New Member - Overridden With Guilt

[Danica]

Hello Everyone!

Our sweet little pom, Jake was recently diagnosed with Atypical Cushings. He is 10 1/2 and has never had any health problems. He is scheduled to start taking a maintenance dose of Mitotane tomorrow (no induction according to our vet, and I frankly feel that they are a little perplexed as Jake shows no outward signs of Cushings with the exception of hair loss which according to them is common at his age).

This all started with a senior panel in Dec of 2009. Bloodwork indicated the following abnormalities:

ALT 545 (norm 12-118)
ALP 1373 (norm 5-131)
Cholesterol 447 (norm 92-324)
T4 .9 (norm 1-4)

The panel also indicated that Jake had a urinary tract infection which was treated with a course of antibiotics and both monocytes and platelet counts were high. At this point the vet prescribed Vitamin E, Milk Thistle, and an Omega 3 oil with a recheck in a few weeks.

Recheck panel was done in January and the liver values have increased:
ALT 772 (norm 12-118)
ALP 1768 (norm 5-131)
Monocyles and Platelet Counts are still high.

Vet indicated that he may have chronic active hepatitis but they are not sure as he has no clinical signs of liver disease. We originally scheduled for a liver biopsy and the vet called and said that the internal specialist stated that both the liver and the adrenal glands were enlarged, so he suspects Cushings...therefore no need for the biopsy (all other organs looked normal -- also he did not see any adrenal tumors). He recommended the UOT ACTH adrenal panel to test for Cushings. Results for the ACTH panel were as follows:
Test, Result, Normal, Post ACTH, Normal
Cortisol, 52.1, 2-56.5, 266, 70.6-151.2
Androstenedione, 1.2, .05-.36, >10, .24-2.9
Estradiol, 98.8, 23.1-65.1, 106.4, 23.3-69.4
Progesterone, .40, .03-.17, 3.41, .22-1.45
17OH, .77, .08-.22, 5.63, .25-2.63
Aldosterone, QNS, 11-139.9, QNS, 72.9-398.5

The notes from UOT indicate presence of increased adrenal activity. However, our vet seems to think that the Cortisol should be much higher so she feels he is atypical and wants to put him on a maintenance dose of Mitotane in order to lower the hormone levels so that the liver values decrease and so liver damage is avoided. Also Jake is NOT neutered, this was my husbands choice not mine for obvious reasons, however the vet says at his age this won't make a difference.

I am scared to death of this drug so we decided to wait and see if he stabilizes on his own as she said this was a slow progressing disease and recheck in a month. Miracles do happen and we were hoping for one.

No miracle, most recent blood panel results are as follows with yet more rising liver values:
ALT 1032 (norm 12-118)
ALP 1844 (norm 5-131)
High monocytes and platelet count along with ANOTHER UTI so more antibiotics.

At this point it just makes me sick to think that we should start the Mitotane. He is such a happy and active dog and with the exception of the hair loss, you couldn't even tell there is anything wrong. On top of that the vet indicates that we should have EMERGENCY prendisone on hand which just compounds my stress.

I have researched this disease online for the past week and I am exhausted. I feel so guilty purposely medicating our sweet little pom who seems to be happy and content. On the other hand, if we do not medicate now, I think I will feel worse if we did not take this opportunity to prevent something down the road (ie liver damage etc). I am just sick to my stomach as I just feel that there must be something else we can do that does not involve taking a chemo medication when there are no outward signs of the disease.

Thanks for listening or reading in this case...any input would be GREATLY appreciated.

[Wally P's Mom]

Danica:

Others will chime in with comments about the blood tests results and it has been a long time since I have read Cushings blood tests results, I could not do it justice.

My Wally was in a situation like your Jake. I did not want to place him on lysoden at all even a maintenance dose. The fear was overwhelming. It was a horrible feeling. I did not even want the drug in my house. The precautions that I took were many. I wore gloves whenever I handled the drug. The spoons that I used were disposable. I used a special pill cutter. However, Wally and I did it. It was OK and he took it from me with little problems. We did have pred on hand in case something happened. We (my husband and I) freaked out once and the pred did come in handy (although Wally was OK and my husband could not figure out what runny stools looked like).

