Haemochromototis

[Ella13]

Hey I know this is a long shot but does anyone have or know anyone who has haemochromototis? (Ie too much iron in their body) my boyfriend was at hospital yesterday and this is what he's been diagnosed with - luckily it hasn't stored anywhere in his body and his liver and heart have been checked all fine he now has to give a pint of blood every week for at least a year. ( called phlebotomy I think) anyway he is a bit worried but I'm going out my mind with worry for him obviously I googled which I shouldn't and said it can lead to heart disease, liver problems and cancer! I think they've caught it early but I'm also worried that if we ever have kids they will have it too. I've had a few blood tests in the past year and I've been told iron is fine and from what I've read you need at least one faulty gene from each parent but my heads just going round in circles!! He wakes up with stomach pain every morning and feels sick - he's currently on omeprazole so not sure if its side effects from that. Anyway I'm rambling but has anyone heard of or had this before???

[Darren1]

i think this condition is very well controlled with the giving blood thing. how old is he? what were his symptoms?

i have been poorly for weeks and blood tests showed my iron was high. seeing haematologist on friday.

[Ella13]

Hi Darren. He's 28. Well basically he kept getting stomach pains in the morning and feeling sick so the doc thought it may have been an infection in his stomach so they have him omeprazole which he is still on but they did a blood test to make sure and since then he's had about 4 more, each one with a high level of iron. Every time he drank alcohol it got so much worse so he's stopped now. Apart from that he's really healthy never overly tired eats well never gets colds or flu or anything like that.

I think they're now testing the genetic side of things and his brother had to have a test to see if he's got it.

What are your symptoms? Have you had more than one blood test? Good luck for Friday :)

[Darren1]

nothing like mine.... i have had swollen glands basically and the only thing they find is high iron. very worrying.

[joelhall]

Haemochromotosis responds very well to treatment. Usually only those who leave it untreated will suffer further complications, and even in this case, certainly not all untreated patients.