atypical cushings and SARDS

[maxie's mom1231]

my beloved daschund chihuahua cross started showing signs of excessive thurst and urinating at age 9. she also has inflammatory bowel (since i have had her at 8months) allergies that show up with bowel issues, low thyroid, and heart murmur. approx a year and a half ago she was tested and came up positive for atypical cushings. she was put on trilostane but couldn't tolerate it. things settled down for a while, but approximately a year and a half ago she started to lose her vision and was diagnosed with sards. she is now completely blind. over the last few months she has been panting heavily and started pacing on occasion. she is starting to have difficulty getting up on the bed, or up the stairs. i know i have to do something. i have been reading about other meds, melatonin adrenal harmony gold, etc. i would love to hear from other k9parents of atypical cushings pups so i know what to do. i have asked my vet to contact u tenn to see if we can consult with them ( it is a little far from massachusetts for regular visits and they do the test monitoring anyway)
any help or insight would be greatly appreciated. i am scared and feel like i am letting my girl down, and i don't want her to suffer or miss out on a wonderful life.

[Budsters Mom]

Hello and welcome:)
I am sorry for the reason that brought you here, but so glad you found us. You have come to the right place! There are many K9Cushing's angels standing by to help and stay with you every step of the way. They love details, test results, any information you can get your hands on. The more the better. We will do all we can to help. Others will be popping in to welcome you also. Be ready for lots of questions.;) So again,welcome to you and Maxie:)

Hugs,
Kathy

[frijole]

Hello from me as well. I am a bit confused as to why your vet had you on trilostane for atypical cushings as it isn't used for atypical, only traditional cushings. Hmmm.... I think we need you to start at the beginning and give us all the details, dates, treatments etc. We will want to know what tests have been done and the results - the reason for this is because this disease is tricky to diagnose and is often misdiagnosed.

Often dogs with Sards are misdiagnosed with cushings as they have similar symptoms. Here's a thread with info on SARDS that might be helpful:

http://www.k9cushings.com/forum/showthread.php?t=213

Back to cushings - there are different types of cushings. Atypical cushings is when the sex hormones are elevated. Treatment is typically limited to melatonin (an inexpensive pill you can buy at Walmart without a prescription) and lignans (others can help with this). Signs of atypical cushings often includes skin issues, rashes. In some cases lysodren is used to treat it as it will lower sex hormones. Trilostane not only isn't used, it can actually increase those hormones which is not a good thing. Testing to determine atypical cushings is done by a Lab at University of Tenneesee in Knoxvill (UTK). They are the only place the testing is done. All tests are sent there for review. You don't have to visit - it's all done by phone with your vet.

Full blown cushings is due to excess cortisol production. This is a result of either an adrenal tumor or a pituitary (near brain) tumor. Most common is pituitary. Here is some intro info on cushings for you.
http://www.k9cushings.com/forum/showthread.php?t=180


From the symptoms you described it sounds more like regular cushings but perhaps SARDS has something to do with it.

Please know that with treatment (not those drops you mentioned) cush dogs can lead a very normal happy life. But you will have to be the voice in this and that's why we are here - to help get people up to speed so you can ask the right questions and make sure your dog has an accurate diagnosis etc.

Kim

[maxie's mom1231]

Thank you so much for replying. My beloved 12.5 year old maxie has had her bloodwork sent to UTenn and it came back as atypical. they put her on trilostene and i stopped it as I could see she was worse. my vet admittedly hasn't had much experience with atypical cushings. maxie seemed better for a while witihout meds, but the sards happened- i took her to the (relatively) local specialty hospital and she was seen by an opthamologist and her retinogram showed a flat line on her retina activity and she said she had sards.
as for the meds, given maxie's ramped up symptoms of late, (weakness in hind legs, panting, pacing, in addition to the excessive drinking and urinating) i felt like we had to take action. i started websearch and came across a retrospective study out of U Tenn suggesting the use of prednisone, and i also found this website. i have found reference to using melatonin and lysodren but i am afraid to give maxie anything, including melatonin, without knowing what dose to try. she has other problems- low thyroid (last 3 years), inflammatory bowel(since i adopted her), and allergies as well as a heart murmur- all of which we have managed.

[maxie's mom1231]

thanks so much for the welcome! i hope i can find some help for my maxie and perhaps help others as well.

[Roxee's Dad]

Hi and a belated welcome to you and Maxie,


My beloved 12.5 year old maxie has had her bloodwork sent to UTenn and it came back as atypical

Did you actually get a copy of the U of T results? They usually also suggest treatment options. Or they used to. Which if my memory serves me correctly, is usually melatonin and lignans and possibly Lysodren.

If you don't have the copy, please ask your vet's office for one. We have a few here treating Atypical cushings, I am sure they will be stopping by to offer up their experiences.:)

[maxie's mom1231]

Thanks! I will check into this!

