Please help - bad reaction with Trilo - don't know what to do next?

[matea]

Re: Please help - bad reaction with Trilo - don't know what to do next?

The test was taken in February.

She also has the hind end weakness/shakiness, dry and pigmented skin and coat, eats and drinks a lot, has little tumors and other Cushings signs.

The vet said that because the cortisol level was so high, she was 99% it had to be Cushings.

[k9diabetes]

Re: Please help - bad reaction with Trilo - don't know what to do next?

I mean what time of day and where was it taken?

If they took it at the vet's office, the results can be false due to stress raising the level of cortisol in the urine.

If you collected a sample in a calm environment at home before you left for the vet appt, then the results might be accurate.

I am not saying she doesn't have Cushings but she has not been adequately diagnosed and I've seen far too many dogs who actually do not have Cushings at all and have been misdiagnosed...

There's really not a rush to start Cushings treatment. It's much much safer to do adequate testing to confirm the diagnosis.

Low cortisol is a life-threatening condition so you don't want to give a dog with normal cortisol levels a drug like Trilostane that drastically reduces the cortisol. Plus you can induce the opposite of Cushings - Addisions, low cortisol - when treating with this drug.

Natalie

[matea]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Oh sorry, we took the test at home (first pee of the morning) and then rushed it to the vet.

Two vets so far are certain that she has it. I'd like to start treating it ASAP though, because it probably wasn't diagnosed for a while. I know that's common, but for a long time we thought it was just 'old dog' symptoms.

I'm going to see if we can restart the Trilo at 15mg once a day and then move up if necessary. I've talked to a lot of people who say that often the dosages are very different than what the manufacturer recommends. I know some dogs who are taking half the prescribed amount of Trilo and doing fine.

I just feel so bad that she's had it for a while and nobody caught it. That's the worst thing about this illness, all the signs seem so subtle at first...

[Wylie's Mom]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Hi Matea,

I'm not familiar enough with Trilo or heart meds, but IMO, I agree that futher testing is needed to confirm a Cushing's diagnosis.

You did what is typically the first screening test for Cushing's – the UCCR test. As Natalie said, this test can rule out Cushing’s, but it cannot confirm it. If the UCCR test can’t rule Cushing’s out, further screening is typically done. The ACTH stim test is often the second test done, where they inject ACTH to stimulate the adrenal glands to produce cortisol and they measure the levels pre- & post-injection. However, since you are using Trilostane, many of us believe the UTK (Univ. of Tenn., Knoxville) full adrenal panel should be done instead. The UTK panel is basically an ACTH stim test, but in addition to cortisol, they measure 5 other hormones - Estradiol, Androstenedione, 17-Hydroxyprogesterone, Progesterone and Aldosterone. Your vet would draw the blood, do the injection, prepare the samples & send them to UTK for evaluation. The reason why this (UTK panel) is so important is for several reasons:

1) To find out her cortisol levels (what you would get with a regular ACTH stim test) – if the levels are within range, you may be able to rule out regular Cushing’s at this point.
2) To find out if her other hormones are out of range – meaning Atypical Cushing’s – meaning it’s a different diagnosis (or an additional diagnosis) and the recommended treatment may be different. The symptoms of regular Cushing’s and Atypical Cushing’s can be similar. Again, if the levels are within range, you can rule out Atypical Cushing’s.
3) If her Estradiol levels are high, and she does have regular Cushing’s, you probably won’t want to treat with Trilostane as it is known to increase Estradiol levels.

Even if you decide to not use Trilo because of the heart medication, you should still screen further for Cushing’s & Atypical.

If regular Cushing’s cannot be ruled out after doing the UTK panel (or ACTH stim) you should do at least one other test or have an ultrasound done to confirm the Cushing’s diagnosis and find out if she has Pituitary (PDH) or Adrenal (ADH) dependant Cushing’s – the treatment and/or dosage may be different depending on this. We can discuss this in more detail when you get to that point.

I’m not sure if screening for other diseases (like Hypothyroidism) should be done before or concurrent with the UTK panel (or ACTH stim test). I would see what others think about it.

-Susy

[Wylie's Mom]

Re: Please help - bad reaction with Trilo - don't know what to do next?

I'd like to start treating it ASAP though, because it probably wasn't diagnosed for a while. I know that's common, but for a long time we thought it was just 'old dog' symptoms.

Trilostane (and Lysodren) can do more harm than good if your pup doesn't really have the disease. Cushing's is typically a slow growing disease, so please take the time to be more sure of the diagnosis.

Don't feel bad...my former vet said my pup was just getting old even after the UCCR and ACTH stim test suggested further testing for Cushing's. My pup was showing signs about 1-1/2 to 2 years before being diagnosed.

-Susy

[frijole]

Re: Please help - bad reaction with Trilo - don't know what to do next?

