Papillon With Cushing's 2 1/2 years

[Lilypad]

Hi, I'm a new member and am struggling with taking my dog off trilostane and letting the disease run its course. I've spent $5000+ since diagnosis and am in debt over it. I've had my baby since birth and cry every day now over what to do. I'm a 74-year-old widow and am very sick myself. Hannah is almost 11 years old. Do I surrender her to someone that can afford to treat her or do I take her off the medicine and try to keep her comfortable to the end? How will it end? She's not stable on trilostane - she eats, then doesn't eat. One day she's perky and runs around and another day she trips and lays around all day. How long can she go without trilostane? What can I expect if I take her off the medicine? I welcome any information.

[Jonathan]

Others will come with better advice, I promise!
Im just here to tell you that you arent alone, and I understand the 'freakout' situation you are in.
- MY experience? The meds are not like an on/off switch.... meaning, the results/affects/doseage are more of a fine tuned thing.
- the goal is to keep an even keel... which is actually good, in some situations, money-wise. (there are times where your pup may need low doseage)
- my little girl went from as high as 60mg to 10mg if I remember correctly. (dont let the high cost of the beginnning 'suppression' get you flustered)
- disclaimer = Im looking at old boxes of meds I still have (a habit I formed as doseages changed over time)

[Kevin]

Sorry to hear about the challenges. Just throwing this out there-- have you explored different retail options for Vetoryl? Chewy seems considerably less expensive. And our Vet was initially charging us an exorbitant price for Vetoryl. We showed them the Chewy prices and they contacted the vendor and lowered the prices considerably. I think the 5=10mg got us down to $40-60/month or so. No clue what dosage you are using but just a thought. And we have a friend with a Cush Dog who found a Vet that will help financially strapped clients by managing Cushings symptoms without doing the constant testing(which is the big cost). They start out on small dosages and manage thru clinical signs.

Others will have more input I'm sure. Cushings can be very challenging and constantly throws us curveballs. We do the best we can and finances are a reality of it all.

[Joan2517]

Managing through just clinical signs can be dangerous. My Gable was peeing and drinking more and I almost raised his dose from 5mg a day to 10mg a day without testing. I decided to get him tested and his cortisol was so low that we had to stop the Vetoryl until his adrenal glands kicked back in. Turns out he was overstimulated on his thyroid medication, which caused the cortisol to drop too low. Testing is expensive, but necessary.

[Lilypad]

I have found an online pharmacy to get the best price on the trilostane so that is not the problem. The problem is the testing. I'm maxed out on my credit card and my income is just social security. I'm pretty much broke because of this. In 2 1/2 years we have not gone more than 3 mos without a test and this seems extreme. And my dog looks like shit inspite of the medication - big belly, terrible hair loss and now she is tripping on even a small step. Is it my Vet that doesn't know what she's doing or is it my dog's problem? I want to hear from people that have chosen not to medicate so I can be prepared. I'm 74 & not healthy & my gut is telling me to let go emotionally. I'd like to hear from other people that have reached this point.

[labblab]

Hello and welcome from me, too! I’m so glad that Jonathan, Kevin and Joan have already stopped by to share their thoughts and suggestions. For sure, I understand what a financial burden Cushing’s treatment can be. There may still be a few additional suggestions that might help in terms of cost. For instance, monitoring testing every three months is indeed the protocol that is recommended by the manufacturer of Vetoryl as well as clinicians who specialize in Cushing’s treatment. However, if your vet is performing ACTH stimulation tests every time, it’s possible she’d consider shifting to a less expensive method of monitoring that involves testing only the baseline cortisol level immediately prior to receiving the daily dose of Vetoryl on the day of the test. So that’s one example that we can talk more about later if you’re interested, since in terms of cost, it would fall between no testing at all vs. expensive ACTH testing.

But backing up a few steps, there are a few questions I need to ask you before I try to make many more suggestions. Can you tell us what symptoms and testing led to Hannah’s original Cushing’s diagnosis? Also, can you find out and give us the exact numbers for at least her most recent monitoring tests? If Hannah is not responding positively to the Vetoryl, our first two worries would be that perhaps Cushing’s is not the correct diagnosis, or if so, that she’s not taking the correct dose of the medication. Specifics about her testing and monitoring history can help clarify those questions.

While we await that info, I can offer out a few general thoughts. First and foremost, you’re wondering what will happen if you decide to stop treatment. In the short run, probably not a whole lot except for a rebound or worsening of the symptoms that led you to treat in the first place. Cushing’s is typically a slowly advancing disease. Most people start treating because of obvious overt symptoms such as excessive thirst/urination/hunger, panting, lethargy, fur loss, etc. Over time, however, systemic internal changes can also take place leading to one or more of the following: high blood pressure, kidney problems, vulnerability to infection and developing blood clots, increasing blood glucose levels, serious skin problems, etc. For younger dogs, I especially encourage treatment in order to slow the development and progression of one or more these more serious problems over time. For older dogs, I worry less about these slow chronic problems and more about immediate quality of life. I’d personally be prioritizing observable symptom relief for older dogs. And if the observable symptoms weren’t that troublesome for the older dog, I might not treat at all.

