Intro: Wylie, 5 y/o Yorkie, Atypical Cushing's

[Ann and Wylie]

Hello Everyone :). What a wonderful and informative place this is, I'm glad to have found this site. I tried to register as "Wylie's Mom" - and I see there is one already here...which is funny bc I'm a Moderator at yorkietalk.com, and my user name is Wylie's Mom :p.

My beloved Wylie will turn 5 in a few days, he is a yorkie, neutered. For months, my (former) vet said nothing was wrong w/ him, but I just knew that there was something wrong. On a whim, I took him to a Vet Dermatologist for his fur loss/skin/ear issues - and when I also explained his PD/PU, she said we had to test thyroid and for Cushing's. Oddly, his T4 was practically zero, but this dog has not a smidge of lethargy - so he is now on thyroxine BID w/ food. After 2 tests, we have the thyroid med correct.

The urine-cortisol test came back abnormal - so while we dealt w/ his thyroid, we moved on to a wonderful Internist (who specializes in Cushing's after her own dog developed it years ago) for the Cushing's. His first ACTH result was "equivocal". His ultrasound showed that his adrenals looked perfect. So then we did the U of Tenn adrenal panel test and waited...sure enough, he has Atypical Cushing's. This has really been a journey...I didn't think we'd ever get a concise diagnosis, but I think the testing and re-testing and lotsa-time-to-diagnosis is pretty normal here, from what I've read around the internet.

I don't have the numbers w/ me at present - but his cortisol was w/in normal (just high normal). The hormone causing his issues is progesterone. We tried lignans - but not only did I not see any improvement, but also he is so allergic to it (as I'd feared). So, this week we started Lysodren 2x wk for 3 weeks, then go up to 3x wk if no results, then re-test at the appropriate time. We have prednisone at home, just in case.

Gave his first dose yesterday, and he seemed to do okay - but seemed a little low energy this morning.

So, I'm a little nervous giving this Lysodren - it just seems so scary giving a chemo drug. But I know he'll be okay and we'll get him through this. He is soooo young, and I don't know what that means in terms of survival (I don't believe the "2 year" thing) - I'm sort of guessing that since his adrenals look so great, maybe we caught this really early? I don't know. I just hope to learn more and support him the best way I can. Thanks for reading. :)

[BestBuddy]

Hi Ann and Wylie,
I have no knowledge of atypical or of lysodren but I just wanted to say hi. I may be the first to say welcome but I won't be the last.
Jenny

[Ann and Wylie]

Thanks for the welcome, Jenny! :):):)

[Harley PoMMom]

Hi Ann & Wylie,

Welcome to our cush-family, altho it is sad the circumstances that brought you here, I am glad you found this forum with these amazing and knowledgable people.

I also have an atypical cush-pup named Harley, his estradiol hormone is elevated. Ususally atypical cush-pups are treated with melatonin & lignans. Melatonin being the plain melatonin, not the fast-acting or rapid-release kind. This is the treatment Harley is on, the melatonin and lignans.

When you got your adrenal panel done at the UTK it should of came with an treatment option sheet attached, what did it say...it should have said something to the affect of... For elevated... some veterinarians consider items 2 or 3 and 4 of attached sheet. Various treatment option considerations are attached. Could you post that too. It does seem like you have done your research on cushings, not many people know about the UTK full adrenal panel, so kudo's to you for that, I didn't know about it until I came to this forum and was informed by these wonderful people.

Hang in there Ann, we are here for you and Wylie.

Lori

PS How did you know Wylie was allergic to the lignans? What symptoms did he show?

[Wylie's Mom]

Hi Wylie's Mom, Ann & Welcome!

