Bad effects from Vetoryl

[Eve]

Zimmy, my 11-year-old cockapoo, was diagnosed with Cushings a few months ago. He seemed to do ok on Vetoryl for two months but started losing his appetite and ability to go down stairs a few weeks ago. Yet, doc still wanted to raise his dose after seeing ACTH results. But didn't after I flagged concerns about his waning appetite.

Then, he stopped eating anything, vomited, had diarrhea, and was hospitalized for a few days. The med was stopped and he had a series of tests. High calcium score in his blood but ultrasound showed no significant irregularities. Waiting for results of parathyroid test which vet is guessing may be the problem since she argues that he was fine on Vetoryl for a few months.

Does anyone know if the bad effects of Vetoryl can be cumulative? Vet told me to start him on the drug again while we wait for parathyroid results...and the next day he vomited, had diarrhea, and stopped eating. The answer seems obvious that it's a bad reaction to the drug now although possibly the parathyroid is making it worse. I'm gradually getting him to eat a little as the drug leaves his system -- same as the first time he crashed.

Haven't decided how to resume Cushings care. Options are to try dividing up his current 30mg dose into the morning and afternoon to see if he'll tolerate it better. Or to simply see if he will tolerate a lower dose. Any advice?

[labblab]

Hello, and welcome to you and Zimmy, although I’m surely sorry that he’s doing so poorly! To cut to the bottom line, I’m absolutely stunned that your vet would instruct you to restart the Vetoryl while Zimmy has been so ill. Without knowing specific test numbers, we cannot judge whether or not his cortisol level was in proper range when he was tested earlier, or whether it is in proper range now. I sincerely hope that an ACTH test was done in conjunction with this hospitalization in order to ensure that low cortisol is not contributing to his problems. Regardless, it is never wise to give trilostane to a dog who is acutely unwell.

Can you tell us what symptoms and testing led to the Cushing’s diagnosis in the first place? Also, if you can get copies of the actual test reports, that will be great. Right now, we’re especially wondering about the monitoring ACTHs since beginning treatment, and any abnormalities from this recent hospitalization. Thanks in advance for any additional information, and we’ll be hoping Zimmy soon feels better. But for now — NO! — I wouldn’t restart the Vetoryl at any dose.

Marianne

[Eve]

My confidence in this vet has plummeted and I will be switching to one of the partners at the animal hospital who have offered what seems like sounder advice while he was hospitalized. First, I'll wait for the results of the parathyroid to see if she may have been on to something. He was much better when she told me to restart the Vetoryl but not 100% and it was only 2 days after he left the hospital.

First symptoms: Zimmy started gulping water and peeing a lot. Vet took him through a lot of tests to rule out diabetes, UTIs, kidney stones, etc. ACTH test revealed Cushing's (although sorry, don't have the numbers with me). After diagnosis, I also noticed that his hair was starting to thin a little at the end of his back, also consistent with Cushing's.

He started Trylostane at what the vet considered a low dose. At a second check two months later, he was borderline with needing a dose increase, she said. But since I said his appetite was compromised, she kept him at the same level. The next week, he declined and stopped eating anything and the diarrhea and vomiting started. So the last ACTH test he had was suggesting he needed a higher dose than 30 mg (he was 29.5 pounds and is now 26.3 after being sick) but not in a definitive way.

For now he's on med for stomach upset. He's eating a small amount now and his energy for walking has returned. Once I get the parathyroid results, I'll talk/switch to the other vet who advised that taking the med twice a day (smaller doses) often enabled dogs to tolerate the med better in her experience. Other vets monitoring him during hospitalization also thought med side effects were the likely cause of his decline. Can't figure why this primary vet for now is so vehement that it's not the Vetoryl -- except that she may be inexperienced with Cushing's. From now on, I trust my instinct.

Thanks for the feedback.

[labblab]

I just now read a bit about hyperparathyroidism, and wow, it does indeed sound like a possibility. That may actually be Zimmy’s problem as opposed to Cushing’s. If so, I can imagine that the Vetoryl may have further disrupted certain abnormalities in his blood chemistries, leading to his acute illness. Now more than ever, I would not restart the Vetoryl until all of this gets better sorted out. Cushing’s is a very slowly developing disease, and typically there is no urgency as far as rushing into treatment.

