Vet wants to stop taking Trilostane

[buddysmom]

My 11 year old basset/beagle has had cushings for 2 years and has been doing quite well on 60ml of Trilostane. I took him for his regular 6 month ACTH test and they said his number was very low indicating he was getting too much medication so he was reduced down to 30ml. I just got him re-tested after 2 weeks at 30ml and he is still getting too much medication. The vet wants him off the Trilostane all together and is going to talk to an endrocronologist (sp?) to see what he recommends for a possible hormone supplement. Has any one else experienced this? My poor Buddy seemed to be just fine until he had his ACTH test, now that we are messing with his dosage he is hungrier and more thirsty, it's as if the ACTH test results are actually making him worse. I'm so frustrated. Any advice?

So it has only been a week since we stopped Buddy's Trilostane and his symptoms are back, he is drinking bowls of water and is crying/begging when we eat because he is so hungry.

The vet said his numbers from both the ACTH tests were so low they came back as un-measurable on both 12/4 when he was on 60ml and on 12/18 when he was on 30ml.

She spoke to an endocronologist (sp?) a Dr. Nicholas who she said is well known nationwide (has anyone heard of him??) and is "the man" when it comes to Cushings. He said Buddy is A typical whereas his numbers are very low but he may still show symptoms. He suggested taking him off Trilostane, watch his symptoms and to do a ACTH in 3 months. Which I was comfortable with BUT he has been drinking a TON water the past few days which making me nervous and waiting 3 months seems far too a long time to wait to check him again. The vet did say there was a medication she could give him to reduce his thirst, but I worry about side effects. Has anyone else given there dogs meds to reduce thirst temporarily until they could be tested again? I am so frustrated that his numbers are competely showing a different picture than what I see in him.

[frijole]

Hello! This makes no sense.. if your dog is thirsty and hungry again that normally means the symptoms have returned and the cortisol is HIGH and not low. Perhaps the lab results are wrong OR your vet is looking at what is normal for a NONcush dog vs a cush dog. There is a big difference.

Please get the test results from all acth tests done and the dates and post them in chronological order so we can help you. I think there is a mistake somewhere along the way and this is the only way we can really offer you advice.

Glad you found us!
Kim

PS There have been cases where dogs miraculously no longer need to take trilo and its like the cushings is gone. However, their dogs aren't peeing and drinking buckets... So clearly your dog is not miraculously cured. :(

[mypuppy]

Hi and welcome to you and Buddy,

As Kim, I too am confused why it seems your vets ACTH results are low and your boy is still exhibiting symptoms??

My girl has been treated with Vetoryl (trilostane) on and off for over 1.5 years now. when I say on and off I mean she too experienced very low results on Vetoryl where we had to adjust her dose several times and even stop the trilo for a period of time until her symptoms rebounded. she was off trilo for a nice 5 months at some point, but unfortunately she was not one of the miracle stories and had to go back on the Vetoryl.

I'm interested in knowing more on your Buddy and curious what your vets explanation will be.

hang in there and hoping you get some answers soon.

tight hugs. Xo Jeanette and Princess

[JDG]

I'm very new with all things Cushings, but I wonder about the handling of the specimen and lab technique for obtaining the correct results. Anything done improperly can affect the results ? Then the poor pup is being treated with the wrong numbers ?

[Rebelsmom]

If you could get the numbers of the test that would help a lot. As Kim said there are different numbers for cushdogs vs non-cushdogs. My Rebel is also a good example of being right on the edge of being too low, but that is where his symptoms resolve themselves. It is a fine line because he could drop too low at any point but if his numbers are any higher then his symptoms return..

[addy]

Dr. Rhett Nichols joined the staff of Dr. Mark Peterson in 2011 as a consultant. Both endocrinologists are respected in their field and well known. Yes, I have heard of him and read some of his papers.

The part I am confused about is the "atypical". Hopefully someone will stop by and understand that. There is research that suggests the intermediate hormones can cause the same symptoms as high cortisol. Is Dr. Nichols saying that is what you are seeing?

Hang in there,
Addy

[Cyn719]

Welcome to you and Buddy. As the others have said posting the results would be a good thing. My Penny was on and off trilo and has been off of trilo since september and still has not had the symptoms to go back on them - its a confusing disease for sure -- will check back -- hugssssss xoxoxo

[buddysmom]

I got his numbers:

5/22/11 when he was doing great on 60 ml

1st draw 1.5 and 2nd draw 1.7


12/4/11 was his 6 month ACTH test, when he was still doing great but the vet changed his dosage down to 30 ml after seeing these results. His thirst and hunger increased slightly when he went down to 30ml.

1st draw 0.7 and 2nd draw 0.7



12/18/11 follow up test 10 days later

1st draw 0.7 and 2nd draw 0.7

The vet took him off Trilostane all together after the results did not change between 60ml and 30ml.