I'm Wylie's Mom, Susy:D. My Wylie is also Atypical, but he's got regular Cushing's too. The lignans are usually suggested for elevated estradiol levels, so if that was within range for your Wylie, then the lignans probably wouldn't have been much use for him anyway. Here's a link to the treatment options sheet in case you don't have it, but you would need the option numbers that UTK suggets, as Lori described, for it to be of use:

http://www.vet.utk.edu/diagnostic/endocrinology/pdf/Steroid%20Profiles%20for%20Diagnosis%20of%20Atypic al%20Cushing's.pdf

We have many cases here that debunk the "2 year" thing, plus that was more specifically for regular Cushing's. I don't want to tell you to not worry, but if you are doing a maintenance dose of Lysodren, it shouldn't be as scary as doing a loading dose. Could you please tell us Wylie's weight and what dose of Lysodren he is taking? ...and don't forget the UTK result.

I think you're off to a great start compared to most of us when we first found this site;).

-Susy

[Ann and Wylie]

Thank you everyone for such a great welcome!!! :)

I have my UTK Panel in front of me (but I will have to get back w/ you on his Lysodren dose). He weighs about 7 pounds.


** = High values

Cortisol 63.2** (2-56.5) post: 140.6 (70.6-151.2)
Androst. .16 (.05-.36) post: .80 (.24-2.9)
Estradiol 57.8 (23.1-65.1) post: 46.9 (23.3-69.4)
Progest. .84** (.03-.17) post: 1.91** (.22-1.45)
17 OHP .46** (.08-.22) post: 2.13 (.25-2.63)
Aldoster. QNS (11-139.9) post: 267.7 (72.9-398.5)

The first route recommended (by UTK & our Internist) was melatonin and lignans - which we tried; I saw no change in symptoms, and he is also terribly allergic to flax (I've always thought he is one of those dogs who cannot convert the ALA into EPA/DHA since he also became itchy when I tried to give flax oil years ago, just as a supplement).

As for how I knew he was allergic - it was the usual allergy signs of paw licking/chewing, increased itching, and then he got an ear infection. The paw and itch stuff started within a few days of beginning the flax...which I was watching for after his previous reaction to flax oil. It's too bad this regimen didn't work for him, bc it seems so much gentler :(.

I gave him his first Lysodren dose on Tuesday night, and he seemed to do very well. He may have had slightly decreased energy the next morning, but that was about it. I will give him the 2nd dose tomorrow. I will post his dose when I get home later today. :)

Thanks everyone!

[Harley PoMMom]

Hi Ann,

The treatment of melatonin and lignans takes at least 2 - 3 months to see results, you do know that. I realize Wylie can't take the lignans but I wonder why melatonin wasn't tried first before starting the Lysodren. Just curious bc I believe the melatonin can lower the progesterone, if you give it enough time, the 2-3 months. Unless it's bc of the
ALA into EPA/DHA which I don't understand! :eek::confused::D

Lori

[Wylie's Mom]

Hi Ann,

Do you have an actual copy of the treatment numbers that UTK recommended? I'm curious because I thought lignans were primarily recommended for high estradiol levels, which your Wylie does not have. Also, did you stop the melatonin also?

-Susy

[Wylie's Mom]

Hi Lori,

ALA (Alpha-Linolenic Acid)
EPA (EicosoPentaenoic Acid)
DHA (DocosaHexaenoic Acid)

They're all Omega-3 Fatty Acids

http://drbenkim.com/articles-omega-3-fatty-acids.htm

-Susy

[Squirt's Mom]

Hi Ann,

A belated welcome to you and Wylie! :)

You have been given some good advise as usual and I have only one suggestion to add. If Wylie hasn't had an abdominal ultrasound, that is something I strongly recommend you have done. It will need to be done on a high resolution machine to give a better opportunity to see all the organs.

The reason I am so adamant about having the U/S done on our pups here is my own Squirt's story. She tested positive for PDH on every test she had done. When I had the UTK panel run, they suggested another U/S which we did. A splenic tumor was found and removed along with part of her spleen. Since the surgery, her cortisol has returned to normal! Her docs now say that the initial diagnosis of PDH is "highly questionable" as a result. Squirt is Atypical and is being treated for that with lignans and melatonin for now.

So not only did the U/S save her life, it has given us new hope in our battle with Cushing's.

