at the time he was diagnosed, I wasn't sure if he was even going to wake up each morning. We had to order our trilostane from England at that time, and I watched for our postman to arrive every day for a week -- and then practically broke down the frontdoor and the mailbox to see whether it had been delivered yet. And the day it first came, I cried from relief, thinking FINALLY here is something that I can give him that might help. We were very lucky, because within just a few days we did see definite improvement. For that I will be eternally grateful. But we also ended up needing to make dosing adjustments down the road. Throughout the whole process, I tried to learn the virtues of patience -- but it is very, very hard when, really, all you are asking for is that your sweet innocent baby be allowed to feel happy and NORMAL once again...:o

Hang in there, kiddo!
Marianne

[mypuppy]

dearest Marianne,
Wow! Your shared experiences always fascinate and you always seem to put matters in perspective for us time and again. I think we can all relate in wanting nothing more than to just make things "normal" for our babies again.
Dena, take heart, and know we are all here to take this long journey with you--I have no doubt you and Simon will get to a better place. luv you bunches. Xo Jeanette and Princess

[SavingSimon]

Thank you all for being so supportive and kind. I find it encouraging that Apollo's pot belly is going away or gone. I think that has to do with muscle which is my main question too ... I am also very worried about Simons weak and shaky legs, and hoping someone knows if Trilostane helps or hurts muscle mass - it maybe takes a while and helps? Or maybe it depends on those crazy making other hormone levels? Does anyone know anything that would HELP his muscles? Thank you all.
Love,
Dena and dogs

[frijole]

I did't use trilo so am perhaps not the best to respond but my understanding with lysodren is that it is the fact that lysodren reduces cortisol that results OVER time in muscle mass returning to normal or near normal. My Haley had shakey hind legs and couldn't jump on sofa when first diagnosed. It was a month or two after loading that I noticed the hind leg shakes were gone. She might have jumped on the sofa again... I can't remember. But she didn't have problems with steps etc until her eye sight was going.

So in short - I think it is the fact that cortisol is controlled, not the drug itself, that gives you the relief you are seeking.

At the same time, as you know when cortisol is reduced we often see arthritis issues show up.

How bad are the hind legs? Hope this helped. Kim

[apollo6]

Just a quick Hi.
We are both going through the same with the hind legs. Told may take time to correct with the medication or could be arthritis or degenerate joint disease. Never ends.:(
Prayers to you and Simon.

[SavingSimon]

Hi Kim,

Well found out how bad the hind legs are today, Simon's third test on trilostane was today, and is also being sent to Dr. Oliver again. His hind legs are so bad that T.K. told me he "does not have hamstrings" and though he said it was observant of me, because I pointed it out, having that confirmed was so shocking that I can't remember the other muscles he mentioned have atrophied, but I believe they are in his front legs. He also told me Simon has gained a pound, which is very bad, and that he was "more rockin' and shaking on the table" than ever before, but otherwise he is just fine, the same old Simon, went through an obstacle course the vet set up for him several times just fine. (I know he can walk, but that is about it - if he gets worse it is going to be incredibly frightening.) T.K. said he doesn't know if the muscle atrophy is due to the Cushings, or to something neurological. My mom said she has nerves in her leg that have died that led to muscle atrophy and the doctor said that muscle will never come back. I hope and pray that is NOT the case with Simon, and his Vet didn't even mention the possiblity of it being trilostane and high estradiol causing this (which is what I wonder and hope Dr. Oliver will let him know). If it is Trilostane I am angry that we went on it, listening to the IMS who recommended Dr. Oliver totally disregard his conclusion that trilostane was NOT the best choice for Simon because of his high estradiol.

I know my vet well, and he won't say much more until he has numbers facts and figures to look at. For some reason he is looking forward to results on Simon's bile acids in his bloodwork - which I am sure doesn't have a thing to do with the muscle wasting which is scaring me to death, and can only possibly introduce a new problem. Or hopefully not.

As I have mentioned, Simon has had "tremors" and shaky legs since he was a puppy - and yet still he was a dog that loved winning ribbons in confirmation, showing off his good looks, and with the judges I showed him in front of he would never have got first place with a physical flaw. So he used to have hamstrings - in fact I THINK (but am not sure) he had them until the Trilostane. I wish I knew for sure. Maybe I need to read my own thread and see if I was complaining of muscle weakness earlier than the Trilostane - um I think I was, but then he also had high estradiol on the test before trilostane - can estradiol do this?

I'm freaking out bad, right with poor Apollo's Mom - I feel your pain literally - I am close to having to change the name of my thread to "losing Simon" - we are teetering on the edge of a precipice that absolutely terrifies me! I am afraid we are about to fall off, test results or not. Yes, I will post results and comments from the vets as I get them. I am wondering so much if Trilostane was the wrong choice and if it was if there is time to fix it, with the month he would have to be on nothing scaring me as much as the lysodren loading scares me, and I just hate thinking I might be doing the wrong thing - that according to Dr. Oliver I am doing the wrong thing, and I don't understand why Dr. Matz, the same vet that wanted Dr. Oliver's test results was so quick to disregard them as "insignificant" - as did the guy who taught him in Vet school, and my Vet (I think my Vet finally submitted to "peer pressure" and just wanted to be doing SOMETHING instead of constantly debating pros and cons) so though this is definitely working on Simon's cortisol levels - I have no doubt about that - it is also, according to Dr. Olver, raising his already high estradiol levels to what I am afraid is unsustainable and I certainly hope Doctor Oliver can be convincing about that if that is the problem - because this sucks- and if that is not the problem, and there just isn't a solution, well, I know I am not going to have my boy much longer and I can't even wrap my head around that thought. I really can't. Every day I just hug him and thank God for another day with him, and dread going to get his medicine because I wonder if I am killing him.

That's just the way it is right now. I honestly can barely function, concentrate, or get anything done other than worry, which gets me no where because there aren't answers. And by now everyone knows how much I hate that - "simple minded" of me as it may be. (Dr. Matz said that it was). I can't stand the egos of some of these Vets!!!

The day started out with T.K. kind of in a bad mood, before he even saw Simon - and then he was in a better mood when he told me the bad news - except he did say "I see Simon is still Simon, so that's good, it isn't like he is lethargic, or changing in who he is" which I think I agree to a point - he does seem a little more grouchy lately, but he wouldn't be that way with T.K..

I'm scared. We are losing the fight, I am just not sure why, and neither is my Vet. Maybe tests will show something. With my luck something I can't fix or that only has bad options ... anyway ... that's where we are. Thanks for posting your thoughts on this.


So in short - I think it is the fact that cortisol is controlled, not the drug itself, that gives you the relief you are seeking.

At the same time, as you know when cortisol is reduced we often see arthritis issues show up.

How bad are the hind legs? Hope this helped. Kim

[SavingSimon]

Just a quick Hi.
We are both going through the same with the hind legs. Told may take time to correct with the medication or could be arthritis or degenerate joint disease. Never ends.:(
Prayers to you and Simon.

