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Polyendocrine Syndrome

Discussion in 'Thyroid and Other Autoimmunity' started by greenpalm, Jun 8, 2013.

  1. greenpalm

    greenpalm Approved members

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    I'm cross posting this on the parents of children with type 1 forum:


    Does anyone know of any really good sources of lay information on polyglundular Autoimmune Syndrome (PGAS)?

    It's something I'm trying to understand better. There's not a lot out there.

    I just wrote a blog post about my husband having it, and our kids' risk, because he has Addison's & LADA. I had to discover this myself, it's not something his endocrinologist told him. In fact, he didn't even have an endocrinologist until the Addison's dx. For 7 years, we thought he was a weird type 2. (That's not true, I always always said he was a type 1. It made me crazy that he was supposed to be a type 2! There were so many reasons: He got sick so fast; and lost so much weight; he wasnt over weight to begin with; He has absolutely no one in his family with type 2, going back many generations; (his father's uncle had type 1 and died from it, of course his father is 89, so his uncle would have been diagnosed many years ago); he's Caucasian, etc

    But to be fair, he had some type 2 qualities. He was 34, he had reasonable luck with metformin for 7 years. I'd never heard it called LADA until our daughter's diagnosis. But we always told people he was type 1.5. Neither one of us liked thinking he was type 2. Fair or not, there is a stigma.

    Then, with the Addison's dx, he started seeing an endocrinologist, who tested for and found type 1 autoantibodies.

    Subsequently, our daughter's Type 1 diagnosis has further confirmed his autoimmune status, rather than type 2. Besides which, he's fond of pointing out that he's incredibly insulin sensitive, he barely takes any insulin. In fact, he's technically still in a honeymoon, after 14 years. But, that's LADA for you.

    I'm curious to understand it better, because based on this quote from Joslin:

    Quote:
    1. The way this is written, it sounds like you have to have thyroid disease, He doesn't have a thyroid issue (yet) is that a necessary component of a PGAS dx?

    2. It also says his children have a 1 in 2 chance of developing the syndrome, including type 1 diabetes. This makes me wonder if our daughter will probably also develop other autoimmune diseases, and that in fact she doesn't just have T1D, but rather this syndrome, of which T1D is one element. They tested her for thyroid antibodies at diagnosis - negative.

    I'm just curious to understand it better

    Thanks!
     
  2. Amy C.

    Amy C. Approved members

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    I have read on other postings that once you have one autoimmune disorder, you are likely to have another. My mother has several autoimmune disorders.

    Calling it Polyendocrine Syndrome is a label that many not use, even thought it may apply to them. Each problem needs to be dealt with and usually an endocrinologist is equipped to do this.
     
  3. greenpalm

    greenpalm Approved members

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    Thank you. I think my interest in calling it that stems from how it dramatically increases the heredity issue. I wish my husbands endocrinologist had told us how high our kids' odds are of getting T1D. If he'd called it by name, we might have Googled and learned.
     

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