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
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,
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.
"There aren't any tablets for this."
"The only way we can control
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
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
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
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
is blood letting.
I used to have it
three, four, five times a year.
They used to test you and see what
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,
a family history of iron overload,"
or, "I've got a complication
may be associated with iron overload,"
and ask them if a test can be done.