Hemachromatosis

[Dora26]

Anyone have experience of this - it’s an excess of iron in the body. Am being tested at the moment but results take 4 weeks plus. I’m hoping for a reason for my constant overwhelming tiredness despite good sleep.

My mother has it and I am a carrier.

Both your parents will need to be carriers for you to have haemochromatosis.

Are they testing you for the gene? Or just ferritin levels.

There is a group on FB called the haemochromatosis Family which is very helpful, run by a very knowledgeable lady. (not to be confused with HUK).

I was diagnosed a couple of years ago. Extreme tiredness is a sign of it. The Haemochromatosis charity are really helpful as is the facebook page.

Yes half my family have it and I’m a carrier. It often doesn’t manifest with bad symptoms in women of childbearing age because your monthly periods often prevent an extreme excess of iron building up. However if untreated it can cause problems. Usual treatment is just to have a pint or so of blood taken every few weeks.

Yep I have it thanks to getting regular blood transfusions years ago when I was sick, my ferritin is 1700 when it should be like 50. I get venesections now at the hospital once a month to get it down. Bloody scary and awful to think about side effects.

My husband has this he has to have a pint of blood taken regularly sometimes weekly if his ferritin is high.

a relative has this.
not really a problem, he goes to hosp for regular blood-letting.
that deals with it.
if you have it, other family members will need to be checked for it.

My ferretin on last blood test was 154 which is at the high end of normal. I've been told to retest in 3 months as my liver enzymes are also just over normal range too. (44) I didn't have periods for 25 years as was on mirena - maybe that affects ferretin level?

Thank you for your useful insights. For those of you that have it or are close to someone, can you live a normal life alongside blood letting etc?

Mines still drastically high but I live a normal life. The only thing that gets me sometimes is tiredness but that’s it.