Hemochromatosis..anyone heard of it?

Discussion in 'Fibromyalgia Main Forum' started by moab341, Feb 7, 2007.

  1. moab341

    moab341 New Member

    My sister in law's brother has had severe symptom's for a long time and his doc did a blood test and came up with this...it's causes your body to accumulate iron in the worng parts.
    He has to have a liver biopsy and if there is exessive build up there-he definatley has it. Treatment is bloodletting, giving blood often until the saturated iron levels are at a normal level.
    Symptoms are fatigue, abdominal pain, joint pain, slightly elevated liver enzymes, and impotence (which he does not have)
    Left unchecked it can cause major issues.
    He has been in agony for years and seen countless Drs. to try and find answers. He's afraid to get his hopes up and also afraid of what damage might be done already.

    My sister in law told me because he and I have a lot of the same symptoms...they have checked my liver before though.

    I just wanted to know if anyone knows anything about this?
  2. HurtsToMove

    HurtsToMove New Member

    a month or so ago. You should get your blood ferritin level checked, then you'll know for sure.

    I'd like to get the test, will probably ask for it when I get my normal bloodwork done.

    If you search on the board, you'll find alot of info. One of our members has the disease, another has a relative with it that found relief after treatment.
  3. a-b

    a-b New Member

    I was finally diagnosed with hemochromatosis last fall. I was convinced that there had to be something else going on with me besides FM. Bless my pc doc for testing my ferritin levels! I had the blood tests (dna) tests and found that I did have hemochromatosis. The liver biopsy is not the only way to diagnose it.

    Since then, my siblings are getting tested. One sister has it but just has to have her ferritin levels checked once a year. Another is being watched as she is borderline.

    I have had 4 or 5 phlebotomies (blood letting) and my ferretin level went from 400 to 42 now! Yeah! It's really not bad and they caught it before any major damage was done. Had CT of abdomen to check liver, etc. Will have another next fall as follow up.

    My joint pain has decreased a lot since my treatments. I am still very tired but think that is just the FM.


  4. moab341

    moab341 New Member

    I hope this is what is wrong with my sister in law's brother and that they can treat it. He's been miserable for a very long time. I hope he does not have FM on top of it all.
    I am going to a new Doc this month...I'm going to ask for the blood test even though they checked my liver.
  5. victoria

    victoria New Member

    there's the American Hemochromatosis Society www.americanhs.org/
    You can order the tests you need, which is more than the ferritin levels in your blood, directly thru them. Many doctors do NOT know to order the additional tests, just rely on the one.

    My MIL has this, didn't find out until she was in 70s - once she got her iron overload to normal, many of her aches/pains disappeared as well as unusual fatigue.

    One doesn't have to be postmenopausal if a woman to show signs, or young if a male to show signs - a female can be young, and a man can be old before showing signs, altho they're in the minority ... tresearchers feel there is a hereditary component, but not sure.

    We have had our kids tested, along with my husband, and remind them that it is something they'll have to keep watch over for the rest of their lives since it is now known on my husband's side.

    All the best,
    Victoria

  6. moab341

    moab341 New Member

    I'm keeping track of all this to take to my new Rhuemy on the 26th.
    Supposedly he's top gun in FM and we'll see if he knows about this.
    Thing is, if I order the tests from the web I will have to pay for them.
    If the Doc orders them, Insurance covers everything.
    I have a list a mile long to ask him.

    Thanks for all the input..this board has a wealth of information for which I am very grateful!