New to board, not so new to Cushing's

[nicole]

Hi everyone. My name is Nicole, and I have an 8 year old Chinese Crested named Atticus who was diagnosed with Cushing's last year. I found out about the same time I was told he also has SARDS. Apparently the two seem to go together somehow, and a lot of dogs who develop one disorder will generally get the other, although it is not always that way.

Anyway, Atticus has been getting a lot worse lately. He seems so lost all the time, he just sits and stares. He can't jump on furniture as well anymore and he whines a lot for seemingly no reason. I've had him to the vet a few times for all of this and I just keep getting told that he's getting older and it's going downhill....and that I will know when it's time. It just sucks to think that a year from now my baby could be gone.

Part of me blames myself, because I didn't start him on the trilostane last year when the vet initially offered it. But when she explained the cost of the drug and the cost of all the bloodwork and monitoring I just couldn't afford it. Even with Care Credit. It wasn't going to happen. Now, even though I still can't really afford it, I'm wondering if starting the drugs might help. Or is there a certain point where it all becomes worthless? I really don't know.

Anyway, that's a bit about me.

*nicole*

[frijole]

Nicole,

Glad you found us. I am no expert on SARDS but I've been here a long time and I have read a number of cases and if my memory is correct dogs often diagnosed with SARDS do not even have cushings! It is very critical to treat the SARDS as the eyesight can be saved. Anyway I am going to link you to some info that should be helpful.

Hopefully someone with more knowledge than i will chime in. Kim

http://www.k9cushings.com/forum/showthread.php?t=213

[nicole]

I know not every dog with SARDS gets Cushings, but I did read (and was told by my vet) that there are a good amount of cases where they're a dual diagnosis and sometimes the SARDS can mimic some symptoms of Cushings...but I had the bloodwork to confirm. It's definitely Cushings. Anyway, I have had him to the ophthalmologist and they pretty much said besides giving him supplements for his vision there isn't really anything else to do for the SARDS. He seemed to have some amount of vision left until just recently. Now I'm pretty sure he's 100% sightless.

Anyway as far as the Cushings goes, he's always ravenous, always thirsty, he's having regular incontinence issues, he walks very stiff-legged and wobbly, and just seems out of it in general. Like I said, the vet didn't really offer much besides that this could be the beginning of the end. And we were just there 3 weeks ago.

What else can I expect to happen before I know when it's time?

[frijole]

I see that you got a confirmed diagnosis. Which tests were done? Either the ACTH or the low dose dex suppression (LDDS) test are usually done.

Cush dogs can live very very normal lives. THat is with treatment. The only difference is that in your case your dog is blind. My dog Haley was diagnosed with cushings at 12 1/2. I treated her for 4 1/2 yrs and she passed away of old age. She had lost most of her hearing and eyesight but she was a happy old lady in her final days. Blind dogs can also lead happy lives.

I really don't know why your vet would say the end is near. If it's cushings you can treat it and the hunger and thirst issues go away. That said you need a vet with experience treating it. I'm not sure you have that based on what you have described so far. Perhaps there is alot more to the story.

If you are up to it you could certainly treat your dog for cushings and have many happy days ahead - that said I don't know your situation or the exact nature of your dog's condition. Like I said - the peeing and hunger are a part of cushings'. Tell us all about your baby!

Glad you found us, Kim

[molly muffin]

Hi Nicole and welcome to you and Atticus.

I too am no expert on SARDS. We've seen a few dogs on here with both, or just SARDS though.
One thing you could try is a low dose of Trilostane. You'd have to do the ACTH tests though, pretty regular until you see he is stabilized. Find out for one thing if they (vet and IMS) are experienced treating both cushings and SARDS.

But before we even get to that point. Do you have copies of tests that have been done since the diagnose, the blood panel, urinalysis, and specifically any cushings tests like ACTH and LDDS.
If you could post those results, with just the abnormals, units of measurement (ug or nmol) and range, that would be helpful.
8 years old just seems awful young to be looking towards the end. So, maybe there is something that can be done to prolong that.

Often times, dogs with SARDS when they lose total sight can experience what depression type symptoms too. So that is something to keep in mind. Has there been an ultrasound done to check internal organs? Had he been checked for a UTI?