However, Wally did eventually crash and become an A-Dog. His crash was gradual and caught quickly. I read a lot here on the forum and I watched my dog very closely. When this happened, it was not a dramatic as I thought it would be, but I knew he was sick and not right.

Throughout all of this I maintain a good relationship with out vets. I place a lot of confidence in them and can discuss anything with them and ask plenty of questions. I still do today.

Yes, you to can do this. I can not promise you that you will have the same experience that Wally and I had. However, you need to do what you must for Jake. Wally today has been treated/diagnosed since last July for Addisons and was diagnosed last March for Atypical/Typical Cushings. Either condition is manageable. Wally is stable and very active. He is like any other dog and one would never know how ill he is and was.

You have a lot of supporters here and will get plenty of advice. Listen and learn.

I don't know if I helped or frightened you more. I hope I helped. Point being, you are not alone.

Marge

[mypuppy]

Danica,
Welcome to you and your precious Jake. I am no expert in interpreting any of these test results associated with Cushings or atypical Cushings since my pup's Cushings is pituitary based. I am sure you will soon hear from Lori (Harley's mom), Leslie (Squirt's mom), who are extremely experienced with atypical Cushings and have treated successfully with Lysodern. So please be patient and stay on board here because you have found a wonderful resource of information which will get you through this unfortunate ride. As you, I felt the same overwhelming feeling on what to do when my pup was first diagnosed with this condition. My gp scared the living daylights out of me about treatment to the point where I even considered not treating. That's when I decided to educate myself, do a lot of research, and I joined this great forum--because of these wonderful people here I was able to make all the necessary decisions for treating my pup. I began treatment with trilostane, and can happily say my pup has been in remission for almost 5 months now. She is my happy dog again, playing, wagging her tail, fetching her balls, etc. It's such a great feeling. One I wish for you again once you proceed with your method of treatment. Everyone here understands your pain and feelings of guilt because we have all been there at some point or still are, but please don't let this get the best of you because there is such much hope for your little Jake. Take your time with your decisions as they do say this is a slow progressing condition. Post, post, post here until you get all your questions answered. Debbie may also pop in at some point to comment on Jake's test results (she has been so helpful to me with interpreting my Princess's results). Danica, you and Jake are not alone. We are all here for you to offer the best support we can, and with your pup's best interest at heart. In the meantime, please stay strong please, give your little Jake some sweet belly rubs and know we're here for you. I look forward to reading your future posts on his progress. xo tight hugs, love, Jeanette

[Roxee's Dad]

Hi Danica,
A quick welcome from me too:)

Since Jake has had the UTK panel, please ask you vet for copies. Usually on the page of treatment options it will state a number of options and often times it seems with our Atypical cush pups, treatment option may start off with melatonin and lignans.

Many of our members are treating their Atypical pups with those options and usually only revert to trilo or Lysodren when the cortisol levels are higher or continue to increase.

The others as I affectionately call them will be chiming in soon to help you sort through this:)

Please do not feel guilty as you have done all the testing, and are in the process of education yourself on this disease.:) Cushings is not a death sentence and if properly treated by a knowledgeable professional and diligent owner, will go on to live a long happy life.

Hang in there, you and Jake have come to the right place for help in understanding this disease. :)

[Squirt's Mom]

Hi Danica and welcome to you and Jake! :)

I saw your thread title and thought, "Oh, no! Another new-comer trying to usurp my throne!" I am the Queen of Guilt and won't give up the title quietly, so you are fore-warned! ;):p:D LOL

If you got a copy of the treatment sheet from UTK, could you tell us what they recommended as treatment? They usually list them by number saying something like, "many vets choose #....." UTK is the leader in research on this particular form of Cushing's and as such, theirs is always the recommendation I would choose to try first...JMHO, tho. ;)

My Squirt is Atypical, too. Her current treatment is lignans and melatonin; we haven't had to use the Lyso, yet. She was originally diagnosed in 3/08 with PDH, meaning she had a tumor on her pituitary gland. Her cortisol levels were elevated during that time but in subsequent testing a splenic tumor was found and it along with part of her spleen were removed. Since then, her cortisol has returned to normal but the intermediate hormones remain elevated. So her diagnosis is now simply Atypical. :cool:

Squirt has never had a lot of signs nor really strong ones, especially since the tumor was removed. But her last test still showed elevations in 3 of the other hormones...including estradiol - the "booger of the hormones" as it has been called here by one of our members.