I am so glad you found us and hope to learn more about you and your Wylie as time goes by.

Hugs,
Leslie and the girls

[Harley PoMMom]

Hi Lori,

ALA (Alpha-Linolenic Acid)
EPA (EicosoPentaenoic Acid)
DHA (DocosaHexaenoic Acid)

They're all Omega-3 Fatty Acids

http://drbenkim.com/articles-omega-3-fatty-acids.htm

-Susy

Thanks Susy, the article was very informative. I've heard of Omega-3 Fatty Acids, just never read about them...thanks again.:D...Lori

[Ann and Wylie]

Unless it's bc of the ALA into EPA/DHA which I don't understand! :eek::confused::D

A lot of dogs can't actually convert the ALA in flax into the usable forms of EPA/DHA (which are the fatty acids in fish oil, btw). For those dogs, while they'll still get the digestive benefits of the flax, they will not be able to use the fatty acids at all *and* they could also become itchy from the flax (but not always). There are some articles out there about this specific issue for dogs, if interested. This is one reason I always like to supplement dogs w/ fish oils and borage oil (GLA/LA) vs. flax. I think Dr. Messionier (sp?) has an article out there somewhere about it...


Do you have an actual copy of the treatment numbers that UTK recommended?

Dr. Oliver recommended 2-4 (melatonin and lignans). Wylie's Internist (who specializes in Cushing's, it's the majority of her practice) also agreed w/ that, knowing we may have to move to Lysodren.


You have been given some good advise as usual and I have only one suggestion to add. If Wylie hasn't had an abdominal ultrasound, that is something I strongly recommend you have done.

Yes - the U/S, along w/ the ACTH was done immediately and everything looked perfect (adrenals, kidneys, spleen, liver).

*****

Okay, I have Wylie's Lysodren dosage now too -- it is 32mg (compounded) - he weighs about 7 lbs. right now, btw. I gave him his 2nd dose this morning.

Thanks everyone for being there. :)

[Ann and Wylie]

Ahhh....forgot I had a question too....

Wylie's first dose of the Lysodren was Tuesday night and it went fine. However, last night (Friday) - he vomited around 7:30pm, and he *never* vomits. Now, I will say this was during his "cooling down" phase after a really long fetch session (he can fetch 24 hours a day :rolleyes:) -- so I wonder if let him overdo it too much? He really played hard and I wonder if, after he drank his water, was panting, and trying to cool down - if his tummy became nauseous. Though this has never happened before...only since his 1st ever Lysodren dose.

I don't know the 1/2 life of Lysodren (I'll look it up), but do you think the after effects of that first dose could have still been affecting him on Friday, making him still vulnerable? If yes, then I'll need to help him take it a little easy and shorten his fetch sessions a little.

[corgipallie]

A belated welcome from Pallie and me.

Pallie is atypical as well.

As far as Wylie not being able to digest the fatty acids--- I'm just wondering if that is from the flax in flaxseed oil, or perhaps he can digest pure lignans in either capsule form, or the new flax hulls that Dr. Oliver is now supporting and that I have switched Pallie to (I think Squirt and a few others are on them too).

Yes, lignans and melatonin have the most impact on estradiol levels, and Pallie also has other hormones elevated too, like Wylie.

If perhaps Wylie can digest the capsule lignans or the flax hulls, I personally would give that a fair chance to work and hold off on the lysodren unless other symptoms appear or regular cushings pops up too. It does take 2-3 months for the lignans and melatonin to really start making an impact, but most of us have seen results within a month.

Remember that lysodren erodes the outer cortex of the adrenal glands, so I am glad you got that ultrasound done.

It's a tough drug, and I know some dogs don't have an option but to use it for atypical cushings. But as I said, if perhaps the pure lignans or flax hulls would work, it may be worth a shot and use Lysodren as a last resort.

