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 have a beautiful 24 year old daughter who was tested last year and she is a carrier. Unfortunately, she seems to be suffering many of the symtoms I have. I was hoping she could avoid these. Continual fatigue, low energy, not enough to get through a day. She has seen several doctors, most recently an endocrinologist. Her tests are all within the normal parameters. She is being treated for hypothyroidism. The doctor suggested that nearly all the testing done in HH is with those of us who are full blown, two mutations and that there isn't enough data for carriers.
For those of you who may be carriers, or have relatives, friends etc. who are, do you, or they experience some or all or other symptoms? I appreciate any feedback.
For those of you who may be carriers, or have relatives, friends etc. who are, do you, or they experience some or all or other symptoms? I appreciate any feedback.
I am a 25 year old female who was diagnosed just about a year ago with Hemochromatosis. For about two years my energy just wasn't the same as it had been, and I have always been someone with a lot of energy. I thought that my low energy was due to environmental stressors- college pressures, moving to nyc, starting my career as a teacher, basic aging . . . I figured that losing steam was part of growing up.
At the age of 22, my fatigue was really bad, so i went to the doctor. Blood work was done with the speculation that I was anemic based on my symptoms. WHen the blood work came back, the results showed that my iron was in fact really high. My doctor was a bit baffled, but sent me out of the office with these words of advice: "Don't drink so much". Sure, i enjoyed a glass of wine with dinner on occasion, i went out on weekends, but I didn't feel that my drinking was causing this strange weakness and dabilatating lack of energy. Still, i took her advice and didn't drink for a while. It changed nothing.
Over the next two years, it was a downward spiral. THe fatigue was chronic and nearly unbearable. I couldn't lift my arms above my head to put my hair in a ponytail without needing a break. Eventually it was so bad, I became one of those people who asks people on the subway if i can steal their seat. I looked like an old woman, hunched over and gripping walls because my legs felt like logs.
At 24, i saw a new doc. At this point, my joints hurt, i had a splitting pain in my right side that was constant. It felt like i was packing a brick beneath my rib cage. I couldn't concentrate, my mind was foggy, i had pains in my heart as well as heart palipitations, and my joints ached in my elbows. He was the one who discovered the alarmingly high iron levels and thought to do somethign about it. I underwent genetics testing and come to find out, hold both genes for hemo- one from mom, and one from dad. Thanks, guys.
Every friday night for two months i went for bleeds (phlebotomies). Draining a pint each time i went, the fatigue didn't actually subside until about the 6th bleed. It has been about 6 months since my last phleb. The deironing changed mostly everything! It alleviated the chronic fatigue (although i still dont feel exactly how i used to before the diagnosis). My joints didn't hurt, and while it took a while for my heart palipitations to stop all together, they finally did. The twinges and aches I would get in my heart stopped (i was feelign them about 5 times a day). I still have the pain in my side, which I have been seeing doctors for andundergoing tests for the past year to determine what it is. Nothing yet.
I hope that your daughter doesn't have it. it is an agonizing thing to go through and must be constantly maintained. While it is manageable, it sucks nonetheless. If her iron levels are normal, then the fatigue she feels is probably the product of a different problem, but be aware that hemo can affect people who are our ages. Be persistent! Make sure those docotrs dont neglect to be thorough and take all precautionary measures. I went two years with dangerously high iron levels which (i fear) have caused the chronic pain in my side which is a mystery still as to what it is . . .
I hope that you find out what the problem is and get it taken care of.
Tell her i hope she feels better soon.
Let me know if i can help in any way.
-sally
Thanks for taking the time to write. I will pass this on to Jess. Her iron numbers are within the accepted ranges so her persistent low energy is still puzzling.
She is also the mother of a wonderful 11month old daughter whose curiosity and energy wear me out in a couple of hours. I'm wondering how much of a factor that may be.
Thanks again,
John
That is encouraging. It would be great to see her symptoms pass.