Praying for you and Apollo too. I think I wish it was joints, I think that would be easier to deal with than entire muscle mass missing. The only way I noticed was that I have another Jack Russell the same age, and a few others to compare Simon's legs to. Where they have a bulge in their legs, he has an indentation. That, and of course, he can't jump and hesitates to even go up stairs. This is all so overwhelming sometimes, I pray God helps us all, and our beloved dogs - and helps us and our Vets to help them.
Thanks for the support and prayers from you and Apollo.
Love,
Dena and dogs

[frijole]

Dena, Forgive me because with everything I got going on and my age related 'memory issues'... when you have time and are up to it could you pls refresh my memory on the Dr Oliver issue?

You had tests done by UTK and Dr Oliver is saying the estradiol is raised? No rush - when you are up to it I am curious because if your vets asked for the tests to be done and Dr O is saying you should be off of trilo then your vets should be having a discussion on your behalf with Dr O

Believe me I understand that this is not an exact science and that is can totally drain us. It is hard to be strong all of the time - so vent away - and then come back strong to continue saving dear Simon.

If the trilo has elevated the sex hormones then you might have to make the switch. You know we will be there for you should you need to use lysodren. If I can do it - you can too. ;)

As I often say to myself... deep breaths. Hang in there. You are not alone. Hug Simon for me, Kim

[SavingSimon]

Dear Kim,

There is nothing to forgive of course, my memory has never been good - even in High School when we had to memorize things, I never could quite make the mark, and age and stress certainly don't help, so no problem. If you can see the numbers of my posts here, post #117 explains the situation with Dr. Oliver and what he had to say to me a while ago. On my computer it is the last thing on this page, though this may bump it to another one. If you still can't find it, let me know, and I think I can quote myself, but it is kind of long.

(Conciseness isn't exactly my strong point either).

Before Simon was being treated with anything, during the period I was still trying to get someone to believe me that he really had Cushing's because he didn't have the "water consumption and urination problems" which according to the 16 or more vets I went to was a necessary symptom before they would consider treatment (by the way, he still doesn't drink or pee too much, but he has Cushings disease without a doubt, like I was trying to tell them - I KNOW my dog!) anyway, before treatment, Dr. Matz, his IMS recommended the UTK panel if I was "really worried" as an option. So I had it done, and as you can see on that post,or around it, Simon's female hormones are all extremely elevated and Dr. Oliver was concerned that raising those hormones, as he "guaranteed" trilostane would do without a doubt, could cause "Cushing's like symptoms" - thus telling me we would be winning the battle but losing the war. I told the treating vets what he said, they even consulted the vets that taught them, and decided that basically "Dr. Oliver is a guy in a lab that works with numbers not dogs, and we know trilostane is 'safer' and better for Simon, and no one really knows what those hormones Dr. Oliver tests mean anyway so trilostane is the drug of choice, absolutely without a doubt" - and these three guys are patting themselves on the back for getting his cortisol down, while hesitating to check his other hormones, but I had them tested today anyway, because if Dr. Oliver is a little more on target than they give him credit for - yes, I am now going to have to fight them all to get Simon on Lyso, after a month of waiting, and I am just ANGRY that I sat around waiting for him to get the one symptom I am sure he will never have. Time has wasted. So has muscle. Things I can't get back for my dog - all because "nothing is black and white" but for crying out loud - it should be black and white whether the "experts" are respected or not - why did I bother with an expensive test that now all these Vets decide to trash because it didn't tell them what they wanted to hear?
This is my boy's LIFE they are playing with. My time with him - his quality of life - he means the world to me and I could just scream! At least sixteen Vets say "Trilostane is safer" - and I swear I want to force every one of them to do their homework before they act like they know all the answers they should. I have more respect for the vet who told me she hasn't treated Cushing's enough and would rather have Simon treated by someone more familiar with it than I do ANY of the Vets who have treated him (with the exception of T.K. who is trying his best and as frustrated as I am) than all of the Vets that put on a "show" of "knowing" what is best.

I know I must sound like a basket- case maniac, and I'm sorry for that but the Vets here - the contradictory information - the always second guessing myself, and watching my dog get symptomatically worse and numerically better is just incredibly aggravating.

I'm thankful for a place to vent,and for friends with encourgagement that I have found here. I really feel sorry for you all because this is a thing I wouldn't wish on my worst enemy. It is CRAZY making!

Anyway, let me know if you can't find post #117, Kim and I will try and quote it.

Hugs to you and yours.

Love,
Dena & dogs


Dena, Forgive me because with everything I got going on and my age related 'memory issues'... when you have time and are up to it could you pls refresh my memory on the Dr Oliver issue?

You had tests done by UTK and Dr Oliver is saying the estradiol is raised? No rush - when you are up to it I am curious because if your vets asked for the tests to be done and Dr O is saying you should be off of trilo then your vets should be having a discussion on your behalf with Dr O

Believe me I understand that this is not an exact science and that is can totally drain us. It is hard to be strong all of the time - so vent away - and then come back strong to continue saving dear Simon.

If the trilo has elevated the sex hormones then you might have to make the switch. You know we will be there for you should you need to use lysodren. If I can do it - you can too. ;)

As I often say to myself... deep breaths. Hang in there. You are not alone. Hug Simon for me, Kim

[addy]

Hi Dena,

I can hear your terrible pain in your writing and I am so sorry you are in such a hard place. I think my Zoe probably has similar numbers as as Simon and my IMS said not to do trilo unless I was ok with the estradiol getting even higher, Zoe's is high pre stim and then went down a tad post stim and all other intermediates are high. I don't think she can tolerate lysodren, she gets sick from her heartworm medicine, she had a bad reaction to rimadyl, but I am afraid what the trilo will do to her other hormones.

I can't offer any advice but I guess at some point you may have to say 4-6 weeks wash out and try lysodren.

I wish there was something I could say to help ------

I'll be saying prayers for you and Simon to find an answer, dear friend.

Love,
Addy

[labblab]

Dena, for what it is worth, Dr. Oliver does NOT list muscle wasting as a symptom of elevated levels of estradiol in his article, "Steroid Profiles In The Diagnosis Of Canine Adrenal Disorders." (http://www.vet.utk.edu/diagnostic/endocrinology/pdf/Steroids%20Profiles%20in%20the%20Diagnosis%20of%20 .doc) Here are the symptoms that he does list:


...liver problems are frequent and typical (very elevated alkaline phosphatase, hepatomegaly, steroid hepatopathy, hyperechoic liver by ultrasound), PU/PD is frequent, panting may be present, haircoat problems often are present, skin biopsy results suggest an endocrinopathy...

However, perhaps Dr. Oliver will have more (or something different) to say about this when he responds to these most recent test results of Simon's.

In the meantime, can you PLEASE post the actual numbers for Simon's ACTH testing since he started on trilostane? It is really not possible for us to give any meaningful feedback about the trilostane's effect on Simon's cortisol level without knowing what the test results are :o. Ongong muscle wasting is definitely a symptom of too-high cortisol, so perhaps Simon's trilostane dose is still not at a therapeutic level yet...

Marianne

[Franklin'sMum]

Dena,

Just want you to know that we're thinking of you and Simon, and praying for you both.

