New Cushing's Diagnosis Help!

[Agoralyx]

Hello everyone. I have a 95 lb low content wolfdog/malamute mix named Galen who was recently diagnosed with Cushing's Disease. He is a rescue and I have no background information on him, but he has been identified as "adult" age, with no specific signs of being a senior like ocular degeneration or arthritis, so we guess he is 6-ish years old.

I rescued him a little under two years ago. At that point he was still intact, weighed 65 lbs. He was underweight, but had good muscle tone. He had some hair loss around his neck, but was wearing a choke chain when he was dumped at the shelter, so I attributed it to that. He also had a generally dull coat, fleas, and hook worms. The parasites were all treated, and he was put on a grain free kibble with cod liver oil to improve his coat. He has had a ravenous appetite from the get go, which we initially attributed to the parasites and being underweight.

He started having bloody urine roughly three weeks after I got him. We went to the emergency vet and he was diagnosed with a severe UTI/Prostatitis. He has elevated protein, high WBC and crystals in his urine and was on antibiotics for 4 weeks before the infection cleared.

He had a second, less severe, infection about three months later. Urinalysis showed similar results sans crystals and he was on antibiotics for two weeks.

He had a third infection again around three months later with similar symptoms to the second, again without crystals and was on 2 more weeks of antibiotics.

That first year his weight steadily increased, but his appetite never faltered. He continued to suffer from a poor, fragile coat which did not grow back and did not "blow" like a typical northern breed coat.

He was finally deemed healthy enough to neuter last November. His CBC at the time of surgery was considered within normal range, but I don't currently have exact numbers. The vet suspected he had Alopecia X/Coat Funk and hoped that the sterilization would improve his coat as well as his UTI symptoms, which were attributed to BPH.

In February we took him back to the vet when he started to look like he was losing muscle tone in his hind legs, seemed more fatigued (this was when he started having a chronic pant), and the bare spot from his surgery showed no signs of growing back. He was tested for Hypothyroidism which came back negative, the only abnormalities on his CBC at the time were a slightly elevated GLU (134 mg/dL) slightly elevated HGB (18.2 g/dL ) and a slightly low EOS (0.09 K/uL). The vet suggested putting him on a Zinc supplement (25mg 1/day) and advised we wait through the spring to see if the annual "blow" would trigger his hair growth now that he was neutered.

Sufficed to say, it did not. He continued to gain weight, continued to be insane about food and started draining our 5 Gallon water tub once a day (we have two other 65 lb+ dogs, so while he didn't drink it all alone, his increase in drinking was the only change in consumption). The muscle wasting became more pronounced even though the dogs are walked 4+ miles a day, and his head started to appear skeletal. He has had a somewhat potbellied appearance since I got him, but he became noticeably bloated in the abdomen. He was urinating 120+ Oz a day and started having accidents in the house.

So he went back to the vet on June 19 and was tested for Cushing's. His work up showed:

Both EOS and HGB were back within normal range
GLU was at the high end of normal, but within normal range (123 mg/dL)
ALKP was 258 U/L (up from 133 U/L in February)
CHOL was 313 mg/dL
%NEU was 68.0%
Na was 158 mmol/L
UPRO was 114 mg/dL
UCRE was 54 mg/dL
UPC was 2.11
Base CORT was >10 ug/dL
ACTH Stim CORT was 22.7 ug/dL
X Ray showed a significantly enlarged liver

He was prescribed 120mg of Trilostane 1/day and has been taking it for four days now with no apparent side effects. (The vet did not have enough of the medication, so they had to special order it hence the delay between Rx and start date).

He is scheduled to return to the vet in a week to have another ACTH Stim done. The vet really wants to do a DST to make sure that it's not adrenal since he is not a "typical Cushings dog", but long story short I can't immediately afford to have the test performed.

I'm really worried that his condition is adrenal, and that not performing the DST will be a death sentence. The vet guessed that if it is a malignant adrenal tumor he likely only has months to live without aggressive, invasive treatment which I will likely not be able to afford either.

Will the trilostane manage his symptoms enough that, god forbid, his Cushing's is malignant, he won't feel any pain regardless of what treatment I can afford? Or will he progressively get worse regardless of the trilostane? I'm squirreling away money to have the DST performed as soon as possible, but I'm worried that I might be too late to do anything about it even if I do get an official diagnosis.

