Anyone been tested for hemochromatosis...

Discussion in 'Fibromyalgia Main Forum' started by HurtsToMove, Jan 5, 2007.

  1. HurtsToMove

    HurtsToMove New Member

    which is iron overload. Blood tests would include serum iron, TIBC(total iron binding capacity), and serum ferritin.

    I ask because alot of FM symptoms are the same as early-stage iron overload. I'm gonna ask for these tests, since at least this disease has a proven treatment.....bloodletting.
  2. victoria

    victoria New Member

    this is a good thing to remind everyone of...

    my MIL had it but was not dx'd until she was in 70s. Once it was under control, she had no more aching joints and fatigue... we have our kids and my husband tested every so often just to make sure in particular since it is thought to be hereditary.

    Also, while it is usually older women and younger men who show up with it, it is not unheard of a 20 yo woman or a 60 yo man finding out they have it... and it's important to find out as the iron ends up in the liver and can kill you.

    BTW, you do not have to go thru your doctor to get tested, you can order blood tests directly from the American Hemochromatosis Society--
    http://www.americanhs.org/

    --as one needs more the blood levels of ferritin looked at. The AHS can tell you exactly what tests you need to rule it out.

    all the best,
    Victoria
  3. elliespad

    elliespad Member

    If you find elevated serum ferritin levels, you do not have to perform therapeutic phlebotomies. A simple extract from rice bran called phytic acid, or IP6, can serve as a very effective form of iron chelation that is non-toxic, inexpensive and can be done without a prescription
  4. spacee

    spacee Member

    You might ask over there. I know it is chit chat but they won't mind a medical question.

    Someone else has it too but I can't remember...he will.

    Spacee
  5. Cromwell

    Cromwell New Member

    Look for Mrdad, you will find him on chitchat board under Porchlight is On. He has this and has good advice yto give. A good way to handle this would be to be a blood donor. Especially if you are female and postmenopausal. They will never take my blood as the blood bank iron test always comes out too low because I drink tea. Next time no tea. Remember this for yourself.

    Annie Cromwell
    [This Message was Edited on 01/05/2007]
  6. balletdancer74

    balletdancer74 New Member

    Hi,

    Two years ago I started to develop severe nausea (not the FM and/or CFIDS/M.E. kind), diarrhea, non-stop fever despite alternating tylenol and advil. I hadn't felt that sick in years, and I've been to hell if you know what I mean like so many here.

    My test results showed that I had iron overload but was still severely anemic due to IRON deficiency instead of B12. Of course, the most logical explanation (whatever "logical" is w/ these illnesses) was that I might have hemolytic anemia (mom and brother have it - genetic) or hemochromotosis or hemosidorosis (spelled that wrong - sorry - chronic, incessant head pain does that to me). I was tested for all three and came back negative. Finally, after nearly four weeks, my fever spiked to 105.2 WITH advil in my system which led me to the ER. My hepatic/liver panel was through the roof! The doctor there couldn't understand how I could have so many contradictory test results. He wasn't that familiar with CFIDS/M.E. or FM.

    Long story shorter (grin), I finally went to see my gastroenterologist and after nursing my incessant fever and dehydration, we both chalked this episode of iron overload to a "feakish episode of M.E./CFIDS" which it was. Even when my hepatic panel dropped my iron overload did not so I went for a gastro test...name is escaping me but very common (not a barium enema) like a GI series. Everything was "normal" and I eventually healed. It took two, long months.

    A simple blood test can tell you if you have any of the three blood disorders I named above. I was tested as a child for hemolytic anemia and came back negative.

    It's always good to check if we have something or not, but a lot of times we have symptoms that "mimic" an actual disease even though we really do not have that disease.

    Best,
    LB32 (Leeza)
  7. ckball

    ckball New Member

    I was dx with hemochomotosis in 2003 at age 48. I had already been dx with FM, RA & CFS about a year before that.

    I was having so much fatique I started taking vitamins. I did get the ones with iron. A month later things were worse, I couldn't tell you what my name was or what 2+2 was.

    My 3 month checkup showed high ferritins. My Dr ordered the gene test first based on all the other numbers. Bingo, I have both genes. That means my mother and my father were both carriers.

    I started having phelbotomies once a week for 4 weeks, then every other week for another month, then once a month for a couple months, now it is almost been a year since my last one.

    The theory is women do not show symptoms until after menopause. Having a regular period is usually enough to keep the iron levels down.

    Since men do not have periods it is more serious for them, they die of it more often than women.

    The blood is disposed of it. It can not be used for donations.

    This is a manageable disease. I take the vit w/o iron, B-12 and 6's. I don't eat a lot of red meat, but I love a good filet mignon.

    I'm sure Mrdad will be along to share his story too. Good luck, Carla
  8. mrdad

    mrdad New Member


    My Friend Annie crom. suggested I come over to the Fibro
    Board and find you as I have Ironoverload and nmay be of
    help with your questions?

    Hemochromatosis is a genetic disorder of mainly Celtic or
    northern European origin. With this disorder, one does
    not dispose of iron leading to the possibility of serious
    health consequences. Ferriten as I understand it is the
    perpensity to retain iron. Normal levels should be 50 to
    150. My levels were 7200 causing liver Chirohsis. Iron
    blocks oxygen from entering the cell thus it does not
    "fire" correctly causing it to die! I would be surprised
    if at your age and being a women that you would be in a
    dangerous situation.

    It's a simple blood test to determine iron and ferriten
    levels and there is also a definitive genetic test also
    via the blood test. Suggest you see www.americanshs.org
    They are located in Florida and have lots of info. on the
    subject! Please contact me if' in I can be of help. My
    illness is now under control but still have to do blood
    draws every three months for life. (But it's ok. My Nurse
    is real cute!)

    Best Wishes,
    MRDAD aka JOE

  9. HurtsToMove

    HurtsToMove New Member

    for all of your replies! I don't really think I have this, but I DO feel it's worth getting the blood test, since I have quite a few of the symptoms.

    Every time I see my rheumy I bring a piece of paper with one or two new diseases I want ruled out. He probably thinks I'm nuts, but he smiles and says "OK" anyway--I'm lucky in that I found a compassionate doctor on my first try.