(((HUGS)))
Jane, Franklin and Bailey xxx

[labblab]

OK, I'm back from walking the girls, and I kept thinking about you and Simon the whole time. So here's just a couple more thoughts to hopefully clarify what I wrote earlier. First and foremost, if it turns out the Lysodren is the the better choice for Simon, then I will totally support you in making the change. I don't want you to ever think that I have any issues about treating a Cushpup with Lysodren, because I do not. But until we find out exactly what Simon's trilostane dosing history and monitoring ACTH results have been, then we have no way of judging whether or not the trilostane is truly failing him.

I know you said earlier that you are giving Simon his trilostane in a liquid form, and that your vet has "added" to it in order to increase the dose. Administering trilostane in liquid form is far less common than giving pills or capsules, so perhaps the medication is just not remaining as stable or effective in the liquid? Or maybe that is not any issue at all, but the dose has not yet been increased high enough to bring Simon's cortisol down to the desired treatment range. Your vet would not be the first one that we have come across who didn't realize at first that Cushpups in treatment need to have their cortisol levels maintained within a range that is lower than the "norms" generally printed on laboratory summaries. This is not uncommon if vets have not had a lot of previous experience with trilostane.

If it turns out that Simon's cortiol HAS been lowered to the proper level by the trilostane but his symptoms are still worsening -- then you definitely have reason to consider switching to Lysodren. But without the test results to look at, we cannot know whether or not that is the case. So I do believe that one of the most helpful things you can do for Simon right now is to gather that information together and post it for us: his specific trilostane dosing history, and his previous two monitoring ACTH results. And then as soon as the results from yesterday's test are available, let us know those as well. ;)

Marianne

[Squirt's Mom]

Hi Dena,

Bless your heart! This can really get to us, huh? But hang in there...you and Simon have many folks pulling for you and working on your behalf.

I was trying to see if muscle wasting is connected with hyperestrinism (elevated estradiol) and haven't seen anything directly related. So, I got to thinking...dangerous, I know. ;) You say Simon has had shaky legs since a pup so I went looking for health issues common in JRTs that might give some insight. I found that JRTs as well as other small dogs are prone to a condition called Legg-Calve-Perthes disease which is a disease of the hip joint that can result in atrophy of the muscles. It can be hereditary and can be caused by "Abnormal sex hormone activity - preconcious".

I also found a statement by Dr. Oliver about treatments for Cushing's I thought I would share so we all can be reminded of what we are dealing with:

"It is unlikely that there is such a thing as the perfect treatment for hyperadrenocorticism as the disease has a wide spectrum of severity and underlying causes."

So this is the demon we dance with and we dance with all our souls for our babies. It is a dance of learning, of loving, and it can make us dizzy at times but we don't dance alone...we dance together. ;)

Keep your chin up!
Hugs,
Leslie and the girls :D - always

[loshie]

Hi Dena,

Sending big hugs and praying for you and Simon.

Luv,
Melanie & Mila

[mypuppy]

Dena,
Take heart and stay strong on your great faith, and he will see you and precious Simon through this. Thinking of both of you today and always. God loves you, and so do I. Tigh hugs. Xo Jeanette and my puppy Princess

[apollo6]

Dear Dena
I am praying for you and Simon. We have to have faith that God is on our side. God didn't get us this far to let us down.
I am going through the same issue with Apollo. His hind legs are very weak, but he still has fight in him to try and get up the steps. He falls easily now. Our walks are very short . I force him to walk a little each day. His bones stick out behind his anus. Before he had a muscular hind legs. It is like part of the muscles aren't there. I hope for both of us our fur balls will get better. When Apollo walks he has a stiff gait. Has a hard time even trying to left his leg to urinate. He seems to drag his legs. Look at Simon's hind nails and see if the middle ones are worn out more, sideways . That is what Apollo's hind paws look like. But he still is alert, wags his tail, runs to me when I have a treat, puts his head on my leg when lying down. No they will never be the same, but maybe we can look into their soulful eyes and see the beauty inside and out and realize just for today they are with us.
Maybe we can look at the positive changes. Yes like you I am worried about the hind legs. It could be arthritis . Is it the Trilostane ? I don't know will ask my IMS. The Corkster is on Trilostane and said the Trilostane did not cause more muscle weakness. But other's have tried Trilostane and have been successful.
Apollo is on 12.5 mg/compounded liquid form, I get a STIM TEST tomorrow to see if the increase from 10mg to 12.5mg has helped. I have seen improvement in Apollo since June-pot belly gone, hair regrowth, skin liaisons have healed. Hope this helps.
Sending loving prayers and hugs Sonja and Apollo

[Casey's Mom]

Dena - big hugs and prayers for you and Simon.

We are here for you,

[addy]

Hi Dena,

I was just thinking, in Europe and the UK they only use Trilostane, so what happens to all those dogs with high intermediate hormones?

I mean all the vet papers I read from Europe say how successful Vetoryl has been for their Cush pups.

Why is it they don't address the problem with rising intermediate hormones?

Am I missing something? It was just a thought I had. I have been toying with treating Zoe with the Trilo but like Simon, her estradiol and other hormones are high so Dr. Oliver said it was not an option.


Hugs,
Addy
Maybe someone can tell us:)

[gpgscott]

I was just thinking, in Europe and the UK they only use Trilostane, so what happens to all those dogs with high intermediate hormones?

Maybe someone can tell us:)

I'll give you my take:)

Dr. Oliver @ UTK for some reason has focused on all of the adrenal hormones. From what I understand there is not another lab either in the US or elsewhere which does these assays. In Cushing's, cortisol is the usual culprit and the one which causes the most dramatic and volitile symptoms. And is it true that you cannot get Lysodren in Europe or the UK or is it an off label use that most vets do not get involved with?

I am sure others will have points to add.

Scott

[labblab]

Hi Dena,

I was just thinking, in Europe and the UK they only use Trilostane, so what happens to all those dogs with high intermediate hormones?

I mean all the vet papers I read from Europe say how successful Vetoryl has been for their Cush pups.

Why is it they don't address the problem with rising intermediate hormones?

Am I missing something? It was just a thought I had. I have been toying with treating Zoe with the Trilo but like Simon, her estradiol and other hormones are high so Dr. Oliver said it was not an option.

Hi Addy,

For a few thoughts of my own about your question, here's a link to a reply that I posted a while ago in Dena's thread. And do also check out the link that is posted within my reply, because it involves even broader discussion about this issue...

http://www.k9cushings.com/forum/showthread.php?p=38232

Just a bit more food for thought. ;)

Marianne

[addy]

Hi Dena,

Well, we got some good answers to my question for you. I was hoping it would make you feel better about your choice of using Trilostane.:)

Try to think positively and I am sure that is hard when you see little Simon having problems but hopefully, you will get to where you need to be with him.

We are all saying prayers for you both. Your choice may be the right choice and the dose is just not yet right:)

Love,
Addy

[SavingSimon]

I just wanted to let you all know that I truly appreciate your prayers, your concern, and support. It would be very hard to get through this without that, and I have an abundance of it here, for which I am very grateful.