[molly muffin]

Hello and welcome from me too. I know I'm late. :) I do hope you got a chance to speak to your vet about getting a copy of the results from UotT. You should be able to get your sweet Maxie started on the lignans and melatonin soon, as it can take awhile for them to take affect.

Some of the others that have used them can help more with amount to give and the best type to buy for treatment. You can usually buy them online or at a health food store.

Sharlene and Molly muffin

[maxie's mom1231]

I called my vet and asked for a copy of them. hopefully will have them soon. in the meantime, I asked him to call u tenn to have a consult with someone there (happy to pay both of them to consult) and see what they recommend. I sent him a copy of the retrospective study for atypical cushings out of U tenn and also to see what they suggest. my vet spoke to a doc there, and all this time they told me it was atypical, and the guy at ut said while her hormone levels were high, her cortisol was astronomical, so it was either typical with hormone involvement, or borderline between the two. they suggested to try trilostene again, but they have changed the dosage recommendation- they had her on 30mg once a day previously, and she couldn't tolerate it, but the new recommendation for a dog her size (20 lbs) is 10 mg 2x per day. my vet also had experience with harmony adrenal gold as a more natural remedy, and thought we should try this first, and then if necessary try the revised dosage trilastene.
has anyone had experience with harmony adrenal gold? other than the website selling it with glowing reviews, all other website info came up less than enthusiastic.
thanks for all your help

[maxie's mom1231]

my vet has suggested adrenal harmony gold. has anyone tried it? other than the website that sells it which has glowing recommendations, the info I have turned up in searching the web has been less than glowing. any thoughts out there?

Moderator's note: I have merged this post into your original thread. We prefer to keep all posts on a pup in a single thread as it makes it easier for other members to refer back to the pup's history, if needed.

[molly muffin]

adrenal harmony gold use to go by the name of Supraglan. They discontinued that and now are selling this one.
Our administrators have contacted them, I am sure this is one of the ones contacted, and another one, trying to get information about any actual studies that have been done to show it works. They were not able to provide that information for Supraglan.
Some of the others will be along to chime in, but basically none of these have worked and you have to be aware that Adrenal Harmony Gold comes with a warning as possibly causing GI irritation
So if it were me, no I wouldn't use it. I'd go with traditional medicine that I know works.
I would also follow U of Tenn instructions. Interesting that they called it atypical With the high cortisol as they use to not call it atypial if cortisol was high along with the intermediary hormones.
Can't wait to see the report itself. :)

Sharlene and Molly Muffin

[frijole]

You are correct, Glynda contacted them. Since she is traveling right now I searched the forum and found this post from her to someone else:

The manufacturer of Supraglan, Petwellbeing, admitted to me in writing that they have done no clinical trials, or even informal testing, to prove the efficacy or safety of their product. Therefore, other than testimonials, there is no way to know whether it's good or bad for a dog. As for testimonials, we've had at least one member who sent in a rave testimonial for Supraglan but subsequently came here for help because it wasn't the super tonic she thought was going to help her dog. This company claims that it normalizes adrenal function for dogs with Addison's and Cushing's. This is an amazing and most ridiculous claim because these two conditions are polar opposites. The good news is that Supraglan has been around for a while and I haven't found any evidence of lawsuits against them.

Glynda

[maxie's mom1231]

Well I finally got maxie's test results from march 2012 and the suggested treatment plan-
these are the results
baseline post normal range
cortisol 21.0 212.8 65.-174
androstenedopne .48 8.13 .27-3.97
estradol 65.3 80.3 27.9-69.2
progesterone .21 2.55 .1-1.5
17 OH Progestereone .08 2.97 .4-1.62
aldosterone 20. 282.5 72.9-398.5

The suggested treament was to try melatonin and ignan and lysodren before trying triostane. my vet never gave me this and went right to the trilostane which maxie wasn't able to tolerate and then said, well just don't treat it. i am so angry- a year wasted while her vision went away with sards, and we didn't even try something non toxic like melatonin. i have started her on 3mg x2 a day and i have already seen improvement- she is panting less and she has lost a pound in two weeks while eating as she always has. i am now going to try to get her the hmr lignans- it says 10-40 per day for small to large dogs- i went online and it appears to only be sold in 40 mg capsules- i am not sure where to get it for a small (maxie is 21 pounds).
any thoughts?
all help is appreciated!

[Harley PoMMom]

To me it seems that Maxine's post cortisol is mildly elevated. How are her symptoms?

Here is a link to The University of Tennessee website regarding Lignans:http://www.vet.utk.edu/diagnostic/endocrinology/pdf/20120316-LIGNAN-Write-Up-Revision02.pdf

If you have any questions, please do ask. ;):)

Love and hugs, Lori