Zoey and atypical Cushings(new member)

[AmyW]

Hello everyone. I am new to this forum but have been reading some of the posts and I just know I can get some help here. Zoey is my 12 y/o Airedale terrier. Back in July she got her first ever UTI which I thought was very strange. She was drinking a lot of water at the time which the vet assured me was normal with a UTI. But the thirst continued and soon enough I noticed that she was awfully hungry as well and she didn't seem to want to walk(we are big hikers). I googled her symptoms and was convinced she had Cushings. My vet did a urine cortisol/creatinine test which was normal so she felt that Cushings was not the answer. Well, Zoey's symptoms continued and even worsened(wetting her bed at night etc) so they did a low dose dex test which came back abnormal. At this time my vet sent me to a specialist who did a urine protein/cortisol test, checked her BP, did an adrenal ultrasound and an ACTH stim test. All of these turned out normal. She ruled out Cushings with her testing and pretty much disregarded the abnormal low dose dex test as an outlier. She offered the panel done in Tennessee which came back with elevated estradiol, among a few other levels(I don't have the results in front of me). On Dec 18th Zoey started on melatonin 6 mg twice a day along with lignans 40 mg a day. I reduced the melatonin to 6 mg at night because she seemed so groggy on the higher dose. My first question is, how long does it take for these to work? How do you decide whether to add the other, stronger, meds? My heart aches because Zoey seems so different--she looks so much older and doesn't have the same spark in her eye that she used to have, and I miss the old her. Any thoughts or advice sure would be appreciated. I hate this disease.

[frijole]

Hello and welcome! Atypical cushing's as you know is not the same thing as cushing's because cortisol is not elevated. There is controversy - varying schools of thought as to whether or not atypical cushings even exists. :) This is because the world expert on it did not do published validated studies. Dr Oliver passed away and he was truly the voice of this 'disease'. Here is a link with information but unfortuneately he is no longer available as a resource. He did speak to alot of our members.

http://www.k9cushings.com/forum/showthread.php?t=198

The low dose dex suppression test often has false positives when other things are going on (illnesses). There are other diseases with the same symptoms of cushings that you might want to check out/rule out if you haven't already: diabetes, diabetes insipidus, hypothyroidism

When you say the ultrasound ruled out cushings - can you get the write up and say that there are no tumors present? We've had members that were misdiagnosed and there were tumors on organs that once removed, all symptoms went away.

Lastly re the melatonin - it takes a while for it to work - seems like I remember some saying months but hopefully someone will verify that. Hope this is helpful. Glad you found us.

Kim

[SoggyDoggy]

I just wanted to say Hi and welcome to this place, even if the circumstances that bought you here suck. There are a lot of very knowledgeable people here who will surely be able to help you out and give you the advice and reassurance you are after - wish I was one! :D I can't be of any use to you in answering your questions as I have no experience in this field, but someone who does will definitely be along to hold your hand and get you through this.

One resident expert in particular - Leslie - has a pup with Atypical cushing's (called Squirt), so I'm sure she will stop by soon to give you some answers and observations. There are others as well who have an amazing store of knowledge (Like Kim above) so take a deep breath and start forming the thousands of questions to ask.

Just remember, no question is too small, and if you think of it - ask it!

[addy]

Hi and Welcome,

There is some thought that atypical Cushings eventually turns into Cushings with elevated cortsiol. My pup has elevated estradiol, as well as cortisol. We did melatonin and lignans in the very beginning as she had minimal symptoms at the time despite the high cortisol and it took about three months for the melatonin and lignans to bring her estradiol down to normal. Sometimes Dr. Oliver would suggest a maintenance dose of lysodren be added. I am sure Leslie will stop by to discuss her pup and experience.

As Kim mentioned, if you can round up the test results that would great. The more you can tell us, the better.

I am glad you found us.

[molly muffin]

Hello and welcome from me too!

I'm let others who are more knowledgeable about atypical cushings, answer you about that.
I'll just send you a big hug and a welcome for now. :)

Sharlene and Molly Muffin

[Squirt's Mom]

Hi and welcome to you and Zoey! :)

Squirt is my baby....however, I'm no expert but am happy to share what I understand and our experiences with you. ;)

Atypical is a form of Cushing's in which the cortisol is normal but one or more of the sex, or intermediate, hormones are elevated. These elevations can cause the same signs seen with elevated cortisol...or may cause little to no signs. The intermediate hormones involved in Atypical are Estradiol, Androstenedione, 17-Hydroxyprogesterone, Progesterone and Aldosterone. The treatment protocol of flax lignans and melatonin can address all of these, and is especially geared toward the estradiol which can be produced outside the adrenal glands in areas like hair follicle, fatty tissues, etc. It takes 3-4 months to see if the lignans and melatonin will be effective on their own. If they are not effective in lowering the intermediates, then you will start a maintenance dose of Lysodren - NO loading phase. My Squirt was on the lignans and melatonin alone for several years before jer cortisol began to rise and she needed the Lyso maintenance added.

It is important that the lignans and melatonin be given as recommended by UTK - ie lignans once a day, melatonin twice a day. Some pups do become sleepy at first on the melatonin but they usually adjust fairly quickly. How much does Zoey weigh? Squirt has been between 13-15 lbs and takes 3mg 2x/day. You may want to start Zoey on 3mg twice a day and once she is adjusted, increase to the 6mg/day - IF that is the dose she is supposed to be on (why I asked her weight ;)).

The lignans are typically standardized to a certain percentage. The active ingredient in the lignans that works on our babies is called SDG. The SDG amount is what we work with, not the mgs shown on the bottle. For example, a 40mg capsule of lignans standardized to 20% means there is only 20% of the SDG in that 40mg capsule. So one 40mg capsule is providing only 8mg of SDG - the ingredient we want.