Marianne, I really thought somewhere here I have posted all of Simon's numbers and results, but maybe I got lazy and stopped - I am not sure, however, I can tell you that his numbers on everything have been very consistent in improviing since he has been on trilostane - every number on every test with one exception and that would be the numbers Dr. Oliver looks at. I know that without knowing the results from that test yet. I am concerned about what Dr. Oliver said about "high estradiol and female hormone levels causing the SAME SYMPTOMS as Cushings disease" if you will look at the post made about my conversation with him., he said this a long time ago, and also said that he GUARANTEED that Trilostane would raise those hormone levels "that is one of the things Trilostane does -always, without exception on any dog". Okay, so I believe the guy that Trilostane is going to raise Simon's estradiol and possibly a few other hormone levels which is NOT good - especially if high estradiol mimicks Cushing's disease - I would be treating Simon with a paradox is the only way I can think to explain it - Trilostane would be drug "catch-22". I do not yet have results from Dr. Oliver. TK did call me a week ago from Friday, very pleased with the other numbers in Simon's bloodwork. I think that means his Alk Phos. number continues to drop, his liver values are good - in the normal range and everything in his bloodwork is just like a healthy dog. I suspect when I get the results of his stim test I will have the paradox that is driving me nuts - I will hear that his cortisol is going down and his estradiol is off the charts, because his symptoms are not improving (they aren't really getting worse either, but they are not getting better) - except maybe they are a little worse because he did gain a pound, and I think I have switched from the problem of high cortisol to the problems caused by extremely high female hormone levels. We will wait and see, but that is what I almost KNOW they are going to tell me. And that will be followed with the "we don't know why he has muscle atrophy" which I have already heard from T.K. anyway. If Dr. Oliver atributes it to the high female hormones, then I will have an answer. If not - it is another thing that is in the "grey" zone, and makes me wonder if I am treating him with the right drug. To those who wonder what the value of Dr. Oliver's testing is - that is the answer - it shows that trilostane raises female hormones, and according to Dr. Oliver tells you whether your dog is a better candidate for Trilostane or Lysodren because raising those hormones too high can maike your dog seem like they have Cushings even if they don't have it - so you can imagine what it does to them if they DO have it. That is his main point he is trying to get across to people, I believe. His tests also are diagnostic of the disease he named "atypical Cushings" which I personally believe is just what happens before the dog is making enough cortisol for any vet to be convinced that the dog has "full blown" Cushings. To me, in my experience, "Atypical Cushings" means Cushings is on the way, and most people who do a second test by that time have "full blown Cushings" and think they have a dog with Atypical AND Cushings - however Dr. Oliver who made up the name "Atypical Cushings" will tell you himself that a dog cannot have both - they either have Cushings or Atypical Cushings, not both. It is his phrase, so I think we should grant him permission to make the rules on what it is and what it isn't. If a dog has symptoms of Cushings, and their six hormone panel from Dr. Oliver is out of whack but their cortisol level is not in the "too high" zone YET (key word for me being "yet") then he diagnoses them "atypical" and most Vets start considering treatment at that point. So since the dogs start getting treated, some may never develop off the charts cortisol, but I believe left untreated, most with "Atypical" Cushings will progress to the "full blown" version of the disease. That is what happened with Simon, and I believe that is what happened with several dogs here.
Anyway, it really doesn't matter what I think about that with regards to Simon - it is just a note that I hope people will make their vets treat "Atypical" Cushings before they are dealing with "full blown" Cushings, because in Simon's case we waited, I believe too long to start treatment. Waiting for "worse syptoms" and waiting for "worse test numbers" ... and waiting was the dumbest thing I did - I knew he had Cushings, even though the vets wouldn't believe it until they finally saw Cortisol levels that were too high. I do not want that to happen to any other dog.
As for Simon, I am still greatly concerned about the muscle loss - worried that no one knows why it is happening or what to do about it. Worried that if he loses any more muscle in his back legs I am going to be facing a decision I am not ready to face. I hope that Dr. Oliver will have a very clear answer about whether or not this is a problem caused by the hormone levels and the Trilostane. But I suspect another case of "well it could be that, but it could be something else too" leaving me wondering what to do without any clear answers or guidance from the professionals who are supposed to help me know what to do about this.
Sorry for another frustrated post. You guys have been very good to me and my boy, I thank you so much for your prayers and support, please keep on praying, and I will post all of the numbers for the people who like those just as soon as I get them - but I do not have them yet. I only know T.K. is pleased with his regular bloodwork, and his numbers being in the normal range. I would be pleased too if my dog still had his hamstrings - but how in the world do you just lose a huge muscle like that? That is the muscle that gives Jack Russell Terriers their incredible "springs" in their legs. Simon used to leap into my arms. Now he can't even jump in the car and can barely get up the three stairs I had to make just for him to get into my bed. :( So that's what's up. Thank you all for your thoughts and comments as well, it means a lot that you are thinking about us, trying to help, and that we matter. God bless you all and your dogs, you matter to us too and are always in my prayers. May God help us all - people and dogs alike.
Love,
Dena and my pack.

[SavingSimon]

So, not long after I posted I got the phone call I was expecting from Simon's primary Vet, T.K., and he said all of Simon's numbers are getting better, except for the hormones, which are pretty off the chart. He read them to me, I don't have them in front of me, but I will get them and post them for the numbers people. I just heard him say something I have not heard him say since I have known him. This is one of the people I have more respect for than anyone I can think of, and a lot of the respect is because of miracles he has helped happen with my dogs, and rescue dogs, and other people's dogs, he truly is a beyond genius man, and probably one of the most brilliant people I will ever have the honor of knowing in my life. With that said, what he told me tonight was "Dena, I have really been thinking about this like 'if Simon were my dog, what would I do?' and I honestly cannot answer that question." He talked about a lot of ideas and a lot of options that would all lead to a lot more questions, so I am really confused and frustrated, and so is my Vet. Simon's biceps and hamstrings have atrophied. We do not know if it is the hormones, or the Cushings or the Trilostane, or some combination of all or some or none of that, and we do not know if it is something else, which we could test for until there are no tests left, all the while not necessarily ruling anything else in or out, and probably not finding a solution to the problem. He does not know if I need to be more patient with the Trilostane or pitch it and start Lysodren (although I think he is leaning that way, as am I - cause what else can we do?) ... He is treating about ten dogs with Trilostane right now, and probably more than that with lysodren, and none of the Trilostane dogs have the muscle problems Simon has but also none of them that he knows of have the hormonal issues that Simon had since before anyone was willing to call it much more than "atypical" Cushings. And so, he will talk to Dr. Oliver (but he knows what he thinks and so do I) and he will talk to Simon's arrogant IMS (I know he will say to stick with the trilostane without even looking at Simon) and I am thinking if there is any expert, any Vet, anyone in the world that my Vet should talk to about what is going on - some Cushing's guru - can someone PLEASE let me know who that is, and what their phone number is so that my Vet can talk to them, or I can take Simon to them, or so that we know what to do? You can send me a PM if you don't think it is a good idea to post their contact info - but I am in desperate need of the most brilliant Cushing's Vets in the country. T.K. will have no problem keeping up with them and asking them the right questions, but to hear that he is at a loss and know that I am at a loss when it comes to "what now?" and to know that he is going to get one answer from Dr. Oliver, and another from Simon's IMS has me ready to lose it - totally - if I haven't already crossed that line. :eek: I probably did a long time ago. I need top Vets I need brilliant innovative opinions - I need help. Most important, my Simon needs help. He is too young, (for a Jack Russell this is young) he is too full of spirit, and life, and he is my best friend and he just cannot afford to lose any more muscle. None. He needs to gain muscle if that is possible. I can't tomorrow, but I think on Tuesday I will take him to a "dog physical therapist" that I just saw a brochure for a few days ago. I have no idea if that will help or not, but I don't know what to do anymore. Everything would be just great if only he didn't need his muscles to walk.
Have I mentioned how much I hate this disease lately?!?:(

