9 year old Scottie diagnosed with "atypical" Cushings - progress report

[Angus]

Scary time for us

Background: Twenty Five pound 9 year old Scottish Terrier diagnosed last month with ATypical Cushing's. Vet recommends Melatonin (regular) 3 mg, and Lignan (SDG (25-30 mg) OR HDG(20 to 30 mg)). We had a choice between Trilostane or Lysodren, and we decided to go with Trilostane treatments, and Friday started 60 mg once daily. Lysodren just seemed too scary and daunting, so I hope we made the correct call with the Trilostane.

Question: About the Lignan. Having trouble finding the correct dosage on that, and we went to several health food stores, and they wanted to sell us flaxseed oil, which the vet specifically warned against. From the internet, we found Swanson's Ultra 7-HMRLIGNAN site, and we are about to order it (it is 40 mg, while vet wanted 20-30, but it is the closest we can find - I figure we might have to break it out somehow)

Anybody have any experience with this particular product? In your opinion, will it do what the doctor requests?

Thanks.

[labblab]

Hello and welcome!

No question about it, diagnosis and treatment decisions are pretty scary stuff for almost everybody. But I'm really glad you've found us, because we will try to offer you our best support and suggestions. :)

I will "punt" your question about the lignans to others who are more knowledgeable in that regard. But I do have a couple of questions for you in return ;).

Has your boy been diagnosed with elevated cortisol in addition to elevated intermediates? Is that why you are starting the trilostane treatment? The diagnosis of "Atypical Cushing's" is usually reserved for dogs with normal cortisol levels but elevated intermediate or "sex" hormones. If your dog has abnormally elevated cortisol, then we'd be referring to him here as being genuinely Cushinoid with accompanying elevated intermediates. And you would likely be interested in pursuing further diagnostics by which to determine whether the Cushing's is pituitary-based or adrenal-based. Not only is this a terminology issue, but also a treatment issue. Because different strategies are employed if the treatment is geared towards the intermediates alone or instead at lowering abnormally elevated cortisol.

Can you please tell us in greater detail about your dog's health history, symptom profile, and Cushing's testing? Actual test results are super helpful to us.

Since you are treating with trilostane, I am assuming that he must have elevated cortisol. One cautionary note: the dose with which you are starting is double the initial dose that is currently being verbally recommended by the manufacturers of Vetoryl (brandname trilostane). Although their published literature discusses a dosing range of 1-3 mg. per pound (and the published dosing chart does in fact show 60 mg. for a 25-pound dog), when contacted personally, Dechra's U.S. technical representatives are verbally revising the recommendation to starting off at no more than 1 mg. per pound. In the event that you or your vet want to double-check the most current dosing recommendations, here is contact info for Dechra's Kansas office. I know they will be happy to talk with you.

http://www.dechra-us.com/Default.aspx?ID=365

Also, here is a link to Dechra's U.S. Product Insert. As I say, I do believe there have been revisions to the recommendations in the published dosing chart. But otherwise, the other product info should be very helpful to you.

http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

So once again, welcome! And we'll be looking forward to learning more about your dog's treatment journey.

Marianne

[Squirt's Mom]

Hi and welcome to you and Angus! :)

I am curious if the Trilo was recommended by UTK or by your vet. Along with the result sheet from UTK showing the results of the test, a treatment sheet would have been included. At the bottom of the results sheet, UTK usually lists their recommendations as numbers, as in, "Your vet may want to consider treatment options # 1, 2, or 5." Trilostane is not usually recommended by UTK for Atypical pups as it has been shown to cause elevations in the hormones already elevated in Atypical. Having said that, some vets will prescribe Trilo anyway and the pup does fine.

I want to make sure you understand something. Trilostane is no safer than Lysodren. It can and does have the same "side effects" as Lyso. I say "side effects" because the problems seen with these drugs are not because of the drugs themselves but because of misdiagnosis, and/or incorrect dosing and monitoring. DO NOT let yourself become complacent because the Trilo is "safe"....you need to be just as diligent using Trilo as you do using Lyso. ;)

We love details! :D So the more you can tell us about Angus the more meaningful feedback we will be able to offer. Once you have his test results, it will help us if you could post the actual results along with the units of measurement and normal values for that lab. If he has any other health conditions, is on any meds, supplements or herbs at the moment, that info will help as well.