I know a ton of questions. :) Lets not give up hope yet though okay.

hugs,
Sharlene and Molly Muffin

[frijole]

I just wanted to add that I would bet that the reason your dog seems out of it is because of the sudden blindness. Imagine if it were you - world turned upside down. It takes a while to adjust but dogs are resilient. Cushings' is NOT a death sentence. A pain in the butt but not the end of the road at all. If your vet led you to believe that then your vet doesn't know anything about this disease. Kim

[nicole]

Unfortunately I don't have the test results in front of me. I'm not sure my primary vet gave me the actual copy of the LDDS results, to be honest. I do have the recommendations from the ophthalmologist, but that doesn't really help. My vet offered the treatment of trilostane, but at the time I could not afford it, as she quoted me prices over $2500 in the first 6 months, between medication costs and the monitoring necessary. I do have Care Credit, but the limit is nowhere near that high. I wish I had the financial means for treatment, but I just do not. If that is really what it would cost. I really don't know how familiar my vet is with Cushings, but a lot of what she did tell me makes sense and goes with the things I have read online.

I can see how he'd be depressed with the sudden total loss of sight. I did think about that. My vet also mentioned "doggie Alzheimer's", but I'm not sure about that. I know he gets lost easily and doesn't always respond to sounds (clapping, foot stomping, a clicker, etc) but I'm not sure that's a sign of old age, as he is only 8. But I know the SARDS doesn't cause the stiff gait or the wobblyness. I guess what concerns me the most is that he isn't really the same happy go lucky dog he was before. Sometimes he can be, but not as often anymore.

So far he hasn't had any ultrasounds, but he has been tested for UTI and that was negative.

Anyway, Atticus himself is a great dog. He still can be pretty spunky (especially if he thinks he's getting a treat), he loves to play with his favorite toy - which is a little stuffed monster. He also loves cuddling, either with me or under a blanket. And he love, love, loves fruit and yogurt.

[nicole]

I would post a few pictures of him, but I haven't figured out how to do that yet :)

[molly muffin]

I think we are all posting at the same time. :D I keep running back here to see what was said. LOL

Definitely it can be expensive, but there are things that can be done to keep costs down too, such as freezing the ACTH compound, so you get more than one test out of it. Using compounded medicine instead of the name brand vetroly. I think that might be likely in your case anyhow due to his weight. Things like that.

As for test results, you might want to see if you can get copies from your vets for yourself anyhow. That is just one of those things that us owners of babies with issues learn that it is easier to do. You can then refer to them any time you want to do a comparison, etc.

If the liver values are elevated you could try giving liver supplements too. It won't help the cortisol levels, but might help the liver.

Atticus sounds like a total darling and a very well loved one :)

This is usually a long road and many of the members here have been through this for years and years. Hopefully you'll still be talking about his love of life for a long time to come. :) We never give up hope around here and you'll find that this can be a great place for support. Some days are always harder than others, but you don't have to worry it about it alone. We have a full forum of worriers. :)

Sharlene and Molly Muffin

[nicole]

Let's see if this works..

http://img.photobucket.com/albums/v706/eyeslowlyunfocus/atticus/August-2008016.jpg
My smiley boy!!!

[nicole]

http://img.photobucket.com/albums/v706/eyeslowlyunfocus/atticus/April-Etc029-1.jpg
I love this pic of him. I forget how I did the swirly effect though.

[lulusmom]

Hi and welcome from me too.

Getting a diagnosis is the most expensive venture of the whole process or maybe I should say the highest expenses hitting you all at once. I have no idea what your vet contemplated in that $2500 but you can cut costs a lot by working out a plan with your vet. ACTH stimulation tests which are done to monitor treatment are not cheap but you can get those cost way down if your vet does not use the entire vial of the stimulating agent, cortrosyn. This stuff is wickedly expensive and most vets don't know that little guys like yours only need a small amount of the vial to get an accurate reading on the stim test. For instance the vial contains 250 mcg and it only takes 5mcg per kg for each test. If Atticus weighs 10 pounds, that equates to 4.54kg so you would only have to use about 25mg of cortrosyn per test. That means you could get 10 tests out of one vial if your vet is would agree to store the remaining agent in syringes and freeze them for future use. Do you think you could talk to your vet about that? We can give you some information on how to reconstitute and store the agent, which you can share with your vet. You have absolutely nothing lose and Atticus has everything to gain if you can get your vet on board with this.