The hormones involved in Atypical do not include the cortisol. If cortisol is elevated, too, then the pup is considered to have true Cushing's with concurrent elevated intermediate hormones. I'm a bit confused as to why your vet thinks the cortisol "should be much higher"?

Lysodren will address all six of these hormones with the possible exception of estradiol. All these hormones are produced in the adrenal glands. However, the estradiol may or may not be from the adrenals; it can be found in skin, hair follicles, fatty cells to name a few. Since Lyso works directly on the adrenals, any estradiol being produced outside the adrenals will not be affected by the Lyso. This is where the lignans and melatonin come in; they work together to treat the estradiol that may be coming from outside the adrenals.

Many of us who have Atypical pups have started with the melatonin and lignans treatment first, then add the Lyso if needed, as a maintenance dose only. It can take the melatonin and lignans several months to work while the Lyso will go to work almost immediately. They are used together quite often as well.

Lyso scared the crap out of me when I first came here but as I have learned more, I would be comfortable using it today. Since Jake has been prescribed a maintenance dose, it will be even easier for you...and him! The pred is always a requirement when using Lysodren, as a precaution. With a maintenance dose, it is unlikely that it would be needed but good to have on hand just the same. It would be used to replace cortisol IF the level got too low but that is typically seen in the loading phase (if it even happens then) which you are not doing. There is nothing to feel guilty about in treating Jake. Properly handled by the vet and parent, it is perfectly safe....just as aspirin, properly handled, is perfectly safe. Plus you now have a whole slew of folks on your side to help! :D

Keep your chin up! You are doing a wonderful job on Jake's behalf! You have been researching, trying to learn what is going on with your little boy and how to help him...that means you are a GREAT mom! And Jake is so lucky to have you on his side. Please ask questions, read, read and read, then ask more questions!

Remember, as Marge said, you are no longer alone. We will be with you every step of the way. We are a little family here and are so happy to have you and Jake join us!

Hugs,
Leslie and the girls - always

[lulusmom]

Hi Danica and welcome to you and Jake.

I’m sorry for the reasons that brought you hear but I’m sure glad you found us. I have two Pomeranians with cushing’s, one of which also has elevated intermediate/sex hormones and is bald except for her head and legs. Despite treatment, she has never regained her coat which is not uncommon in Pomeranians. In order to stay coherent and make it easier for you to tie my comments to the information you provided, you will find my input in blue below.


Hello Everyone!

Our sweet little pom, Jake was recently diagnosed with Atypical Cushings. He is 10 1/2 and has never had any health problems. He is scheduled to start taking a maintenance dose of Mitotane tomorrow (no induction according to our vet, and I frankly feel that they are a little perplexed as Jake shows no outward signs of Cushings with the exception of hair loss which according to them is common at his age).

Unless you misunderstood your vet, I don't think s/he is familiar with adrenal disorders, dermatological problems nor the Pomeranian breed. Senior dogs of any breed don’t just lose their coat when they get old and when they do, there is an underlying condition that is causing it. Pomeranians are in the Nordic breed family and Nordic breeds are predisposed to hormonal imbalances. Vets that are experienced with cushing’s know that Poms have their own form of the disease. When it comes to alopecia x and endocrine disorders in general, I think Poms have been studied more than any other breed so there is lots of published material out there that your vet has access to. One study actually showed that a good number of perfectly healthy Pomeranians with normal coat and skin had elevated 17HO Progesterone and androstenedione. Why do some lose their coat and some don’t, who knows.

