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

[matea]

Hi,

My 13 year old Sheltie was diagnosed with Cushings a little while ago. She also has a mild heart problem, and is taking phenopropalamine every day for slight incontinence she had a while back.

We began her on trilostane last week - 60mgs once a day in a liquid capsule. She began taking it on Friday, did okay Sat but by Sunday and Monday 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.

We contacted the vet and picked up a bottle of prednisone. After the first dosage she perked up, drank water and ate some, and now after a couple of days on it, she's very perky, energetic and walking better than she has in months. She's also eating quite a bit, which I know is a side effect of prednisone.

She's slowly weaning off the prednisone this weekend and we're talking with our vet again on Monday to discuss options. She suggested maybe giving the trilo every 2 days, as the liquid capsules can't be split up.

I'm hesistant to put her back on it, because of her reaction. Was this a sign of overdosing?

She's 13.5, has arthritis in her joints, and at this point I'm wondering if it's worth it to continue her on any Cushings treatment. She's been taking Cushex drops just for therapy (I know they don't 'cure' anything, but provide some relief). The vet has also prescribed her metacam for her joints.

Anything else I can do for her to make her feel more comfortable? Should we try the trilostane every second day? Would it even work like that?

Any opinions would be great.

Thanks so much!

Matea

[k9diabetes]

Hi Matea,

How much does your dog weigh?

What testing was done to diagnose the Cushings?

Do you have the results so you could post them?

What you described is a pretty classic looking "too much trilostane" sending the cortisol too low. The pred basically is cortisol and by giving it your bring the levels back up into a healthy range. Glad she responded so quickly and so well! :)

There is a link here on the forum re Trilostane dosing and that may give you some insight into whether this seems to have been a proper starting dose. But please do post answers to the above questions as it will help people better reply and offer suggestions.

Natalie

[matea]

Hi Natalie,

She's 17kg - a pretty big Sheltie - so the dosing seems to be in line with what is recommended.

I do have her test results, but I won't be able to get them until this weekend. Basically we had bloodwork done, and it confirmed that she had cushings - and pretty high levels.

Any idea why she's doing 'so well' with the prednisone though? I mean she's better than she has been in weeks/months. I know she can't keep taking it, but it's just nice to see her sort of back to normal.

[frijole]

Hi - I have never used trilostane, I used lysodren HOWEVER it is my guess that the dosage is too high. Don't worry we have plenty of experts here that can help you. Not all dogs go by "the book". Mine didn't. Its been 3 yrs of treatment and she is doing just fine. So hang in there. Others will chime in soon I am sure.

Glad you found us. And yes - go get the results etc for us. We need it.

Thanks and hugs
Kim

[k9diabetes]

Cushings is not always easy to diagnose and I have seen many times when the diagnosis is wrong. One possibility is that she doesn't have Cushings.

The steroid may also be helping her other problems, like her arthritis, if it's bumping her cortisol levels up above normal. And that would make her feel better. But that too suggests that she wouldn't have Cushings...

That's why seeing the results of her testing and what testing has been done will be very helpful.

Natalie

[matea]

I'll be able to get her results this weekend, they're at my parent's office, so we'll have to go and grab them from there.

I think they performed a full panel on her. I will definitely get the full results ASAP.

She does have some of the other cushings's symptoms such as hair thinning on both sides of the body, pigmentation of the skin, dry coarse coat, and drinking a lot. She also gets shaky in her back end and has trouble getting up at times.

She used to have accidents at night or when she was sleeping/resting, but after taking phenopropalamine, that hasn't happened since.

I'm assuming the steroid is helping her arthritis, she's gone up and down the stairs by herself for the first time in a while.

I'm hoping Metacam will help with that as well, she starts taking that next week.

Thanks so much for your help :)

[gpgscott]

Hi Matea,

There are contraintications of Trilo and heart meds.

Trilo is a complicated med.

I really think you need to ask your Dr. why they are prescribing Trilo. esp, with the other conditions/meds.

The right med will make the dog better, not worse.

Scott

[AlisonandMia]

Hi and welcome from me too.

It does look like the problem could well be too high a dose of Trilostane. Both the symptoms you described and the way the problem appeared around day 3 really suggests that. Although the dose (60mg for 17kg dog) is within Dechra's recommended range, individual sensitivity to the drug does vary and quite a few dogs need more or less than the recommended dose. Some authorities have recently suggested a considerably more conservative starting dose.

From what I've seen here, dosing every second day or for a couple of days and then a day off seldom, if ever, works well. It is vastly preferable to get lower-dose capsules. Very often you can get the caps you have re-compounded into smaller doses. A lot of people who are using 60mg or 30mg capsules also find it really useful to have some 10mg caps on hand for tweaking purposes.

