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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  • Sluggercourt

    Do Protein shakes contain Iron?

    Hi All,I am new to this group, was diagnosed with Hemochromotosis 2 months ago with Ferritin level of 1250, I have been drained once a week since stopped alcohol, red meat and drank loads of water and green tea and now down to 436 so encouraging.I have rejoined the gym but was wondering if the protein powders contain Iron?Thanks 
  • birkita

    Leg pains

    Is anybody having leg pains that are most probably connected to HH. I have lots of brown spots and indentations on my legs that were at first thought to be from faulty veins. I had a full bilateral ultrasound which showed my veins to be great and the vein doctor said it must be from the HH since he could not come up with any other reason for the leg damage and the pain.
  • Mish

    Difficult phlebotomy

    I need to get blood taken off but they ars having a hard time with my veins.  Anyone have a port or picc
  • baldguy79


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

    Lots of questions from a newbie!

    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


    Does anybody take a calcium supplement and if so what brand? Thanks.
  • baldguy79

    Tea affectiveness

    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
  • Stevewmarsh

    New site set up

    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.
  • 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...
  • deleted_user

    MS and hemochromatosis

    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


    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. 
  • dave5777

    Primary Physician delayed diagnosis

    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...
  • baldguy79

    Protein powder

    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


    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!

    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...