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

[HotI]

Become a blood donor! Its a good way of lowering iron. People with haemochromatosis and really high levels can give blood more often than 3 monthly.

[feeb]

But if you have lived in UK between certain years you cant!!!!!!!!!!!! As I have

[MantaRay]

Twinkle, sorry, I didn't even think about the PCOS part. It probably is more of a problem for you than most young females. I think Kate is right - donating blood regularly is the best thing you can do. And make sure you have your iron tested regularly.

ETA - Feeb, if you can't donate blood but your iron levels are high, you can have a procedure in hossy which removes some blood. Just like giving blood actually but the blood isn't reused.

[feeb]

ETA - Feeb, if you can't donate blood but your iron levels are high, you can have a procedure in hossy which removes some blood. Just like giving blood actually but the blood isn't reused.

I did see a physician at st V's and he did tell me to get blood taken off but i have BAD veins and first try the nurse got 30 mls and 2nd time i went they got a professor to take blood and she got it but from veins on upper arm and OUCHY and bruised so badly, they never ever made me more appts, or returened calls when i rang.

When i was preg OB was not concerned and just took some extra bloods to moniter, all was ok

[MantaRay]

That sounds ouchy Feeb.

I found my iron levels dropped a lot during pg and bfing - I even was on one iron supplement a week at the end of my first pg. But as soon as I stopped bfing I could feel the signs of my levels rising.

[feeb]

ohh ok interesting, i wonder what my levels are now as havent had them checked since i was 36 weeks preg!! I am still BF but i am really tired but hard to know if iron, sleep deprivation or what.

When i first found out i didnt know anyone else with it now soooooooooooo many people have it!!! I dont feel like a weirdo anymore!!!

[MantaRay]

I know, it's odd isn't it. I didn't either - and now I know lots of people. The colleague I sat next to at the time I was diagnosed was diagnosed with it a year later. Poor guy hates needles and when I was diagnosed he said "thank goodness that's not me"! And the other day the paed we were seeing for DS1 said she had it too! It must be more common than I realised.

[feeb]

DS is going to hemaology clinic at RCH for appt next week as per our pead to be tested.

[Salsa]

Yep - I have it too!
It occured to me only recently that I should see a dietician about it and some other things I have which are affected by diet. I wish my Gp had thought to refer me to a dietician earlier, like when I was ttc or preg , anyway I have asked my GP recently for a referal. I am not sure how long it will take for the referal appointment to come thru, but I will try remember to come back and add anything that might be useful after I do.
I suugest if you have heama and other conditions you ask your GP for a referal too.

And yes, sadly I cannot donate blood which seems a shame to waste what they suck out of my veins. I cant because I lived in UK too, and last I heard in the UK they wont accept your blood for donation if you have the condition!

[HotI]

But if you have lived in UK between certain years you cant!!!!!!!!!!!! As I have

The Blood bank will still take your blood (if you have haemachromatosis), they just won't use it if you are ineligible to donate for other reasons. You have to get your dr to write a letter and contact the blood bank.