Also, I do want to point out that diagnostic ACTH tests can return “false positives” for Cushing’s when a dog is suffering from bodily stress caused by other nonadrenal illnesses or injuries. This is why it’s important to rule out other possible causative factors before settling on Cushing’s as the diagnosis. Since Zimmy’s only outward symptoms were the excessive thirst/urination and a bit of thinning hair, he’s not really a “poster child” for Cushing’s as far as presentation. Many other typical Cushing’s symptoms seem to be absent. So truly, I’d hold off on restarting the Vetoryl while you and the new vet reconsider the situation and your options.

Please do keep us updated!
Marianne

[alleng8304]

I agree with everything Marianne said. I would under no circumstance restart Vetroyl until you know his Acth stim results. Hyperparathyroidism may be an issue. I had a similar experience with my dog Ollie. Since the dose of Vetroyl is 1 mg per pound we titrated him up to 15 mg and he went into Addisons. (Opposite of Cushings) Stopped eating, drinking more ,diarrhea etc.
We used Nutrical rubbed into his gums (vits and minerals) and a special canned dog food to get him to eat-it worked. You mention possible diabetes-did vet do glucose with chem profile? Vetroyl can help. I have had three poodle mixes and one terrier-all of which developed Cushings later in life and the Vetroyl kept Cushings under control but for a small dog we never went over 5 mg. (except the Terrier) The Vetroyl works by shutting down the adrenals over time in an effort to regulate the cortisol. If your instinct is to switch vets then I would do it

[Harley PoMMom]

The Vetroyl works by shutting down the adrenals over time in an effort to regulate the cortisol. If your instinct is to switch vets then I would do it

Trilostane, which is the active ingredient in Vetoryl, reduces the amount of cortisol production (and to a lesser extent, aldosterone) by inhibiting 3 -hydroxysteroid dehydrogenase in the adrenal cortex, and ideally this is the way we want it to work, by just reducing the cortisol production. However hypoadrenocorticism ("Addisonian crisis") can develop at any dose of Trilostane but we usually only see this when the proper protocols are not followed.

[Eve]

The results came back today. Yes, Zimmy has primary hyperparathyroidism. It's still to be decided whether he also has Cushing's or whether the other disorder mimicked Cushing's. So, one disorder or two? Instructions are to stop the Vetoryl and get a surgical consult -- an internal medicine expert who can also help to determine if he also has Cushing's. If he has Cushing's, I'll certainly be back in the forum. If not, people here should be aware that hyperparathyroidism has similar symptoms. For instance, Zimmy's responded well to the Vetoryl for several months (lowered his high cortisol)-- until he lost his appetite.

[Eve]

Yes, Zimmy was found to have hyperparathyroidism today. He'll need further analysis to determine whether that replaces the Cushing's diagnosis or whether he has both. A surgical consult is the next step. No, he doesn't have diabetes.

I'll keep the Nutrical idea in mind if his food intake doesn't improve. He ate a little more tonight but still very limited -- cooked ground turkey or chicken when he feels like it and a few treats. The doc prescribed an antacid so that might be helping. Thanks for weighing in.

[labblab]

Wow, thank goodness the vet realized that parathyroidism was a possibility! I would guess that the internist will be putting Cushing’s totally on the back burner until the parathyroidism is resolved. I just don’t think there’s any way in which symptoms or Cushing’s tests can be evaluated accurately until Zimmy is otherwise stable. But we shall see. And please do feel free to return to us at any time to update us re: the parathyroidism. You both are part of our family now, and your experiences may definitely help guide us should a similar issue arise for another member.

Good luck as you move forward with all this!
Marianne

[Harley PoMMom]

Yes, please do keep us updated, and wishing you both the best of luck.

