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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HH rare in women?

bronxpreston
bronxpreston
My sister who is a carrier was told by a hematologist that a woman having HH is very rare (she was telling him about me because she is beginning to load iron. Her SF was over 250 I believe.) LOL I told her to tell the doctor it's not rare in women. It's just more common in men.
YREKADC
YREKADC
i think your sisters doctor don't know poo . they just don't "normally" find it in women until after menopause. and as i told my kids who are also carriers, there are 40 some mutations of HH. they only test for 3. so they could get symptoms but it gets passed on as something else.
my mother had it and didn't tell my sister and i about it. most docs think that HH is "extremely" rare. thats what they were taught in school.
i was told when they first did the genetics test, that i had one in three hundred chance of having it... i was the one. i told my kids to have their iron tested at least every couple of years, just to be on the safe side. they also have to be aware that if their children marry someone with HH or possible of, their kids may have it.. i think it should be tested for at birth. it is just a blood test. save folks a whole lot of unnecessary grief and pain. oh well i didn't mean to rant. i'll step down from the podium. do have a good day and be well
dc
deleted_user
deleted_user
Ditto what yrek said:)

zzzzzzz
deleted_user
deleted_user
I don't think it is more common in either. From what I have read, it's just not usually symptomatic as soon in women.

If both parents are carriers (carry one bad gene each), then all children regardless of sex would have the same 50% chance of having full blown HH wouldn't they?
deleted_user
deleted_user
the way I understand it, yes.

zzzzzzz
bronxpreston
bronxpreston
I just found this info that men are five times more likely to develop HH. This is because of monthly bleeding in women.

http://medicalcenter.osu.edu/patientcare/healthcare_services/blood_disorders/blood_disorders/hemochromatosis/Pages/index.aspx

Makes sense.
deleted_user
deleted_user
It was thought to be a mans disorder! That's why men get diagnosed at a younger age, because most of us have periods and blood loss with child birth.

We usually don't get dx until our 60-70's -after menopause-when it might be too late to prevent organ damage;(

zzzzzzzzzzz
IronCelt
IronCelt
Some women don't have a big monthly blood loss--I took birth control pills when I was in my thirties and had very sparse periods. Then I was diagnosed with HH at 40 and had ferritin at 3857.
deleted_user
deleted_user
I think too, more women are now on the three month pills and therefore only have a period every three months and it's brief. Also more are having endometrial ablations when they have heavy periods. If those women have the idea that they don't have the same percentage chance of having the condition they may not screen for it until too late.