This all started with a senior panel in Dec of 2009. Bloodwork indicated the following abnormalities:

ALT 545 (norm 12-118)
ALP 1373 (norm 5-131)
Cholesterol 447 (norm 92-324)
T4 .9 (norm 1-4)

The panel also indicated that Jake had a urinary tract infection which was treated with a course of antibiotics and both monocytes and platelet counts were high. At this point the vet prescribed Vitamin E, Milk Thistle, and an Omega 3 oil with a recheck in a few weeks.

Recheck panel was done in January and the liver values have increased:
ALT 772 (norm 12-118)
ALP 1768 (norm 5-131)
Monocyles and Platelet Counts are still high.

Vet indicated that he may have chronic active hepatitis but they are not sure as he has no clinical signs of liver disease.

Just a note here: Dog with primary liver disease often times do not show any symptoms until they lose 60% to 70% of liver function. A dog will be jaundiced but again, even this symptom doesn't always show up until the liver is pretty far gone. The good news is that the liver has a tremendous reserve capacity and can overcome a lot of assaults.

We originally scheduled for a liver biopsy and the vet called and said that the internal specialist stated that both the liver and the adrenal glands were enlarged, so he suspects Cushings...therefore no need for the biopsy (all other organs looked normal -- also he did not see any adrenal tumors). He recommended the UOT ACTH adrenal panel to test for Cushings. Results for the ACTH panel were as follows:

Test, Result, Normal, Post ACTH, Normal
Cortisol, 52.1, 2-56.5, 266, 70.6-151.2
Androstenedione, 1.2, .05-.36, >10, .24-2.9
Estradiol, 98.8, 23.1-65.1, 106.4, 23.3-69.4
Progesterone, .40, .03-.17, 3.41, .22-1.45
17OH, .77, .08-.22, 5.63, .25-2.63
Aldosterone, QNS, 11-139.9, QNS, 72.9-398.5

The notes from UOT indicate presence of increased adrenal activity. However, our vet seems to think that the Cortisol should be much higher so she feels he is atypical and wants to put him on a maintenance dose of Mitotane in order to lower the hormone levels so that the liver values decrease and so liver damage is avoided. Also Jake is NOT neutered, this was my husbands choice not mine for obvious reasons, however the vet says at his age this won't make a difference.

Your vet is incorrect on two counts here. 1) Jake’s cortisol is definitely positive for typical cushing’s so I am stunned that your vet wouldn't know this. According to the tests done that you’ve included here, Jake would normally be diagnosed as having pituitary dependent cushing’s with elevation of all intermediate hormones. I am really concerned that your vet is very inexperienced with cushing’s. Since Jake has no overt symptoms, other than loss of coat, I am happy to see that your vet has prescribed a maintenance dose as it is not recommended to treat a dog with no symptoms. Unfortunately, you can’t really use loss of coat in a Pomeranian as a basis for starting full blown treatment with Lysodren. 2) My second issue with your vet’s comment about Jake’s intact status not being a problem at his age. That is absolutely not true in this case. Jake’s estradiol is very elevated and this has everything to do with Jake’s testicles. Estradiol is a pistol to deal with because it is the only adrenal steroid that can be found outside of the adrenal glands. The testicles are at the top of the list of bodily tissues where you’ll find estradiol and for this reason, UTK almost always includes having the dog castrated as a treatment option. If you look at the UTK treatment recommendations on Jake’s paperwork, I’m sure you’ll find it. Once you get those liver enzymes down, you may want to reconsider having Jake neutered.

I am scared to death of this drug so we decided to wait and see if he stabilizes on his own as she said this was a slow progressing disease and recheck in a month. Miracles do happen and we were hoping for one.

The drug is only dangerous if a vet doesn’t follow protocol and the pet owner is not vigilant in watching their dog for signs of too much lysodren. It is not totally unheard of but maintenance doses are unlikely to cause any adverse reactions. We’re here to help you through this so let us hold your hand and soothe your frazzled nerves. I remember being a wreck when I had to load Lulu the first time back in 2005. She’s an itty bitty thing, less than 5lbs so you can imagine my fears. With learning more about the disease and the drug, you’ll probably come to realize that Lysodren is actually a Godsend.

