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Genetic HPA Axis Dysfunction? Any Known Studies/Doctors? Need to help my daughter

Discussion in 'General ME/CFS Discussion' started by realjoy, Sep 16, 2014.

  1. realjoy

    realjoy

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    Hi All,

    I've been "living" with Fibromyalgia, ME/CFS, Hashimoto's, PCOS & adrenal insufficiency for years now. I was very healthy as a child. Problems initially started with puberty. I developed PCOS, hormone issues & accompanying depression. I was put on the pill. In mid-teens, I did catch Mono & a bad staph infection in my bloodstream. After that (not sure which one), I would have bouts of waking up with swollen glands in my throat and feeling sick, which would go away by the next day. Otherwise, I was fine.

    Then at 20, after a major emotional upset followed two weeks later by a still-undiagnosed illness (fever, bed-bound for over a week) I suddenly started putting on weight. I put on around 40lbs in 5 months with no change in diet or activity. I had never had weight problems in my entire life. A year after the emotional upset and illness I started noticing I had no energy and had some joint pain. Not normal at 21!

    Over the years I just continued to slowly degrade. Doctors blew me off & my then husband said I was a hypochondriac. I ended up believing them. I had a child at 23. I felt SO GOOD during my pregnancy! I had energy and felt great. I now suspect it was the higher levels of progesterone, which I later found out I don't make enough of (hormone pathway goes direction of adrenal hormones instead). Over the years, more weight...more fatigue.

    At 33 I was "accidentally" diagnosed with Hashimoto's and began thyroid replacement. A few years later, the fibromyalgia pain set in and then the chronic fatigue just seemed to get worse. I started having sleep issues (insomnia and/or feeling exhausted even after full night's sleep). The joint and muscle pain also worsened. I had to quit working. A few years later, my adrenals almost stop functioning. Very scary time. I was placed on replacement cortisol, which I still have to take.

    During all of this, I was fighting hard to make sure my daughter didn't develop what I had. My mother had PCOS & accompanying mood issues. My daughter was also very healthy UNTIL PUBERTY. Once that happened, she started gaining weight...started having bad depression & mood issues....never had normal cycles. She went on bio-identical progesterone like me, which helped. However, she was never "normal". By her late teens, her thyroid hormones were low (non-Hashimoto's). She went on thyroid replacement.

    Flash forward to this last spring. It is her final semester in college. She calls me one day very scared. She is dizzy, almost passing out (vision going black), feels 'disconnected' emotionally, has memory & cognitive issues and feels awful. The doctor does tests and her adrenals are not functioning well now. She has to go on replacement cortisol and salt water (low aldosterone). She had to fight hard her last semester to be able to graduate, and now has been apartment bound since May trying to "heal" her adrenals so she can work. She is only 23!!!

    I am scared to DEATH she will continue down my path and end up like all of us...with Fibro, ME/CFS, etc. I am now convinced that this is genetic in our cases. I see it now with problems my Mother had, what I've had and now in my daughter. She went down the EXACT same path as me, only hers seems accelerated. Has anyone here gone through this pattern? Or know of any doctors that are versed in this (genetic cause of HPA axis dysfunction) or at least studying it? I need to find a treatment for her so she can go live her life and not end up like me. Any help is GREATLY APPRECIATED!!!

    Thank you!

    P.S. I (we) have not yet done the 23andme testing, but do plan to.
     
    zzz likes this.
  2. Ema

    Ema Senior Member

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    Midwest USA
    Many people with adrenal insufficiency live very full active lives. Unfortunately most endocrinologists don't seem to be very well versed in treatment and many people suffer after diagnosis because of this. There may be other issues going on but I would start by visiting a dedicated AI group to find out if there are ways that you two could manage the disease better.

    http://addisonssupport.com

    I think it is certainly possible that there is a genetic component to these type of autoimmune diseases but I don't think it is well studied. And since it doesn't change the treatment, I'm not sure how much time I'd spend down that road.
     
    zzz likes this.
  3. realjoy

    realjoy

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    Thank you Ema :) Well, its not just AI. This seems to be a problem with the entire endocrine system. She can't live life at all. Can't go out with friends, can't even climb her stairs, shop for groceries, etc. She is a 23 year old new graduate who can't even work or live life. We are both following the best protocols...from meds & supplements to regimented sleep and strict diets. It has helped SOME, but certainly isn't fixing anything. Inside I feel that there is a base cause to the HPA Axis dysfunction that is causing all of our hormonal imbalances, and is the root cause of my fibro and cfs. I am hoping to find others who have this and/or at least leads on doctors who are researching this.
     
  4. Ema

    Ema Senior Member

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    Midwest USA
    I understand. I struggle with adrenal insufficiency, OI and thyroid issues as well which are certainly a part of ME/CFS for many of us as well.

    The base root cause is likely either autoimmune or infectious as that covers the majority of cases. A genetic predisposition is possible but again won't change treatment.

    Are you taking enough HC? Most endos insist 20 mg is sufficient but most active patients find it is not. Is your daughter on Florinef for the low aldosterone in sufficient amounts? Is she replacing all her electrolytes properly? Is her FT4 around 1.3 and FT3 in the top third of the range? How is her DHEAs level? Are sex hormones adequately replaced -- or overreplaced? It's easy to become progesterone dominant if using creams for years and the symptoms are similar to low progesterone. Are you gluten free?

    These are all issues I would look at before genetics. There's nothing to my knowledge on 23andme that has helped me in this regard though I've been happy to have the data for other investigations.
     
    helen1 likes this.
  5. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    @realjoy Have you followed up your own Hashi's issues? Are you on the correct rx? Had your reverse T3 tested? (rT3)
    There's a current Hashimoto's teleconference going on, I've got some mp3s from Thyroid Summit earlier this year...
    http://hashimotosinstitute.com/ Talks only available over 24 hr period.

    If it appears that her (and your) issues are autoimmune, low dose naltrexone is helping many of us. it works on balancing the immune system. People w/ MS go into remission, etc....I've started recently. there's an excellent yahoo group.

    I was helped immeasurably for a time by taking hypothalamus, adrenal, and pituitary glandulars. I no longer need them, thankfully. I also found, accidentally, that by detoxxing my adrenals cleared in a major way. I had no idea so many of my symptoms were based in my adrenals until that clearing. I used coffee enemas, have posted a blog entry about my protocol. I'm linking a couple excellent articles from adrenal experts.

    I wonder if B12 deficiency precedes the adrenal insufficiency. Watch also the accompanying, scary vid re B12. Unfortunately most of us have to become our own biochemist/healers. Knowledgeable practitioners are in short supply. I've compiled info re Freddd's Protocol for B12/folate in my signature. Not the place for you to begin, but possibly useful in time.

    Please break up your paragraphs in future posts. Hard to focus on so much in one. Thx.

    lowdosenaltrexone.org
    Diagnosing and Treating Vitamin B12 Deficiency‬
    http://www.youtube.com/watch?feature=player_detailpage&v=QqjyAeOLyKM

    http://blog.adrenalfatigue.org/ James L Wilson

    http://www.tuberose.com/Adrenal_Glands.html

    http://www.drlwilson.com/Articles/adrenal_burnout.htm

    http://www.adrenalfatigue.org/autoimmune-disease

    http://forums.phoenixrising.me/index.php?entries/my-detox-story-coffee-enemas.1616/ My CE Blog entry
     
    Last edited: Sep 17, 2014
    zzz likes this.

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