[Eve]

It is getting terribly complicated! Surgeons who perform the required hyperparathyroid surgery are scarce. And then, several have told me that I need a consult from an internal medicine specialist about the Cushing's before I get the surgical consult. Seems excessive to me. And worse, one internal med specialist followed up with me on the phone and said I needed an endocrinologist -- that determining whether Zimmy has Cushing's would be beyond her expertise. But I'm thinking as you suggested. Maybe test for Cushing's again *after* the parathyroidism gets resolved. That said, I'm not totally sure yet that I will get the surgery -- estimates from $3000-$6000 so far. It has a high rate of success but I need to hear all the "what ifs" before I decide whether it is worth it. And if Zimmy has a dual diagnosis, I may be less inclined to treat both conditions at his age.

I will probably go to one of the two surgeons who aren't requiring an internal med consult first. Seems to me that a good surgeon will have plenty of contacts and should do that second consult on his/her own. I also found the contact of a leading canine endocrinologist in NY if the surgeon needs an extra consult. All his ACTH tests seemed to demonstrate Cushing's as did his response to the Vetoryl so it is admittedly tricky.

[Eve]

Has anyone gone to a canine endocrinologist? I was told by an internal medicine specialist today on the phone that evaluating whether my dog's Cushing's diagnosis is a false positive and is related to his recently diagnosed hyperparathyroidism was beyond her expertise. (My current vet hospital does not treat hyperparathyroidism so sent me elsewhere, saying they weren't sure about the Cushing's now either).

The puzzle is whether he has both Hyperparathyroidism and Cushing's, or just the former. My dog is off the Vetoryl while all this is being sorted out. I'd like to get a surgical consult about the hyperparathyroidism since that seems certain and like a bigger problem than Cushing's.

But some clinics are saying the possible Cushing's diagnosis has to be cleared up first. Do I need to find an endocrinologist to figure this out? If so, does anyone know of such a specialist in the Washington DC or Baltimore MD areas?

My gut feeling is that I should be able to consult with a surgeon -- forwarding the records of the ACTH tests, etc. -- and the surgeon should discuss the Cushing particulars with internal med colleagues on the staff as needed.

For the record, Zimmy, age 11, was being treated with Vetoryl for the past few months. ACTH tests showed him responding favorably to the med and his water-gulping and increased urination ceased as well. But then he lost his appetite and vomiting, diarrhea, weakness ensued. I'm now wondering if that could have been Addison's, the possible result of a false positive treatment for Cushing's?

In any case, a slew of scans and tests were ordered, including-- bingo -- the one for hyperparathyroidism, based on his elevated calcium level. And whaddyaknow, symptoms of hyperparathyroidism can include excessive thirst and urination, muscle weakness -- just like Cushing's.

[labblab]

Hi Eve,

Normally, we try to keep all posts related to a dog consolidated within one single thread. With that in mind, in a few days we’ll probably merge this thread into your original thread about Zimmy. However, I’m temporarily leaving it “be” in order to see whether it garners you help in finding an endocrinology referral.

In that vein, here’s one suggestion for you that may or may not prove to be helpful. But I’m going to direct you to the website of a veterinary consultation service headed by Dr. David Bruyette. Dr. Bruyette is a noted internist/endocrinologist who formerly directed services at the VCA hospital in West Los Angeles, is an expert on canine Cushing’s, has been a consultant with Dechra re: clinical use of Vetoryl, and helped pioneer surgical intervention on enlarging pituitary tumors here in the U.S. Last but not least, at one time he was a contributor to this forum. While serving as medical director at VCA, he was surprisingly receptive to directly fielding email questions from our members. Now that he is immersed in developing his new service, I don’t know whether he has as much time available. But you’d have nothing to lose by contacting him in order to see whether or not he could help guide you in terms of Zimmy’s care.

