Medication not working on symptoms anymore but cortisol levels ok?

Hello, I'm new here and would very much appreciate some insight.
My dog is 12 and was diagnosed last June with Cushing's. The vet prescribed 60 mg Vetoryl which completely eliminated her symptoms (for her, constant drinking and urinating in the house). About 6 months later her symptoms started to return. She had the stimulation test done in December and her cortisol levels were too low, so they lowered the dose to 50 mg. After 1 month at that dose, her symptoms were back full force. Vet put her back on 60 mg, and 2 weeks later had the tests done again. Her cortisol levels are fine, but the excessive drinking and urination continued. Since she is geriatric I won't proceed with surgery. After talking with the vet, we decided that since the symptoms aren't being controlled (and they won't increase her dose) that we would take her off the meds. After 1 week of no meds her symptoms have increased dramatically. I am frustrated and exhausted (she wakes me up at night to drink and go outside). Should I put her back on the medication? Or try a different medication (the vet didn't mention that there was another option). She had a urinalysis done last week and everything was normal. I just can NOT afford all these tests and vet visits anymore! I would love to hear from others going through this.

Hello and welcome, although I’m very sorry you folks are having such a tough time right now!

I apologize in advance for bombarding you with questions, but your answers will better guide our suggestions to you. First, can you tell us more about your dog’s overall health history, as well as the symptoms and testing that first led to the Cushing’s diagnosis? Also, how much does your dog weigh?

Second, and very importantly, can you please give us the actual numbers for the monitoring ACTH tests? You’d be surprised to find that a fair number of vets don’t know that the desired test results for dogs being treated with trilostane differ significantly from the norms that are listed when the test is used as a Cushing’s diagnostic.

Finally, have you been using a compounded version of trilostane? Since you were able to shift easily between 50 mg. and 60 mg., I’m wondering whether you might be using a liquid preparation, for instance. Over the years, we’ve had many members who have used compounded versions of trilostane with success. But research studies have shown that there may be inconsistencies in effectiveness among some compounded products. And my own nonscientific, totally anecdotal observation here on the forum is that people using liquid versions seem to be more likely to experience treatment issues with compounded products, if there are any to be had.

OK, that’s enough questions to begin with! We’ll look forward to your response, and once again, welcome!

Marianne

Hi Marianne,

Thank you for your quick response! Rosebud has no other health issues except some minor arthritis that she takes Carpofen for. She weighs 60-65 lbs (she's a lab mix). Her excessive drinking and urination are what originally made me bring her to get checked out. Initially they did a urinalysis, which came back normal, and then they had me collect urine over several days to see if it was concentrated or dilute. It ended up being very dilute, which caused them to suspect Cushing's. Then they did the ACTH test to confirm. I don't have her actual numbers, but I will call the vet to get them. They put her on Vetoryl, not Trilostane. Oh and they also checked her for diabetes which was negative.
Thanks again and I will try to get those numbers from my vet.
Denise

Edit: Just realized Vetoryl IS trilostane, sorry about that!

Hi again, Denise, and thanks so much for this additional information about sweet Rosebud!

From what you've written so far, one thing I'm noting is that, aside from the excessive thirst/urination, it doesn't sound as though Rosebud has exhibited any other symptoms that are typical of Cushing's. That does give me pause, since the ACTH can return "false positives" in the presence of illness or systemic stress other than Cushing's. That's why the symptom profile is a big part of the diagnosis. Common outward symptoms additionally include ravenous appetite (although I know that ALL Labs are typically hearty eaters!), hair loss, panting, pot belly, exercise intolerance, hind-end weakness, seeking out cool spots. Other common lab abnormalities include elevations in liver markers, cholesterol, triglycerides, and platelet counts, and certain white blood cell abnormalities. If Rosebud has been "normal" on all these symptoms, it does make the Cushing's diagnosis more questionable.