My Squirt is Atypical and she is on melatonin and the SDG lignans. We tried the hulls for a bit but didn't see enough difference to merit the cost difference. We haven't tried the HMR lignans so can't offer any help there. We use the NSI brand of lignans which I get at VitaCost. She weighs 15 lbs so she gets 3 capsules per day of the lignans. On her last UTK panel, her estradiol is finally normal but her male hormones are increasing, as is the cortisol tho it remains within the normal range. If this trend continues, we will start Lyso as a maintenance only - a loading phase is not typically used for Atypical pups. Lysodren will lower all the intermediates with the possible exception of estradiol as it can be produced outside the adrenals. This is where the melatonin and lignans come into play. They will address the estradiol regardless of where it is produced while the Lyso works only on the adrenal glands.

You and Angus are no longer alone. We will be here with you every step of the way. The collective knowledge, first-hand experience and good old-fashioned hand-holding found here is astounding. I am glad you found us and look forward to learning more about both of you in the future.

Hugs,
Leslie and the girls :D - always

[Angus]

Hi Marianne.

Thanks, and this site is very helpful. Wish we had found it a few weeks ago.

Angus was diagnosed by the U. of Tenn lab with high cortisol and high sex hormones.

His main symptom is the excessive thirst, and then of course, excessive urination. He also seems to be having a bit of a bloated appearance lately. And looking back, maybe his hair is not growing as fast as it should. But other than that, he seems fine.

He was given a Cushing's test at our regular vet, it came back normal, then we went to a internal medicine specialist, they did an ultrasound, nothing obvious jumped out. So then they did the test where they send the sample to the University of Tennessee...and that came back with the elevated cortisol and sex hormone, and then we were told it is "ATypical."

We haven't been given the actual test results - I'm feeling like a bad dog owner not seeing that, after seeing the results posted on this site.

After the internal medicine specialist found the diagnosis, they referred us back to our regular vet for treatment, and recommended the Melatonin, Lignan, and Trilostane or Lyposene.

So far, Angus has had two of his daily dosings of the Trilostene - and so far no ill effects. Though I am a bit worried about some of the postings I have seen here - from what I read, it does seem to me the dosing is a bit aggressive, as he is right above the 30 mg threshold. He is scheduled for bloodwork in 10 days. But based on what I read here, we will be monitoring him very very closely.

Thanks,
Kim

[Angus]

Thanks Leslie.

My understanding from my regular vet is UTK recommended melatonin and Lignan, and that the internal medicine specialist we went to in order to nail down a diagnosis is the one that recommended the Trilostane or the Lysodren.

Like I said to Marianne, his cortisol and sex hormones came back elevated - so I wonder if the "ATypical" diagnosis is really carved in stone with the the vets we have been seeing. Sounds like they are treating Angus as regular Cushings, right?

Thanks for the info on the SDG...I was about to order the HMR Lignan, but you have given me another avenue to pursue.

Thanks again,
Kim

[addy]

Hi and Welcome,

I have been treating my Zoe with melatonin and SDG lignans. The SDG lignans may cause occasional loose stool as it is fiber. THE HMR Lignans are not fiber. I am in the process of finding HMR lignans and like you, only need 20mgs. I was going to order the Swanson's 40 mgs and hope I can open the capsule and reclose it. I can do it with SDG caspule from Vita Cost so hoping the Swanson capsules are the same.

Thought I would mention the fiber. Zoe has colitis and she was fine with the SDG for two months and then had a flare ( not casued my the lignans) but now the increased fiber seems to be bothering her a tad.

Hope this helps!

Addy

[labblab]

Kim, in no way are you a bad owner!!!! Most people don't usually request specific test results -- until they join up with a nosy bunch like us...:p It's clear you are a great, caring owner who is trying to learn as much as possible on behalf of your boy.

