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.
Hey everyone - im a healthy 42 yr old man, 6ft, 177lbs. Active, non-smoker, always have been a relatively healthy eater, etc. Found out by pure coincidence via recent blood test that my ferritin was abnormal. 660. Otherwise, liver enzymes normal. My doc asked that i get genetic testing and sure enough came back that im a compound heterozygote C282y / H63D. Referred immediately to a hematologist and have started phlebotomy. On a parallel track i went to the extreme and eliminated all sugar, red meat, refined carbs, alcohol, etc. I'm getting phlebotomies every 4 weeks and my ferritin has dropped from 660 to 359 after just 3 months. Got a MRI on my liver and i have a fatty liver but no scarring or anything. Liver stiffness is normal with no portal hypertension. Doctor confirmed that i have no organ damage due to iron overload. So my question is, once i'm de-ironed (doctor says she wants to get me down to 100-150), then do i need to stay this strict with my diet/lifestyle? Like, would it be ok at that point to have the occassional (maybe monthly) steak and perhaps weekly glass or 2 of red wine? I especially enjoy a glass of wine every now and then so would hate to give that up. Let me know your thoughts.
During this period of time I did some research on iron overload and it seems to be two areas of thinking about how to control it. 1) strictly control the absorption of iron by various food restrictions, or 2) just eat normally and give blood as needed to keep ferritin controlled. (In either case, NO alcohol of any kind. Yea, I use to like wine too. The liver is already stressed/damaged and does not need alcohol stress also.)
I decided, that for me, option #2 is not only the easiest but allows me to eat normally. Unrelated, but since all the above started, I have been on a Keto Diet for nearly two years now (high fat, high protein, very low carb). A Keto Diet would seem to be a non-starter with iron problems (lots of red meat), but it has not been.
Since you have the two gene version, you probably retain more iron than I do so you may have much different results. Based on my experience, if I was you, I would drain the ferritin swamp ASAP and then try to resume a normal diet. Trying to control iron overload with limiting foods and iron absorption will be a very difficult and never ending road, but many have to go down that road.
Good luck on whatever you decide,