Haemochromatosis 

Alan was 55 when he was diagnosed with haemochromatosis or iron overload disorder – a condition where the body contains too much iron. He describes how he learned to manage the condition by changing his diet and having venesection treatment several times a year.

Learn more about preventing haemochromatosis

Transcript of Haemochromatosis

I was diagnosed about 20 years ago.

I'd got over 50 years' collection of iron inside me

because it starts when you're born and it comes from both your parents.

Haemochromatosis is a term that's applied to iron overload.

A lot of people are iron deficient

and so what these haemochromatosis genes do

is help the body to absorb a greater proportion of dietary iron

than would otherwise occur.

But in the long term, if you continue to absorb too much iron

that iron is going to damage the tissues where it gets deposited.

I went to see the haematologist

and he explained that my body couldn't metabolise iron

and it would build up and it would get in all the various organs,

the heart and the liver.

(Professor Porter) Iron in the body is storage iron or transport iron

or iron that's actually in the tissues being used, such as in haemoglobin.

And this storage iron is ferritin iron.

A simple measure of the serum ferritin

will give an indication that this patient may be iron overloaded

and then they need to be referred to a specialist.

So hopefully we can pick people up before they get organ damage.

The clinical consequences depend on which organs the iron is deposited in.

So cirrhosis of the liver, diabetes, arthritis,

you may not be fertile or you may be impotent.

I said, "That's fine. If you'd like to give me the tablets

I'll pop off and I'll take them."

And he looked at me with a funny smile on his face.

He said, "There aren't any tablets for this."

"The only way we can control this is you'll have to come in for blood letting

probably weekly, and a unit at a time."

A unit in their terms is roughly about a pint.

I said, "How long is that for?"

"It's for the rest of your life."

(Professor Porter) One pint of blood is about 200mg of iron.

But the typical treatment would be to take a unit of blood about once a week

to reduce the serum ferritin into the normal range.

Once you've achieved normal levels of iron in the body,

then you need to make sure they don't build up again

and usually that can be achieved by taking blood

about three or four times a year.

I didn't pay much attention to diet when I was younger, when I was diagnosed,

except for one or two obvious things.

We were always told

not to have too much red meat,

especially offal, things like liver.

You can avoid foods with high iron contents in them.

I would just avoid multivitamins, iron-containing drinks, liver,

and eat meat in moderation.

I've never been a great meat eater,

but since those days, about four or five years ago,

I did go vegetarian. Well, not completely vegetarian.

I don't call myself that because I do eat fish

but I don't touch any meat at all.

Also they tell you to avoid fruit juices because of the vitamin C.

Vitamin C encourages absorption of iron

Drink tea with your meals.

And I do drink a lot of tea. I drink a very strong Indian Assam tea.

And that is good to stop the absorption of iron.

But you can't control it solely by diet.

You can manage it to a degree

but basically the only treatment for it is blood letting.

I used to have it three, four, five times a year.

They used to test you and see what your ferritin level, your iron level, was.

But I haven't now been blood let for about four years.

(Professor Porter) Nowadays we try and pick up people who are affected

as early as possible.

You can go to your GP and say, "I've got a family history of iron overload,"

or, "I've got a complication which may be associated with iron overload,"

and ask them if a test can be done.

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