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.
Hi I am awaiting a gene test to see if I have Hematomacrosis I’m the uk and my iron levels are at 47 I don’t eat a lot of high iron foods so far I’m feeling very tired and cold sore heads occasionally feeling faint I originally went to the doctor because I thought I was anaemic and possibly low iron
3 of my cousins as far as I know have been diagnosed wondering how likely it is that I could have it and what I could possibly be facing with a diagnosis
A genic test is not the absolute last word on if you have Hemochromatosis (also called iron overload) or not. For example, I have one of the two genes that point to Hemochromatosis and my wife has both genes that point to it. Guess who has iron overload; me, my wife actually has too low iron levels and takes iron supplements.
What is usually looked at to determine if you have iron overload is the "ferritin level" in your blood, not actual iron level. My ferritin got as high as 1000 before a doctor finally ordered blood donations for me to get the ferritin down to a very low level. High ferritin is a marker that your body is storing iron all over your body including major organs and joints for two examples. Iron in these places can cause severe symptoms to none at all until it is too late; heart attack for example. Again, in my case, I had/have no symptoms at all with either high, or very low, ferritin.
Again to repeat myself, a gene test will not give you an answer that you are looking for. If you have not had your ferritin level checked yet, do so now; do not wait on your gene test. If your ferritin is high you will need to give blood and depending how high it is (if it is high) you may have to do so at a very high rate for a period of time to "drain the swamp". In my case, I gave 8 donations in 9 weeks to get my ferritin down to below 15. At that level I was able to stop donations for about a year before restarting donations at a more normal level (once every two months) until once again my ferritin was down to nearly 10.
My doctor is still trying to decide what number of donations I will need to keep my ferritin in check; my guess as of today is one every 4 months for the rest of my life. The good news is that at least my donations can be handled the same as any blood donor so some good has come from all my donations; 16 in the last 2-3 years.
Good luck and remember that even if you have iron overload it is easily controlled and is not a life changing event.