hemachromatosis help

[*Twinkle*]

Hi

I have recently been to my GP and it has been discovered that I may have hemachromatosis. My Dad also has it quite severely.

I am ATM waiting on my results from genetic testing to confirm it.

I have had 2 separate blood tests done. Both tests were done over 5 weeks and I have elevated Ferritin levels and my saturation levels. I also have elevated levels in my liver enzyme. But otherwise my liver function was great.

I am at a bit of a loss as to what sort of diet I should be on?? Can anyone help with foods to avoid and just some general advice/support about this disease??

And just to through a spanner in the works I also have PCOS and have just started medication for that, which should also assist in me loosing some weight as I have very high testosterone and low female hormones. (NICE!!!)

I honestly feel like I am falling apart at the seams.

[Rivlas]

Get a referral from your GP to the local public hospital to see the dietation.
She/He should be able to help with the diet part and if not point you in the right direction.
All the best as you sort through these changes in your life.

[MantaRay]

Twinkle, I have haemochromatosis also. The good news is that it is rarely a problem for females until menopause, as we lose a lot of iron anyway. So instead of being on the low side of normal or low in iron like many women, we are just at the high end of normal.

We don't actually absorb much of the iron in food, so it's hard to significantly alter your iron levels from food. However the one thing I have found makes a big difference is vitamins. Vitamin C is well known as something which aids iron absorption but I have found that even multis without vitamin C raise my iron levels. So don't take vitamins tablets is my best advice, and also be wary of juice, citrus etc that are high in vitamin c.

HTH.

[feeb]

Hi there I also have heamochromatosis and dont have any different diet as i am a young menstruating female.

[*Twinkle*]

Thanks for your replies.

I have PCOS as well so I don't get my period at all. Thats half the problem I think! I also am not taking any vitamins at all. I am just so tired all the time, and have awful aches in my joints and just want it under control.

Thanks for your help

[feeb]

Be very careful with vitamin supplements as very few dont have iron in them! When i did find one my ob wasnt happy for me to take it as to many herbs etc that he wasnt happy for me to have.

maybe see a naturopath

good luck tiredness is hard work