Discussions By Condition: Rare Disases

Polyglandular dysfunction or MENS?

Posted In: Rare Disases 0 Replies
  • Posted By: curediwish
  • July 2, 2009
  • 07:34 AM

I was dxed in 1992 with autoimmune polyglandular dysfunction per guidelines spelled out in the Merck manual, my doc showed me. I have patchy vitiligo with a large swatch of grey/black mucosal hyperpigmentation. My disease has progressed as described, in addition to hashis hypothyroid, I got prediabetes with acute steatohepatitis and now my blood cortisol and acth have been repeatedly low. I've been to five endos who will not order a 24 hour urine, and do not believe in treating pituitary caused adrenal problems. They prefer to wait until the adrenals are damaged. I have lotsof medical issues on ct and mris, so i would feel better if they would do a special one focusing on the glands, but they won't even review the films.

I was told it was obvious I had some kind of past attack on my adrenals causing the drastic pigment changes, but since they respond to cortrosyn stim (7 times the normal response) they won't do anything.

Now I found out about MENS. Due to the severity of problems I'm having now and new leg tremors, I am wondering how different in severity they are. I have high calcium, another reason they won't treat the adrenals, they say it sould be low. I have had no testing of hypothalmus though my rising temp is 95/96 F. I also have a retroaortic left renal vein which I read was linked with pheocytoma of adrenals, adrenal disease.

I can't even get an endo to look at the hypopigment, instead I got referred to a dermatologist for biopsies. I have been to er with adrenal crisis due to pred shots or dose packs given for sjogrens, though I do well with a month long 20mg taper, I feel best at 20mg of pred. or cortisol, dex is nice, but don't get radical symptoms, sometmes wonder if it works, even IV.

I wish they would put me on standard supplementation as the ups and downs are really messing me up. Can anyone fill me in on the severity of MENs? There does seem to be a genetic factor and my mom has a pancretic tumor, mine has never been imaged as they say they cant see it.

I have had lymphnodes and salivary glands removed more than once due to hyperplasia ad have small nodes on the thyroid. is hyperplasia in the lymph nodes and salivary glands any indication of hyperplasia in the endocrine glands?

PS I'm here to chat with anyone with similar problems. Thanks for the forum and any replies.

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