[apollo6]

Dear Dena
I am going through the same with Apollo's hind leg weakness, my holistic vet says he has never seen anything like it. I have been going to him for years about Apollo's back problem. He said even when Apollo's cushing was full blown he did not have hind leg weakness.
Did read:Still concern about hind legs, read Trilostane can cause hind limb paresis.
He said check with IMS about taking Apollo off Trilostane for 2-4 weeks and see if legs improve. Also Squirts Mom had similar problem with Bonnie and said within a few days off of Trilostane Bonnie was able to walk with no problem. was on my thread on 9-17-10.
I am in a pickle about what to do. But will take a break for a day before I start this.
Hugs and prayers from Sonja and Apollo.

[labblab]

Dear Dena,

I surely did not want to create extra work for you in the event that you had already posted any of Simon's recent test results. So I went back to re-read your thread once again, and unfortunately you have not posted any test results since Simon started taking the trilostane back during the summer. From what you wrote back in August (Reply #118), it sounds as though Simon had started out taking 10 mg. of trilostane twice daily, and after an initial ACTH test his dose was increased to 15 mg. twice daily back at that time. But I believe that is as much as we know about his dosing and his test results.

From what you have said, I think this most recent ACTH is the third since starting trilostane. In addition to posting the results from this most recent test, could you maybe ask T.K. for copies of all three of his tests since starting trilostane -- and then post the numbers? If you don't already have them, hard copies of all tests are a really good idea so that there can't be any confusion or mistakes over numbers relayed over the telephone.

I know I am sounding like a broken record as far as requesting the test results. But you had said in an earlier reply that you are really hoping to receive objective feedback here as opposed to just subjective speculation. And in the absence of actual test results, I'm afraid it is pretty much impossible for us to do anything OTHER than just speculate.

I'm very glad to know that T.K. is experienced with using both trilostane and Lysodren. And since you have so many doubts and worries about trilostane, it may very well be the case that you will prefer to go ahead and make the switch after a wash-out period. But we really cannot help with objective feedback about the effects of the trilostane without seeing those test results.

Marianne

[labblab]

I am going through the same with Apollo's hind leg weakness, my holistic vet says he has never seen anything like it. I have been going to him for years about Apollo's back problem. He said even when Apollo's cushing was full blown he did not have hind leg weakness.

Did read:Still concern about hind legs, read Trilostane can cause hind limb paresis.
He said check with IMS about taking Apollo off Trilostane for 2-4 weeks and see if legs improve. Also Squirts Mom had similar problem with Bonnie and said within a few days off of Trilostane Bonnie was able to walk with no problem. was on my thread on 9-17-10.

For both Sonja and Dena,

Two quick thoughts to share. First, as to Bonnie's situation -- I just wanted to point out that in her case, the trilostane was stopped because her cortisol had dropped too low during treatment (a "pre" value of .94 and a "post" value of 1.17). So the strong likelihood is that it was not the trilostane itself that was causing her mobility problems, but rather the fact that her cortisol level was being oversuppressed by a dose that had been too high. Her experience illustrates why it is so important for us to know what the actual test numbers are before trying to draw conclusions as to what is likely causing symptoms or problems. Here's Bonnie's entire thread (and Sonja, I think the conversation that you are referring to is actually there and not on your own thread):

http://www.k9cushings.com/forum/showthread.php?t=2469

Secondly, I had not previously noticed that hind limb paresis (partial paralysis) is listed as a possible adverse effect of trilostane. But when I looked at the U.S. Product Insert, sure enough -- it is listed as having been reported in association with "foreign market experience." So then I looked at the U.K. Datasheet and also saw it listed there. Neither information sheet elaborates in any way, however. Sonja, since you have already spoken with Dr. Allen at Dechra's U.S. office, maybe you or your vet would be interested in calling him again to see whether you can get additional info about this reported effect -- both the incidence and a better description of what was actually involved. I suspect this must be something that looks different from the typical rear-end muscle wasting that is so commonly associated with uncontrolled Cushing's. I'd really be interested to hear more about it!

Marianne

[lulusmom]

Hi Dena,

Marianne has already requested this but I'm going to echo her and say that it would be great if you would please post the results of all acth stimulation tests that were done since starting Trilostane treatment at the end of July or first part of August.

I have gone back through your thread and was unable to determine if Simon had any symptoms other than hind end weakness. If this has been his only symptom, I understand why your vet did not rush to treat Simon. According to what I see, Simon was never diagnosed as having atypical cushing's. An ldds and at least two UTK panels show elevated cortisol that is definitely consistent with typical cushing's. The elevation in the post cortisol numbers on both UTK panels are certainly not what I would call mild so I don't believe there is no grey as far as diagnosis. I think Simon has pituitary dependent cushing. Depending on whether Simon had any of the more common cushing's symptoms, when to treat could have been a real grey zone for your vet. Simon's case is a lot more black and white than a whole lot of cushdogs here.

Cortisol is a catabolic steroid that has the greatest impact on protein, fat and carbohydrate metabolism so it's a given that it is the steroid that is the culprit for muscle wasting. Cushdogs don't lose their muscle mass quickly nor do they rebuild it quickly and they won't even start to rebuild it until cortisol has been brought down to an acceptable level. My Jojo had horrible muscle wasting, tremored constantly and would fall over if he lifted his leg to pee. We didn't see any real improvement for several months. It looks like Simon has been on Trilostane for approximately 60 days, which I believe is too soon to expect a big change in muscle mass. Did your vet, T.K., mention this to you?

I look forward to your posting the results of all acth stim tests that have been done since starting Trilostane. I can add that to my recap of chrono of events I did so I could try to piece everything together. I am posting my recap for anyone else that might be interested.