One other possibiity I can mention is diabetes insipidus. Unlike the much more common diabetes mellitus, DI does not involve elevated glucose levels. Instead, it stems from a different type of endocrinological abnormality. DI is quite rare, but we have had members here who have suffered from it. One of the possible causes of DI is shared with Cushing's: a pituitary tumor. So for that reason, we may see more cases of it here than would occur among the general population of dogs. The most specific test for DI involves what is called a "water deprivation test," but this test can be somewhat risky. For that reason, if DI is suspected, many vets simply prescribe a trial course of the medication that's used to treat the disorder. If the dog responds well to the medication, the diagnosis is assumed. Here's a link that tells you more about DI. Your vet may have already mentioned it. But if not, it may be something to consider in Rosebud's case.

http://www.pethealthnetwork.com/dog-...-cats-and-dogs

And in the meantime, we'll definitely be watching for your updates.
Marianne

You are getting great information here. This is a very well informed and supportive forum!! I just want to throw one possibility out there. Rosebud is geriatric and taking carpofen for arthritis. Do you know what her blood chemistry readings were for BUN and Creatinine? Carpofen like many anti-inflammatories can be hard on the kidneys, especially a senior dog and drinking and peeing are often seen when kidney function deteriorates.
Claire

Thank you for the incredible information! Rosebud has no other symptoms except the constant drinking and urination. Now that you mention diabetes, I remember she was tested for that as well. Probably only diabetes mellitus, though. I have a lot to talk to my vet about! I'm surprised they haven't told me about diabetes insipidus since she has no other Cushing's symptoms.
So you're saying that even though her cortisol levels were high, it may not be Cushing's? Wow, this is frustrating. :(

Thank you Claire! I don't think she's been tested for BUN and creatinine. My vet doesn't share the actual numbers or show me printouts of her test results. I will ask them about those numbers and what they think about the Carprofen having an effect.
After getting all this information, I'm thinking about switching to another vet!

I always ask for copies of test results. YOU a pay for them and I believe have a right to them. Some vets act like you wouldn’t understand them anyway but it’s not at all difficult to learn what they may mean. Carprofen like most NSAID type drugs does carry the risk of some kidney damage. Metacam, Rimadyl, piroxicam etc can all be hard on kidneys and stomach too but it’s often a trade off between our fur babies comfort and risking their aging kidneys. Galliprant a slightly newer drug is supposed to spare the kidney and liver but there is still going to be some risk. My Angel is on gabapentin for her arthritis. Galliprant was a bit better but couldn’t risk it since she is already on chemotherapy. NSAIDS such as those mentioned above are often used as a form of chemo for TCC. I would think your vet would certainly pick up on elevated BUN and creatinine but it’s worth checking since the drinking and peeing has continued.Lots of good info on this site. Good luck!!

Hi and welcome from me as well!

You said -

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So you're saying that even though her cortisol levels were high, it may not be Cushing's?

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Cushing's is one of, if not THE, most difficult canine disease to correctly diagnose. Not only does this disease share signs with many other diseases like diabetes, Addison's, liver disease to name a few, other diseases and conditions can and do cause false positives on the tests for Cushing's. Cortisol is a fight or flight hormone and rises naturally in response to any stress...even a dog who gets very stressed going to the vet can return with a high ACTH reading even tho they don't have Cushing's. My first cush pup tested positive on the LDDS, HDDS, UTK panel, and ACTH but when we did the abdominal ultrasound a tumor on her spleen was found. Once that tumor was removed her cortisol returned to normal and remained normal for several years. She did eventually become cushionoid but she did not have the disease when those tests were first run...only years later did she develop the disease. My second dog diagnosed with Cushing's had a host of other known conditions so I always questioned her diagnosis. After she passed I had a necropsy done (autopsy for animals) because no one had been able to tell me what caused her to be so sick at the end. The necropsy proved she did not have Cushing's even tho she tested over 50 on the ACTH. I did not run any other tests on her because of all her other issues believing they would return false. She had ultrasounds on a constant basis due to one of her illnesses and never once did they show enlarged adrenal glands which was another reason I doubted her diagnosis from the beginning. So to answer your question...yes, a dog with high cortisol levels may not actually have the disease. This is why it is always best to do as many tests as possible before starting treatment 1) to rule out any other possibility for the signs you are seeing and 2) to prevent giving these drugs to a dog who does not really need them.

Please let us know what you learn after talking to her vet about the possibility of DI.