Steph and Pallie the wonder-corgi

[frijole]

"lysodren mom" here! :D

Even though you aren't doing a "load" like is done with pituitary cushings you are using lysodren help control cortisol and so it is important to understand what it is. In case you haven't seen it, here is info on the product in general. Ignore loading information but look for side effects, handling instructions etc. It is a chemo drug so spend some time (if you haven't) just so you know about it:

http://www.k9cushings.com/forum/showthread.php?t=193

Dogs that are on lysodren, especially in the beginning are tired. Again, this is a chemo drug and it takes a while for the body to get used to it. It gets a bad rap for being "toxic" but it has saved my dog and many many dogs so it can be a great drug. But you have to respect it and understand how it works.

I would definitely lay off the heavy workouts while your dog is adjusting to it. That doesn't mean NO exercise, it just means not as much. I would also not try any new foods or snacks or tablefood. All these things can cause stomach upset and you want the lysodren in the body not outside.

In addition to being a bit tired you may notice your dog's stomach growls or becomes flatulate. This is all normal although annoying. ;) Give the lysoren wrapped in cream cheese or peanutbutter AFTER the meal. This helps coat the stomach and prevents upset tummies.

The erosion of the adrenals might sound scary but it is what is reducing the cortisol levels. Wow - you have a 32 mg compounded pill. Bet those things are costly! :eek: I calculated the dosage level and it is about 10.5 mgs per kg of weight. That is slightly less than 1/2 the dosage that dogs get for loading.

Almost forgot - you asked about how long it stays within the system.. it continues to work for around 48 hrs. But the side effects could still be there. You might want to phone your vet and let her know what happened because one rule is to never give a sick dog lysodren. Vomit or diarrhea is a sign of too much of the drug. (that is why I suggest no new foods be introduced so you know what causes the vomiting)

I am not an expert in atypical cushings whatsoever but I am curious if your dog is allergic to the flax what you will have to do to lower the other values that are elevated? Lysodren will only help with the cortisol.

Good luck - Kim

[Harley PoMMom]

Dr. Oliver recommended 2-4 (melatonin and lignans). Wylie's Internist (who specializes in Cushing's, it's the majority of her practice) also agreed w/ that, knowing we may have to move to Lysodren.



Ann,

Could you answer my question in my last post about the melatonin, as to why it was not tried before starting the Lysodren.

Lori

[Ann and Wylie]

In addition to being a bit tired you may notice your dog's stomach growls or becomes flatulate. This is all normal although annoying. ;)

Wow - you have a 32 mg compounded pill. Bet those things are costly!

I am not an expert in atypical cushings whatsoever but I am curious if your dog is allergic to the flax what you will have to do to lower the other values that are elevated? Lysodren will only help with the cortisol.

Hi :). I have noticed some gurgling, but too bad as of yet. No gas so far....*crosses fingers* :p.

The compounded pills were $30 + $4 delivery for 30 pills - so for using them 2x or 3x per week, it's not too bad.

As I understand it, Lysodren is one of the drugs that lowers progesterone as well as cortisol. This is from UTK's site: "Lysodren effectively reduces cortisol, levels, but also those of androstenedione, progesterone and 17-hydroxyprogesterone. In Atypical Cushing’s disease, where cortisol levels are normal but intermediate and/or sex steroids are increased, treatment is often begun with melatonin and lignans. But, if clinical response over time is less than desired, some then add a maintenance dose of Lysodren to the melatonin/lignan treatment."


As far as Wylie not being able to digest the fatty acids--- I'm just wondering if that is from the flax in flaxseed oil, or perhaps he can digest pure lignans in either capsule form, or the new flax hulls that Dr. Oliver is now supporting and that I have switched Pallie to (I think Squirt and a few others are on them too).

Yes, those are the ones we tried - the hulls recommended by Dr. Oliver's sheet (flaxhulls.com). Not only was he allergic, but there was no change in symptoms.


Could you answer my question in my last post about the melatonin, as to why it was not tried before starting the Lysodren.

