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.

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hairloss and HH

pat-strickland
pat-strickland
I was recently diagnosed with HH. I am losing alot of hair and it was only after going to my fourth dermatologist that I found one that did extensive bloodwork and sent me to a hemotologist that diagnosed my HH. I asked the hemotologist if HH cause my hairloss. All he said was that it is possible, but couldn't tell me if my hair would come back after getting deironed. I've only had one phleb so far. HELP!!
deleted_user
deleted_user
This is happening to me too. I am waiting for my thyroid results and going to increase my blood letting. I need to get it under 100. I am hoping that will work. It's really freaking me out too. I would love to hear from some people that had it grow back. Are you out there? I also am having the copper looking roots when I dye my hair brown. So weird, it just recently happened. I will keep you posted on any changes I have here. Good luck!
YREKADC
YREKADC
i don't know if my hair loss is due to HH. i have been a bald monkey for a very long long long long time. i always thought it was due to getting windblown, setting up in them trees eatin bananas. or was it smoking the peels???
deleted_user
deleted_user
I have been in maintenance phase for over 20 years. I started experiencing hair loss about 12 years ago: Alopecia. My Dermatologist treats it with cortisone injections: Kenalog.

It comes and goes, but it hasn't stopped--yet. I maintain my iron within normal levels. That doesn't seem to be a factor anymore.

My experience has been that the high, toxic levels of iron "tripped" my auto-immune switch, and my body started attacking itself--arthritis, alopecia, fatigue, choking, etc... That is how I found out I had HH. Once the switch is tripped, it's tripped. It may or may not switch off, and the various symptoms will come and go. This is the experience of many people with auto-immune disorders, HH or not.

Personally, I think the high iron is responsible for the initial trip of the switch. After that, even keeping iron at normal levels doesn't seem to make much difference. (My experience)