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Being a Cyclist with Hemochromatosis

In my last post I talked about the importance of knowing your iron levels where I discussed the role of iron as an endurance athlete, how it can be common for female athletes to have low iron levels, but also the case of toxic iron levels and it's devastating effects.

This year I discovered I have hemochromatosis, a genetic condition where we you build up high levels of iron in the body. It appears the biggest problem with hemochromatosis is that it's not commonly known about. It's commonly misdiagnosed, I think that is the biggest problem, for me I went to the doctor many times over 2 years, being told nothing was wrong.

Initially I just woke up feeling tired with brain fog and sleepless nights. From someone who was always a early riser this was tough. It got to the point that I was unable to cycle as was just so tired and my legs just did not have the energy to turn the pedals. As a competitive cyclist this was tough! Luckily I came across a doctor who could do me a blood test quickly and I jumped at the change due to the wait of several weeks through the doctor, with family with hemochromatosis, so instantly he knew what it was and ordered me a genetics test to confirm I had the homogenized gene to confirm hemochromatosis.

I was relieved to have an answer and keen to start treatment. However, the treatment is not great for an athlete. I did my research on ways I could improve my diet, but the best treatment is to remove your blood like in a blood donation. For me I had to go monthly for 5 months, as a cyclists it was tough, not only was I dealing with the symptoms of hemochromatosis, but the lack of energy and drop in performance. But the hardest was the mental side of it, the lack of motivation and frustration I could not do what I set my goals on, or knowing I could do better as a cyclist. All with a condition that noone has heard of, let alone could pronounce.

It was tough for me, it's so easy to become the victim, it's easy to blame all your flaws on a condition. Discipline is really important, we can progress even in bad times and work with what we have. Looking bad I still achived a lot, my philosophy was that we only regret the things we don't do. I'm in a good place now and positive for times ahead with good balanced levels of iron as an athlete. I'm in maintenance now, that's where everyone with hemochromatosis wants to be.

Unfortunately, for many people with hemochromatosis their story has not been so easy. I have heard of many who have had years of blood lettings as frequent as weekly. Then for many who never discovered they had the condition I'm sure there were many fatalities due to stored iron in the organs. Medicine is becoming more aware of the condition and also it's important to sometimes question your doctor to check your iron! 

I've yet to meet another person with hemochromatosis, yet alone a cyclist, so please feel frees to get on contact and share you expereince!

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