I must admit that the actual test results (especially those from UTK) will be very helpful, though. Because the two different recommendations are confusing -- that of UTK labelling Angus as "Atypical" and only recommending melatonin/lignans, as opposed to the specialist recommending trilostane or Lysodren. None of us are vets, but our experience here has been that when cortisol is also elevated on the UTK testing, UTK will usually highlight that fact and discuss cortisol-lowering treatment, as well. And depending upon the profile of intermediate elevations, they will more likely recommend Lysodren than trilostane for the reason that Leslie has already mentioned: Lysodren lowers most intermediates in addition to cortisol, whereas trilostane increases them further.

I must add that there is not a clear concensus about that recommendation among clinicians in the field (Lysodren over trilostane). Not every dog with elevated intermediates will exhibit elevated cortisol. But our experience here is that virtually all dogs with elevated cortisol will also have at least some elevated intermediates. And for many specialists, lowering the cortisol (either by trilostane or Lysodren) becomes the primary focus. They are less concerned about the status of the intermediates in the face of elevated cortisol, and believe that symptoms will resolve in most dogs once the cortisol is well-controlled.

Either way, the melatonin/lignans regimen shouldn't hurt Angus. But it may or may not be particularly helpful. If I were you, I'd really tack down actual copies of all these test results: the original Cushing's test that was "negative," as well as the UTK test and treatment recommendations. Also the written summary of the ultrasound report. If Angus does have "conventional" Cushing's, it is likely pituitary-based if no growths were evident on the adrenal glands. And I feel certain that there was nothing there, or the specialists would have discussed that with you prior to requesting the UTK testing.

Thanks so much for what you've already told us. And I'll be looking forward to all your additional updates.

Marianne

[Harley PoMMom]

Question: About the Lignan. Having trouble finding the correct dosage on that, and we went to several health food stores, and they wanted to sell us flaxseed oil, which the vet specifically warned against. From the internet, we found Swanson's Ultra 7-HMRLIGNAN site, and we are about to order it (it is 40 mg, while vet wanted 20-30, but it is the closest we can find - I figure we might have to break it out somehow)

Anybody have any experience with this particular product? In your opinion, will it do what the doctor requests?

Thanks.

Hi Kim and welcome to you and your furbaby from me and my boy Harley.

Here is a link with some info about the Flax hull (SDG) lignans and the lignan that is derived from the Norwegian Spruce tree (HMR lignan).

http://www.vet.utk.edu/diagnostic/endocrinology/pdf/20100810-LIGNAN-Write-Up-Revision03.pdf

We are here to help you in any way we can, so ask all the questions you want, ok?

Love and hugs,
Lori

[Angus]

Angus, our 9 year old Scottie, 25 pounds, diagnosed with ATypical cushings. I posted a question about Lignans earlier, so sorry to repeat some of the same information.

After two Cushing's test, one at regular vet, and the other at Internal medicine specialist, with that test sent to UTK. That test came back high levels of cortisol and high levels of "sex" hormones. Angus then referred back to regular vet for treatment, and we decided to go with Trilo, along with Melatonin and Lignan. Treatment began Friday, December 3rd or Trilo (60 mg once a day) and Melatonin (3 mg 2X daily). Decided to order HMR Lignan, but that has yet to arrive.

Angus did vomit 1 time shortly after first dose, and on Tuesday, did cough a bit. Just overnight Monday night and Tuesday morning, but not since. We called vet, she said just monitor. Other than that, no side effects. Check that - maybe he is a bit slower and less energetic - maybe. But not markedly so.

Also, no marked improvement in his thirst levels from pre medicine. Still drinks more than he should, and urinates more, of course. He still goes outside and eat snow. He also still looks chunky.

In summary, after a week, not much change. No horrible side effects, really, but also no marked improvement in his symptoms.

Is this about what we should be expecting after only a week?

Thanks, and sorry for the long post.
Kim

[labblab]

Hi again, Kim.

