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.
I was recently diagnosed with Hemochromatosis with a high Ferrartin level (1,319) I am not scheduled for my first phlebotomy for a week and I am anxious about what damage is being done in the meantime. How much will my ferratin continue to go up while I wait for treatment? what should I be eating/not eating? I have terrible headaches but I'm afraid to take any medications. Does any one have any experience or advice on these questions?
Above is a long way of saying; don't worry too much about it. No additional damage will not occur in the next week before you start phlebotomies (assuming that you even have any damage now). "Phlebotomy" BTW is just a fancy, and scary, way of saying a "blood donation". If you have ever given blood before, the process is exactly the same and in most states can even be given in the same donation center. Your doctor should have given you an Rx that will permit you to donate blood at a much faster level than the standard FDA minimum of no more than every 56 days. For me, I had 8 donations in 9 weeks, which drove my ferritin level down to 13 from an average of 800 before. It took almost a year before my ferritin returned to a high normal which was just enough to have my doctor order 3 donations in 3 months, which I am in the middle of right now. (I made no changes to my diet; red meat for me!)
For most people, there is really no need to change what you eat. Trying to eliminate iron from your diet is likely to cause more harm than good. It is just easier to plan on donating blood every few months, This recommendation may not apply to all Hemochromatosis patients since some forms suckup iron from your food like crazy, but I do not think that is the majority (just a guess). Even if they do, food elimination diets may not worth the effort IMO. Only time will tell. There are a lot of Hemochromatosis help sites "out there" in Internet land so you should be able to find a lot of opinions. Just don't jump to any conclusions based on what others are saying.
Good luck and relax, maybe that will cure your headaches (I have not seen where high ferritin levels cause headaches anyway; worry sure can).
800 to 13 in 8 donations seems very fast. I didn’t think levels would go down much more than 30 per treatment?
Hemochromatosis can cause a lot of symptoms that can have PCP's chasing their tails while prescribing useless drugs. Left untreated, it can become very serious, with multiple organs affected including the heart. However, if treated I have not read about any longterm effects/damage. It depends on your age when caught I think. I was 66 when mine was discovered. I had no symptoms, and therefore have had no improvements, The only reason that I was even tested for it was because I have elevated liver enzymes that are caused by fatty liver disease (Hemochromatosis can also cause elevated liver enzymes).
Has your doctor ordered a liver MRI? This test can detect if there is any liver damage caused by Hemochromatosis. Mine came back normal except for the fat. The older, but a still used method, is a liver biopsy, however, I think that is the last resort test and disappearing test unless the MRI results are questionable.