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.

0 Online
  • Jorge

    45 years old and just knew I may have HEMOC

    0
    Hello! I have YEARS dealing with so many issues in my body and thanks to my wife I finally know I may have Genetic Hemoc. I am 45 years and unfottunately showing many of the symptoms already:Daily joint pain (more intense in hands and knees), daily muscle pain (suffering often musscle tear), extreme fatigue, heart pain, bronze skin, hair lose, mind fog, low sex drive.Of course I did not know i...
  • mkarns24

    Confused

    3
    I was diagnosed in 2011 with a gene test of C282Y and H63D. 3 docs have confirmed over the years I am an HH pt. Ferritin level at diagnosis was over 2100. Phleb'd for 10 straight weeks. My new liver doc is now telling me I'm just a carrier. I have all the symptoms. I'm 38. I don't get it. This doc comes from the Mayo Clinic. My ferritin is almost 500, ast and alt are elevated yet he won't order a...
  • Kimimoto

    new to group, looking for some answers

    6
    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...
  • Hesketh

    Hemochromatosis & infertility

    3
    Has anyone experienced infertility from HH? My fertility specialist won't go forward until my levels are under control. He doesn't know if it will make a difference, but said there's a chance it's the problem.
  • ironmike

    Anyone with zero iron from a urine test?

    1
    I have had a couple urine tests (one in 2010 and one in 2014) which both showed 0 iron.  One of the doctors looking at the results noted that was odd.  From what I could research normal iron in urine should be around 1mg / 24 hours.  Has anyone else here with HH happened to have a urine test done and did it show normal iron?  You can see where I'm going with this.  I wonder if HH may also be...
  • ReggieL

    Muscle pain, weakness, swelling after Phlebotomy

    6
    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...
  • CrashRadius

    Newly diagnosed and worried about labs

    2
    I was diagnosed about 45 days ago with hereditary hemochromatosis coming from both parents.  My serum ferritin was 243 and I've had 5 blood draws, weekly, and I'm now at 156.  It seems like the blood draws are affecting other numbers like my hemoglobin is now at 11.6, my RBC is 3.54 and I'm not sure how concerned I should be about this.
  • hemoat26

    What levels did you start phlebotomy at?

    7
    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...
  • scaredofdrs

    low blood pressure

    7
    has anyone experienced low blood pressure as a result of HH? when i feel at my worst my blood pressure runs 90ish/60ish. every single dr i have asked about this has dismissed it away by saying "that's your normal blood pressure". i don't believe it because it will occasionally run normal (120/80). i firmly believe this is some of the cause of my fatigue...and besides, isn't that stroke...
  • Megan-Leigh-McDonald

    Port-a-cath?

    someone whose mother had a lot of blood work and other types of treatments suggested that I consider getting one of these. Since then, I've read also a bit about how the veins can get scarred over time from frequent blood letting.I am doing every other week phlebs for a few months and then dropping to a maintenance schedule of maybe between every 2-4 months.I am not sure about getting a...
  • lbj8858

    impotence

    2
    Several months ago, someone gave me information regarding Androgel and it converting to be estrogen dominant. They said there was something that could be added to it to make it work as the testosterone it iis intended to be. I can't find that discussion anywhere and I can't remember what it was. We were talking about "man boobs", belly fat and other side effects of androgel. If this is something...
  • Melicious

    Should I have surgery while having HH phlebotomies

    1
    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...
  • QuiltingBee

    Looking for Research Website

    2
    I was diagnosed with HH in 2009.  I had elevated levels for awhile, but only after having a hysterectomy did my GYN suggest my primary care dr. get some tests run. I started seeing an amazing hematology/oncologist and she was very thorough in her testing. The genetic testing showed both my parents carried the gene, and so far I am the only child of theirs that has it. I have never had to donate...
  • najarra

    Questions??

    8
    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...
  • 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...