Papillon With Cushing's 2 1/2 years

[labblab]

Hi all, I’m in kind of a reflective mood this morning, so decided to add these additional general thoughts of my own. Even though they’re not specific to Hannah, this seems like the right place to put them. Joan and Kevin, I think you *both* have good points to be made. Everybody keep in mind that I’m not a vet and the following are just my personal musings. But over the nearly twenty years now that trilostane has been used to treat canine Cushing’s, it frustrates me enormously that no truly ideal mode of monitoring testing has emerged.

For a long time, the ACTH was considered to be the gold standard, and probably still is by many clinicians. However, it’s always been recognized that there can be a definite disconnect between ACTH numerical results and the actual clinical picture that a dog presents. The numbers can look good, but the dog may not be looking so good him/herself. In recent years, the pre-pill baseline cortisol test has been advanced as a less expensive and perhaps even more accurate gauge of trilostane effect. However, I think it has shown its limitations, as well. Meaning that once again, the test results and the physical appearance/wellness of the dog may be inconsistent at times and the *best* method to monitor trilostane remains a big question mark.

I am not knowledgeable enough to understand how or why either form of cortisol testing may be missing the mark. Regardless, I totally agree with Joan that, imperfect as the testing may be, whenever possible it is much safer to test via one or the other method rather than to forgo testing altogether. However, since the testing isn’t perfect, we also need to be vigilant about using our eyes and our guts when it comes to our dogs. And — this is where Kevin comes in — I agree that there may be instances where an owner may opt to give trilostane a try even if testing isn’t an option. We all agree that isn’t ideal. But I might have found myself in exactly that situation myself, out of desperation to help my dog. He was so incapacitated by his Cushing’s symptoms that he had virtually no quality of life left. If the choice had been between euthanasia or giving unmonitored trilostane a try, I would have chosen the latter. Back in 2003 when he was treated, trilostane was not FDA approved nor available for purchase in the U.S. So I ended up importing the human version of the medication from the U.K. and my dog became the first trilostane patient for my specialist. People here who are familiar with my Barkis’ story know that things didn’t end up as we had wished. We were lucky that we could pay for all the monitoring testing. But still, he was an example of a misfit between the monitoring test results (which were good) and the clinical results (which ended up being not so good). Our assumption remains that his decline was due to an expanding pituitary Macroadenoma and not due to ill effects from over-medication. But I’ll truly never know for sure.

What I do know is that treating him with the trilostane seemed to be our best hope at the time, and I nearly broke my leg running to the mailbox to claim his first shipment when it arrived from England. Had I not been able to afford the testing, I would have shouldered the risk of starting at a low dose even without the benefit of testing. That’s how uncomfortable he was. I would have shouldered that risk. Definitely not ideal, but sometimes you gotta do what you gotta do.

So those are my thoughts for today, probably worth little more than two cents! But there you have it. And God bless all our babies who bravely struggle each day to conquer this disease…

Marianne

[Kevin]

Thanks Marianne. I don't always articulate things well but thats exactly what I was inferring.

Unfortunately, Veterinary care is about compromise (life, actually) and the ideal isn't always attainable. I looked at this scenario as an either or dilemma. Would love for every Dog to get the recommended protocol for sure.

But for financially strapped people with a flexible vet willing to start on a light dose of Trilostane while watching for any signs of Addisons vs. doing nothing at all? I'd do it.
Just my opinion. Doesn't mean its right. I would say this... at minimum an owner should have a diagnosis of Cushings so would not flex on that.

Unfortunately, I think Lilypad may have some other stuff going on here. I'm a bit biased due to what we have going but any symptoms like not eating well or anything neurological hint towards the Adenoma growing. The scenario here sounds eerily familiar. Unfortunately, the only way to confirm is more costly testing thru MRIs and CT scans. There's just no way around this for a truly definitive answer.

thanks

[labblab]

Kevin, I agree with you about wondering whether Cushing’s may be a misdiagnosis or not the most pressing issue in Hannah’s case. That’s why I’m so anxious to find out whether she has ever exhibited any of the classic observable Cushing’s symptoms such as excessive hunger/thirst/urination, either before or after Vetoryl. I’m always uneasy if a Cushing’s diagnosis is based solely on lab abnormalities such as elevated liver enzymes, since other conditions can produce those elevations as well. And of course I also understand your worry about a Macroadenoma :-(. So I’ll stay patient, though, and wait to see what more Lilypad can tell us as to how things have developed.