I am at work and just had to respond though I can't go into great detail. I agree - unless a dog is fully and properly tested for cushings one should not give them trilo or lysodren. I understand the dog might have cushings but you have to do the tests. The tests also benchline your dogs' cortisol so you know if the drugs work. It'd be like giving someone medication for diabetes without confirming their sugar levels. How do you know the dosage?!!!! Scares me.

Glad you found us.
Kim
PS Sorry but I have to go!!

[BestBuddy]

Re: Please help - bad reaction with Trilo - don't know what to do next?

I am worried that you are treating with trilostane based only on symptoms and the UCCR. There are quite a few things that mimic those and it is so dangerous to treat cushings unless you are 100%. I would certainly get and ACTH test done to check the actual level of cortisol and then you will also have something to base results on.

I know you want to fix the problems and fast but cushings is a disease that needs to be treated with respect. Trilostane and Lysodren can be wonder drugs but if used incorrectly can be very dangerous. Is you vet against more testing?

Jenny

[gpgscott]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Hi Matea,

The wrong treatment can make a bad situation worse. I don't have access right now to our old reference but I can assure you that it is not considered appropriate to begin a medical treatment for Cushing's based soley on UC:CR and symtoms. You need Cushing's specific testing.

I prefer the ACTH full adrenal panel from UTK (university of Tennessee @ Knoxville) this panel will give you cortisol and five other hormones, all of which can cause Cushing's symtoms and as has been mentioned elevations of certain ones of these make the administration of Trilostane inadvisable.

The fact that she had a low cortisol reaction early on points to the possiblity of hormones other than cortisol being the prime cause of the symptoms.

I can't see that you have been given a link so I am placing one.

No on who has replied to you is a Dr. but we all know based on our personal experience and trusted reference material that it is inadvisable to proceed to a treatment without more diagnostics than you have had.

Best wishes, Scott

This link is to the endocrinology home page at UTK, once you get there click on the links to information about diagnostics, collection, shipping etc..

http://www.vet.utk.edu/diagnostic/en...logy/index.php

[Squirt's Mom]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Hi Matea and a belated welcome to you and your baby,

I am very concerned about the rush to treat. This time last week you said your baby was "really lethargic, shaky and unstable and refused food. At her worst, she was hardly moving, couldn't stand up on her own and refused all food - even her favorites like cheese." and this after 2 (?) days of Trilo. These are classic signs of either an overdose, a pup who cannot handle Trilo, or a misdiagnosis. After seeing the results of the tests...all that have been done to date, right?...I am inclined to lean toward misdiagnosis at this point.

I believe, the cortisol measured via a urine sample is simply the amount in the system at the time. The tests for Cushings measure how well, if at all, the adrenal and pituitary glands are communicating and where the possible break down is if not. Elevated cortisol in the urine can indicate Cushings, but it can also indicate other things as well, such as stress, fear, and non-adrenal illnesses. The signs you mention can indicate Cushings but they can indicate other conditions as well, such as liver disease, kidney issues, diabetes, and hypothyroidism. Trilostane is a very powerful drug and should never be administered without a confirmed diagnosis....which your baby does not have based on the test results posted.

The UC:CR is simply a screening test, not a diagnostic one. That would be like using a fever only to diagnose cancer. Even fever, rash, cough and weight loss cannot be used to diagnose cancer, tho they are all possible signs of cancer. Neither would you want to start chemo drugs for a diagnosis of cancer based on a fever, rash, cough and weight loss. In essence, this is what your vet is asking you to do.

At the very least, your baby needs to have the full adrenal panel from UTK (since you are using Trilo) and an ultrasound before any more Trilo is given. Without doubt, she needs to be given time for her adrenals to regenerate and prove they are functioning again without the pred, and have an ACTH to find out exactly where her numbers are before another dose of Trilo is given. This is not an option, but a necessity as are having her electrolytes checked.

I am very worried about your baby and hope you will require your vet to do further testing to be sure she has Cushings before restarting treatment.

Hugs,
Leslie and the girls

[Squirt's Mom]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Boy! We all just kinda fell on you at once, didn't we? That just shows how concerned we all are about your baby. Who's name is what, BTW?

[jrepac]

Re: Please help - bad reaction with Trilo - don't know what to do next?

I don't see how a vet could diagnose cushings with 100% accuracy on the urine test alone....that is not possible.....

there are various/several tests beyond that....and some may produce conflicting results...that's how tricky it is to diagnose cushings...

I refused to treat my Aussie w/lysodren based on what I considered "borderline" diagnosis of Cushings...

You really need to be careful....

No need to rush to treatment w/out knowing all the facts.