Am I over thinking things? Am I not worrying enough? Anyone have similar experiences they would be willing to share?

[Squirt's Mom]

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[labblab]

Hello and welcome to you and Galen. Thank you so much for rescuing this sweet, handsome boy, and for taking such an interest in advocating for his health and happiness!

I apologize for only having a few moments to post right now, but these are the two thoughts that seem most important to me. First of all, I am guessing that the "DST" test you are referring to is perhaps a Low Dose Dexamethasone Suppression Test ("LDDS")? If your main goal in pursuing this test is to determine whether or not Galen has an adrenal tumor, then an abdominal ultrasound may actually be the better diagnostic. The reason why I say this is because sometimes the LDDS results will point definitively to pituitary Cushing's. However, it is possible for either pituitary or adrenal Cushing's to produce a certain type of result on that test. So you could spend the money for the test, and still receive a result that doesn't distinguish between the two forms of the disease. However, with an abdominal ultrasound, the adrenal glands are actually visualized so that a mass or tumor will be seen and identified if it is present. You also receive helpful information re: the status of other internal organs such as the liver, kidneys, spleen gallbladder, etc. So at this stage of things, if I was saving money for one diagnostic vs. the other, I'd probably go for an ultrasound. At least that may be something to discuss further with your vet.

Secondly, weighing 95 pounds, an initial dose of 120 mg. is a bit higher than is currently recommended. After a decade of treatment experience, most specialists and researchers now recommend that initial dosing not exceed 1 mg. per pound. If your vet wants to stick with brandname Vetoryl, this dose could be achieved by combining a 60 mg. capsule with a 30 mg. capsule. From a practical standpoint, the combo is probably more expensive than the single 120 mg. capsule. But the flip side is that you get a lot more dosing flexibility with the smaller capsule sizes. For instance, if you find out at the first monitoring testing that 120 mg. is too much for Galen, you are pretty much stuck with unusable capsules since they are not supposed to be opened and the contents handled/split. However, during the time that you are initially trying to arrive at Galen's optimal dose, you can always combine the smaller dosage capsules to arrive at a larger dose. So bottom line, I would not commit to buying a lot of 120 mg. capsules at this stage of the game. And you will definitely want to make sure he is indeed tested within these first couple of weeks, so as to insure that the 120 mg. dose is not dropping his cortisol too far.

OK, gotta run for now, but once again welcome!
Marianne

[labblab]

Here's a quick P.S...it occurs to me that instead of the LDDS test, you may be referring to the High Dose Dexamethasone Suppression Test ("HDDS"). It is indeed meant to differentiate between the two forms of the disease, and is to be used only when the overall Cushing's diagnosis has already been confirmed. Honestly, I still think I'd personally opt for an ultrasound over an HDDS, though, because you are actually able to view any adrenal abnormalities that may be present. I think you get more "bang for your buck" with the imaging over the results of a blood test.

[labblab]

And here's a P.P.S. :o...just to calm your fears a bit, I'm not exactly sure why your vet is labeling Galen as having unusual symptom presentation and therefore his Cushing's more likely to be adrenal in origin. He looks like a pretty typical Cushpup to me: consistent overt symptoms, high-normal glucose, elevated ALKP and cholesterol, enlarged liver, protein in urine, recurrent UTIs, etc. This all looks pretty standard to me, and could arise from either form of the disease.

One additional question: is his thyroid reading ("T4") in normal range? Some of the symptoms you describe can also be caused by hypothyroidism, and hypothyroidism frequently accompanies Cushing's either as a primary disease in its own right, or else as a result of the endocrinological abnormalities caused by Cushing's (in which case, the thyroid readings may return to normal once the Cushing's is well controlled).

[Agoralyx]

He's my soul dog. The gentlest, most sensitive boy you'll ever meet. <3. I rescued him shortly after having to put another rescue wolfdog to sleep who was suffering from Rage Syndrome. (My third rescue wolfdog has Crohn's Disease, I'm all about those special needs kids, LOL!)