Sorry I missed your question :). He was already on Melatonin prior to being Dx w/ Cushing's. I had thought for a while that he had Alopecia and read that melatonin helps w/ that - so I had him already on the 3mg of melatonin.

[frijole]

Thanks for correcting me on that! See, ya learn something every day... thanks for the class on lysodren affecting the other hormones... I have only used it for 3 yrs now. :D I guess it hasn't lowered my dog's levels enough to have to supplement them. Interesting.

I am really surprised you are only paying a buck a pill. 3 yrs ago from the vet the cost was over $8 for 500 mgs pill. I buy online and it has inched its way up to $4.55 a pill. I know you only have 32 mgs but I assumed the compounding co would get you for their time more than that. Interesting.

Keep us posted on how it goes ok?

[di_tino]

Welcome to this site. Just over a week ago I found this site and I have to admit reading your story for the way it was found made me re-think what results (although positive) I just got about Kallie. She too has hypothyroidism and all the symptoms you mentioned. She is only 5 too. They tested for Cushings and thankfully said it's not that.
I have no "great advice" to offer since I'm still so new at this, but I wanted to welcome you and tell you that even though I've only been here a week you've met some very informative and supportive people here.

[Ann and Wylie]

I am really surprised you are only paying a buck a pill. 3 yrs ago from the vet the cost was over $8 for 500 mgs pill. I buy online and it has inched its way up to $4.55 a pill. I know you only have 32 mgs but I assumed the compounding co would get you for their time more than that. Interesting.

I just grabbed Wylie's prescrip. bottle. I don't know if this pharmacy would ship out of state (the $4 delivery was for local, bc they're kind of far from me) - or what the price would be for the dose you use. But at any rate, I wanted to give the contact info in case you're interested :):

Diamondback Drugs
7901 E. McDowell Rd.
Scottsdale, AZ 85257
480-946-2223 or 866-646-2223


Welcome to this site. Just over a week ago I found this site and I have to admit reading your story for the way it was found made me re-think what results (although positive) I just got about Kallie. She too has hypothyroidism and all the symptoms you mentioned. She is only 5 too. They tested for Cushings and thankfully said it's not that.

Thanks for the welcome! I have to say, I was really surprised bc of Wylie's age...but I guess it's not unheard of. It really threw me though bc I never would have guessed (based on his otherwise great health) that he had Cushing's.

[Harley PoMMom]

It really threw me though bc I never would have guessed (based on his otherwise great health) that he had Cushing's. I know exactly how you feel. My Harley will be 13 in Oct., when he first started displaying the signs of cushings-peeing and drinking ALOT, I thought he was diabetic, had him tested for that, test came back normal, but his liver enzymes were high, his vet thought cushings and said WHAT :eek::confused:

Everyday I thank God I found this forum and these amazing people.

Lori

[Ann and Wylie]

I know exactly how you feel. My Harley will be 13 in Oct., when he first started displaying the signs of cushings-peeing and drinking ALOT, I thought he was diabetic, had him tested for that, test came back normal, but his liver enzymes were high, his vet thought cushings and said WHAT :eek::confused:

Everyday I thank God I found this forum and these amazing people.

Lori

Lori - that's what I thought too! I forgot to mention in my first post that the Derm also said we had to rule out diabetes. And I actually thought *for sure* that's what he had. His main symptoms are the PD/PU (sooo excessive), and fur loss, skin issues. He does not have a pot belly - in fact, he has this athletic little body -- though I did notice muscle wasting the last several months, and couldn't figure that out either (but now it makes sense).

So yeah, I too was surprised at the diagnosis bc he "appears" so healthy and is so young.