No miracle, most recent blood panel results are as follows with yet more rising liver values:
ALT 1032 (norm 12-118)
ALP 1844 (norm 5-131)
High monocytes and platelet count along with ANOTHER UTI so more antibiotics.

Unless the internal medicine special saw these values and assured you that these continued rises in enzymes are solely the result of the cushing's, I would want a second opinion. ALT is a liver specific enzyme that is usually only mildly elevated with cushing’s and Jake’s increases have now exceeded thresholds where most vets will do bile acid tests and/or liver biopsy to determine what is going on in the liver. Yes cushing's can cause some huge elevations but so can other underlying conditions. Can you look at the bloodwork and let us know if the GGT, AST, albumin and bilirubin are normal?

At this point it just makes me sick to think that we should start the Mitotane. He is such a happy and active dog and with the exception of the hair loss, you couldn't even tell there is anything wrong. On top of that the vet indicates that we should have EMERGENCY prendisone on hand which just compounds my stress.

Like I mentioned before, it’s pretty unlikely that you’ll have to use the prednisone but I commend your vet on this particular point in making sure that you have it on hand.

I have researched this disease online for the past week and I am exhausted. I feel so guilty purposely medicating our sweet little pom who seems to be happy and content. On the other hand, if we do not medicate now, I think I will feel worse if we did not take this opportunity to prevent something down the road (ie liver damage etc). I am just sick to my stomach as I just feel that there must be something else we can do that does not involve taking a chemo medication when there are no outward signs of the disease.

Cushing’s has a way sapping every ounce of energy from our bodies and making mush of our brains so it should make you feel better to know that we’ve all been there. I’m glad to hear you are doing research because with cushing’s, knowledge is the best sedative there is.

Danica, I realize that getting a diagnosis and a scarey explanation of the disease and the drug can send you reeling. I am hoping that with the trauma of all of this, your mind may not have interpreted your vets comments correctly. If this isn’t the case, then I have some serious concerns with your vet. I also have concerns with a specialist that would look at the stimulated cortisol results on the UTK panel and agree with a diagnosis of atypical cushing’s. Honestly, before going full speed ahead, you may want to consider consulting with another internal medicine specialist (IMS). My old gp vet didn’t now diddly about cushing’s and it wasn’t until I took Lulu to an IMS that she was properly diagnosed and prescribed appropriate treatment. It was that IMS that sat me down and explained that Pomeranians have hormonal issues distinct and apart from most breeds. My second Cushdog was a shelter rescue who was diagnosed by a teaching hospital that did a fabulous job of diagnosing him with appropriate tests. After he become my furbaby, he also sees our IMS. I no longer have a gp vet.

Thanks for listening or reading in this case...any input would be GREATLY appreciated.

I hope I haven’t addled your brain more than it already was and if I did, please let me know. Ask as many questions that pop into your mind. You’ll get plenty of answers, lots of experience sharing and a ton of support. Just call us the sweaty hand family.

Looking forward to hearing more about Jake.

Glynda

[StarDeb55]

Danica, there is nothing to feel guilty about. I, also, want to assure you that lysodren is a very safe drug as long as you educate yourself about the drug, & what to look for with your pup. As Glynda has already said, pups run into trouble when a vet does not follow standard protocols using lysodren, "flies by the seat of their pants", & the pup pays the price. I have now successfully treated 2 pups with lysodren, & never really had a serious problem with either boy as I made sure I knew what to look for, & if I didn't understand something, I asked the vet for clarification until I was sure I understood.