The DST as he called it, was definitely a Dexamethasone Suppression Test, but I can't say for certain whether it was the High or Low dose. It was definitely intended to clarify whether his Cushing's was adrenal or pituitary, and it was supposed to take 8 hours. If that helps at all. :P

It's not that his symptoms are atypical that concerns the doctor, it's that Galen is much larger and younger (symptoms starting when he was a young adult 3/4 years old) than any of the other Cushing's dogs that the vet has treated, hence why he's concerned about it being adrenal.

He mentioned an ultrasound being a possibility, but since he had a hard time getting good imaging with the X Ray, he was concerned that they wouldn't be able to get a good enough look at the adrenal glands to make a diagnosis. (It just occurred to me while writing this reply, do the ultrasounds generally use contrast dye? Or would suggesting contrast help with an otherwise difficult image?)

He has been doing well on the 120mg, but the vet only gave us a one month prescription in case we needed to back off pending the second stim test. He has been doing very well the past couple of days though. His drinking has decreased, no accidents in the house, and my gut is telling me that his belly might just be a little less distended. And he has had no apparent side effects as of yet. (He does get the meds with his food, for what that's worth, and he's still a hungry hungry hippo :P).

I don't have the actual numbers on hand, but he had a full thyroid panel sent to Michigan State done in February, and those results were normal.

[labblab]

Thanks so much for this additional info, and bless you again for your loving care of these special needs kids!

Even though your vet may not have seen many in his practice, we often see large dogs of Galen's age here. But then, we've "seen" tons more Cushpups here over the years than even most specialists! :o

For what it's worth, my own Cushpup was a male Labrador retriever who was diagnosed at age 8 with pituitary Cushing's, but in retropect, he was clearly suffering from the disease for at least 2 years beforehand. So Galen's size and his age do not seem unusual to me.

Regarding the ultrasound: your vet is absolutely correct that the adrenals are hard to visualize, so to be of real value, the ultrasound would need to be performed on high-resolution equipment and interpreted by specialized professionals. Most GP vets do not have this capability, so often a referral is needed to a speciality practice. This may involve an expense that is just not realistic for you. But again, it may be something to discuss and "price" further.

[Agoralyx]

That is certainly reassuring to hear! He outweighs the next largest Cushing's dog at the practice by 50 lbs, so I kind of went into panic mode! We're only an hour away from Ohio State and I've worked with them before with other animals so I might look into pricing the procedure with them. :)

I would rather save up to have a more effective diagnostic at the get go than be pinged with multiple smaller charges that don't actually get me any answers. My financial issues shouldn't be very long term, and if it's not adrenal I can deal with the monthly upkeep of managing pituitary issues.

[labblab]

Yes, if you already have had a good experience with Ohio State, that may definitely be the way to go in terms of diagnostics so that you feel reassured that you know what you are truly dealing with.

As you probably already know, though, adrenal tumors are by far less common than pituitary tumors. And not all adrenal tumors are malignant or necessarily fast-growing. Last but not least, trilostane is prescribed to treat the effects of adrenal tumors as well as pituitary tumors. So I do believe that, at this point, the odds are in Galen's favor. ;)

[Agoralyx]

I really appreciate your more positive prognosis. :) I'll update if he has any issues throughout the week and of course, when we get his ACTH test next week. This evening he was running up and down the stairs with one of his brothers for the first time in months. (Of course he had to flop over and pass out for a half an hour afterwards, but it's still more self motivated activity than I've seen out of him in a long time).

[molly muffin]

Great to hear that he is feeling a bit more energetic. I hope he is continuing to do well.

[Agoralyx]

Good (ish) news from the Vet today! :) His Pre-Stim Cortisol was 7.5 ug/dL and his post was 20>10 ug/dL (we'd have to send it out to get an exact #, but it was still lower than his test pre-Trilostane). Ideally the vet wants him a bit lower, but since he's already on the 120 mg we're going to keep his dose where it is for a couple more weeks and see where he's at then.

[labblab]

...His Pre-Stim Cortisol was 7.5 ug/dL and his post was 20>10 ug/dL (we'd have to send it out to get an exact #, but it was still lower than his test pre-Trilostane)....
Can you help clarify what that "post" means? I've never heard of a post-ACTH result that is not a specific number, so I am confused by that notation.

