Should I be worried?

Hi Samantha,

Now you are being cared for your worries are less. If they said you have Genetic Haemochromatosis You can help by not eating anything that's fortified with iron, cereal, white flour, such as white bread, cake, biscuits, don't take vitimin c, including suppliments with iron in. Cut red meat black pudding and offal and do not drink alcohol or smoke. Diet can't stop iron overload but it will be a help until they have a plan. Unlike the vitimins in veg etc "fortified" delivers huge doses of iron and all white flour in uk by law is fortified. There are downloadable informations on the haemochromotosis society uk website that may put your mind at rest. Go and look .

I was diagnosed last June and took the steps I mentioned above to feel that I was doing something positive . I also have a pint of warm water with half a lemon every morning, lemon chelates iron and the water is important to rehydrate. These steps can only be good regardless of the results. You can eat wholemeal bread, white or brown rice, white fish, chicken or pork. Oats are not usually fortified, but read the packets just in case. Never drink alcohol with a meal or Orange juice as they gather any iron and push it into the liver. Most of all don't get stressed or to tired take some me time when you can . I am just a person attempting to put your mind at ease. I am not a doctor and can only say that this is what helped me. My sister was diagnosed in September and had to wait until January to begin treatment. She also watched her iron intake etc and began to feel somewhat better than she did in September. I hope this is helpful and gets you gaining control until you are seen. I wish you well try not to worry as it seems your Doctor is really on the ball. Good luck.

    You will be okay when you get treatment. My levels were twice yours and I’m okay now. I realise it’s a scary time but I learned a lot from these forums. Don’t have raw or indeed any shellfish and learn about foods that block iron absorption.

Hi Samantha, I'm new to this HH myself and find it interesting that you've had pins and needles and numbness as I've had the same in my hands and wrists. I also have pain in my neck and had an MRI myself but it came back with nothing wrong. My iron levels are not incredibly high at 370. I am also waiting to see a hematologist. Have had referral but doc said it could be 6 months before I see one.