Hugs to you and belly rubs to Rosebud,
Leslie

I just got off the phone with my vet. She told me Rosebud's cortisol numbers before treatment were pre: 3.6 4 hr: 3.0 8 hr: 2.4. Her most recent test (after being on meds about 6 months) was pre 1.1 and post 1.9. Does this sound right? I asked about DI and she said she wouldn't test or treat until we ruled out kidney or liver problems. Her annual checkup/vaccinations are due early May and they can do the liver/kidney testing then, although I'll probably schedule the appointment sooner.

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Originally Posted by DPow

I just got off the phone with my vet. She told me Rosebud's cortisol numbers before treatment were pre: 3.6 4 hr: 3.0 8 hr: 2.4. Her most recent test (after being on meds about 6 months) was pre 1.1 and post 1.9. Does this sound right? I asked about DI and she said she wouldn't test or treat until we ruled out kidney or liver problems. Her annual checkup/vaccinations are due early May and they can do the liver/kidney testing then, although I'll probably schedule the appointment sooner.

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Thanks for this added information. It appears as though Rosebud was diagnosed with Cushing’s last summer after having had a LDDS test performed (Low Dose Dexamethasone Suppression Test). The test results you’ve provided are consistent with Cushing’s, but as we’ve noted before, the test can return a “false positive” if some other illness is stressing the body. I do want to mention, however, that if Cushing’s is indeed an accurate diagnosis for Rosebud, those results could be associated with either a pituitary or adrenal tumor.

I do agree that it would not be appropriate to increase Rosebud’s dose of Vetoryl given her monitoring ACTH results. You would not want her cortisol to drop any lower than they were at the time of testing.

Therefore, I cannot argue at all with proceeding with some further investigation into her kidney/liver status. However, I would not feel comfortable with waiting until May since the first step is likely a basic blood and urine panel. That can be done pretty quickly and easily. So under the circumstances, I’d push to have that done sooner rather than later. Please do keep us in the loop!

Marianne

Update on Rosebud. She had bloodwork done, and everything was normal. The vet said next steps would be abdominal ultrasound and surgery if tumors were found. I'm not going to put her through surgery. So I guess I have to just deal with the consequences...constant urinating in the house, waking me up at all hours to drink and go out. Thanks for all of your help...I guess in our case there's no solution.

Did you have the chance to discuss Diabetes Insipidus with your vet? Since Rosebud may suffer from a pituitary tumor (which can cause DI as well as Cushing’s), I still think it would be worth considering it before giving up. Again, you could simply try giving the associated medication as a trial. If it doesn’t help, you’ve not lost anything. But if it does help, that would be great!

Marianne

My vet won't test for DI. She said we'd have to do an ultrasound and any necessary surgery before pursuing any testing/treatment for DI. I was thinking of getting a second opinion at another vet, but probably won't happen until all the COVID-19 restrictions are lifted. :(

Yes indeed, the Corona restrictions are having a massive effect. I do think I’d consider a second opinion too, though, when you have the chance. Under your circumstances and after the testing that’s been done thus far, I’m not sure why your vet is so reluctant to try the medication. But there may be puzzle pieces that I’m missing.

Please do keep us updated while we all remain stuck in this Corona purgatory :-(((((.

Marianne

uuhhhhh yeah, a new vet is in order. ;) This one doesn't seem to understand that she works for you not the other way around.

I went to a new vet! I was so appreciative given the circumstances. They agreed that she definitely may have DI, and thought some of her blood and urine test results didn't make sense for Cushing's. They're going to get me the meds and we'll see if it works. She didn't understand why the other vet wouldn't at least try the DI medication, since it doesn't hurt them. I think my old vet just wanted more $ out of me! Anyway, I'm so thankful for the advice you all gave me here, I would never even have known to get a second opinion and ask about DI. I'll let you know if the new meds work!

I'm so glad you got a second opinion from another vet and that this vet is willing to try the DI medication, please keep us updated! You're doing a wonderful job!!

Lori

I agree — I’m so glad you were able to get this consultation! As Lori says, please let us know how things develop ;-).

Marianne

Oh I am so proud of you for taking the steps necessary to get your sweet girl the care she deserves. That can be a difficult thing to do and I know Rosebud is proud as well.

Please keep us updated on how she is doing!
Hugs,
Leslie