3/21/07 Alk phos 102 (5 – 131)
10/2/08 Alk phos 499 (5 – 131)
8/27/09 Alk phos 956 (5 – 131) Still no symptoms but vet brings up subject of cushing’s.
9/17/09 Ultrasound done – Liver slightly enlarged and adrenals very slightly enlarged.
9/23/09 Second ultrasound done but no findings posted; however, the vet that did the ultrasound apparently didn’t see the same thing that showed up on the prior ultrasound as she felt Simon’s problems were all thyroid related.
9/23/09 LDDS test done Pre 10.6, 4 hr 1.4, 8 hr 3.6
3/26/10 UTK Panel done:

TEST/ RESULT/ Normal Range/ RESULT (post ACTH)/ Normal Range
Cortisol/21.9/2.0-56.5/ 320.8/70.6-151.2
Androstenedione ng/ml/ 0.20/0.05-0.36/1.50/0.24-2.90
Estradiol pg/ml/ 103.3/23.1-65.1/97.8/23.3-69.4
Progesterone ng/ml/ 0.21/0.03-0.17/2.70/0.22-1.45
17OH Progesterone ng/ml <0.08/ 0.08-0.22/0.73/0.25-2.63
Aldosterone pg/ml/116.2/11-139.9/506.2/72.9-398.5

06/?/10 Second UTK panel done:

TEST/ RESULT/ Normal Range/ RESULT (post ACTH)/ Normal Range
Cortisol/38.9/2.0-56.5/ 297.2/70.6-151.2
Androstenedione ng/ml/ 1.76/0.05-0.36/>10 .24-2.90
Estradiol pg/ml/ 80.3/23.1-65.1/86.2/23.3-69.4
Progesterone ng/ml/ 0.17/0.03-0.17/3.10/0.22-1.45
17OH Progesterone ng/ml <0.18/ 0.08-0.22/3.24/0.25-2.63
Aldosterone pg/ml/370/11-139.9/672.1/72.9-398.5

6/29/10 Started Ketoconazole for one month at low dose of 50mg BID (21 – 24 lbs). Note: A Dr. Matz suggested Trilostane be started and told Dena that the low dose of Keto will not help.

7/3/10 Appears that primary concern is with liver damage and muscle wasting. Note: No other symptoms have been mentioned

7/11/10 Simon has bloody diarrhea. Dena mentions that Simon has not been eating. Meds stopped and ¼ tagamet given.

8/?/10 Simon started 10mg BID liquid trilostane

8/?/10 T.K. increased dose to 15mg BID and Dena is reporting that Simon has more spring in his step, back legs are regaining strength, appetite is little more normal and pot belly is better.

9/16/10 Dena mentions main symptom is back leg weakness

9/29 Third acth stim done and vet told Dena Simon does not have hamstrings. :confused: Vet does not know if muscle atrophy is from cushing’s or neuro problem. Dena admits she and her vet (T.K.) are frustrated.

[mypuppy]

Oh Dena,
Each time I return to the forum after taking small breaks in between I find myself a bit upset with how some of our precious babies are doing, to include little Simon. God, I was hoping by now the little guy would have seen some improvement. I wish there was something more I can add to make your mind at ease, other than to NOT lose faith. I know how terribly frustrating this cushings is, but I also have no doubt in my mind that you will continue fighting strong for your little boy, which is all you have been doing for him from day one. He certainly is blessed to have someone who loves him so dearly and who is not giving up on him. Stay the path, be patient and stay strong. Remember time and again when all seems hopeless, God loves you, and SO DO I. Take care of you, and I will be watching for some hopeful good updates on Simon. Tight hugs to both of you. Xo Jeanette and Princess

[SavingSimon]

Warning: Please do not read this if you are overwhelmed with your own dog and your own problems, which I totally understand, can relate to, and think this might just depress you too - I use this as a journal, and in many ways it should probably be a private one, but maybe one day when it is finished it will help someone else. This is NOT one of those days, so don't read this if you are feeling hopeless or powerless, because I am very close to wit's end here.

Dear Jeanette and Princess, and other dear friends who I am sure have written kind and supportive things - I cannot bring myself to read anything on my thread right now but what you (Jeanette) wrote because today I found out that my sweet Willy, who has had a cough for the third day so I took him to Dr. Burrows who I can get into right away, has an enlarged heart, along with his heart murmur. His heart which should take the space of about two ribs is taking up a little more than four! His windpipe is being crushed by his heart, thus the cough. The X-ray is something like I have never seen before. Yes, she put him on the standard medication, (starts with an e) and he is having more bloodwork done, but I am simply overwhelmed, and while I am sure some of you have written very kind and supportive words, I am guessing there is also some pressure to post Simon's numbers, which I will do as soon as I can get out of "THE HOLE YOUR IN" (if any of you saw "Leaving Las Vegas" you will get the reference, and that is where I am. Sorry for more bad news, and I anticipate more, as one of my other dogs has a lump on his back by his spine, and another has a neck problem (it is crooked) both of which I will be getting checked on Thursday. T.K. has suggested I get the opinion of a neurologist for Simon - so that is what is next for him, but again I stress to the numbers folks that his numbers are just wonderful, and Trilostane is not causing the muscle problem I don't think since he was weakening before he ever took it. Whether or not Cushings or the tumor in his brain, or some other disease process is causing it I don't know. I do think I should have called myself "Simon's Mom" instead of "Saving Simon" as I came to this board so hopeful and am finding myself sinking into a great pit of depression as I find I am losing all my dogs at once. To be realistic, I knew this would happen one day, as they are all close in age - I just am not ready for it to be so soon. Sorry to be so negative, and I thank you all for your prayers, and kindness, that is the only thing that keeps me going. I know you all care, and I know God does too. I know He loves my dogs, and I know there is a reason for this all that I just don't understand right now. Someday I will, and when I get it, maybe I can help other people going through the same hell on earth. Right now, I have no idea how to help me, or my kids, and it just is a terrible helpless feeling. For my friends who pray, please pray I don't find out that my other two boys have anything serious going on, I really don't know how much more I can take - sometimes I feel like we should just all take the pink shot together and get it over with. I am not going to do that, because I can't take the pink shot, but I swear sometimes it seems like it would be the most humane option for us all, and this is just one of those times. Please keep us in your prayers, and my biggest request is for more answers and less problems that Vets have no answers or options for, and thank you all for the support, like I said, I will be back when I know more, and have the motivation and time to post the numbers and to try and make sense of it all with your help. Right now I need God's help, and thank you for your prayers for us.
Hug your precious dogs, they and you are in my prayers always.
Love,
Dena and pack.

Oh Dena,
Each time I return to the forum after taking small breaks in between I find myself a bit upset with how some of our precious babies are doing, to include little Simon. God, I was hoping by now the little guy would have seen some improvement. I wish there was something more I can add to make your mind at ease, other than to NOT lose faith. I know how terribly frustrating this cushings is, but I also have no doubt in my mind that you will continue fighting strong for your little boy, which is all you have been doing for him from day one. He certainly is blessed to have someone who loves him so dearly and who is not giving up on him. Stay the path, be patient and stay strong. Remember time and again when all seems hopeless, God loves you, and SO DO I. Take care of you, and I will be watching for some hopeful good updates on Simon. Tight hugs to both of you. Xo Jeanette and Princess

[littleone1]

Hi my friend,

Hang in there. I'm keeping all of you in my thoughts and prayers. Things do have a way of working out for the best. I'll give you a call after I get back from Corkster's walk.

(((HUGS)))

[mypuppy]

Dena,
I tried sending you a pm but your pm folder is full and you need to clear some space. Would you mind sending me a pm with your email address again please. Xo Jeanette

[apollo6]

Dear Dena
I am praying for you. I know all of this is really hard with not just one baby sick but more.
You are in my thoughts and prayers, sweet friend.
Hugs Sonja and Apollo

[lulusmom]

Hi Dena,

I am very sorry that you are experiencing the trauma of having three babies that are having problems. Dealing with one cushdog is tough enough so my heart goes out to you. My heart sank when I read that you are losing all of your babies. I can't even imagine what that must be like and I do hope this is just your nerves speaking and not true prognoses for your babies. I'm sure T.K. has explained that Cushing's is a very graded disease and it takes years to do any real damage, right? I don't know what is going on with Simon's muscle atrophy but if it is due to cushing's, this is not fatal so I hope that brings you some comfort.

