Hemochromatosis Support Group

Hi Emmakate
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

I can't remember what my labs were, i don't have them in front of me. My parents were tested, and my two older sisters were. Both of my parents had one gene, I got both of them but my sisters each only got one so they are just carriers. My dad is an only child, but my mom has 5 siblings. We told them just as a heads up kinda thing and if they showed symptoms then they will get tested.
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

Emma, I just have to tell you this, My parents both have one gene, I have two older sisters who are also just carriers. My Mom is an only child and my dad has five siblings. Sound familiar. LOL I was diagnosed at 38 with a ferritin of 2400+ I had to phleb weekly for a year. I had very regular menstrul cycle, and it did not help me so please get tested every year and do not let your ferritin get to high. Gidget

woah. that's weird. haha yeah i have an appointment set up for 6 momths from my first one. After that he said if my tests are ok, i'll come back once a year. Thanks for the tip. i'll make sure i get tested next time I go.

Hi 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

Hi Emmakate,
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