Tor Rognmo
I'm still feeling quite a little bit of anger over my recent hemochromatosis diagnosis. Not because I was diagnosed, but because it didn't happen earlier. For 30 years I've been bringing symptoms to the attention of my doctors. It started with a ferrutin reading of 140 when I was 21 - discovered when I was a blood donor - which prompted my doc to say at least I wasn't at risk of becoming anemic. It progressed with daily headaches, especially if I ate anything high iron (e.g. liver), which prompted my doc to say don't eat liver. A few years later my annual medical revealed a high liver count and lots of free radicals. My doc at the time recommended changing pain killer brands at certain intervals (to address the daily headaches that I now think were caused by high iron levels). Then I was diagnosed with diabetes type II after I got another HH symptom, loss of libido and impotence. At the same time free radicals were really high but doc was content it was 'all about diabetes'. Finally, one of my sisters was diagnosed with HH, so I demanded a ferrutin and DNA test and bingo. Ferrutin was 376 and dna was positive for HH. I guess I was a bit angry to begin with, still a little bit now, over doctoral imcompetence in my past, but now I'm more concerned about how to stop this situation of underdiagnosis, and bring hemochromatosis on to the radar screen of doctors who as often as not will ask the patient to spell it before they look in to what it is. I saw a statistic that it effects half a percent of the population of North America (Canada and the US), that works out to over a million people. There are diseases that effect a lot fewer people than that and which have a much higher profile, and awareness among docs. Tor