Another way to save money is to talk to your vet about using compounded Trilostane. I had one cushdog on 15mg twice a day and I spent about $87 for a three month supply. That was a few years ago but I don't think it's gone up that much. Ask your vet if s/he is willing to call in or give you a script for whatever dose Atticus needs. How much does he weigh?

As others have mentioned, it would be great if you can please round up the testing that was done to confirm the diagnosis and post them here.

Glynda

P.S. I see you posted a picture of Atticus while I was typing. Very cool!

[nicole]

I will definitely talk to my vet about that. Sounds very smart. I will definitely need to start writing this all down, because it can be a lot to remember. Right now Atti weighs about 19.5lbs...which is a huge jump from his pre-Cush weight of 11lbs. He really packed it on!

I am not sure if my vet does payment plans, but I can always ask. He's not due again til May for his bi-annual check up but I may give a call sooner than that once I have sufficient info to try and figure out some sort of treatment plan. I may not even need to bring him in, considering our vet knows his diagnosis and she may just be able to discuss treatment over the phone. That way I only have to bother bringing him in if we're going to start treatments. I only say that because Atti is a TERRIBLE traveler. Hates the car with a passion! So un-dog-like.

[frijole]

Love love love the photos. What a character - you can just tell!

I just wanted to pose a question for Glynda or anyone else that might know... We know that the LDDS test often comes back with FALSE positives when non adrenal illnesses are present. Do we know if this is true with SARDS? I would think so. And since the symptoms are the same - how do we know for sure that Atticus has cushing's?

Just want to make sure... Kim

[nicole]

Love love love the photos. What a character - you can just tell!

Thanks! I knew from day 1 he was going to be the love of my life, and he's never disappointed.


We know that the LDDS test often comes back with FALSE positives when non adrenal illnesses are present. Do we know if this is true with SARDS? I would think so. And since the symptoms are the same - how do we know for sure that Atticus has cushing's?

What other illnesses could it be then? Just wondering..

[frijole]

The symptoms of SARDS are almost identical to cushing's. I'm talking about in dogs that just have SARDS.

http://en.wikipedia.org/wiki/Sudden_acquired_retinal_degeneration

http://wiki.answers.com/Q/What_are_dog_side_effects_of_SARD

Note the writer of the 2nd article describes stiff legs, weight gain and disorientation... sounded just like what you are describing.

Kim

[labblab]

Hi Guys,

I am no expert re: SARDS, but I think a part of the differential diagnosis relates to the persistence of the Cushing's-like symptoms. Nobody yet knows the actual cause of SARDS, and it is true that along with the loss of vision, a dog can exhibit excessive thirst, urination, hunger, etc. at the the same time or during a time period preceding the vision loss. With SARDS, even though the vision loss is permanent, I think those other symptoms can persist for a time but sometimes eventually fall away. But especially when the Cushing's symptoms remain (or even worsen as is the case with Atticus), it makes sense to perform the traditional Cushing's testing. And if "positive," I believe you have a fair degree of confidence that the Cushing's diagnosis is accurate. But if I'm wrong about this, somebody please correct me.

Marianne

[frijole]

That makes sense. So my question is - since they did the LDDS test - would it be better to pursue an acth test to confirm the dx?

[nicole]

Well, personally I'm satisfied with the testing that has been done. If my vet says Cushings from the LDDS results, I'm going to trust her on that. I have confidence that while she may not know all the ins and outs and particulars of the disease, that she can very well diagnose it.

Even though the symptoms of SARDS and Cushings may be the same it still doesn't mean Atticus doesn't have both. And why would my vet tell me he has a problem that he doesn't? Especially when I know she would need to have the test results to back that up. I know of course they do want to make money, but giving out wrong diagnoses isn't a very good way to do that. Certainly wouldn't help your reputation.

[nicole]

I have no problem posting Atti's LDDS results, I just don't know when I will actually have them, as his vet is a bit far away and he's not actually due for another visit for a couple of months...unless something happens in the meantime, which I would hope it doesn't!

