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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  • deleted_user

    MS and hemochromatosis

    9
    Does anyone have possible MS as well as hemochromatosis? My husband has only one C282Y mutation which probably should not be so symptomatic but has very, very high ferritin. The docs are also looking at possible MS as well as hemochromatosis. I see some info on the internet about earlier onset of MS with the C282Y mutation. So......while we wait for more testing, does anyone have MS symptoms? I...
  • looney1

    Contractures

    4
    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. 
  • baldguy79

    Calcium

    6
    Does anybody take a calcium supplement and if so what brand? Thanks.
  • gribbin

    Lots of questions from a newbie!

    1
    I am a 44-year-old male.  I've always been mostly healthy and athletic, until the last couple of years.  I gained weight, lost sex drive, and felt lethargic.  I also have an active social life, and enjoy drinking beer often.  I also had a slight pain in my upper right quadrant, that radiated around my right side and back.  Since this is where the liver is, I felt concerned enough to see a...
  • baldguy79

    Tea affectiveness

    1
    I was reading where after drinking green tea for awhile your body becomes use to it & stops blocking the iron. Has anybody heard of this? I'm hoping for a response because I've found in this particular group this is hard to come by. Lol
  • baldguy79

    Tea

    0
    Do caffeine free teas have tannins? If so which types? Thanks.
  • dave5777

    Primary Physician delayed diagnosis

    3
    Back in mid 2014 we found out my aunt had HHC and were all encouraged to get the DNA test done. I made an appointment with my family Physician and got the test done. My results came back negative for the C282Y mutation and Homozygous for the H63D mutation and I was informed I had a less than 2% chance of having HHC, my Dr. ordered the blood test and said my results came back normal. Fast forward...
  • Stevewmarsh

    New site set up

    7
    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.
  • baldguy79

    Protein powder

    3
    Hi. I'm wondering what a good non dairy protein powder I could take? I have a sensitivity to cows milk. I was considering goat protein but I was reading that it metabolizes iron or something like that. Thank you!
  • KatMc

    Frustrated

    4
    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...
  • noironco

    Positive Update!

    4
    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...
  • Mish

    Difficult phlebotomy

    0
    I need to get blood taken off but they ars having a hard time with my veins.  Anyone have a port or picc
  • maxstockholm

    Trying to get a grip of symptoms

    8
    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...
  • looney1

    Negative then positive test

    3
    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...
  • claudij

    Odds of parents having mutated gene

    3
    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...