His new service is designed to be utilized by vets. But in a situation like this, he might allow you to personally contract for some assistance. Or at the very least, I feel certain that he could recommend an endocrinologist in your area. So take a look at the website, and see what you think. If you do decide to contact him, be sure to tell him you’re a member of our forum. Here’s the homepage for his service:

https://www.veterinarydiagnosticinvestigation.com/

And here’s Dr. Bruyette’s email address: DaveBruyette@veterinarydiagnosticinvestigation.com

Good luck!
Marianne

[Eve]

Marianne,
This is excellent. I would be happy to pay a one-time consult fee if needed and if he can do it without a physical exam. I will contact him and see if he wants to work with me directly or whether he wants to work with the yet-to-be chosen vet I'll consult with about hyperparathyroid surgery. I will email him before I even make that decision to see if he has a local recommendation or knows anything about the surgeons I'm considering so far.

This is a good start. Meanwhile I'm wondering if Zimmy's recent crash could have been Addison's or that his last ACTH test was done incorrectly. The consult should answer some of these questions. This is all water under the dam since he is gradually eating more and getting back to himself since stopping the trilostane. And I'd already decided not to go back to this vet for a variety of reasons. I think it's curious that the vet he was seeing didn't refer me to an internal medicine specialist at the large hospital practice... and wondering if she is covering up a mistake either about the Cushing's diagnosis or that Addison's was the cause of his recent decline or just poor judgment about starting him on trilostane again so soon after his crisis. I imagine the independent consult will help answer these questions. I was debating whether he needed such a specialist but I'm starting to be convinced it is necessary. From reading messages in this forum, it's evident that a lot of vets do not understand Cushing's.

[Harley PoMMom]

Ryan Veterinary Hospital in Philadelphia PA is definitely my 1st pick but I realize that's a huge distance from you. My GP referred me to Dr. Dan Petrus from the Atlantic Veterinary Internal Medicine & Oncology in Towson MD, phone# (410) 828-0911, their website: https://avim.us/meet-our-specialists/

[Eve]

Thank you! I lived in Philly for 30 years and still visit often so that is not out of the question.

I came across Dan Petrus in my research as well and called that clinic. While they could give me an Internal Med consult, no one there performs the hyperparathyroid surgery. In fact, I am finding it's so specialized that most vet surgeons do not do it.

I have found a few options, though, that I am considering. I might go for the consult with the doctor that Marianne suggested first and then follow up with one of those surgeons or someone he recommends. But I was impressed with Dr. Petrus' credentials and reviews so could also see him for the IM consult if it's important that Zimmy be examined.

It seems crazy to get two consults but I can see how a surgeon isn't the best professional to sort through the endocrine issues since this is not just about surgery.

[Eve]

Marianne, I contacted Dr. Bruyette today and mentioned you referred me from the forum.

In a few hours, he replied and agreed to review Zimmy's tests. I feel relieved already that an expert will weigh in. It's easy to get names/numbers of area vets who have been reviewed well online, but it's so much better to get a personal recommendation from a knowledgeable source. So, thanks again.

[Eve]

Marianne, can't thank you enough for recommending Dr. Bruyette for a consult. He was prompt, knowledgeable, to-the-point, and his assessment sounds exactly right. For those who were following the saga, you can read Dr. Bruyette's thoughts here:

1) Zimmy has primary hyperparathyroidism.
2) I am not sure about Cushing’s. Its hard because many of the symptoms may be due to the high Ca rather than the high cortisol. The ACTH stim test and LDDS can give false positives in the face of non-adrenal illness. The abdominal US shows plump adrenals and that is consistent with Cushing’s. However the alkaline phosphatase is normal which is very odd for Cushing’s.
3) He does appear to have an adverse reaction to trilostane but I think its a GI problem rather than due to low cortisol.
4) I would hold off on any additional treatment and diagnostics for Cushing’s and treat the parathyroid problem.
5) A month or so after the surgery and the Ca is has been normalized I would do a LDDS if clinical signs of Cushing’s are still present.
______
I guess this confirms that Zimmy's vet is not an idiot for not knowing whether he has Cushing's or not. It will be easier to make a decision about surgery, too, knowing that Zimmy may not have a dual-diagnosis. Estimates I've been getting for surgery are $3,000-$6,000, however, so I have a lot to think about.

