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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  • vampslayer

    I think I’m fresh out of blood ;)

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    I have just completed my 5th phleb and today my blood completely stopped flowing about half way through. I told the nurse I must have run out because they keep taking it all. ;) Has anyone else had this happen? Any solutions or ideas? I’m a pretty small person, 5’2” and about 100 pounds so they already give me IV fluids before and during. Any help would be greatly appreciated!!  Any many...
  • ReverseVampire

    Newly Diagnosed and SLEEPY

    6
    Hello, I'm new to this group and new to hemochromatosis! I've undergone 4 phlebotomies (every 2 weeks) so far and I feel like sleeping all the time and have this "brain fog" a few of you have spoke of. Does anyone have any tips/strategies that help with the fatigue? I am a student and very active and I've been relying on naps and coffee to get things done but is there anything else I can do to...
  • Petango

    new hh patient alcohol effects

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    hello i am a 33 yr old male just diagnosed waiting to meet with my blood doctor and had a few questions i hope maybe can be answered here.... ive been recently noticing huuge changes in how i get drunk, been fairly regular beer drinker for a few years (12-15 per week avg) and over the last 6 months or so i have been getting faaar more drunk after 5-6 beers even though this amount would previously...
  • cloudone

    Headaches

    2
    Hi new hereI became ill in 2015 with all sorts of gastrointestinal problems I lost my gallbladder in 2016 while they were in there they biop the liver and found stage 4 iron and also fibrosis and something else . They said in report heavy iron deposits and recommended testing for hemochromatosis. Doctors were reluctant to test for but made them. I was suffering from severe fatigue,headaches,pain...
  • Skinius_Maximus

    New to......

    8
    Hi everyoneNew to this site, group and hemochromotosis.I am currently in the tail end of my de-ironing, I was just diagnosed last November.  I go in for weekly phlebs when my counts allow it, I can usually do 2 phlebs in a row before I have to take a week off. When I was diagnosed my Ferratin was in the 1600's, my ferratin is currently at 379.Some of the side affects of my weekly phlebs are...
  • GageL

    Gilbert Syndrome

    I have asked the forum this question before, but had no responses. Try try again!I have been diagnosed about one year ago with Gilberts Syndrome, or Hyperbillirubinea, a lack of the enzyme that conjugates billirubin from the liver in the small intestines. This is also a inherited disorder and diagnosed with the HH diagnosis almost simulateneously, I cannot help but wonder if these two conditons...
  • Challenger13

    Hemochromatosis liver issues?

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    i was diagnosed hereditary about 5 years ago. My iron was around 700 phlebotomies have resolved that. Concern is recently my bilirubin jumped pretty high (normally runs high) but significant jump with my hemochromatosis made Dr refer me to a gastro Dr and an ultrasound. Radiologist diagnosed me with liver hemangioma (benign tumor) but I need MRI to rule out something else. Of course nothing...
  • mel.belle

    Genetic Testing Moral Dilemma

    4
    My husband and I are currently going through IVF to have a child and have struggled for sometime with infertility. We just found out we are both carriers for Hemochromatosis and we have a 1 in 4 chance that our child will have the disease. I'm struggling to know if I should genetically test each embryo before implanting or take the risk. If we take the risk then I would genetically test the child...
  • Brucie

    Newly Diagnosed

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    phlobotomies we're going well for the last month from 1220 ferritin - 899 ferritin.  Started September 1.  Yesterday big spike to 1120.  Anyone have thoughts?
  • Jbean

    Hemocromatosis

    9
    Hi just been diagnoised with hemocromatosis.   My liver and everything is fine but I am having a lot of pains in my heart can someone shed some light on this.  Also once treatment start will the pain go.   Also is their any special diet I should be eating Jill
  • CuriousAbouttheScience

    Big drop in ferritin after only 2 phlebotomies?

    3
    I was recently diagnosed with hereditary hemochromatosis, confirmed with a homozygous genetic test.My ferritin was originally 629. Two months later, it was 690 before my first phlebotomy. After 1 phlebotomy, two weeks later before the next phlebotomy, it was 223. One and a half weeks after the 2nd phlebotomy, it dropped to 99.This means my iron dropped 467 with one phlebotomy (drop of 68%), and...
  • bjmeadows

    Looking for info...

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    Good Evening,I am a 43yr old female with Native American background. My father and sister both had Thallesemia- severe anemia and low iron levels... had to do iron therapy- etc. I was checked and did not have anemia.Fast forward to 2015. My colon suddenly stopped working- went Atonic. Went to specialist- traveled 8 hours for a week of hospital testing- and it was found that my colon basically...
  • langlois

    best ferreten level for hereditary homochromatosis

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    Have been treatd for 7 years by hematologists with phlebomies tp keep it at that level  now new doctor and clinic say 200 is perfectly fine  Iron 23 Tibc 84  I was told it was best to keep level low to protect organs, etc  I fear this will cause iron to invade heaart, live, brain, pancreas  Why wait for problem to happen
  • Clarabella

    Another newbie...

    3
    Hi, I only recently came across hemachromatosis,havent officially been diagnosed still awaiting results but consultant pretty sure it will be positive as my iron level is 2000. Had first venesection on Friday and come the afternoon felt awful and wasnt really right until sunday,feeling drunk and really out of it. So started reading all I can on the subject but there is nothing better than getting...
  • petersamui

    Hemochromatosis in thailand

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    Hi all i have just been diagnosed with hemochromatosis  yesterday hospital actually have known for 16 months but did not do a follow up and forgot to inform me in the  heamotology department  of my local uk hospital    anyway im due to fly to thailand traveling in 4 weeks time for 5 months and wondered if anyone has had there venesection done there i have googled it but nothing is showing up...