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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jbelar 10/14/2011

For all the women in the group. Can you tell me how birth control has played a roll in your diagnosis. I am trying to figure out what I want to do for now. Long term bc usage scares me.Even though my ferritin is down, I feel i don't want to push my liver in any way, however, without bc i have terrible pms and pelvic pains. Has anyone received any good information regarding bc and hemo? BC typically reduced blood loss so that is a negative. I am thinking about the IUD but know that can even eliminate periods all together, also negative. What to do?

NicolaToms 10/14/2011

I was on the contraceptive pill for about ten years. Was on the sort that you took for 3 weeks and then had a week off to have the usual period. Had my first daughter who was born with a genetic liver disease in 1989. Got pregnant again in 1991 and had all the genetic tests done by chorionic villi but lost my baby at 5and half months. Also had same liver disease. Got pregnant again in 1992 and had 2nd daughter who is a carrier of the same disease( alpha 1 antitrypsen deficiency} but is ok. Went back onto the pill again after her birth but decided that I couldnt go through the worry of having more children with problems so got sterilized when I was 34. Do you want any more children? X

jbelar 10/14/2011

No, but I am not ready to go permanent. I am just concerned with long term use of synthetic hormones. I am can't figure out if the IUD is bad for the liver the same as combination pills. It only has progesterone on it so...

NicolaToms 10/14/2011

Perhaps you should speak to your doctor and see what they say. Sorry I cant help more, but am going through the menopause myself and it all seems like a life time away. He he. X

deleted_user 10/17/2011

Before birth control (as well as the times I have gone off of it), I had very irregular periods. Sometimes my body would go months without one. Therefore, BC kept me regular, which in turn has helped shed some iron every month. Now that I know I have HH, the irregular periods make sense. I'm hoping that once I want to conceive my periods will be more normalized thanks to phlebotomies.

BC is different for everyone, which is why talking to a gyno and hematologist would be your best bet. :)

jbelar 10/18/2011

Thank you all. As much as I would like to think the doctors know that level of detail about HH, I really don't think they do. Unfortunate. At this point, aside from treatment of HH, i am leading my way as to what I should and shouldn't do with HH.

deleted_user 10/20/2011

As long as you have a healthy liver at this point, with low ferritin, and keep the ferritin down... you have no worries about any of your organs. So you should be fine taking BC pills.

jbelar 10/20/2011

Thank you all. I tend to be a worry wort about my health so, I have wondered if there is research they just haven't uncovered about the disease that we will all find out down the road but I do know I can't predict the future and all i can do is be healthy now.

deleted_user 10/26/2011

I'm not sure if this is the case but I just wanted to add in my bc pills the 7 non-active pills are iron supplements.

ColemanS 10/28/2011

I have the same dillema regarding birth control. I took the pill for several years before being diagnosed in 2009. I had always been happy to have a very light period; however, I think that also contributed to my being diagnosed in my 30s. I do not take them now. I also struggle with whether or not to get an IUD. I am afraid it may affect my cycle and I want to be able to have one as long as possilbe (reducing the frequency of phlebs - I only go twice year for those now). I am still trying to convince my husband to have a procedure, but he is not so sure. I am 99% sure I don't want any more children, but I haven't completely shut that door. Let me know what you find out. My Ob/gyn doctor didn't know much about it. I think with it being so rare in pre-menopausal women there just isn't any research being done.

deleted_user 10/31/2011

One suggestion... do you have a University medical setting or clinic nearby? Their GYN department may have info & ideas for you. They have such wonderful access to the various medical research with, say... hemotology, hepatology, GI, etc and as to how HH may affect you.

Good luck!

zzzzzzz

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