[labblab]

Eve, I’m so glad that Dr. Bruyette worked out for you! He has been so incredibly prompt and generous in sharing his thoughts with our members through the years. I’m very pleased and relieved to know this is still the case. And now, at this point, I’m gonna go ahead and merge this thread into Zimmy’s original thread so that we can keep on following your journey. Please keep us updated, Cushing’s or not!! I surely understand why the surgery may be a very hard decision to make due to both expense and risk. Just because a medical procedure is available does not necessarily mean it’s the best choice for any given dog (or person). There can be a lot of variables to consider and weigh. So if we can help you by bring a sounding board, we will be right here by your side.

Marianne

[Harley PoMMom]

So happy that Dr. Bruyette replied back to you and thank you so much for sharing his response with us!

[Eve]

If I could be sure that Zimmy didn't have Cushing's, I could rationalize that the money I'd invest in that care could go into the surgery. But alas, I'll have to take my chances if I move forward with surgery. Hopefully, the right decision will be clearer after I learn more at the surgery consult. I need to find out more about the progression of hyperparathyroidism among other things as well as the surgical risks.

[Eve]

Dr. B recommended a surgery practice that partners with the IM doctor you recommended. So vetted, so to speak!
Thanks for your input.

[AngieB]

Hi Eve,

I'm wondering what happened re: the surgery consult for Zimmy. My dog Yogi has some similar characteristics and the forum recommended Dr. B may provide a helpful consult for me as well.

Angie

[Eve]

The endocrinologist and the surgeon I consulted both think it's a no-brainer to get the parathyroid surgery because it is low risk and high success. That said, it is expensive for an 11-year-old dog ($3000-$5000) plus a $275 ultrasound beforehand. Nor is there any certainty the condition would progress to the point it did damage.

For now, Zimmy is great and not experiencing symptoms. The surgeon said his calcium level had not reached a dangerous level and couldn't say how fast or how slow that could happen. So, I've decided to sit tight for now until symptoms resume or a blood test shows the condition is progressing. I'm not ruling out surgery because treating the fallout of the condition (ongoing kidney and bladder stones, ER visits for renal failure) could end up being more expensive than the surgery.

[Eve]

By the way, the surgery I discussed is for "hyperparathyroidism" -- not Cushing's disease.

It is still not clear whether that condition replaces the Cushing's diagnosis or it is in addition to it.

What's odd is that since Zimmy was taken off the trilostane, his original presenting symptoms have not come back. The excessive drinking and peeing he was experiencing are signs of both hyperparathyroidism and Cushing's. Dr. B said he can't determine whether he has Cushing's until the other disorder is treated.

[labblab]

Thank you so much for your update. I think your current strategy makes a lot of sense, and I’ll surely be hoping that Zimmy remains stable now for a long, long time!

Marianne

[Eve]

If I had to guess now, I'd say that Zimmy does have Cushing's in addition to the other condition. Clues: his hair has barely grown back from being shaved for the ultrasound and the IV on his leg 5 weeks ago, plus the hair on his lower back is a little thin. I see him panting at times and sometimes ravenous for food in a way he wasn't before. Another behavior change: he's more territorial. What's really strange is that his original presenting symptoms that were pronounced -- excessive drinking/peeing/accidents in house -- have not returned since he went off the trilostane in July.

I'm noting all these things now and will go back to the vet if I see more decisive signs of a problem. But since he has had a bad reaction to trilostane, I'm wondering what can be done. Would it be safe to halve his previous dose? When he had the bad reaction to the medicine, it wasn't because the dose was too high, going by the ACTH test. Or are their alternative treatments people have used which might not be as effective but have some value?

I'm also wondering what I will do with 59 Vetoryl capsules worth $130 or so if I don't use them. Can the capsules be compounded into a lower dose if the vet thinks we should try it? Do you know if local shelters accept that type of donation?

[Harley PoMMom]

Could you post those monitoring ACTH stimulation test results? If we know what his cortisol levels were we'd be able to give you our best possible advice regarding the possibility of restarting the Vetoryl.