Good Luck

Jeff

[zoesmom]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Hi again Matea -

The others have given some wise advice. For a vet to put a dog on trilostane based solely on the urine cortisol/creatinine ratio and symptoms is playing with fire. And I think your dog's reaction after just two days is a possible warning. Lots of other health problems can raise the cortisol level and that's all the uc:uc test is telling you. That it may be cushings or it may be something else. As far as symptoms, there are plenty of other things with similar symptoms. Diabetes, hypothyroidism, atypical cushings, to name a couple. So until further cush testing is done, your pup is at great risk if given any more trilo.

Scott's suggestion of doing the U of Tenn's panel - all the intermediate hormones + an ACTH is a good idea, IMO. If any of the intermediate hormones are out of whack, that could mean atypical cushings - which has similar symptoms but is treated differently. Trilostane, in fact, can elevate some of those intermediate hormones and because of that would not be the drug of choice for an atypical diagnosis. In fact, there aren't many atypical dogs who even end up taking the other cush drug, lysodren. Most of these patients do well on something much less severe (melatonin and lignans from flaxseed.)

With the results on the urine test, there could certainly be something amiss - causing the cortisol to show up at that level. (But remember that can be a response to some condition other than a pituatary or adrenal tumor, i.e. cushings.) And when that's the case, the ACTH test is usually the preferred diagnostic test for cushings, as opposed to the LDDS. The ACTH is two hour test and will give the dog's resting (baseline) cortisol, then 2 hrs after injecting a stimulant drug, they measure the cortisol again. We call those the pre and post #'s around here. You would expect to see a post-cortisol # over 22 ug/dl to get a firm cushings diagnosis.

Even if you don't plan to do the U of T panel, which could include the ACTH and those 6 or so other hormones (like estradiol, aldosterone, ????etc), I strongly urge you to have an ACTH done before giving anymore trilo. That said, you should wait another week or two to do that, to make sure that whatever trilo was in the system is gone - to get an accurate result. There's no big rush to hurry on tratment, especially if you're not sure the treatment is right. If you wait and get the acth, please post those results here and we can help you understand them.

Beyond that, has your pup had any testing to rule out diabetes? Or any thyroid testing? I'll have to go back and look at what you posted again. But it didn't look like a full blood/urine work-up was done. True, your dog did show elev. liver enzymes, which is common in cush dogs. But again, it can be from other problems too. Liver disease, for instance. On the urine, you should ask your vet what the urine specific gravity was, if it was done. Cush pups almost always have a low USG (like under 1.015 or 1.020 - not sure the exact # but many have below 1.010.)

I assume your vet is a gp vet, and I hate to say it, but many of them don't have a lot of experience treating cushings. I'm concerned that your vet may be one of those, given his decision to put your pup on trilo based on the limited testing and symptoms alone. You might want to consider seeking a second opinion. We've seen some tragedies around here in similar circumstances and believe me, we want to spare you and your baby from anything like that. Both cushings drugs a potent medicines and can spell disaster if given to dog that doesn't have cushings. Sue/Zoe

PS - What's your sheltie's name,, btw? I don't see it. Also, on the meloxicam, that should be used very judiciously in a cush dog, or any dog with elevated cortisol and should always be given with food. We held off on giving Zoe meloxicam as long as possible. Now she gets just one a day, in the am. There's the risk of gastro problems/bleeding when a dog has a high steroid or cortisol level. We alternate the melox. with an evening dose of tramadol (which is not an nsaid and hence, not the same risks.)

[matea]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Thanks everyone. I'm having a meeting with our vet tomorrow to talk about everything and discuss options. Will let you know what happens.

Oh and her name is Melly btw!

[matea]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Oh and she's not on any heart medications, nor has she ever been, so that's not an issue right now.

She may have had other tests done, I'll have to check. She's the family dog, but she's living with my parents.

As well I've found information that supports the endocrinology test:

The test does provide a good screening test for hyperadrenocorticism and values in the normal range make a diagnosis of hyperadrenocorticism highly unlikely. The urine cortisol: creatinine ratio does not reliably differentiate pituitary-dependent from adrenal-dependent hyperadrenocorticism unless the ratio exceeds 100 x 10 -6, when it becomes very likely that the dog is suffering from pituitary-dependent hyperadrenocorticism (Galac et al., 1997).

Her cortisol ratio is at 221 which is very high. Higher than other conditions or stress could produce. That along with all the other symptoms that go EXACTLY in line with the symptoms of cushings is pretty telling.

I'll check and see if she's done other testing, and get some more information from our vet.

Thanks again!

[Wylie's Mom]

Re: Please help - bad reaction with Trilo - don't know what to do next?

Hi Matea,

Please read the UCCR information you posted more closely - it basically says that the UCCR test is a good screening test to rule out Cushing's. That is not the same as being a good test to confirm Cushing's. Further testing will be needed to confirm the Cushing's diagnosis and, as that statement had mentioned, to differentiate which type of Cushing's you are dealing with.

Good luck at your meeting tomorrow!

-Susy