20% is 1/5 of 100% (100 divided by 20 = 5)
40 mg divided by 5 = 8 mg
Each 40 mg capsule contains 8 mg lignans (SGD)

So be sure that if Zoey is getting the correct amount of SDG regardless of the total mg/per capsule stated on the bottle. ;)

If your pup has to get Cushing's, Atypical is one of the easiest and least expensive forms to treat...tho it does require a great deal of patience in the beginning to give the treatment time to go to work. The initial treatment, lignans and melatonin, is quite benign and if the Lyso is needed later, you don't have to face the loading phase. Some vets will choose to treat with Trilostane if the cortisol starts to rise but UTK has shown that Trilo actually causes elevations in some of the intermediates and they recommend the Lyso for these babies. There is a great deal of controversy over Atypical and it's treatments but I came along under Dr. Oliver's teachings and I have chosen to believe him over others until, IF, his work is disproved. So far, that faith has served my Squirt very well. She was diagnosed with Atypical in '09 and will be 15 in Feb. this year. ;)

If Zoey is leaking at nite as opposed to actually having accidents, it may be that she is experiencing simple incontinence - not uncommon in us older broads. :p Squirt started that earlier this year and has been on Proin to control it. The Proin has stopped this completely with no discernible side effects. You might talk to your vet about this possibility.

When you get the actual tests results and post them here, that will help us get a clearer picture of what is going on with your sweet girl and perhaps open up some other avenues to look into so I look forward to seeing those posted. The more you can tell us about Zoey's medical history, the better - we LOVE details so don't worry about the length of your posts.

I'm glad you found us and look forward to learning more as time passes. I also want you to know that you and Zoey are now part of our family here and you will never be alone. We will be by your side every step of the way.

Hugs,
Leslie and the gang

[AmyW]

Thank you so much for the warm welcome. What a great community this is.

I will do my best to get Zoey's test results. The ultrasound did not show any tumors. My vet has been working hard for me and Zoey and has consulted with various endocrinologists. She explained how there is a controversy as to whether atypical is a real entity or not. The specialist that I took Zoey to does believe it is its own disease and treats dogs with melatonin and lignans followed by Lysodren if the symptoms do not resolve. She does not take Lysodren lightly and seems to want to talk you out of using it. One of the endocrinologists my vet spoke with does not think atypical is a real disease and believes in treating these dogs with Trilostane. So that leaves me not knowing what the heck to do. Zoey is quite symptomatic with the XS hunger and thirst, thinned coat but worst of all is the muscle weakness and general lethargy. I mentioned how Zo and I used to hike in the woods a lot and now when I take her to the park she barely wants to walk at all. She has just lost her spark and it breaks my heart. I don't totally understand her not wanting to walk--is it from the weakness or what?

Thank you for explaining the lignans to me. I am giving Zoey HMR lignans. And I did change the melatonin dosage to twice a day as you suggested.

Thank you again so much to all who took the time to reply. It helps to feel not so alone in this and be with people who know how it is to have a dog with this condition.

[AmyW]

Zoey is supposed to start Trilostane today.I am scared to death to give her the medication. She weighs about 96 lbs(gained a lot of weight with her Cushings). She is very symptomatic with PU/PD, excessive hunger, muscle wasting, lethargy etc. She is to start on 40 mg twice a day. I was wondering whether most people get prednisone to have on hand in case of an emergency. Also, what should I look for as far as side effects? I am so nervous about using this drug. I will be home with her for the next 4 days but on Monday I will have to go back to work and I am scared to leave her without supervision. Is it ok to leave them after they start the drug? So many questions...

[mytil]

Hi and welcome to our site. I am sorry you are having to deal with Cushing's.

Yes, you should have prednisone on hand. The dosage seems about right for your Zoey's weight - it is always best to start low and increase as needed.

Here is a link that you may not have read through yet about Trilostane (http://www.k9cushings.com/forum/showthread.php?t=185).

Also, when you can, post the results of the tests performed to come to this diagnosis (LDDS, ACTH, UC:CR and maybe an ultrasound was included?). Also, here is a link that describes Cushing's very well - http://www.k9cushings.com/forum/showthread.php?t=180 - the more you know the better you can ease this fear.

Of course we are all here to help you and Zoey with this.
Terry

[AmyW]

Thank you. She had her first dose this morning so here we go. Headed up to the vet to get some pred to have on hand just in case.

[molly muffin]

Did she have an ACTH test before starting the vetroyl? Is so what were the results of that. Keep in mind that vetroyl is to lower the cortisol in her body, so you'll need to know what that level started out at and then you should be doing an ACTH in about 12 - 14 days after starting on vetroyl. Dechra is now saying that this could be as soon as 10 days even.
If you see any abnormal signs, such as lethargy, no eating, diarrhea and/or vomiting, then get an ACTH test done immediately.
Just keep an eye on Zoey and you'll probably know if anything changes. You hopefully will see a reduction in hunger and thirst to a more normal rate. The coat and muscle wastage are the last thing to see improvements in normally. Slow steady exercise to try and build up the muscles to begin with seems to have worked for some members.
Every dog is different and can respond differently to the medication. So while we do have some standards to go by, there is no way to know for sure what dose will work best. The general rule now is 1mg/1lb for dosage to start at.

Hang in there!
Sharlene and Molly Muffin

[molly muffin]

Hi. I just wanted to check in and see how you and Zoey are doing. Are you seeing any improvements?
Hope things are going well.

Let us know when you have a chance.

hugs,
Sharlene and Molly Muffin