Wylie has Hypothyroid, Pyoderma, and maybe Cushing's Disease

[Jemma]

Anne, he is going to be fine. In my heart I think it's just thyroid. The thyroid gland controls so much of our bodily functions. When a thyroid goes off so does everything else. Maybe put him on the thyroid and wait a few months and re-test. Things might show much improvement by then. I never believe in treating too many things at once. Thyroid is a definite so you know that. Maybe start to treat the known first? Perhaps everything will follow after that.
Sending a big MUAH to you and Wylie

Carol and Jemma

[Patti]

Originally Posted by Wylie's Mom

I don't even know . I did ask "Wouldn't his adrenals be slightly hypertrophied if he has pituitary based Cushing's?" -- and she said, "no, not necessarily" -- so even his perfect adrenals don't rule-out the pituitary based Cushing's. Dang it. She basically couldn't tell me a thing either way...so frustrating.

Sorry to hear you didn't get a difinitive answer. Mays's adrenal glands were normal too but she had Cushings so that does not rule it out. I will try and find Maya's records to see if I can find her test results.

[Patti]

Ann I just found Maya's Low dose Dex test results and the base line was 115, after 4 hours it was 72 and after 8 hours 56. Normal range says 0-30 so Maya was a definite Cushings dog. Is there a reason they are holding off on the LDD test? It may be faster than waiting 2 more weeks for the U of T to review.

[bchgirl]

Originally Posted by Wylie's Mom

UPDATE

Well, no definitive diagnosis...I'm kind of upset . Wylie's ACTH number came back as 19.2 -- if it was above 22, they would've said Cushing's - if it had been below 18 - they would've said probably not Cushings. He's in the range they call "equivocal" - meaning he may or may not have it. His "resting cortisol" (before the test started) was 7.8 - normal is 2-6. So his cortisol is elevated, but they still can't be definitive about it.

Bc Cushing's can be so tough to diagnose, they held some of his blood back in case something like this happened. So now, they are sending that blood to the Univ. of Tennessee - and they will do a study on all of his sex hormones and other hormones to see if this cortisol elevation is due to his sex hormones or something else. Then, we may *still* have to do the Low Dose Dexamethasone Test after we get the blood work back.

It takes 10-14 days to hear back from the U of Tenn. - and then we go from there. In the meantime, she wants me to collect another home-urine to test cortisol-creatinine again.

I will say he is drinking/peeing slightly less now that he is on the thyroid...but it is still excessive, just not as much as before.

Any thoughts on the cortisol?

Thanks for all your well wishes ....we now have to wait up to 2 weeks more...I just hate this not knowing.

Yeah and I sent you a link last week.

[Wylie's Mom]

Originally Posted by Patti

Ann I just found Maya's Low dose Dex test results and the base line was 115, after 4 hours it was 72 and after 8 hours 56. Normal range says 0-30 so Maya was a definite Cushings dog. Is there a reason they are holding off on the LDD test? It may be faster than waiting 2 more weeks for the U of T to review.

I bet I could do it now if I wanted...I think they really want to see if the other tests provide more guidance on where to go next though, first. The panel to U of T is $300, so maybe they're trying to avoid my spending more money until they evaluate results? Ugh. I don't know . I will do the urine cortisol as soon as I can catch it in the morning...and then if that comes back high right away yet again...then maybe they should do the LDD right away...? Maybe they suspect the LDD would also be inconclusive..? I don't know...

Originally Posted by bchgirl

Yeah and I sent you a link last week.

- Could you PLEASE inform Wylie of your diagnosis so he will get on with it??? He is really draining his Mama's funds w/ all of this testing.

[grego160]

You and Wylie are in my prayers.

[manolos mom]

Ann, you guys are in our prayers......Lissette

[cobird2]

I'm sorry to hear about the complicated medical issues your little guy is having and hope you will find a solution very quickly.

[LuvMySissy]

It is so frustrating to not have answers yet!! Hoping the two weeks goes by quickly so you can find out it is his thyroid!!!!!

