Connections

Watson1

I have early onset and was looking up info on hemocromatosis which i have it seems that people with it have a high risk of alzheimer's interesting. Others maybe in the same boat may find this interesting

Marta

Hello, Watson. Yes, there seems to be a higher risk for dementia in men who have two copies of the aberrant gene that triggers hemochromatosis. In one large study this was not found to be true for women, likely because they lose iron through menstruation and childbirth.

How are you doing?

Ed1937

Watson, I'm sorry. Iris might see this thread, and have input re: best practices. This might be helpful.

Welcome to the forum. You will get a lot of support here. We also have a forum for people who have dementia. You might want to check it out too. https://alzconnected.org/categories/i-have-alzheimers-or-other-dementia Sending my best wishes for you.

housefinch

Thanks for raising this issue. My husband has hemochromatosis (classic kind) and gets regular phlebotomy to keep his ferritin low. He does not have dementia. I’m in this forum because I have a close relative with Alzheimer’s. I’m a physician but don’t take care of adults. I will definitely be following this issue. I would recommend you ask whatever physician manages your hemochromatosis what he/she recommends. The phlebotomy recommendation for my husband has varied a bit between physicians. He was initially managed by a wonderful hematologist who we loved. That doctor wanted his ferritin < 50. Now we have different insurance and that plan doesn’t allow referrals to a specialist for hemochromatosis management. It is managed by his PCP according to general guidelines from GI. They’re ok with ferritin < 100, but he and I still try for < 50. At diagnosis his ferritin was 1500 and he was diagnosed completely by chance on evaluation for something unrelated. I apologize if this was way more information than you wanted!!!!! Best wishes to you.

ThisLife

My H with Alzheimer's has only one chromosome and was diagnosed with hemochromatosis at 71 yrs. old. He was diagnosed with Alzheimer's at 64 yrs. old. I knew for several years before that. He is early Stage 6. We did phlebotomy for 4 months. He does not understand the diagnosis and had agitation for a day or more after each phlebotomy. From what I've read one chromosome should only make him a carrier. I discontinued phlebotomy because it was creating quality of life issues. At Stage 6...?

Watson1

Housefinch Thanks for the response about your husbands hemochromatosis.My ferritin jumps around a bit between the 50-100 that fluctuation doesn't seem to be an issue. I was like your husband over 1200 to start. It took over to years to get it under control. The Hemochromatosis Society has some scientific studies on the relationship between alzheimers. As a person with a foot in each pond i don't think early testing would hurt.Knoweledge is good. Hope to find other posts from you.. Be well Watson1