[loshie]

lots and lots of hugs and prayers,
luv,
melanie & mila

[addy]

From the depth of your dispair you will once again rise to be the strong one for your pups. Dena, you have come too far to quit now and your dogs need you and we need you too.

Whatever God's plan is for you, he will not give you more than you can handle and you have to believe that now.

Zoe has elevated estradiol as as well as four other intermediate hormones. I was told the same thing, Dr. Oliver said "no trilo" as it will elevate those hormones. I thought my IMS was right on because she did the adrenal panel test and now it seems, very few people have it done. Not sure if that is good or bad, but it is what we have now.

Dena, John's Rozee uses her wheels and does not seem to mind or think she is handicapped in any way. Trinket is blind and she does not think or know she is handicapped. If Simon's hind legs weaken this does not mean you will lose your Simon.

Please, please come out of this dispair. I refuse to believe it is hopeless.

Love,
Addy

[apollo6]

Dear Dena
Please take care of your self. My husband said if Apollo gets to that point we will get him a wheel chair. Fire Engine red if need be.:p Like Addy says, these fur balls don't see their disabilities. Apollo still tries to climb stairs and doesn't give up. We need to be strong for them.
Hugs Sonja and Apollo.

[SavingSimon]

Thank you all so much for your support, and for your prayers. I have six JRTs and an Anatolian Shepherd (the youngest in my pack) who will be four in February. I think someone said something about losing them all - I'm not, just about half the pack although they are all close in age, so I fully am expecting a big "whammy" - it happened before - I lost five dogs, one a month, and my sanity along with it in 2005. The ones I have now helped me cope with that, and I'm sure there will be some left ... but the boys are the ones with the problems, and I'm not sure why, but I have always bonded with the boys better. I need to explain a lot more than I have, I can tell from reading Glyda's post, not only have I not posted numbers, but apparently not symptoms either, and the second ultrasound did show the exact same thing as the first. Or the third ultrasound - I am not sure how many he had, but they all showed the same things, enlarged adrenal glands, liver, and "sludge" on the gallbladder. I am not sure it is the case that Simon could use wheels, because it is not just his hamstrings, (big bulging muscle in all my other dog's thighs is a dent in Simon's) and he has also lost his biceps, so he has four bad legs. I can tell from pictures that this was happening pre-trilostane. I cannot tell if the trilostane has made it worse, nor can my vet. Simon is going to a neurologist tomorrow to talk about how we might find out if this could be something besides Cushing's. It is however, full blown Cushings - we are just going to see if he thinks it is Cushing's plus after I drop off Chandler who T.K. thinks may have had a mini-stroke, and Willy, who T.K. would like to examine his heart more, though I doubt he will have any other news for me than the other vet, which is that Willy has an enlarged heart that is crushing his windpipe. Fortunately, the mass on Han's back was not anything more than a sebacious cyst, so that was the good news in an exhausting week of mostly bad news. I am taking all of Simon's records with us to the neurologist tomorrow. T.K. suggested we go even though he said I could spend a lot of money and time to find out nothing more. Simon has EVERY symptom of Cushings with the exception of excessive water consumption. That is why no Vet wanted to treat him for so long, because "that is the primary symptom" and they wanted me to wait for it. We would still be waiting ... I fear we waited too long. T.K. will also talk to the IMS, Dr. Matz for his take on it which will probably be that he wants to take an expensive look at Simon himself. So, lots of Vet appointments coming up. I have a headache right now, and promise I will post the numbers next post. Oh, and Simon even has one "rare" symptom of Cushings which is that he licks the furniture to the point I thought one of my dogs was peeing on it, until I noticed him doing this. It is very weird the excessive drool he has, but that he doesn't seem to need more water to make it. I almost wish he did have the water drinking problem, just so they would have believed it was Cushing's way back when I did - when I got the call from T.K. that his Alk Phos was high I KNEW it was Cushings, double knew once I read the symptoms, but found no Vet in town wanted to commit to that unless he had excessive water consumption. So if anyone can learn anything from Simon, it is this, YES you CAN have full blown Cushing's disease without the excessive drinking. I have spent many weeks locked in a room with just Simon measuring water if anyone wonders how I can know with so many dogs. I do realize Cushing's progresses slowly, and I think it crept up on us so slowly that we may have waited too long to treat it - something I know I will always regret, because even if the Vet's didn't believe me, I KNEW. :(
Thank you all for the support, I will post test results as soon as my head stops pounding or I have the time - whichever comes first. Your prayers mean the world to us. I know God does care, and I also know He knows what is wrong and how to fix it, and am just praying that he will let us know somehow. And as always, I keep you all and your beloved babies in my prayers. Thanks for always being there to remind me I have to get through this. :)

[apollo6]

Dear Dena,
You need to take a break. Focus on something nice.
I am having the same problem with Apollo.
Went to a neurologist:
Diagnose as follows
Musculoskeletal: Generalized muscle atrophy-most noticeable on head and cranial thing region.
Posture: stands with Stifles hyper extended
Gait: ambulatory with abnormal PL gait. Stiff-legged, dysmetric gait in PL, mild circumduction, tail extends.
Spinal reflexes-pelvic limbs: withdrawal, gastroc intact. Weak patellar bilaterally.
Diagnosis:
Neuromuscular vs Mylelopathy(L4,5,6)-Apollo's back problems
Cushing myopathy, degenerative neuropathy affecting femoral nerves, vascular event, neoplasia
Consider EMG, and muscle/nerve biopsies.- I am not having Apollo go through any of this for now, it costs a fortune.
We have to stay positive for these fur balls. Apollo is still happy and runs to me when I have a treat. But he falls easily now. will email DEcha/Trilostane and see input get.
praying for you and Simon. God didn't get us this far to let us down.
Hugs Sonja and Apollo.

[SavingSimon]

