I recently discovered I have haemochromatosis. I’d never heard of it before (and I still frequently get the syllables in the wrong order and call it ‘haemotomachrosis!) Anyway, it’s an inherited condition, not especially rare (I think) when your blood cells carry too much iron. The opposite of anaemia I guess. Mostly it doesn’t really matter that you have too much iron, but over time the body stores the access iron in unhelpful places, like the pancreas and liver, which causes problems. If you look online at the type of problems it can cause, the list is grim—so if you’re diagnosed with the condition, I recommend not looking.

I am not thrilled to have the condition. I feel that I had my ‘thing’ when I had the brain tumour, and I’m still coping with the after affects of the craniotomy, so having another thing just seems unfair. But life is often unfair, and as we get older I guess there will be more and more ‘things’ to cope with, and in the grand scheme of things, a benign brain tumour and a condition that loads iron, are not terrible.

When I heard that genetic haemochromatosis (GH) was in the family, I dutifully went to my GP and asked for a blood test. They don’t, in the UK, test for the gene unless your ferritin levels are high, so first of all they test for that. Ferritin is a protein, and if the iron stores are high, there will be lots of the protein (I am assuming they can’t ‘see’ iron, so they test for indicators instead). Anyway, when they found high ferritin levels, they then did another blood test, looking for the gene (HFE—for Hereditary FE—Fe is the symbol for iron) . I wasn’t too chuffed by this, as I dislike giving blood, and feel slightly wobbly when I have to have a blood test, so I felt they could have just jumped straight to the second stage. However, for someone who dislikes blood tests, everything was about to get worse.

The treatment for GH, when caught early enough, is simply to remove the excess iron. Unfortunately, this isn’t done with miniscule magnets, it’s done the old fashioned way—they remove blood. It’s called a ‘venesection’ (not a vampire, nor leeches—but the principle is the same). I find the idea of this very grim. Very grim indeed.

My GP referred me to a haematologist, who I met last week, and she informed me that they will scan various organs to check there’s no damage, but my levels are in the hundreds, not the thousands, so it’s extremely unlikely I will have a problem. I will then have weekly venesections until my iron levels are down to about 50, and then every 3 months after that (I assume forever). She sounded very cheerful while telling me this. I did my best to sound cheerful in response, but between you and me, I am absolutely dreading it. I have always wimped out of giving blood to a blood bank, and now I have to do it every week! How vile. (I believe the blood can be used, so am hoping it won’t be wasted.)

I think I will have a venesection every week for about 10 weeks. 10 weeks! I just nodded in a sensible manner when she said that, but inside I felt sick. Now, I know that it’s not really a big deal, and other people have much worse things to cope with. And I know that after a couple of ‘drainings’, I will be completely comfortable with venesections, and view it as a chance to read a book or chat to someone new. But currently I am very unhappy about the situation, and waiting makes it so much worse.

I will let you know how I get on. If you know any vampires, give them my number…You can now refer to me as Iron Woman.

Hoping you cope well with any unpleasant things in your life this week. Thanks for reading.
Take care.
Love, Anne x

anneethompson.com
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