Since Galen's cortisol level doesn't appear to have fallen too low, continuing on an unchanged dose seems like the right decision. But at the next check, you will definitely want an exact number.

Marianne

[Agoralyx]

They called it a Therapy Monitoring ACTH test? And the results interpretation came in ranges, not exact numbers.
<1, 1-5, 5-10, 10-20, 20< and he came back as 10-20 ug/dL. The test they performed at his diagnosis was a Cushing's Selected ACTH test and had the specific results. I didn't realize ahead of this test that there would be a difference. :/ We're following up in another two weeks though, so I'll be sure to make a note of that for next time.

[Squirt's Mom]

What country do you live in? And what is the agent the vet used for the ACTH? And what are the little letters after those numbers, like ug/dl, nmol/L, etc.? Those results. 10-20, sound like a range, not a value. Typically we would see a post, or second number (there should be 2-3 numbers), something like 11ug/dl with a range of 10-20ug/dl.

[Agoralyx]

Apologies for the confusion! I had used the units of measurement in my previous posts and not that last one. :) It's all ug/dL. So his pre-test was 7.5 ug/dL and his post was between 10-20 ug/dL.

I didn't get a more specific post-stim result because the vet ran a Therapy Monitoring test to try and be helpful and save me some money. I didn't realize that the Therapy Monitoring test and the Cushing's Specific test gave results with different specificity. If we had performed the Cushing's Specific I would have found out the exact number between 10-20 ug/dL, but I found that out too late for this run. :/

I live in the USA and the agent used was 2.40x (Corticotrophin gel 40u/ml 10ml)

And I believe that covers everything!

[Squirt's Mom]

:p:cool: Yes, that clears a LOT up in this feeble old mind! :D


His Pre-Stim Cortisol was 7.5 ug/dL and his post was 20>10 ug/dL

So I am reading that the post # was greater than (>) 20ug/dl with a range of 10-20ug/dl. The pre number isn't all that important - it's the post, or second/third, number that tells the tale. And since the post # was greater than 20, it has been sent out to a lab.

[Agoralyx]

20>10 means that it was greater than ten (>10) but less than twenty (20>) >10 and 20> together reads as 20>10 ug/dL. :)

If it was >20 instead of 20> THEN it would mean more than twenty. ;) The open side points to the bigger value and the closed side points to the smaller value. Sorry for inspiring an impromptu math lesson, LOL! I guess writing it as 10-20 at the get go would have been less confusing!

Anyway since his last test post-stim was 22.7 ug/dL, the vet is satisfied enough with the at least 3 ug/dL drop in cortisol for two weeks on the meds that he doesn't want to raise him to a higher dose yet (since he's on 120mg already).

Of course any thoughts are appreciated, even if I am confusing! :D

[Squirt's Mom]

MATH! :eek: That's why I'm so dizzy! :D Not my forte atall! :p So thank you for setting me straight. Now I gotta go lay down and let my brain calm. :p

[Agoralyx]

Hello everyone! I'd like to apologize for the lack of updates from me. But as they say, no news is good news!

Since my last update Galen has been slowly upped to 180mg Vetoryl one time/day, and his Cortisol levels finally seem to be settling down in the "good zone".

He has lost a bit of weight through the abdomen, and is tolerating walks without so much fatigue and panting. He's more rambunctious than I've seen him in years. And joy of joys, his hair is starting to grow back!

My vet has been sooooo accommodating of my financial situation. Through him I'm getting the 180mg for $140/30 days and that's the name brand! Once Galen's stable for a bit longer we're going to look into getting a compounded formula for him.

We haven't been able to afford the abdominal ultrasound yet, with the continued messing with his formula. But the vet believes that since it has been at least a year since his symptoms became prominent (that is, more than just losing hair and UTIs) he is pretty confident that he has Pituitary Cushing's, not Adrenal, since were it an adrenal tumor his overall condition would likely be deteriorating, even if the Vetoryl improved his Cushingoid symptoms.

I still plan on having the test performed once my financial situation has stabilized, but overall our situation is looking very good and I couldn't be happier. <3 :D

[Harley PoMMom]

Thanks for coming back and updating us, and glad Galen is doing so well. I was wondering if you could get copies of his most recent ACTH stim test results and post them here...thanks!

Hugs, Lori