> HFE hereditary haemochromatosis > Stories

My story of HH

I was feeling sick and went to my GP, who said I need some ferritin tablets and calsuim, well I got it and drank it , like my Gp told me, the following day I started icthing, then it sarted out with big red marks on my arms and all over my body, phoned the GP, told me to stop, the ferritin tablets, (iron) , then we realized it is an allergic reaction, then I though seeing that the dr said I must get iron into my body, I made myself some beetroot juice, well I drank it, and it was not an half an hour, then everything come out, went to another dr, told her everything and she send me for blood test, came back I have HH, my son was tested, and he is a carrier. Although I have HH, all my test for iron, ferritin etc, is low, so if a dr, looks at my results h/ she tells me I must be glad my levels are all low, nothing wrong with me, but my question is, if I have HH, why is all my levels high, I do not go for phleps, but yet everything stays low.  Still got no answer to my questions, about at the end of march I was sitting at work, not feeling to well, then I started with pins & needles in my hand, went up into my arms, then into my face, then I got sceared, my son took me to hospital, he had to carry me into the ER. I could not move,  was in hospital for 4 days, had all CT scans done, could not find anything wrong, so I just carry on from day to day, and do what I can, and have excepted that I am sick, but need to carry on, cant sit back and do nothing,I am enjoying every moment of everyday to the most.

World map of HFE hereditary haemochromatosis


Find people with HFE hereditary haemochromatosis through the map. Connect with them and share experiences. Join the HFE hereditary haemochromatosis community.