I posted on your thread. Only differnce with Simon's neurologist was that he said he could do a muscle biopsy, but could pretty much rule out the need for one based on his bloodwork. Everything wrong is Cushings, including all of the things your neurologist found in Apollo. We have parallel cases. Thank you so much for your prayers, and empathy, believe me, you have the same from me.
The past couple weeks I found out Willy has congestive heart failure, and Chandler is in the beginning stages of kidney failure, besides his mini-stroke (which in dogs strokes happen in their middle ear, so their strokes are not the same as human strokes in how they happen, but are still called strokes I learned). I am also waiting to see if one of my girls has cancer or not from surgery done on a growth on her chest yesterday. I am braced for bad news. The IMS told Simon's regular Vet one thing, and me another, (he infuriates me) so while Simon's Vet was ready to switch to Lysodren, I decided to go up to 20 mg of trilostane twice a day (from 15) and try that first, since I know he tolerates trilostane, and I imagine it will be hard to know if he is loaded with lysodren since he does not drink too much water, and the trilostane has decreased his appetite (and yet he gained a pound despite that which is weird). The IMS did say one thing that made sense to me, when I was concerned about having Simon off of any treatment for a month. He said that it did not need to be that long, two weeks would be plenty for washing out Trilostane since it is a shorter acting drug, and he would be more concerned about the wash out time with Lysodren if we were switching the other way, because Lysodren is obviously longer acting. I post that in case it is helpful to someone else - he disagrees with Dr. Oliver on the washout time, and reminds me that no one knows what Dr. Oliver's tests of hormone levels really mean - if anything. He is very dismissive of Oliver's work, which makes me wonder why he suggested it in the first place ...
Anyway, sorry I am not posting numbers right now - they are going down, but not where they should be, and I will eventually get to doing that once I am better settled into a routine with all of these dog problems and dog medications. Hugs to you all from all of us.
Dear Dena,
You need to take a break. Focus on something nice.
I am having the same problem with Apollo.
Went to a neurologist:
Diagnose as follows
Musculoskeletal: Generalized muscle atrophy-most noticeable on head and cranial thing region.
Posture: stands with Stifles hyper extended
Gait: ambulatory with abnormal PL gait. Stiff-legged, dysmetric gait in PL, mild circumduction, tail extends.
Spinal reflexes-pelvic limbs: withdrawal, gastroc intact. Weak patellar bilaterally.
Diagnosis:
Neuromuscular vs Mylelopathy(L4,5,6)-Apollo's back problems
Cushing myopathy, degenerative neuropathy affecting femoral nerves, vascular event, neoplasia
Consider EMG, and muscle/nerve biopsies.- I am not having Apollo go through any of this for now, it costs a fortune.
We have to stay positive for these fur balls. Apollo is still happy and runs to me when I have a treat. But he falls easily now. will email DEcha/Trilostane and see input get.
praying for you and Simon. God didn't get us this far to let us down.
Hugs Sonja and Apollo.

[lulusmom]

Hi Dena,

It sounds like you are still having one heck of a time with all your babies. I have two cushdogs and it's all I can do to keep up with them and the other eight healthy furbutts. You have my sympathy.

I really do hope you can find to post, at least, the last acth stimulation test. The results consists of only two numbers, the pre and the post, so it should take you mere seconds to post those numbers for us.

With respect to the washout period when switching from Trilostane to Lysodren or vice versa, Dr. Oliver may not be the final authority on this but his thoughts are consistent with most of the well respected endocrinologists. Your IMS' is correct that switching from Lysodren to Trilostane may be a bigger concern; however, his very general comment about a two week washout period when switching from Trilostane to Lysodren would only be a correct statement if a dog has been on Trilostane very short term, the dog remains symptomatic and there is evidence of adrenal function on stimulation testing. To say that two weeks is a sufficient washout period based solely on Trilostane's short half life is wrong and dangerous.

My dogs were on Trilostane for two years before switching them to Lysodren and to have switched them over after only two weeks would most certainly have been disasterous. Lulu did not become symptomatic or have cortisol above the normal range for almost five months after stopping Trilostane. Had my IMS instructed me to start loading with Lysodren after two weeks, or even one month off of Trilostane, my dogs would probably be Addison's dogs right now, or God forbid, not with us anymore. Trilostane may have a short half life but it can have long term effect on adrenal function, especially with long term use. My dog and many others here have proven that fact.

I am sure that your IMS is aware of all of this and did not feel it necessary to give you a comprehensive explanation but I felt one was warranted here so that members understand that each dog needs to be evaluated as an individual. There is no one size fits all when it comes to cushing's and that includes an appropriate washout period.

[apollo6]

Dear Dena
Just checking in on you and Simon. And praying for you. You are overloaded. Try to take time for your self. Even if it means just sitting on the couch and enjoying your little fur balls, just for today.
Hugs Sonja and Apollo.

[littleone1]

Hi Dena,

I'm sorry to hear that you might now have a problem with one of your girls. You really have your hands full my dear friend.

We're all here for you. Corkster and I are just a phone call away.

(((HUGS)))

[Bichonluver3]

Hi Dena!
Just wanted to check in and tell you we are standing right beside you and your babies. The VERY knowledgeable members will help you with the meds etc as we have had no experience with them but we do send our love and prayers. Miss Chloe's "brother" was just diagnosed with diabetes so we are now learning a whole new additional regime. Please take care of yourself and do not look too far ahead. Just take one step at a time.
Love,Carrol & Chloe & Sparky!

[apollo6]

Just checking in on you Dena.
Hugs Sonja and Apollo

[apollo6]

will try to call you.

[littleone1]

Hi Dena,

I'm glad that you'll be able to get back on the forum soon.

I'm sure that others will be interested in knowing how Simon is doing.

(((((HUGS)))))

[apollo6]

Dear Dena
How are you doing?
Sonja and Apollo

[littleone1]

It is with a saddened heart that I am postimg this. Simon passed away on August 28th.

[Squirt's Mom]

Please let Dena know that Simon's name has been added to the In Loving Memory thread for 2013. If she would like a photo of him included in the album for 2013, ask her to send it to k9cushings@gmail.com and we will take care of that.

Also, please let her know that I send our deepest condolences.
Leslie, Squirt, Trinket, Brick, Sophie and our Angels, Ruby, Crystal, Tasha and Josie

[Budsters Mom]

I am so sorry to hear about sweet Simon. Run free with the others, run free of pain. My deepest condolences go out to you all.

Many loving hugs coming your way,

[doxiesrock912]

I'm so sorry about Simon. My sincere condolences to all of you.

[Bo's Mom]

RIP Angel Simon!! Heaven has a place for you and you will be so dearly missed.

[Harley PoMMom]

Thanks so much for letting us know, Terri. Please let Dena know she is in my thoughts and prayers, and that I am so sorry for her loss of dear Simon.

[scoora]

I'm so sorry for the loss of your sweet boy Simon.
My thoughts and prayers are with you.

[molly muffin]

I am very sorry to read of the passing of Simon. What a long journey for Simon and Dena.
RIP Simon. My condolences.

hugs,
Sharlene and Molly Muffin

[mytil]

Dena, I am so very sorry to hear of your sweet Simon's passing. Our hearts are with you. I hope you have a chance to drop by here...

(((hugs)))
Terry

[addy]

Oh Dena, I am so sorry to read this. It seems like only yesterday we were all here talking about our pups and I have often thought of you and Simon.

My prayers are with you and if you need to talk you know we are all here.

[Truffa's Mom]

Dena, I'm terribly sorry for your loss, we all loved precious Simon and you.

You and all your family members, including your other hairy babies, will be in my thoughts and prayers.

Run free sweet Simon, you'll be missed.

[Spiceysmum]

Dena,
So sorry to hear about Simon. My thoughts are with you.
Linda

[littleone1]

I know Dena appreciates all of your love, hugs, thoughts, and prayers, and she wants me to thank everyone.

[apollo6]

Please let Dena know, we are sending our love and sympathy her way for the loss of her beloved Simon. Words can not ease her loss.
Hugs Sonja and Angel Apollo

[Roxee's Dad]

Oh I am so sorry. Rest in Peace Sweet Simon, You are our newest and brightest star in the sky.........

[mcdavis]

So very sorry to hear of your loss. You and all of your furbabies will be in my thoughts.