Glynda has pretty well covered an explanation of Jake's UTK panel results, so I will mostly defer to her explanation, along with the fact that she has 2 Pom's, both being treated for Cushing's. I want to emphasize what Glynda has already said, I, too, have serious doubts about your vet's level of expertise with Cushing's. Jake's results clearly indicate that he has typical Cushing's with elevations in all intermediate hormones. My 15 yr. old Shih Tzu, Harley, was diagnosed with typical Cushing's with all intermediates elevated 2 years ago, & Harley's original UTK panel results could be a dead ringer for Jake's results. My former IMS was adamant that because of the elevated cortisol, Harley would have to undergo a loading or induction period with lysodren. The loading phase can be a little nerve wracking, but you just have to be very diligent in monitoring your boy while you are loading. The beauty of using lysodren is it will control the elevations in all adrenal produced hormones. The one exception to this is estradiol which has non-adrenal sources of production. Glynda has already explained that an intact male will have a severely elevated estradiol because estradiol can be produced in the testicles.

Cushing's is not a death sentence. My 1st boy, Barkley, was successfully treated with lysodren for nearly 8 years before crossing the bridge at 15 due to causes unrelated to his Cushing's.

We are here to help in any way we can.

Debbie

[Danica]

Thank you SO much for your comments. I feel better already just knowing that this disease can be managed and that we will get through it.

Jake had his first maintenance dose of Mitotane this morning. He seems to be doing well...no vomiting, no runs, no allergies...in fact he is pacing back and forth through his doggy door waiting for his daddy to come home with dinner and movies. We actually had the Mitotane compounded into a liquid (beef flavor) since he is VERY sneaky when it comes to pills. Seriously, he will eat the cheese all the way around the pill and pretend to swallow, then conveniently spit it out. We nipped this in the bud to make everyone's life easier.:D

My concern now is that our vet is not really experienced with this disease. I know she consults with two different internal specialists as she states that she wants additional opinions re Jake since he shows no clinical signs of Cushings. All three were in agreement that they would not have recommended treatment at all for Cushings, had it not been for the rising liver values. She will not do a dental cleaning on him due to these values since the anesthesia could further harm the liver. She also does indicate that due to the fact that the liver does have regenerative properties, Jake may not show any signs of liver damage until he has lost 75% of liver function.

I am not sure why she stated Atypical...I assumed it was because he shows no symptoms and she did state that while his cortisol levels were elevated, there were not overly exaggerated...she did indicate that she has seen cortisol levels much higher. The UOT labwork simply has the "indicates presence of increased adrenal activity" box checked. It very well could be that I misunderstood due to my nerves, so I will definitely call her tomorrow and clarify this and post back here.

The treatment options on the UOT labwork indicate items 1-5 or 6 or 8. In that order...
(1) Ultrasound - we already did this and the internal specialist saw enlarged adrenals and liver but did not see any tumors - all other organs looked ok too
(2) Melatonin - our vet indicated this was an option, however both specialists indicated that they did not have substantial results with Melatonin alone...but that it could be used with the Mitotane - they also indicate that it takes months for the Melatonin to work and due to 3 months worth of rising liver values, they recommended the maintenance dose of Mitotane instead
(3) Melatonin patch - same reasons as above
(4) Lignan - same reasons as above
(5) Maintenance dosage of Mitotane - this was the recommended treatment due to the rising liver values
(6) Traditional Mitotane treatment - obviously if the maintenance dosage does not work -- this is where we are headed
(8) Ketoconazole - treatment option in the case where Mitotane does not work

Additional bloodwork values for GGT, AST, Albumin, Bilirubin:

Dec 2009
GGT - 161 (norm 1-12)
AST - 83 (norm 15-66)
Albumin - 3.4 (norm 2.7-4.4)
Bilirubin - 0.2 (norm 0.1-0.3)

Jan 2010
GGT - did not test
AST - did not test
Albumin - 3.5 (norm 2.7-4.4)
Bilirubin - did not test

March 2010
GGT - 224 (norm 1-12)
AST - 110 (norm 15-66)
Albumin - 3.5 (norm 2.7-4.4)
Bilirubin - 0.2 (norm 0.1-0.3)

The castration also makes complete sense to me and as I mentioned, had it not been for my husband, this would have been done a long time ago. In fact, when our liver values decrease and they are able to do the dental cleaning, we may have this done at the same time.

Again, thank you so much for your comments and opinions. I may actually get a good night sleep for once.:p