Buddy is drinking TONS of water an I want to tell the vet he needs medication regardless of the the tests are saying! To me 0.7 does not seem that low to warrant completely stopping his meds when he was doing great at 1.5-1.7 <big sigh>

[StarDeb55]

I have not posted to you before, but have been following what is going on. Your vet is absolutely correct in stopping the trilo totally. Based on these results, Buddy is now Addisonian, & to give him any more trilo could be very dangerous. His symptoms may be caused by other medical issues. If you have answered this, forgive me for asking, again. Was diabetes & thyroid ruled out? If diabetes was ruled out initially, that may need to be rechecked as drinking tons of water can be a symptom of diabetes which can come on quite quickly. There is also a type of Cushing's called Atypical where one or more of the associated adrenal hormones are elevated, & the cortisol is normal. Atypical can cause identical symptoms to regular Cushing's. The only way to diagnose Atypical is to have a full adrenal panel done by the Univ. of Tenn. at Knoxville.

Debbie

Debbie

[Harley PoMMom]

I completely agree with Debbie that Buddy is now in an Addisonian crisis. Excessive drinking and urinating can be symptoms, among others, of a dog with Addison's Disease.

Dechra's Product Insert states that Vetoryl/Trilostane should be stopped in a dog with a ACTH stimulation post of <1.45 ug/dl. Your vet is correct in that the Trilostane be stopped immediately.

How is Buddy? Any lethargy, vomiting or diarrhea?

[Cyn719]

Please do not restart the meds - my Pennys results were 0.7 and she was in danger -- Addisonians --

Vetrica OnLine Pet Care Reference says --

"Occasional vomiting and diarrhoea, possibly with some weight loss accompanied by loss of appetite and increased thirst. There are many diseases which could be confused with Addison's Disease. At Vetrica, all dogs with an increased thirst are thoroughly worked up to determine the cause, and during the investigation, Addison's Disease should become apparent."

Debbie and Lori and many more are very very knowledgeable cush angels - I know - they helped save my girl when my vet was only making her worse

Sending you lots of support strength and hugssssss - hang in there xo

[buddysmom]

Buddy is fine other than his excessive thirst and hunger, he certainly has energy on our walks. The vet said that vomiting, diarrhea, and lethargy are things to watch out for.

I didn't realize that excessive thirst is also a sign of Addisons, I thought it was a sign of Cushings and that with Addisons he would not be drinking/ eating or wanting to doing much.

I have also consulted the vet that has been treating him and has served us well over the past two years, sadly he just left this practice right at the time I really needed him! Figures...now I am dealing with a new vet and confusing test results.

[labblab]

I have to agree with you that Buddy's situation is definitely puzzling! Were both of these last two ACTH tests performed by the new vet? Were the tests conducted within 4-6 hours after Buddy's morning trilostane dose? And just to reconfirm, the excessive thirst and hunger have only developed now, after the trilostane has been discontinued? Just like another member stated earlier, I do have to wonder whether there could possibly be a problem with the testing protocol or the way in which the blood specimens were handled.

In order to be safe, I agree that you would not want to start back on the trilostane until things are sorted out. And I am not familiar with any medication that is safe to administer to a Cushpup in order to to diminish associated thirst. I would think that is a problem that you also need to suffer through until an answer is found.

I will say this, I would not have felt comfortable waiting a full six months between ACTH testing for a dog who had a post-ACTH result of 1.7. That is so very close to the lowest acceptable limit of 1.45. So the fact that Buddy was already registering a borderline result over six months ago does lend support to the likelihood that his result now is well and truly below acceptable limits.

However, were Buddy's electrolytes (basic blood chemistry panel) checked alongside these most recent ACTH tests? Were they all normal, or were there any irregularities that would correspond with a true Addisonian crisis?

I think it's very good that your new vet chose to consult with Dr. Nichols. However, at this point, perhaps Buddy needs to be seen first-hand by an internal medicine specialist who can help to sort out these confusing puzzle pieces.

Marianne

[buddysmom]

Were both of these last two ACTH tests performed by the new vet?
Yes

Were the tests conducted within 4-6 hours after Buddy's morning trilostane dose? Yes

And just to reconfirm, the excessive thirst and hunger have only developed now, after the trilostane has been discontinued? Yes

He did not have any other blood work done besides the ACTH test.

So from reading everyones posts it sounds like I should be asking for more tests, such as a diabetes and blood chem panel? I am confused as to what to do or ask, although Buddy has had Cushings for 2 years he has been pretty stable until this point, this is the first time things have been confusing.

thanks for you help...you guys are certainly well versed in this disease...

[labblab]

Diabetes and electrolyte abnormality can both be ruled "in" or "out" based upon testing from a simple blood draw. It may be the case that your vet has already performed this testing alongside the ACTH tests and you are just unaware of it because nothing remarkable was uncovered.