(And I think you say things very well.)

[Lilypad]

Ok, now I have 20 pages of labs and I really don't know what they mean. I didn't ask for notes so I hope you can help me understand. I also am feeling I need a second opinion but don't know who to go to. I am in Kalispell, MT zip 59901, can anyone make a suggestion? These are Hannah's last labs: Sept 10(2021)T4 low but normal, TSH normal, BUN is high, Phosphorus is high, Cholesterol is high, ALT borderline high, ALP & GGT both are high, Potassium is high, Creatinine is normal. Let me know if it sounds like I'm not reading these right: Sept 10(2021) pre 5.6 on a range of 1.0-6.0, gave .17mls cosyntropin, 4hr post is 7.2. July 30(2021) pre 14.9 & post 14.0 (Vet stopped trilostane) June 17(2021) pre 3.9 post 4.1, May 18(2021) pre 3.7 & post 5.8, Feb 19(2021) pre 2.6 post 4.7, Oct 9(2020) pre 3.7 & post 3.9. Note at this point says trilostane 20mg two times a day. Going back to the diagnosis readings April(2020) pre 11.0 post >30.0. I remember the Vet saying that was higher than her machine could read. To answer your question about what prompted the diagnosis: I was taking her to the Vet for a follow-up 2-3 mos after the surgeries to make sure all was well. I just happened to mention she was drinking a lot of water and both losing hair and not growing hair back from when they shaved her for surgery (12/2019). Does this make any sense?

[Lilypad]

I have wondered if the diagnosis is truly Cushing's. Hannah has some breathing issues that started before Cushing's - just sounds like her breathing is labored all the time. She reverse sneezes all day every day and sneezes normally very often. She also has a heart murmur that she had before Cushing's also, but that's been silent since she's been on trilostane. She has ear infections often that go back about 5 years. Until the surgeries (12/2020) she was a happy, peppy, beautiful, and fairly healthy dog. These lab sheets don't say what the doses of trilostane were each time we tested but we started very low and increased very small amounts but it seems like it all of a sudden became too much. The last dosage per Vet was 5mg twice a day but I have taken her off of it hoping she will get an appetite.

[labblab]

Thank you soooooooooo much for getting this info!! And yes, we can help you make some sense of it, although I’m afraid it will be tomorrow before I’ll have a chance to look it over and return with a reply myself. But thanks again for gathering these reports!

Marianne

[Lilypad]

Real quick if you can, Hannah won't eat. If I mix her food with some plain canned pumpkin she will eat better. Is this okay?

[labblab]

I believe that plain canned pumpkin is fine to give dogs — in fact, I’ve often seen folks recommend giving a small amount to help firm stools when diarrhea is a problem. My only worry would be that giving too much pumpkin could actually encourage diarrhea due to the high fiber content. But I surely understand how important it is to get Hannah to eat at all — been there and suffered through that :-((((.

So if a little pumpkin will get her to eat, I’d say go for it. Also, for what it’s worth, here’s a thread here that gives other suggestions for tempting picky dogs to eat:

https://www.k9cushings.com/forum/sho...etence-in-dogs

Given Hannah’s lack of appetite, I agree with you 100% regarding totally holding off on giving her any more Vetoryl at all for now.

Good luck with her food!
Marianne

[Lilypad]

So last night I gave Hannah her crunchie food with about a teaspoon of pumpkin warmed up. She ate the whole thing (she hadn't eaten all day). Now it's the next morning and I fixed the same thing and she won't eat. She's 10# and drinking about 1 cup of water daily fairly consistently. Still not giving her any trilostane. I have an appointment with a different Vet next week for another opinion. Called several around town and they all say they have experience with Cushing's. Youtube videos tell me no Vet has this disease down pat!! Right now Hannah's only negative symptoms are not eating and seeming tired. A little weakness in the back legs too. No panting, vomiting, or diarrhea. The highest dose she was on was 20mg twice a day and that's when she stopped eating and began tripping.

