Hereditary Hemochromatosis

  • Hereditary Hemochromatosis,,better known as Iron Storage Disease..

    It was 3 yrs ago one of my older sisters found out she had it she was 50yrs old at the time,,she had been really sick and 4 doctors were on her case trying to figure it out,,then one doc noticed her high iron content in her blood and did a DNA test to see if she had Hemochromatosis,,,she did,,so once they lowered her iron levels she slowly began to get better...
    If you have hemochromatosis, most people don't find out until they are middle age..cause by then the iron content in your blood has gotten too high and it starts to deposit in all your major organs and cause serious problems..
    I have 8 siblings, and as it turns out once my sister found out she had it,,her doctor gave her letters for each one of her siblings to take to their own doctors so that each one of us could have our DNA tested.
    Now to the reason I am posting this,,,I am lucky I am 10yrs younger then my sister and have learned to manage my eating habits so that I have a low iron diet. But the problem with this disease is for the most part it goes undetected,,,When I got the letter from my sisters doctor, I then when to my doctor whom told me I didn't have hemochromatosis, he said my iron levels are all OK,,at which point,,I said look how can you sit there and tell me I don't have it, you have not done the DNA test for it, (I was already having some of the symptoms my sister had had) And demanded the test,,(it is Doctors proticol to test any patient whom has a first blood relative with this disease) which I had to point out to him,,also I wanted to know right away so I could start maintaining a proper diet and that I had 3 daughters whom also could be at risk,,,So yes I have the double gene for the disease and each one of my daughters are carriers...
    Another reason it goes undetected is as in my sisters case,,the doctor did tests, and he found she had liver problems so stopped there and tried to treat that problem ,,when meds weren't working he did more tests,,oh now she had heart and kidney problems,,then lung problems,,but after each one of these diagnosis,,he would leave it at that,,,she was very sick for at least 5 yrs,,,until they finally found the cause, hemochromatosis,,the iron levels in each one of her major organs was causing major problems.
    So far our of all 9 of us,,there are 6 of us with hemochromatosis and 3 of my siblings are carriers...
    It is one disease that is not commenly thought of these days, and more often over looked.
    Here is a link to the Canadian Hemochromatosis Society page,,

    Information about the symptoms, diagnosis and treatment of hemochromatosis.
  • Thanks cindy lee for this info. I am sure it will start others thnking too.
    If low iron gives no energy, does lots cause heaps of energy??
  • No,,,too much iron does not ,,,I am actually bored line anemic,,cause I have been managing my iron intake almost too good,,but doctor tells me I am doing OK,,,
    NO Too much iron will then start depositing in all your major organs and really slow you down in other ways,,,
    One has to be soo carefull
  • Does the high iron content show in the blood? My nephews blood is nearly black.
  • I am not sure if you can tell by the color but if concerned go to doctor and ask to have his blood checked for high iron content,,,
  • They probably figured it out. He had just enlisted in the Navy when it was discovered. As far as I know, he isn't taking anything. My brother never told me if they said what it was. I'll have to ask next time I talk to him. They didn't kick him out because of it.
  • I don't believe having hemochromatosis would be a reason to kick anyone out of the army,,,but if one does have it ,,and is close to middle age,,becarefull,,that is when problems start to arise,,
  • He's still young...only 22 or 23