With regards treating her arthritis - Metacam and other NSAIDS (non steroidal anti-inflammatories) can be a bit of a problem in a Cushing's dog - particularly if the Cushing's is not fully controlled. This is because both NSAIDS and cortisol tend to cause inflammation or even ulceration and bleeding in the stomach and the combination can cause serious problems. Often something else such as Tramadol is used for arthritis pain in Cushing's dogs for this reason.

Here's a link to some info on Trilostane: http://www.k9diabetes.com/forum/showthread.php?t=745

Alison

[ventilate]

Hi;
I have to agree with Scott, Kim and Natalie; If your dog is on any heart meds Trilo is contraindicated for some of those meds, I believe it is the ACE inhibiters, as well the signs you saw in your dog does look like it could have been to much meds either to high a dose or possibly the wrong diagnosis so we are anxious to see the test results that diag cushings. There are other conditions out there that mimic cushings the hair loss could be hypothyroid, my dog has Diabetes insipidus in which she drinks tons of water, DI is not Diabetes mellitis the sugar one, DI is when they do not have enough anti duiretic hormone so she drinks and pees and can not concentrate her urine. As the pred helped it appears that it was to low of cortisol causing the problems as well the pred will help the arthritis so that maybe why your pup appears tobe feeling wayyyyyy better.
Hope all stays well and I would hold the trilo for a while, trilo people can give you more info on that. I would also be cautious with the medicam as I believe it is and NSAID and they along with a highcortisol can cause a GI bleed.
How much trilo were you giving?
Sharon

[zoesmom]

Hi and welcome -

What the others have said is right on target. Once we see the test results, it will be easier to tell if it's just too much trilo or a matter of a wrong dx, although her symptoms sure sound like they fit the bill. But those test results are crucial.

I can tell you that my Zoe had the same problems when she first started trilostane - in fact, she got to the point of vomiting and diarrhea, after only two days, even though her dose was in the range for a dog her size. (She also was/is on PPA for incontinence so I don't think that's the problem. PPA is not a heart med, but in humans I know it can affect the heartbeat/heartrate. It's a stimulant.)

Two or three times, we had to stop Zoe's trilostane and after a few days wait each time, we reintroduced at a lower dose. The first couple of reductions weren't enough and within 2 days, she'd start getting sick again. She was started on 180 mg sid, and ended up taking only 45 mg bid, before she could tolerate it. (She weighed 80lbs at the time) It took about 2 or 3 mos. to gradually increase her dose back up to 120 mg. sid because I wanted to be extra cautious, after the rough start. Luckily, I had 15 and 45 mg. tablets at the time so was able to make several different adjustments. (Did you know you can order the exact dosage needed from compounding pharmacies?? I get Zoe's from pethealthpharmacy.com in AZ and it's a great price, compared to what I initially paid 3 years ago.)

Anyway, Zoe did fine, once we took that slower approach. But it's impt. to take several days off before restarting at a lower dose (Dechra recommends 7 - we did 4 or 5, I think.) We have seen some big dogs who needed a much lower dose than normal, and some little guys who wind up on a much higher than standard dose. Each dog is different, so there can be a lot of dose tweaking in the beginning. Zoe is past 3 years on trilostane now, and takes twice the dose that originally made her so sick (she gets 180 mg bid at the present, although she's taken even higher single doses - having been all over the board with trying to find what works best for her.)

So for now, the pred, then when she comes off of that, I'd wait 5 - 7 days before trying a lower dose. Maybe 30 mg would work for her. Even if you have to order some new trilo, hang onto those 60 mg. capsules because you never know if she may end up taking that eventually. Actually, until you can post those original test results, I wouldn't restart the trilo at all, just in case it's a case of misdiagnosis. Sue/Zoe

[matea]

Thanks so much for all your info. First off here are the results that I have:

Endrocrinology test:

Urine Cortisol - 704
Urine Cortisol - Creatinine Ratio - 221.1

I've attached the others as images:http://i59.photobucket.com/albums/g288/tata_03/vetscan.jpg

http://i59.photobucket.com/albums/g288/tata_03/meltestresults.jpg

She's not currently on any heart medications.
Currently she's weaning off the prednisone, and we're thinking of trying a lower dosage of Trilo after about a week or so. I have an appt to talk to our vet on Wednesday about it.

So Metacam could be hard on her stomach? I'll have to look into that as well. I just want her to be pain free and comfortable.

Please let me know what the results tell you. I know the cortisol is high.

Thanks,

Matea

[k9diabetes]

So it looks like the only test they did for Cushings was the UCCR urine test?

Do the results you have show the normal range for urine cortisol?

Did they collect the urine for the test at the vet or did you bring it from home?

This is very important for an accurate test - it has to be taken stress-free.

