Haemochromatosis

[Lilythepink3]

Hi, I'm waiting to find out whether I have haemochromatosis or not as I have high iron. My nerves are shot and feeling very worried. Anyone got any experience of it? Also anyone been tested only to be negative and what did it turn out to be? I'm worried if have it and worried if it isnt what could it be.

Basically freaking out!

Thanks

I was sent for testing. I don't know why.
But I was negative for haemochromatosis.

I was tested for it as it runs in my family, my ferritin levels shot up and were double the maximum but I don't have either of the two genes responsible for the hereditary haemochromatosis, I'm in the 10% that have non-hereditary haemochromatosis. I've had untrasounds on my organs and pelvic area but no damage done. I'm waiting to find out what happens next.

My friend was diagnosed with haemochromatosis purely by chance a couple of years ago. She had to go for venesections for quite a while to stabilise her ferritin levels which were very high but her ultrasounds were fine. She did have to adjust her diet eg cut out foods high in iron but apart from that she's perfectly okay.

A colleague was diagnosed a couple of years ago. His ferratin (I think) levels were so high that he had to have large amounts of blood drawn weekly for about six months. Now he manages his diet well and gives blood regularly and runs marathons. Says he's never felt so well!

There's a haemachromatosis support group based in Dublin, they might be worth contacting?

Thank you for all your messages. Confirmed today that I do have it, pretty upset and worried my children will have it. Doctor says I have caught it early, I'm 43. Just worried life will never be the same, apparently you have to be careful with alcohol, my only vice with work and running round after little ones was my glass of wine! Thanks so much again, is reassuring to know others are getting on living with it ok. X

No doubt it will take some time to process the news, but hopefully you'll be able to live a very normal life once you've got it under control and your head round it. One small upside, apparently it's a great excuse to drink tea! I read there's something in tea that inhibits iron absorption so you can Mrs Doyle with impunity

Yes, strange as it sounds, drinking tea with you meals inhibits iron absorption somewhat, same with milk. My friend still enjoys a glass of wine. Good luck Lily .

Thanks for your messages, really appreciate them! Funnily enough I have been feeling pretty poorly last couple of months and nauseous so off my food but drinking gallons of tea, body must have been trying to prepare me.

Thanks again! Xxx