On second thought, I might be able to have the results faxed to me. I'm pretty sure they'd do that. Now that you guys are asking I'm kinda curious myself. Not that the numbers really mean much to me personally, but I do wonder what they are.

[frijole]

Nicole, I am sorry if you feel I am doubting your vet. The truth is I arrived here 8 yrs ago with a dog that had been diagnosed with cushings and 4 yrs later my 2nd dog was diagnosed with cushings. Just like many many dogs before her she was misdiagnosed. The vet didn't do it on purpose. The LDDS test has flaws and that is why the specialists in the field recommend having more than one test done to confirm the diagnosis. The drugs used to treat cushings are strong - they work great but they are chemo drugs and they can be harmful if given to a dog that doesn't have cushings. My dog had 2 false positives on the LDDS test. That coupled with seeing dogs overdose and die over the last 8 yrs make me very conservative before giving drugs. Forgive me if I offended you. Kim

[nicole]

You didn't offend me, I was just confused. Like I said, I trust my vet so if she tells me (with proof) that my dog has a specific problem/disease, I'm liable to believe her because she's the expert. I could always do further testing, but at this point I'm not even sure that I'm going to go the avenue of the treatment anyway, because of the initial high costs. So I just don't know yet.

[Squirt's Mom]

Hi and welcome!

I wanted to share our story with you to show how easily it is to get false-positives. My Squirt tested positive on five cushing's specific tests - LDDS, HDDS, ACTH, UTK panel and ultrasound (2 of them). After the second ultrasound I was told about a tumor on her spleen. Once that tumor was removed, her cortisol returned to normal. All five of those test were wrong about her cortisol level being due to Cushing's - the level was due to the stress put on her system from the tumor.

Cortisol is a natural hormone in all our bodies and it is one of the fight or flight hormones. So with ANY stress, internal or external, this hormone will rise as it is supposed to. In Cushing's there is no non-adrenal cause, like the tumor, for the elevations but these possibilities need to be ruled out. The drugs used to treat Cushing's are powerful and should not be used if not needed. A tumor on the spleen was not a reason to use those drugs but if I hadn't pursued testing as I did, she would have been put on treatment when she didn't need it and that tumor would have ruptured, killing her. For this reason I am always nervous when folks are willing to put such powerful meds into their babies bodies based on one test...or willing to forego treatment or testing in fear of the drugs.

Hugs,
Leslie and the gang

[Boriss McCall]

Hi & welcome to the forum
I just love that first picture of your pup smiling. :D

I agree with everyone here. It took several test before I knew for sure my dog had Cushing's. He was 8 when he was diagnosed. He was having the wobbly legs & not jumping issues as well. Overall just started acting older than he really was.
He has been on Trilo since the summer. He is so much happier & back to his normal self.

It is expensive.. but, I just try to take it month by month.

You will get lots of good advice here from VERY experienced people. I have seen a lot of times these people helped save dogs lives because their vets were very inexperienced & really didn't have any first hand experience with cushing's. You can trust the advice you are given here.

Good luck & welcome.. :)

[labblab]

Nicole, here's a link to the article that folks have been referencing as to how you and your vet can save money on ACTH stimulation testing. It's written by Dr. Mark Peterson, who is a noted canine endocrinologist.

http://endocrinevet.blogspot.com/2012/03/how-to-dilute-and-store-cortrosyn-for.html

The reason why this article is so helpful is because the ACTH testing will be one of the greatest expenses associated with Cushing's treatment. Not only is it used as a diagnostic blood test, but it is also the test that is used to monitor treatment if you do opt to go forward with medication. In terms of diagnostics, both the LDDS and the ACTH have pluses and minuses. The LDDS is less likely to miss diagnosing Cushing's in a dog who really has the disease; the ACTH is less likely to falsely diagnose Cushing's in a dog who doesn't. But that means the reverse is also true: the LDDS sometimes indicates a dog has Cushing's when there is actually something else going on, and the ACTH sometimes comes back "negative" for a dog who does have Cushing's after all. Did I make that confusing enough??