I would never want a dog diagnosed solely on a urine test! It can be used to help rule out Cushings but is not diagnostic for it. So I hope they did an ACTH or, preferably, an LDDS.

Until we can sort this out, I would not give any more trilostane even if the vet wants you to until the Cushings folks here weigh in her diagnosis.

Metacam, like all NSAIDS, can be hard on the stomach. And like most of the NSAIDS, it seems like some dogs have no problem and others have big problems. Our Chris was on Metacam daily for more than four years and tolerated it beautifully. It seems like a bad reaction either happens right away or never happens, not much in between.

Natalie

[matea]

The endocrinology lab report actually says:

Ratios > 60 are supportive of a diagnosis of Cushings.

She also has almost all the symptoms of cushings.

[k9diabetes]

When was the urine sample for that test taken?

[k9diabetes]

From: http://www.kateconnick.com/library/cushingsdisease.html



Diagnosis:
Initially, Cushing's may be generally suspected based on the typical clinical picture described above: a middle-aged or older, potbellied, hungry, thirsty dog with a sparse haircoat. Routine bloodwork may reflect elevated liver enzymes (especially serum alkaline phosphatase), cholesterol, and blood glucose. Some white blood cells may be elevated (neutrofils), and others decreased (lymphocytes, esinophils). A urinalysis may reflect high levels of protein and low specific gravity (dilute urine). X-rays or ultrasound may show an enlarged liver or either enlarged or atrophied adrenals. 50% of adrenal tumors may appear mineralized. Although one could do a CT scan to search for a pituitary tumor, this is not a common diagnostic procedure. All of the above suggest the presence of Cushing's, but specific lab tests can help to further pinpoint a diagnosis. These tests include a urine cortisol/creatinine ratio test, an ACTH stimulation test, and low and high dose dexamethasone suppression tests. There is no single test to diagnose Cushing's, and Cushing's disease is often difficult to accurately diagnose.

Urine Cortisol/Creatinine Ratio Test:

Considered a screening test, this cannot diagnose Cushing's, but it can rule it out. A urine sample is examined for the relative amounts of cortisol versus a normally excreted protein metabolite, creatinine (the latter is used to control for the degree of dilution of the urine). The greater the ratio, the higher the cortisol level. High cortisol in urine is suggestive of high cortisol in the bloodstream. Many conditions other than Cushing's disease can cause false positives, so this test is not considered diagnostic. Nonetheless, if the cortisol/creatinine ratio is okay, the dog is not likely to be Cushingoid, so this is a good screening test.

[matea]

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]

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]

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]

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:eek:) 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]

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:mad:. My pup was showing signs about 1-1/2 to 2 years before being diagnosed.

-Susy

[frijole]

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]

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]

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/endocrinology/index.php

[Squirt's Mom]

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]

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

[jrepac]

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]

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]

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]

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]

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

[k9diabetes]

It would be very very important given the symptoms you see of Cushings to test Melly for Atypical Cushings, which is done with the University of Tennessee Panel.

Cortisol is not the only hormone that, when elevated, can cause Cushings symptoms. These other hormones are the cause of atypical Cushings. And as some have mentioned, Trilostane is contraindicated when some of these hormones are the cause of Cushings symptoms.

If it isn't truly cortisol that's elevated, then the Trilostane could be taking her cortisol too low AND increasing the hormone that is causing her symptoms so making the Cushings symptoms worse while also giving her Addison's disease (too low cortisol) which is far more miserable to live with than Cushings :(.

I can hear your frustration as I imagine you feel like finally you know what's going on with your dog and now we are telling you to hold off treating it.

The thing is... no damage will come to Melly from typical or atypical Cushings disease if you wait a week or two to do more testing so you're sure.

I know you love Melly deeply and want what's best for her - why not KNOW it's Cushings disease instead of being even 99% sure it is. And also KNOW what hormones are causing it so you know how best to treat it?

Is Melly still taking pred?

How is she doing?

If she's still on pred and she's doing well, almost certainly her own cortisol production remains suppressed - the opposite of Cushings.

If she's still on pred and she's starving and thirsty and panting worse than ever before, she most likely has normal or excess cortisol production of her own.

I'm sorry if we seem pushy or critical or skeptical of your vet or you... none of which is intentional. It's just that after you've been on a forum like this for a few years, you have seen a lot of misdiagnosed dogs who never ever had Cushings and who were sent into Addison's disease by being treated for something they didn't have.

Your vet should be more than happy to run the UTK panel to be sure about Melly.

Hope you have a very productive meeting and I hope you will forgive us if we are ranting :o a bit - it is only out of concern...

Natalie

[MiniSchnauzerMom]

Hi!