[bchgirl]

Originally Posted by Wylie's Mom

- Could you PLEASE inform Wylie of your diagnosis so he will get on with it??? He is really draining his Mama's funds w/ all of this testing.

I still think it's all related to the thyroid....give his body a chance to adapt to the meds.

[Wylie's Mom]

Okay...I think I now understand better as to why they want to send Wylie's blood to U of T. This is a techy article and kind of annoying...but I just want to share as I'm learning here in case anyone else goes through this same thing.

They are now looking specifically for atypical Cushing's -- here is the differentiation:

**Cushing's syndrome refers to hyperadrenocorticism with excess production of cortisol.

**Atypical Cushing's disease refers to hyperadrenocorticism caused by increased levels of intermediate adrenal steroids (aka sex steroids.)

So, they are looking at the 2nd one in Wylie's case to see if this due to sex hormones.

(to give you a sense of his polyuria - in the last 1.5 hrs, he has peed 5 times...and it's only 7pm...I think I was imagining/hoping the peeing was getting better )

[wemple2]

Oh geez, still nothing conclusive huh? I'd like to think it's only hypothyroidism...but then in the back of my mind, I'm wondering but what if?
I myself went through testing for Cushing's...and it was after a bout of subacute thyroiditis/T3 toxicosis...after my thyroid finally burnt itself out and I was put on replacement therapy. I kept waiting to feel better, my test results were better, but I still felt awful. But then after a long while...my body figured it out...started feeling better...and of course there was no diagnosis of Cushing's. Sometimes, even though blood test levels are improved, it still takes awhile for the body/brain to realize it.
I really, really do wish Wylie all the best in the world...I'll keep him in my thoughts and prayers.

[Wylie's Mom]

Originally Posted by bchgirl

I still think it's all related to the thyroid....give his body a chance to adapt to the meds.

I still cannot wait to hear you say, in largest and most colorful font possible, I TOLD YOU SO!

[wemple2]

Originally Posted by Wylie's Mom

Okay...I think I now understand better as to why they want to send Wylie's blood to U of T. This is a techy article and kind of annoying...but I just want to share as I'm learning here in case anyone else goes through this same thing.

They are now looking specifically for atypical Cushing's -- here is the differentiation:

**Cushing's syndrome refers to hyperadrenocorticism with excess production of cortisol.

**Atypical Cushing's disease refers to hyperadrenocorticism caused by increased levels of intermediate adrenal steroids (aka sex steroids.)

So, they are looking at the 2nd one in Wylie's case to see if this due to sex hormones.

(to give you a sense of his polyuria - in the last 1.5 hrs, he has peed 5 times...and it's only 7pm...I think I was imagining/hoping the peeing was getting better )

Interesting...I can see why they would want to run the test.
I thought he should be urinating more to get rid of fluid from hypothyroidism...am I wrong again...LOL!!!

[Wylie's Mom]

Originally Posted by wemple2

Oh geez, still nothing conclusive huh? I'd like to think it's only hypothyroidism...but then in the back of my mind, I'm wondering but what if?
I myself went through testing for Cushing's...and it was after a bout of subacute thyroiditis/T3 toxicosis...after my thyroid finally burnt itself out and I was put on replacement therapy. I kept waiting to feel better, my test results were better, but I still felt awful. But then after a long while...my body figured it out...started feeling better...and of course there was no diagnosis of Cushing's. Sometimes, even though blood test levels are improved, it still takes awhile for the body/brain to realize it.
I really, really do wish Wylie all the best in the world...I'll keep him in my thoughts and prayers.

Thank you so much! See...this makes me wonder too, like Deb is saying...maybe even this next test will be inconclusive and it's just a matter of time since his body has been under such stress. I just thought I'd see a quick improvement in the drinking/peeing, ya know? But who knows...maybe right now he is drinking from habit as well...

Omg, my brain is driving me NUTS...