You'll see that I "merged" your new thread about Angus into your already existing thread, but I renamed the entire thread with your most recent title. We generally encourage folks to post new replies and updates to their original threads so that all the history and information for their dog is organized all in one spot. That makes it a lot easier for our members to be able to track new developments, as well as any changes that have occurred over time.

By any chance, have you been able to request a copy of Angus' test results? We could perhaps give you more helpful feedback if we can find out how high or low his cortisol was pre-treatment, as well as the pattern of elevation for his intermdiates.

The manufacturers of Vetoryl write that owners should expect to see at least some reduction in ravenous appetite and excessive thirst/urination within the first two weeks of treatment. However, this is assuming that the initial trilostane dose is resulting in a sufficient decrease in circulating cortisol. This is where it would be helpful to us to know what his pre-treatment ACTH results were. If his cortisol was sky-high, then it may take a longer rather than a shorter time to achieve adequate cortisol reduction. Plus, we've discovered that not every dog "reads the book" as far as conforming with expectations :o. I was really lucky that my own Cushpup showed improvement with thirst and appetite within a couple of days of starting treatment. But he started on a dose of trilostane that was whopping high according to current recommendations. Other members have reported a significant delay in seeing improvement with thirst and urination, sometimes even when cortisol is being effectively lowered. So patience can truly be a virtue! And these different experiences also highlight the importance and value of performing monitoring ACTH testing along the way. That way, dosage adjustments can be made if the desired therapeutic level of cortisol has not yet been achieved.

Marianne

[Angus]

Thanks Marianne.

I wasn't sure whether to post in the original thread or not.

Your field reports on various dogs and their reaction is good to know, and what I was hoping to learn. We have our 10 day followup testing on Tuesday, so hope to actually see the test results at that time.

Also, I want to get to the bottom of why we have been told he has Atypical - I have read here that an increased cortisol is regular Cushings. Also, I don't understand why his first Cushing's test came back normal, but the one we did at the Internal Medicine vet that was sent to TN came back positive.

Guess I will have to wait until Tuesday to find out.

[Squirt's Mom]

Hi Kim,

It isn't that unusual for one test to be negative and the next positive...Cushing's is one of, if not THE, most difficult disease to diagnose in pups. One reason we like to see a pup have several Cushing's tests before starting treatment. When you talk to your vet, ask for copies of all those tests and post the actual numbers along with the units of measurement and normal ranges. This will help us answer your questions much easier.

You are absolutely correct - if a pup's cortisol is elevated, then that pup has true Cushing's, or conventional Cushing's, and is not considered Atypical even if the intermediates are also elevated. The cortisol is the deciding factor between true Cushing's or Atypical Cushing's. Atypical pups have normal cortisol levels but have elevated intermediates.

Hope that helps!

Hugs,
Leslie and the girls - always

[frijole]

Thanks Marianne.

I wasn't sure whether to post in the original thread or not.

Your field reports on various dogs and their reaction is good to know, and what I was hoping to learn. We have our 10 day followup testing on Tuesday, so hope to actually see the test results at that time.

Also, I want to get to the bottom of why we have been told he has Atypical - I have read here that an increased cortisol is regular Cushings. Also, I don't understand why his first Cushing's test came back normal, but the one we did at the Internal Medicine vet that was sent to TN came back positive.

Guess I will have to wait until Tuesday to find out.

You aren't alone! I had one dog I treated for cushings for 4 yrs so I thought I understood all this stuff... then another one was diagnosed - had 4 acth tests and an ldds test say it was cushings. I gave her lysodren and it did nothing. Then I took her to K State Univ (closest specialist to my state) and they are saying it isn't cushing's.. and frankly we still aren't sure. So please don't rush treatment. I know its frustrating. Glad you have an IM on the case - much easier. Kim

[Bichonluver3]

Hi!
We use melatonin, 3 mg twice a day. I open capsule so can mix powder. Our flax hulls (SDG) I order online and use 1/8 teaspoon in the am. Hope this helps. We don't use any of the other "drugs".
Carrol