There are some amazing people here - smart, supportive, helpful - this is a great place and I'm grateful to have found it. :)

[Harley PoMMom]

Yep, all pups are different, none of them read the rule book and follow the directions :)

Harley has the "pot-belly" and the ravenous appetite but no hair loss, he was getting the muscle loss, but since he's been on his treatment for almost 8 weeks that's stopped, in fact I was just telling them the other day that Harley has Yellow Pee :) We've haven't seen yellow pee from Harley since March. I thought I'd share that with you too, yellow pee is a big deal around here. His belly and appetite are almost normal, he gets tested next week to see where his estradiol level is, I am pretty sure it is down. Harley is almost back to his pre-cushings self, and boy does that make his Mom happy. :D

[Ann and Wylie]

Update for August 2009

I've had Wylie on Lysodren now - tried 2xweek for 3 weeks; then I tried 3x week - he is now on the 3rd week of 3xweek. I don't see any real change in his PU/PD - but I'm bringing him in, probably next week, for a stim to see what his levels indicate. So I'll re-post after results come in for the stim.

Other than that, not much is new....oh!...except that I gave him a new furcut - so now his fur blends in much nicer where it had been shaved for the ultrasound. He is sort of in a "puppy cut" and he feels very fashionable - he swears it shaves milliseconds off of his fetching speed. :p

[ventilate]

Hi;
dont want to throw a wrench into the gears but has your vet considered diabetes insipidus? It is when the dog has none or not enough of the anti diuretic hormone so can not concentrate their urine they drink and pee and drink and pee. Nike was diag with cushings in March all was perfect with treatment except her PU/PD. My vet thought of DI, but we wanted to try to tinker with her cortisol levels first, when her levels were verylow when she loaded her pu/pd seemed to get better for a couple days then it came back. Anyway he sent us to an IMS and she did some testing and brought her cortisol levels to 0.7with the same result it helped for a couple days then returned. So she had our reg vet do a water deprivation test which showed that she could not concentrate her urine even when dehydrated. Nike gets eyedrops of the synthetic ADH, it is called dDAVP. She gets one drop in the AM and one in the PM. My other Giant schnauzers urine had been dilute as well so my vet agreed to try the eye drops on him without doing the water dep test, his water uptake decreased and he was able to conentrate his urine with the drops. so I have 2 dogs with the rare condition of DI. I know of only 2 other dogs here that have it one is Brandis Molly and one was a young pup that the owner came here thinking it had cushings but I suggested DI, they tested and that is what it was. With the drops they are normal, if I happen to miss their eye or am late with the drops I know it as they both are in the water dish. DI does not need to be treated as long as the dog has unlimited access to water and of coarse to pee. I work 12.5 hrs and am gone from home from 0540 AM till 1930 so having 2 dogs one 90 and 115 lbs dogs that drink gallons and have no access to outside, not my idea of an option.
just a warning the drops are expensive I had been paying 120.00 for 5 ccs but now am paying half that at walgreens, had to pay the 45 for the club but paid for itself with the first perscription.
Anyway just something else to consider with the PU/PD not resolving
Sharon

[Ann and Wylie]

Sharon, thank you for the reply :)! He has been checked for DM, but not ever DI. I have left a message for Wylie's internist to see if we should test for this, as he'll be going in soon for a Panel anyway. :)

[ventilate]

It a long shot but my IMS told me it was unlikely that Nike had DI but when we ran out of options she and she tested for it and she has it. My reg vet said it would be one in a million that I would have 2 dogs with DI and I guess my dogs are one and two in a million as they both have it. So they may tell you it is very unlikely and it is, but believe me it is possible.
Let us know how it goes.
Sharon

[gpgscott]

Hi Ann and Wylie,

Well you have been through a lot and the testing for DI, I agree is a good idea.

It seems the reason you have moved to Lysodren so quickly rather than giving the melatonin/lignans treatment a chance is the elevation of progesterone which reponds to the Lysodren, you also have bordeline elevation of cortisol. And you are administering Lysodren at a very modest dose if I am reading properly approx 10mg/kg twice weekly. Some Atypical pup's get much more and do fine.

As you are figuring out, there is not a standard treatment, there is a standard protocol as a starting point but then frequently much tailoring has to be done for each pup.

You are off to a good start, and I would not be suprised to see the need to increase the Lysodren some down the road.

Please continue to post your progress.

Scott