Anyway, it is perfectly reasonable that your vet opted to perform the LDDS on Atticus. It is probably the first diagnostic test of choice for many vets. However, since none of us knows exactly what causes SARDS, I think that's why the suggestion is being made that you might want to also perform an ACTH test since it is less likely to be skewed by other ongoing illness. And if you do decide to move forward to treat, there would be a benefit to also having performed an ACTH in advance, as well. This is so that you would have a pre-treatment baseline measurement of his cortisol against which to compare the future monitoring ACTH tests. This may be very helpful in arriving at the dose of medication that is the best for Atticus. So in a way, an ACTH could be win-win situation because you'd also have the opportunity for an additional piece of pretreatment diagnostic confirmation.

Definitely print out this article to show your vet, though, if you think you may consider treatment. As we say, it could save you a bundle of money on the monitoring costs.

Marianne

[nicole]

Well I managed to obtain Atticus's lab results. I will post them below :)

[nicole]

Well I managed to obtain Atticus's lab results. According to the interpretation portion it seems that Atticus did test positive. Now I just dunno if it was positive due to him actually being positive or if it was a false because he was stressed out. I probably will never know.

December 28, 2011

Cortisol sample 1: 7.4ug/dL
Cortisol sample 2 Dex: <0.7ug/dL
Cortisol sample 3 Dex: 1.6ug/dL
Lab comments: results verified.

Interpretation of the LDDS.
LDDS test normal: Cortisol level less than 1.4ug/dL 8hrs post-dex.
Hyperadrenacorticism: Cortisol level greater than 1.4ug/dL 8hrs post-dex.

If the 8hrs post-dex level is greater than 1.4ug/dL the following can be used to differentiate pituitary dependent hyperadrenacorticism (PDH) versus adrenal tumor (AT).
1. Cortisol level of less than 1.4ug/dL 4hrs post-dex is consistent with PDH.
2. Cortisol levels less than half the baseline level at either 4 or 8 hours post-dex is consistent with PDH.
If neither of these criteria is met further testing is needed to differentiate PDH from an adrenal tumor Cushings.
(Samples taken at either 2 or 6 hours are interpreted the same as a 4 hour sample)

NOTE: Approx. 5% of dogs will receive a false normal result even with having PDH. False positives may occur due to stress/non-adrenal illness.

HDDS: Use this test after hyperadrenacorticism is diagnosed.
PDH or AT: Cortisol level suppressed by less than 50% after 8hrs post-dex.
PDH only: Cortisol levels suppressed >50% 8hrs post-dex.

All of his urine tests came back negative, except that he does have crystals and above average levels of protein.

[nicole]

Also lately he's had diarrhea, keeps throwing up, just generally not seeming to feel good. I spoke to his vet Friday and she said to feed him a bland diet (ground beef/brown rice) until tomorrow and see how he is by Monday morning. I dunno if this has anything to do with the Cushings; or do you guys think he may just have some random un-related stomach yuck?

[Tina]

Hi Nicole,

I don't feel comfortable commenting on the lab results, others with more experience will be along to look at those. But did you mean for the date to be December 28, 2012 rather than 2011?

You didn't mention if Atticus is getting meds to treat Cushings? I ask because vomiting and diarrhea can be symptoms of the medication dose being too high, or the cortisol level being too low as a result of the meds. And how long has he been having vomiting and diarrhea?

Tina and Jasper

[nicole]

No the results are from 2011. He was diagnosed shortly after Christmas over a year ago, when he first exhibited signs of having SARDS as well.

Right now he is not undergoing any treatment. Unfortunately right now it's cost prohibitive, at least according to my vet. I could afford the medication on its own, but not necessarily the repeated monitoring bloodwork that is necessary for dosing. I have a Care Credit account, but the limit is nowhere near where it would need to be to facilitate treatment and get him on a steady track. At this point I'm just trying to keep him as comfy/happy as possible.

He's had the diarrhea since Friday (maybe late Thurs, it was tough to tell in the dark) and the vomiting only started yesterday. Like I said, my vet said give the bland diet a couple days to work, but if any emergencies arose definitely call them or the local 24 hour place. So far he seems better in spirits, and he's acting more playful...but he's still got the runs.

[Squirt's Mom]

MODERATOR NOTE: I have merged your post about the lab results into Atticus' original thread. We normally like to keep all posts about each pup in a single thread as it makes it easier for members to refer back to the pup's history when needed. Thanks!

