Hemochromatosis: Confessions of an Iron Hoarder

I’ve always known I’m not normal. But lately I’ve been trying to pursue some answers to just what kind of not-normal I am. Turns out that there are actually multiple ways I’m a weirdo, but the one I’m going here to blab about is that I have hemochromatosis. It’s a big, scary word for a hereditary condition that is incredibly common, but so little-known that my computer is convinced it’s not a real word. (It’s so not a word, in fact, that my computer doesn’t even have any suggestions for me.)

The short description of hemochromatosis is that sufferers of the condition store too much iron (kind of the opposite of anemia). This is harmful because excess iron is stored in vital organs such as the liver and gall bladder. If left untreated, this unwelcome excess iron will just loiter around, generally mucking things up and increasing the likelihood of certain cancers or organ-specific diseases such as cirrhosis of the liver.  As such, symptoms of the condition don’t appear until middle age, when the damage of iron overload finally takes its toll.

So if this condition is so seemingly obscure and invisible, then how did I find out I had it? Basically, before I moved away from my hometown right after college (waaaay back in the early aughts), I literally and metaphorically cashed out on my parents’ health insurance family plan before striking out on my own crappy HMO. So I went for a full physical with my childhood doctor, which included a blood test. My iron levels were far enough outside normal that my doctor did the old-school brow furrow and told me I should keep an eye on my iron level.

Naturally, I proceeded to pretend nothing was wrong for eight years.

A few weeks ago, I finally broke down and went to my new, totally awesome doctor and requested a follow-up iron test. The results were, once again, way above the normal range. This raised the question that I always dread: what about my family history?

See, I don’t have any family history. I was adopted through an archaic early 80s closed adoption, and have no information about my genetic or medical background. Each health problem or condition that has popped up throughout my life (and there have been a few) has been like a little surprise. Like a genetic present from two benevolent strangers. (Yeah, there’s more to say about the whole adoption thing, but that’s for another post!) Thus did I participate in my first-ever genetic test, the results of which showed the telltale mutations on the requisite genes.

It’s kind of a strange experience to be diagnosed with a genetic disorder at the age of 30(ish). It’s strange to be given this link, however tenuous or unpleasant, to the family you’ve never known. Since I’m so young(ish), I actually have some time to correct the iron imbalances and get back to normal levels. This also means I can expect a “normal” life span, compared to the general population.

The fun part is that the treatment for this condition, beyond curbing iron in my diet, is simple, harmless and charmingly retro. It’s phlebotomy, or bloodletting. Our bodies use stored iron to create new blood, so all I have to do is “give blood” a couple times a year (after an initial period of more frequent visits to get the levels back to normal), and I can maintain iron levels that all you normals enjoy. Good thing I don’t have a problem with needles.

I have my first appointment with my specialist in a few weeks, and here’s hoping that after a few weeks (or months?) I can be back on track.

I’ll end with a little PSA that, even if you don’t get routine physicals, maybe get a blood test once in a while to check your iron levels, especially if you’re of Irish descent. In some circles, hemochromatosis is referred to as the “Celtic curse,” as some geneticists believe it can be traced to a single generation somewhere on the Emerald Isle. Hemochromatosis is incredibly common, and the treatment is incredibly easy if it’s caught early.

107 replies on “Hemochromatosis: Confessions of an Iron Hoarder”

What a wonderful article.  Thanks for spreading the word and sharing your personal experiences. It constantly amazes me that so many people who have never heard of this condition are being identifed with the genetic disorder. For me it was a bit scary and challenging to be diagnosed with this in my early forties but as I approach 55 I realise its OK – its easy to fix and I even donate usable blood to the Red X Blood Service. If  haemochromatosis was routinely picked up at an early age and treated before any damage occurs, it would be no big deal. But it isn’t as you know. It will be – soon.

I actually just finished a paper on Hemochromatosis. It does exist in other populations than those of Celtic descent, but 83% of cases are due to a mutation in the HFE gene. Amongst Caucasian American populations the odds are 5/1000 for you to have the homozygous recessive condition, but only 1/1000 will actually have hemochromatosis. Symptoms widely vary, and it’s considered late onset because you probably won’t see any iron overload until the third decade of life.

If you are of Northern European descent in general, it really is a good idea to have blood tests done occasionally. If iron overload is noticed early, like in Hattie’s case, you really aren’t looking at big problems, but if it is later on you can be looking at serious liver damage and things like arrhythmias and  “bronzed” diabetes.

Ooo, interesting. As in advantage beyond absorbing lots of iron from a low-iron diet? Maybe the Celts back in the day bled a lot? I wonder if there’s any connection to the prevalence of the red-hair gene that gives more susceptability to haemorrhage (ETA: or pain modulation), red hair being most common in Scotland, Iceland and Ireland AFAIK…

off to google…

Try ‘haemochromotosis’ :P

Spelling aside, my friend and I were just joking about this yesterday – we both give blood, are both semi-vegetarian, but she has wicked periods, yet her iron levels are always on the high end of normal and mine have prevented me from giving blood a few times. Still, given the treatment, as you say, is donate blood, she figures she’s sorted…

In comparison with CF, haemochromotosis is more like a mild Irish hex, but still…sorry Hattie,sorry world!

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