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.
Hello! I found out earlier this year that i have Hemochromatosis, pretty much by accident. We thought i was Anemic because i am tired all the time but after further testing i found that i had the opposite.
My question is if anyone else this young had discovered they had Hemochromatosis. I'm only 18. Most people i've talked to have been about 30+.
My question is if anyone else this young had discovered they had Hemochromatosis. I'm only 18. Most people i've talked to have been about 30+.
My sons are being monitored as we speak. We have 3 members in immediate family who have iron loading HH so I've been crazy about having my boys ferritin tested for about 4 yrs. Last year my 12 yr old had elevated %, and high normal ferritin. He's being followed, and will have the yearly test in November. My other son, who is 14 had 88% saturation and near 100 ferritin(don't remember exactly)... he did have the genetic test, One C and one H gene... and will have a 2 month test done in November to see how fast he's loading. They will not start phlebs until his ferritin reaches 200.
I'm curious to know what your labs were and what treatment they are doing for you. Also, has your family members been tested? With us, it's my husband, his brother, their father, all iron loading... husbands aunt is carrier, but loading iron. Would love to hear where you are at, as i've been dying to find others that are young to compare notes with!
Theresa
As far as treatment, right now i'm not doing anything other than watching what I eat. I will go back to my Hematologist once a year and have tests done. My levels weren't high enough to start the blood draws and since I get my period every month i'm ok for now. The Hematologist said i may have a tiny bit of liver damage, but its nothing to worry about.
Emma
I'm 23 and was diagnosed a few weeks ago. At first my PCP didn't believe the test results the first time because she thought I was too young. I too was being tested for anemia because I'm tired all the time. I went for my second phlebotomy today. I'm not sure if that's supposed to help with feeling tired. The nurse told me that I'm one of the younger patients she's seen but that there are some patients as young as 18. Just think about how lucky we are to know sooner rather than later!
Allie
At first it may feel like a curse, but you are fortunate to have discovered this early, before organs may be hurt from the excessive iron storage. I first started experiencing the classic symptoms of knuckle swelling and soreness when I was 32. After too many visits to many types of professionals, I stopped searching and just accepted the mysterious pains and symptoms. I was diagnosed 16 years later when my sister called and explained what HH was and that she had it. That call, I think, saved my life. I'm guessing there was some damage from the accumulation during those years. Phlebs are the answer. Best of luck.
tuistone