[Tina]

Thanks for the additional information. It is a relief that the vomiting/diarrhea are not a Cushings medication issue. I know that in order for everyone to help, they will need more information about Atticus, such as the symptoms he was showing that led to the Cushings testing and diagnosis, his history, and any other lab results that he has had done.

Has he been diagnosed with SARDS? I know that those symptoms can mimick Cushings, and that the LDDS test can show false positives if there is any other non adrenal illness going on at the time of the test.

As far as the vomiting and diarrhea, the bland diet that you are feeding should help. My pup has issues with colitis, so I know that diet all too well. He may need an antibiotic in addition, so I would definitely check with your vet tomorrow. They can get dehydrated pretty quickly. Is he drinking water ok?

Tina and Jasper

[Tina]

I see where Leslie has added these posts to your original thread. Please disregard the request for any history information that you may have previously provided! :)

[nicole]

He has been diagnosed with SARDS. It was November of 2011 that he got his diagnosis of that and then December when he was diagnosed for sure with Cushings. The symptoms he was showing (and still is) is weight gain, excessive thirst and appetite, bumping into stuff (which is the SARDS), and now he's walking very stiffly, seeming to space out frequently, and just exhibit signs of not being "all there" anymore. I had him at the vet less than a month ago and my vet basically said it could be the early onset of "doggie dementia" because of the untreated Cushings. So my mother (always trying to help!) did some research and ordered him some supplements for it, but they've yet to arrive.

[Tina]

Sorry you had to repeat some of that, I didn't realize you had another thread going. :o

There is an illness called Canine Cognitive Dysfunction, which may be what your vet is referring to. You can google it and get all kinds of info. The medication Anipryl has been shown to be effective. Not sure how expensive it is, but you could look into it. For right now, I think the priority is getting the vomiting and diarrhea under control, because as I said, they can get dehydrated quickly, although it sounds like Atticus is drinking ok.

[Squirt's Mom]

Two things from your vet that strike me as odd -

First, it would cost no more today to treat the Cushing's than it would have earlier. Second, untreated Cushing's doesn't cause dementia that I know of. She may be talking about a macro tumor but again, not treating does not cause these tumors.

Also, a better bland diet would be white chicken meat and rice. Make sure the rice is not Minute Rice but real rice, overcooked to the consistency of a paste almost for easier digestion.

Just a couple of thoughts.
Hugs,
Leslie and the gang

[nicole]

Unfortunately Atti is sensitive to chicken (makes his skin flare up) so we try and stay away from that, but the ground beef and brown rice is seeming to be alright. He was just out recently and his poops looked better, but not totally normal. So yay for improvement.

I figured about the cost of treatment. I'm sure it hasn't changed. I was just explaining why I can't do it. I would love to be able to, but finances are just too tight right now. My job doesn't pay as much as I would like it to, so I just don't have the extra $1000+ (which is what I was quoted for the first 6 months of treatment and testing) to spend on vet bills. I have also heard that the trilostane doesn't necessarily prolong a dog's life anyway, it just treats the outward symptoms of the disease. But that was just from internet article-reading, not coming from my vet.

[molly muffin]

It could be a touch of pancreatis, but without a blood panel to test for it you wouldn't know for sure, or it could be some sort of bacterial infection. My dog had diarrhea very badly back in March of last year. (which is what led us down the road, once again of does she or doesn't she have cushings). Anyway, Molly was on the bland diet and then I switched her food from the SO (which she takes to encourage drinking water and prevent crystals, that she is prone too) and she was on antibiotics for over 3 weeks and what really helped too was a probiotic that I sprinkled on her food.
Yes, one reason you treat cushings is to control the symptoms. The other reason is to prevent damage to the internal organs that high cortisol can cause. Liver, kidneys, pancreas, etc.
A macro tumor can cause dementia type symptoms (as can Cognitive Dysfunction) as mentioned above.

http://www.vetinfo.com/canine-cognitive-dysfunction-syndrome.html

http://dogs.about.com/od/caninediseases/p/Dementia-In-Dogs-Canine-Cognitive-Dysfunction.htm

Sharlene and Molly Muffin