Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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  • I'm on week 4 of weekly phlebotomies and I'm exhausted. I'm scheduled for surgery on March 23, 2017 to repair a hiatal hernia and to repair the valve that connects the esophagus to the stomach. I have severe GERD and have developed Barret's esophagus as a result. Do you think I should postpone the surgery until all my strength returns? I'm at 180 ferritin right now--have to get to 50. In 3 phlebs...
  • ReggieL

    Muscle pain, weakness, swelling after Phlebotomy

    5
    My hubby is having a terrible time.  Diagnosed with Hemoc, he had 5 phlebotomies in 5 weeks.  He has now had 9 total in 3 months but he has extreme muscle pain in his upper back and arms.  He can't lift his arms or turn over at night.  He also has pain in the flesh of his inner knees.  His hands have swollen (comes and goes now) since 1/2 hour after his last phlebotomy.  There doesn't seem...
  • Kimimoto

    new to group, looking for some answers

    4
    Hi! I'm a 34 year old female who was diagnosed a year ago and I’m still trying to figure all of this out. I've been experiencing full body muscle, joint, occasional nerve pain and extreme fatigue for years. I finally found a naturopath who though to check my iron. It's an amazing feeling to be validated and to have an explanation for all this pain. I’m not crazy!! I started getting phlebotomy...
  • kati612

    General Questions

    2
    I have been diagnosed with HH and I'm establishing care with a Hemotologist next week.My brother has HH and has alot of organ damage because of how long it took for them to diagnose him.When I had a test in November:Iron 135UIBC 201Iron Binding Capacity 336Iron % Saturation 40%Ferritin 308I have been having some muscle weakness, just not feeling like myself, slight vision issues, etc.  Are these...
  • hemoat26

    What levels did you start phlebotomy at?

    2
    Hi All - I'm interested in learning about when others decided to start phlebotomy as I was recently given the choice to start phlebotomy now or continue to just monitor it (I've opted for monitoring). I feel like it's too soon for me to start treatments as my levels aren't too high yet, and my liver levels are perfect.A little more of a background: I'm a 30 year old female and was diagnosed with...
  • HiFe

    Arthritis and need for multiple joint replacements

    1
    Hi everyone,I am new to the group. I was diagnosed with HH in 2009 and went through phlebotomy every 3 weeks for a year and a half. My labs are very stable now and I haven't needed phlebotomy for the past 2 years. I feel much better than I did when diagnosed, except for my joints and muscles. I was diagnosed with Avascular Necrosis of both femurs ( lost blood supply to top of femurs) in 2014 and...
  • Peg73

    Just Diagnosed

    3
    Greetings. I am a 61 year old female who was just diagnosed with hemochromatosis today. I actually owe my diagnosis to my son.  He was recently told he had this disease and his family was encouraged to be tested and yep, I've got it as well. My question to this group is - will the phlebotomy treatments make me feel better? Or is this procedure just to lower my levels?  I'm constantly...
  • Star12

    Newly Diagnosed with HHC

    4
    I am a 57 year old female. I was just diagnosed with HHC. My fasting Ferritin level about a month ago was 472. It is now at 400. (changed my diet up a bit.) I am starting phlebotomy next week. So far, I am in pretty good shape, I thinks my Dr discovered this early enough, everything else in my CBC panel is good. I do have my foggy tired moments and Palindromic Rhuematism (auto-immune disease,...
  • baldguy79

    Tea

    7
    Do caffeine free teas have tannins? If so which types? Thanks.
  • abookreader

    Question on the frequency of phlebotomies.

    3
    Hello,I have the homozygous c282y gene and I have HH. I've had 3 phlebs in since June 20th of this year - about once every 8 weeks per my doctors orders. My iron level has come down from 218 to 164 (the healthy range Ive been told is 50-150) so I am close there. Iron saturation is 53% so I'm almost in range on that as well. Only 3% off from normal.My ferritin however was 597 and rose to 602 as of...
  • ironmike

    Hemochromatosis and Lyme Disease

    5
    I wanted to post about my health history with both HH and Chronic Lyme Disease to share information with others with the same conditions.  I'm male, and was 53 in Sept. 2014 when I had a wellness test run which included ferritin - high at 1802 ng/ml.  Unfortunately the doctor only focused on other numbers that were out of range and not ferritin.  A couple months later I researched potential...
  • healthymama

    Spouse with HHC

    4
    Diagnosed with hemochromatsosis 2 years ago. Went through 13 phlebotomies. I know he is ill but don't know if some of his habits help or hurt him. He continues to work, a desk job, but needs a sick day every couple of weeks. He is always complaining of some physical issue . Never wants to go anywhere. No social interest. Little to no activity He claims that exercises causes him to hurt since the...
  • najarra

    Questions??

    6
    i was just diagnosed.  My doctor told me to donate blood. Will this relieve pain? I have terrible muscle aches and weakness, extreme exhaustion, irritable stomach and digestion. Almost any movement causes tension in my head. Does this sound like stuff that can be caused by hemochromatosis? For years I've been telling my doctors that I feel good during my period and for about ten days after then...
  • gibsoncello

    ferritin 2657

    1
    I just joined this group. My wife was diagnosed in 2007 and her ferritin was 2657....many, many phlebotomies.  We have had a hell of a time.
  • kati612

    Muscle weakness

    2
    Can hemochromatosis cause muscle weakness?  I've been diagnosed but have not had an appointment yet with a hematologist.  I've been experiencing muscle weakness in my arms and I'm wondering if this could be associated