I hope Melly is doing better today and that when you check to see whether she has had additional testing other than the UCCR to confirm a Cushings diagnosis (and also rule out a thyroid or diabetes problem) that this will be the case.

My Munchie suffered because of a misdiagnosis and being put on Trilostane when he didn't have Cushings. He was very unwell. Thanks to this forum I was able to educated myself about the disease, gain the ability to become an advocate and voice for my Munchie and receive a lot of help and support from the many concerned people here. It's been over a year now since that nightmare but I'll never forget it.

Looking forward to your update.

Louise

[matea]

Just a quick update.

Melly was weaning off the prednisone, and not doing great. For the past few days we've had her on one a day, per our vet's instructions. She eats and is hungry when she takes it at night, but vomits every morning. She's also really weak in her back legs, and when the prednisone wears off not hungry at all, though she still drinks water thankfully.

She's going to the vet this morning for an ACTH test plus some more bloodwork to see where she's at, and test her electrolytes etc.

At this point we feel we shouldn't have given her any Trilo at all, she's much worse now than she was before. :(

Regardless, we'll know more after the tests. If she's become adissonian what's the next step? How does one treat addisons?

[gpgscott]

Good idea to withold Cushing's meds, I can't see yet that you have a confirmed diagnosis, and it is said by the suppliers of both Trilo and Lysodren that you suspend treatment if the animal exhibits any of the symptoms you are describing.

I think it is too early to contemplate Addison's.

Please let us know about test results.

Best to you and Melly. Scott

[lulusmom]

Hi,

I just read your thread and it appears that your vet diagnosed Melly based on an abnormal UC:CR. As many members already told you, the UC:CR is a screening test, not a diagnostic test and regardless of how high the urine cortisol creatinine ratio is, you cannot assume that the adrenal steroid, cortisol, common in typical cushing's is the driving factor. That is why additional testing is always necessary in order to reach a confirmed diagnosis.

It is known that excess amounts of adrenal hormones/steroids, other than cortisol, can also be responsible for an abnormal UC:CR. Your vet, at the very least, should have done an acth stimulation test to determine if excess cortisol production was responsible for the abnormal ratio. Did your vet do any further testing after the UC:CR or did s/he base the diagnosis solely on the UC:CR?

Glynda

[frijole]

I agree with the others. I am not convinced your dog has cushings and I wonder whether the trilo has caused the problems. I base my opinion on the fact that protocol testing was not done to confirm the dx.

Dogs that have been pushed into Addisons are usually very distressed - to the point owners are afraid they are dying and prednisone is given to mimic the loss of cortisol.

I am not a vet but if it were my dog I would not give any more trilostane. Please post the test results when you get them so we can better help you help your baby.

Hang in there. Cushings is not easy to diagnose and some vets have more experience than others. We'll help you through this.

Kim

[Squirt's Mom]

Hi Matea,

Based on your last post, I really, really believe Melly was misdiagnosed, that the Trilo has caused damage to her adrenals and they are having a hard time regenerating or the weaning off of the pred wouldn't effect her as it has. Her reaction to the lessening of the pred indicates an overdose and that she still needs the pred. I am really looking forward to seeing the results of her ACTH.

I do hope you will post the results, the numbers, and not just "normal" or "just fine" or "low" or "high", etc. We are not vets and are not trying to usurp your vet but we have been living with Cushing's and know what to look for in most circumstances since we have "been there, done that". I would be hard pressed to believe any one vet, regardless of how good, has seen as much as we have or experienced first-hand all that we have with our pups. That is one of the big advantages of groups like this. You get a wealth of experiences and the knowledge learned from those experiences from those who live with Cushing's day in and day out, hour after hour. No vet has the time to devote themselves entirely to one sick pup and few actually live with a cush pup. Most know about Cushing's from their textbooks and schooling, and those who do treat Cushing's only see those pups intermittently for a brief time. Without our vets, many of us would be lost, but they cannot take the place of the combined knowledge and experience found here. We ask for the actual results so we help you by using the knowledge and experiences we have gained. That is our only motivation in asking for them. We may not agree with what the vet has determined or plans to do, but we will always stand beside you no matter what you decide to do...unless it's inhumane, which I don't see happening. ;) The bottom line is, we just want to help Tigger feel better and help you cope by teaching you all we know so you can stand up for Tigger with confidence.

If it turns out Melly is Addison's now, we can help you find sources for support. With Addison's the adrenals are basically dead, cannot and will not function ever again. An Addison's pup has to be on meds for life just as a cush pup does. My hope is that she is simply having an Addisonian crisis from the Trilo and with the pred will recover soon. The adrenals will need time to regenerate if they have been seriously damaged (Addisonain crisis) but in time they will start to function again.

Let us know what the vet said! and hang in there!

Hugs,
Leslie and the girls