CFS maybe iron overload (hemochromatosis)

Discussion in 'Fibromyalgia Main Forum' started by WendyC, Feb 15, 2009.

  1. WendyC

    WendyC New Member

    Hi everyone,

    I haven't posted in quite a while but feel compelled to do so now. It appears that my CFS/FM are in reality iron overload disease (hemochromatosis). Exact same symptoms. Same issues with mitochrondrial malfunction, glutathione depletion, methylation deregulation, oxidative stress and reduced growth hormone. There are four known types of hemochromatosis and the DNA tests are rather inadequate (I tested negative 5 years ago but now am positive). Defects in C282Y, H63Dm, A77D, and TFR2. No one tests for all known mutations. Most are recessive except for A77D (ferroportin disease) which has only recently been discovered. Interestingly, all the supplements that I am on that have helped somewhat also help with all the issues stated above with iron overload. I would encourage everyone to ask their doctor to test their iron levels not with a standard test but for: 1.serum iron, 2. TIBC (total iron binding capasity), 3. serum ferritin 4. UIBC (unbound iron binding capasity) 5. NTBI (non transferrin bound iron).

    Hemochromatosis increases cancer, cardiac myopathy (implicated in CFS), alzheimers and bipolar disorder. All in my family.

    Good luck to all, best wishes for a healthy and energetic future.

  2. victoria

    victoria New Member

    MrDad is one that's around here that also has it. My MIL had it too, it's amazing how much it affected her.

    We had my DH and our kids, and me, checked; thankfully none of us have it. Then again, that would've been an easier answer, so I'm not sure about being happy that my son doesn't have it rather than Lyme, or that I don't have it rather than 'whatever' I have ("CFS" tho my fatigue symptoms are the same as my son's).

    I am very glad you found out about it, so many doctors know little to nothing about it; the only reason my MIL was checked was because a doctor in the group practice she went to had just died from it at 45. It's important that -whether you're female or male - to remember that you can get symptoms at any age, altho generally women don't develop symptoms til later.

    all the best,

  3. ladybugmandy

    ladybugmandy Member

    can you have the disease and still have low serum ferritin?
  4. simonedb

    simonedb Member

    what do you do to treat it?
  5. victoria

    victoria New Member

    There are specific tests you need to do to rule it out (or in), more than serum ferritin. You can go to the American Hemochromatosis Society to find out, and can also order the tests directly from them which is what we did. It saved us a lot of money compared to what we would've paid, as only my husband had insurance. Here's their site:

    The treatment is rather easy: you just have blood drawn regularly until the iron comes down to normal ranges... then usually most, I think, only need to get checked and have blood taken as needed.

    It took my MIL about 6-8 months to stabilize if I remember right, and as time passed she needed to have blood drawn less and less frequently. I'm sure it varies tho according to the patient.

    If you find you have it, you should let your relatives know about it if related directly to you, especially your kids and siblings, as it is considered usually hereditary.... my MIL's mother died when she was a baby, so we don't know anything about her family.

    Hope that helps...

    all the best,

    [This Message was Edited on 02/15/2009]
  6. WendyC

    WendyC New Member

    Hi Victoria, glad to hear that your Dad and MIL were diagnosed early. Sorry I logged off early. I am really sick and have terrible intestinal issues. You gave good advice for testing. Look at the blood tests that I listed. It is recommended that your doctor do all of them. As far as DNA tests, there are over 40 gene mutations and no tests for all so a Negative is not necessarily a negative. Also the newest discovery is ferroportin (inability to get rid of iron as opposed to absorbing too much iron) and I think that it is not widely tested. Some people also have idiopathic hemochromatosis (unknown origin) and there are other iron disorders like hepatic iron overload that are not technically hemochromatosis. It is best to go to a hematologist or in my case my endochronologist. My endo just had to figure out why my pituitary, adrenals and thyroid were shot. Iron over load has also been implicated in MS, Lupus, Alzheimers and bipolar. I will check back periodically but am bedridden right now.