Haemochromotosis

[Ilovecrumpets]

Hello

I’ve just had some blood test results that show I have the double genetic mutation for haemochromotosis. I don’t have iron overload yet but just trying to get my heard round it and wondered if anyone on here happened to have it?

hi crumpets. I've got it. Tbh it doesn't make much difference to my life. I go for a venesection every 3 months (more at first because I had overload). I haven't altered anything except I don't eat raw oysters or take Vit C. I try to be careful about how much alcohol I drink but that's because I had overload so was a bit worried about potential liver damage.

Thanks for replying sofuckingsad.

I was expecting to find out I was a carrier so didn’t fully take it all in yesterday ( I’m a compound heterogenous so have one of each of the different type of faults!). My ferritin has been slightly elevated for over a year so I pushed to get tested.

Very helpful to hear from someone as been googling but hard to work it all out ( and whether I should proactively change my diet or anything)

Haemochromatosis society very good. www.haemochromatosis.org.uk/ they have some useful leaflets about diet etc.
Make sure you’re not eating anything fortified with iron. Don’t take vitamin c. You might be able to be referred to give blood with the blood transfusion service & that may be enough to keep your levels down.
Find out who will be managing your condition & see if they ca discuss.

Sorry crumpets, just back in from work. Yes, check out the Haemochromatosis society. I'm not allowed to give blood because I had a transfusion after my dd was born so all that lovely iron-rich blood goes to waste! I've got the same mutation as you - the bells and whistles one. Do you mind me asking how you ended up getting tested? In my case I was feeling very worn out and eventually forked out for a private blood test because I was convinced I had a thyroid issue. Then the ferritin level came back v high.

Thanks both. I also had a transfusion many years ago so cannot give blood unfortunately!

so fuckin I’d actually had some tests last year as had fatigue ( which I still have and depression). The results came back with slightly elevated ferritin ( abnormal but not massively so). The GP just mentioned it but I asked to be retested - was retested after 6 months and still elevated. I was aware my late father was a haemochromotosis carrier so pushed to be referred. GP thought I was ridiculous and asked me to test again and then when it was still unchanged after a year referred me.

Atm it isn’t that high and I understand my iron levels currently not overloaded ( GP hadn’t tested actual iron levels) so have been recommended annual blood testing. The consultant I saw did also say to look at diet as worth trying to avoid iron rich foods.

Just thought I guess I will need to update some insurance policies

Generally until menopause menstruation keeps the ferritin low enough.
Usually there is a target ferretin level which is aimed for.
After that it tends to be when venesection is needed.
The other thing to consider is that raised iron can also cause fatigue depending on the level.
Some people actually feel better after venesection.

Thanks moreguac yes I’m pre menopausal ( and always had very heavy periods - maybe this is a good thing! ). I’m hoping the letter from the class suntans might set out levels at which the GP should refer me back to him.