A compounding pharmacy may be able to reconstitute those unused Vetoryl capsules, is there one in your area that you could call and ask? And I do believe some shelters will take the unused medication, I'm pretty sure we have had members do this before.

Lori

[Eve]

Dr. Bruyette saw the ACTH results and said it was impossible to determine if Zimmy has Cushing's until the hyperparathyroid surgery is performed since some of the pathology overlaps. His results were mixed. He said that if clinical symptoms cropped up following the surgery, that would be the sign he has Cushing's, too.

If I observe definitive and worsening symptoms that are only related to Cushing's, however, I'll talk to the vet about trying a much smaller dose of trilostane or an alternative treatment. Until then, I'm going to sit tight since Zimmy is energetic and eating well again. (He had lost his appetite and become weak in addition to vomiting and diarrhea from the proper dose of trilostane). And I don't plan on doing the surgery for the other condition unless his calcium level rises to a more dangerous level.

Thanks for the heads up that it may be possible to compound Vetoryl capsules or that a shelter might accept them. For now, I'm holding on to them in case a Cushing's diagnosis becomes definitive.

[Harley PoMMom]

I'm not sure if you have seen the thread we have on other medications that are being looked into for the treatment of Cushing's so I'll attach a link to it: http://www.k9cushings.com/forum/showthread.php?8551-Cabergoline-Retinoic-Acid-and-other-novel-pituitary-Cushing-s-treatments

I'm glad to hear that Zimmy is doing well and hope it continues.

Lori

[Eve]

Thanks, Lori, I hadn't seen that. Are any of the non-Rx products on the market for Cushing's helpful, or just hoaxes?
Since Zimmy had to be hospitalized for his trilostane side effects, I will be nervous about restarting him on even a tiny dose if it proven he has Cushing's.

[Harley PoMMom]

Unfortunately I don't know of any truly effective holistic/alternate substitutes to the Rx medication when one wants to lower cortisol levels significantly. Having said that, if clinical symptoms are not that bothersome to the dog or owner, some members have told us that Cushex and Adrenal Harmony Gold worked very well in controlling symptoms but only for a short time period. Now, Cushex and Adrenal Harmony Gold have no controlled clinical testing whatsoever to back up their claims (we know this because we have contacted the manufacturers and we have been told that no testing has been done).

If symptoms rebound and Zimmy still weighs around 26 lbs you could start at a really low dose of Vetoryl say like 5mg or 10mg.

Lori

[Eve]

Hi Lori, I'm back!
Zimmy's symptoms miraculously went into remission after he was hospitalized and I stopped the trilostane last summer. Plus he was diagnosed with hyperparathyroidism so no one was sure if he had Cushings. Fast track to 2019. Zimmy started gulping water and peeing excessively again this spring. I took him to an internal med vet this time who determined he has both Cushing's (because the Vetoryl did lower his cortisol) and Hyperparathyroidism. So, we are going to try exactly what you suggested -- 5mg and if he tolerates it, add another 5mg at another meal. (Splitting the dose is advised if there are side effects--which previous vet never recommended).

Anyone else here with a combo Cushings and Hyperparathyroid problem? I've been holding off on surgery for the latter and had luck lowering Zimmy's high calcium level with Fosamax, recommended by the new vet.

[Harley PoMMom]

Since Dr. Bruyette said he couldn't determine whether Zimmy has Cushing's until the hyperparathyroidism is treated, how did the IMS determine that Zimmy does have Cushing's?

[Eve]

One important factor had been overlooked. While Zimmy had a toxic reaction to the trilostane, it was still effective in lowering his cortisol and eliminating his primary symptom of excessive drinking and peeing. My current vet said that Zimmy would not have responded that way if the symptoms were being caused by hyperparathyroid disease.

[reggiedog]

Hi Eve

I hope you don't mind me asking, but how did your vet diagnose hyperparathyroidism? Via an ultrasound?

My dog also had a poor reaction to trilostane (but it also effective in lowing her cortisol and eliminating some of the Cushing’s symptoms) and reading through your thread it seems like my dog could also have the hyperparathyroidism / Cushing’s combo.

Thanks

Reggie’s mumma