If not, and there is concern that a dog may be Addisonian, then the electrolytes definitely should be checked, and I am surprised if your vet did not do so. If trilostane has forced cortisol too low, there is a strong possibility that aldosterone (another adrenal hormone) has dropped too low, as well. And that can result in an abnormality in the ratio of sodium and potassium in the body which can quickly turn life-threatening if not properly addressed.

But as you already know, the really puzzling thing about Buddy is that the physical problems -- excessive thirst and hunger -- resurfaced immediately and only after the trilostane was halted. That doesn't really seem consistent with either Addison's or elevated intermediate adrenal hormones other than cortisol ("Atypical Cushing's"). It is certainly true that elevations in other intermediates can cause general Cushing's symptoms. But if that were Buddy's problem, I would have expected the excessive thirst and hunger to have manifested while Buddy was taking the trilostane -- not after it was discontinued. This is because trilostane has the potential, itself, to increase some of those intermediate hormone levels. So it seems to me that the problem should have been worse beforehand, not vice versa.

This is all a long way of saying that Buddy is a puzzle to my feeble, layperson's brain. I would encourage you to ask your vet whether his electrolytes have been checked and whether diabetes has been ruled out. As I say, those involve only a simple blood test. If all is normal on that front, I'd truly ask for a referral for a direct consultation with a specialist. Do you live close to Dr Nichols and Dr. Peterson (they have offices in NYC and Westchester County)? In terms of experience and reputation, you can't do any better than that pair. But if you are not in that area, I'm hoping you can still find a specialist experienced in endocrinology who can help you with Buddy's situation. Although a consult may seem expensive in the short run, it has the potential to save you a lot of money and confusion in the long run.

Marianne

[buddysmom]

I called the vet today to discuss Buddy's excessive thirst and hunger and of course the new vet I had been dealing with is on vacation this week :( So I spoke to another vet in the practice. This vet's dog also has Cushings and has been through a similar situation, his dog spent 2 years on Trilostane did well then his numbers dropped and he has been off Trilostane with no return of symptoms for almost a year. So already I can relate to this doctor!

So Buddy is having another ACTH test on Saturday this vet thinks it sounds more like Cushings symptoms and it not Addisons since he is still full of energy just very thirsty and hungry (this is also what I have been thinking all along). Also thanks to the wonderful people in this forum :D I asked for a diabetes and electrolyte test which I would have not known to ask for before. This ACTH test will be done by this doctor not the one who did the last two previous tests so we will see if that makes a difference in the results at all.

I am feeling better now that we have more testing scheduled...although my wallet is not feeling so well....but my baby boy is worth every penny!

[Jenny & Judi in MN]

how great to find a vet who has lived it. I hope you get some answers!

[buddysmom]

I moved up Buddy's appointment since he had an accident in the house from constant thirst. :(

His ACTH came back at: 1st 4.5 2nd 6.0

So they want him back on 30ml every other day and to monitor his thirst, then re-test in two weeks.

He was negative for diabetes and his blood panel came back normal. It appears he is back in a Cushings state which is making him thirsty and it's not something else. :D Hopefully this low dosage will reduce his thirst and make him feel better. All paws are crossed.

This forum totally ROCKS, hugs to all your cushing babies!!!

[lulusmom]

His ACTH came back at: 1st 4.5 2nd 6.0

So they want him back on 30ml every other day and to monitor his thirst, then re-test in two weeks.


I believe you meant to say that your boy is back on 30mg, right? ml is usually the liquid measurement if given by syringe. i.e., if the dose prescribed is 30mg, you give 1ml, which is the entire syringe. .5 ml or 1/2 of the syringe would equal a 15mg dose.

Trilostane has a short half life meaning it's effects are short lived. It usually starts waning any time after 8 or 9 hours and most certainly after 12 hours. This is why some dogs require twice daily dosing to maintain constant control throughout the day in order to see resolution of symptoms. I'm, therefore, not sure you are going to see symptoms improve on every other day dosing, but who knows. Did your vet mention why he didn't think reducing the daily dose would work?

How much does Buddy weigh?

[buddysmom]

Yes I meant 30 milligrams, sorry science is not my strong point.

Yeah, I am not sure if 30 mg every other day will be enough for him, he weighs 52 pounds. I think the vet is siding with caution and starting low so he does not bottom out again. He was on 30 mg twice a day and did well for almost two years on that dosage but when he was dropped down to 30 mg per day his cortisol level was still too low, so I guess the vets thinking is to start very low and increase the dosage if symptoms don't improve. He also reviewed the consultation with Dr. Nicholas and Dr. Nicholas comments were that if symptoms return to start him out at 30 mg every other day, so I guess he is cautious too.

I'm hopeful it will give him some relief anyways...every dog is different.