[labblab]

Ok, now I have 20 pages of labs and I really don't know what they mean. I didn't ask for notes so I hope you can help me understand. I also am feeling I need a second opinion but don't know who to go to. I am in Kalispell, MT zip 59901, can anyone make a suggestion? These are Hannah's last labs: Sept 10(2021)T4 low but normal, TSH normal, BUN is high, Phosphorus is high, Cholesterol is high, ALT borderline high, ALP & GGT both are high, Potassium is high, Creatinine is normal. Let me know if it sounds like I'm not reading these right: Sept 10(2021) pre 5.6 on a range of 1.0-6.0, gave .17mls cosyntropin, 4hr post is 7.2. July 30(2021) pre 14.9 & post 14.0 (Vet stopped trilostane) June 17(2021) pre 3.9 post 4.1, May 18(2021) pre 3.7 & post 5.8, Feb 19(2021) pre 2.6 post 4.7, Oct 9(2020) pre 3.7 & post 3.9. Note at this point says trilostane 20mg two times a day. Going back to the diagnosis readings April(2020) pre 11.0 post >30.0. I remember the Vet saying that was higher thaher machine could read. To answer your question about what prompted the diagnosis: I was taking her to the Vet for a follow-up 2-3 mos after the surgeries to make sure all was well. I just happened to mention she was drinking a lot of water and both losing hair and not growing hair back from when they shaved her for surgery (12/2019). Does this make any sense?

OK, I’m finally back again (sorry for the delay!). Thanks again for all this information. First of all, I’m really glad to hear that you have the vet consultation scheduled for next week — it can never hurt to have a fresh pair of eyes looking things over. As far as Hannah’s monitoring ACTH tests, we now see that it doesn’t appear as though her cortisol has dropped too low and in fact, the post-ACTH readings are all within therapeutic range except for when the Vetoryl was discontinued. So this where we start scratching our heads and why it’ll be good to hear what the new vet has to say. There is one oddity about the notation for the most recent ACTH, though: it says the post-cosyntropin reading was taken *four* hours after the injection, and the protocol with which we’re familiar involves checking the cortisol level *one* hour after the injection. So I’m glad another vet will be reviewing those reports.

Also, for dogs taking Vetoryl, the cortisol level is only part of the monitoring picture. Vetoryl can also affect the balance of sodium and potassium in the body. I see that Hannah’s potassium level is high, although without seeing the number, I don’t know whether it’s far out of range. As far as her other elevations, several of them could indeed be caused by Cushing’s; the high BUN and phosphorus could reflect some kidney issues, though. Given this whole pattern of abnormalities, again, I’m really glad that another vet will be able to help sort through them with you, especially given Hannah’s poor appetite. Imbalances in blood chemistries and kidney issues could all contribute to inappetence.

Last but not least, turning to the original diagnosis, it does look as though Hannah’s initial diagnostic ACTH was highly elevated which is consistent with Cushing’s. Also, excessive thirst and fur loss are common Cushing’s symptoms. However, the aspect of Hannah’s history that nags at me is the fact that you say she was perfectly fine prior to the stomach surgery and removal of her spleen. It was only afterwards that these issues presented themselves and the testing was done. Any bodily illness or stress — not just Cushing’s — can elevate cortisol levels on ACTH tests. So in my own mind, since the testing was performed just a couple of months post-op, I wonder whether her symptoms and the testing abnormalities may have reflected some lingering post-surgical issues rather than Cushing’s. I just dunno.

The bottom line is that I’d continue to withhold the Vetoryl entirely until you see the new vet. I’m really hoping he/she can either confirm your original vet’s thoughts about all this, or instead open some new pathways forward. Do hang in there in the meantime, and let us know how Hannah continues to do, OK?

Marianne