Under the right circumstances, I would hope that Hannah would still have several years ahead of her. But I also don’t know her history and whether she’s a “young” 11 or an “old” 11. As her mom, you know best how bothersome her symptoms have been, and remain even now under treatment. If we discover from her monitoring tests that her cortisol level has indeed been held within the therapeutic level but her symptoms remain, then we’ll all be scratching our heads. And in that situation, I really couldn’t argue with stopping the Vetoryl, at least temporarily, to see whether or not things worsen any further. Perhaps they wouldn’t.

OK, I’ll go ahead and close for now. But as I say, it’ll help us a lot if you can fill in some of the blanks about Hannah’s diagnosis and monitoring. Thanks in advance!

Marianne

[Lilypad]

I don't know what the exact cortisol numbers were this last time we tested; they were high but not bad the Vet said. Her numbers had stayed normal for a long time but she began to look depressed all the time, stopped eating, and lost weight. We had been increasing the dosage up to 20mg twice a day until she lost her appetite & weight. We dropped it down to 10 mg once a day and she ate better but did not regain the weight. She weighs 9.4 down from 10.4 when all this started. It started 3 mos after she had emergency stomach surgery for something she ate. When they did the surgery they messed up and didn't close the stomach well enough and had to go back in the next day and repair it. At the same time, they nicked her spleen and had to take it out. That was the local Pet Emergency Hospital and I should have sued them now looking back. She was beautiful and a very very young 11 year old. So the 20mg twice a day kept the numbers normal but was creating more & more side effects. It's just been recently that we dropped it to 10mg once a day and she became weaker, lost appetite, tripped more, and began to shake. So, it just seems like the side effects are there no matter the dose. She's had issues with liver enzymes, potassium & creatinine going up & down. She's never had diarrhea or vomiting. I haven't really made a mental note of what went out of wack with each trilostane dosage change because I figured the Vet knew what to do. She has had frequent ear infections but not chronic. She does have a heart murmur that went away when she went on trilostane. Her breathing sounds very labored to me. These issues were with us before cushings. I'm exhausted and feel like we're on a roller coaster not really making any headway. I feel like I need to let her go to someone that can pay for her care. But then I think she would be traumatized to be without me. Lately, there are many times when she won't take her medicine even though it's a flavored chew. I really struggle to get it into her a lots of times waste the pill trying.

[labblab]

Thanks so much for your quick reply, especially knowing how stressed out you must be feeling right now!! I very much appreciate this new info, but I apologize that I still have some remaining questions. I’m still not clear as to what her original symptoms were that led your vet to test for Cushing’s. Why did the vet think she had Cushing’s in the first place? And what was the timing compared to all the emergency surgery that she had? Since you’re not mentioning any of the most typical outward symptoms of Cushing’s, I’m still wondering about the accuracy of the original diagnosis.

Also, that’s quite a huge jump up-and-down in Vetoryl dosage. For a dog of Hannah’s weight, 40 mg. daily would be a *really* big dose!! And she may not even be able to handle the 10 mg. right now. She might actually *benefit* from a break from the Vetoryl altogether right now. It would help us so much if you could ask your vet to send you printed copies of all the monitoring test results, because that’s really what we need to know in order to determine whether or not she’s been overdosed or underdosed. Hannah would not feel well either way. Overdosing is much more serious, but if she is being underdosed, the medication won’t help control her symptoms. After paying for her tests, you’re entitled to printed copies of them all and your vet should provide them without any argument.

However, if you’ve got health problems of your own, I do understand that Hannah’s issues — including contacting the vet about the testing — just may feel like too much for you to try to cope with right now. I’m going to contact one of our staffers who’s had years of active involvement with rescue and foster groups. I’m hoping she may be able to offer you some guidance as to whether or not there may be some foster help for you and Hannah under these circumstances. It may be a day or two before she can join us, though, so in the meantime, I’d still really appreciate learning more about the reasons why Hannah was originally tested for Cushing’s. Thanks again for the info.

Marianne

P.S. I apologize for calling Hannah “Lily” in my posts — I’ve just now gone back to correct that and hopefully I caught all my errors!

[Kevin]

I agree 100%, Joan, that not testing isn't ideal.

[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/showthread.php?8565-Inappetence-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.

[Joan2517]

When Lena was taking the Vetoryl she became very picky. For a dog who loved her kibble and any other food, I had to jump through hoops to get her to eat so I could give her the pills. I made her scrambled eggs, oatmeal, lox or cream of wheat for breakfast, grilled cheese sandwiches, hamburgers, chicken or any kind of gourmet dog food I could find for dinner. She would like something once, then wouldn't eat it the next time. It was nerve-wracking trying to get her to eat.

Now that Gable is on the extra 5mg, he who always scoffed down his kibble, now just looks at it until I feed the little girls their wet dog food and give him his pills with a forkful of theirs. But he will eat any kind of people food like he's been starved. It is very challenging and we have to get very creative.

I feel your pain....

[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