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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  • Mish

    Difficult phlebotomy

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    I need to get blood taken off but they ars having a hard time with my veins. Anyone have a port or picc
  • looney1

    Contractures

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    Has anyone else developed duprynes contracture on the palms of their hands? It's one of the reasons a doctor assumed my symptoms were due to alcoholism instead of HH but I have since read they can be associated with HH.
  • Hello,I'm a 35 year man and just got the news i got HH. To make a long story short the following is my history and my current symptoms i'm having. Please help me sort out if it could be related to HH.2013 i started getting lots of infections. Treated with antibiotics 4-5 times since then. Also started getting tinnitus and weird sensations in my body when coughing. Electric like stings down my...
  • KatMc

    Frustrated

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    My mother just passed away on the 14th from hemochromatosis. I asked the doctor of the comfort care unit where she passed why this disease isn't tested for when people come in and do their annual lab work and he said because it's not a known disease. My mom only had one gene but she still had hemochromatosis. My half brother and sister carry two genes and my full sister carries only one. I do not...
  • hi everyone. Several years ago I had a negative test for hemochromatosis but wasn't convinced and adjusted my diet and took curcumin daily. I got my ferritin down from 800s to 200s though my saturation was 90% last test. Another test by a new doctor and I was positive for c282y. Moral of the story is mistakes can be made. Persevere if your symptoms and iron readings are different from the...
  • Stevewmarsh

    New site set up

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    Am I the only one who is finding this site very hard to use and navigate now thaat it has been changed?I am struggling to find the list of current posts.
  • My 3 kids have all tested positive for the C282Y/C282Y mutation recently. My 20 year old son has his results since March 2016, and is being treat for Hemochromatosis. My 8 & 13 year old daughter were just diagnosed with the gene mutation today. With all three of my kids testing positive for the mutation, what are the odds of both my husband and I for having the same thing? An MRI of my spine this...
  • Hi, I have hemochromatosis and have been stable with low ferritins for many years now. I have hypothyroidism, severe arthritis with 5 joint replacements, hyperpigmentation, fortunately no diabetes or heart issues. When diagnosed I had serious liver issues but my liver is healed now. I also suffered from crushing depression which is now gone once the iron was removed. I recently read that clinical...
  • noironco

    Positive Update!

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    Hello everyone. I just wanted to post a positive update on my diagnosis. About a year ago, my ALT was slightly elevated on a routine physical. After many tests, in November I found my Ferritin was 2182 and I was homozygous positive for HH. I was very scared. At the beginning of December I started weekly Phlebs. In late December I did a liver biopsy (not fun, but not terrible) to determine...
  • flyinthermals

    HH Symptoms

    Hello All,After two years of tests and procedures and X-rays, the doctors came to the conclusion that I must have Gilbert Syndrome. That is until they realized that my iron saturation levels had never been checked. With elevated bilirubin and Ferritin level at 623 my saturation level was 64%. Early stages I guess. I am now waiting for the results of Genetic Testing. I have asked family but so far...
  • IronTaff

    Phleb fatigue.

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    Hi. . .Im currently going through de-ironing process. Weekly phlebs. Ive had 9 so far. Ive been absolutely fine with it for past 8 weeks but for last couple of days Ive been hit with huge bout of fatigue. . .Has anyone else experienced this ?
  • Every one with Brain Fog from Hemochromatosis (HC), let's help each other out. Because I'm my own Health Advocate I've discovered something I haven't heard about from others; I've also read that the issue of Free Radical Iron damage (Poisoning, really) isn't discussed enough with HC. I'm CONVINCED that's what causes the brain fog issues. Please let me explain, and then let's share test results...
  • theanswers

    Tired all the time

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    Hello, I'm a 23 male and was diagnosed with Hemochromatosis over two years ago. I started routine blood letting and reduced my ferritin from 700 to 35. I've also have undertaken a number of EDTA Chelation treatments - However I have a problem...I'm extremely tired all the time. I feel as if I have absolutely no energy, sometimes I can hardly think straight and small problems are huge. I'm not...
  • lfromsa

    In the dark!

    Hi EveryoneI honestly dont know where to start but I am glad I have ended up here. The last 5 years have been struggling with very painful joints and osteoarthrosis of the ankle joints. I have had a Total Ankle Replacement in my right ankle and my left one is just about just as far gone too. The right replacement has become loose now so a huge operation waiting. Last year October, I went to an...
  • Hello all ,My Hemochromatosis is diagnosed about cca 7 years ago and i keepthe iron level under control.Im thinking about tatoo with different ink colours ( red , black) in good tatoo studio.. Does anybody know is this allowed with this diagnosis because some colours can have some metals and is it possible that this metals ( iron , cobalt etc ) come in the blood???thx