I had a really great winter of training, but in March, after several weeks of fatigue, my doctor ran some blood tests and it turns out I’m positive for a genetically inherited version of hemochromatosis. From www.hemochromatosis.org:
"Hemochromatosis is an iron disorder in which the body simply loads too much iron. This action is genetic and the excess iron, if left untreated, can damage joints, organs, and eventually be fatal.
There are several types of hemochromatosis. Type 1, also called Classic Hemochromatosis (HHC), is a leading cause of iron overload disease. People with HHC (too much iron) absorb extra amounts of iron from the daily diet. The human body cannot rid itself of extra iron. Over time, these excesses build up in major organs such as the heart, liver, pancreas, joints, and pituitary. If the extra iron is not removed, these organs can become diseased. Untreated hemochromatosis can be fatal."
I am scheduled with a hemotologist, and I think I caught this early so it hopefully hasn’t caused any organ damage. Anyone else out there dealt with this?
The reading I’ve done about high-intensity exercise and hemocromotosis is that it might be beneficial for managing the condition as it tends to reduce blood iron levels through something called “hepcidin upregulation” (hepcidin being a hormone produced by the liver that reduces iron absorption).
Additional treatment includes regular phlebotomy (blood withdrawals) to get the blood-iron levels back where they should be. And a low-iron diet, of course.
Needless to say, I’m both discouraged and scared by this turn of events…
A friend of mine has this, he saw an Endocrinologist after 2-3 years of unresolved dealings. He is an ultra distance runner, kept having hip joint issues. Turns out his bone mineral density was at risk.
Lifestyle change for him was to become a regular (every 56 days) blood donor (your reference to blood withdrawals) despite his aversion to needles, was encouraged to drink caffeine tea after his (meaty) meals as caffeine inhibits/reduces the absorption of iron and reduce the frequency of his red meat meals/supplement meat (animal leg protein (beef/chicken)) for white meat (animal non-leg protein (fish)).
He was also on an older medication that was making his BMD too brittle and was told to stop this.
Been 8 odd years now and all good. Has yearly blood analysis to check/compare levels.
@Michael_Robertson no info on your condition - just a best wishes note, and well done on getting yourself checked out. You’ve ‘taken control’ as it were.
The professionals will do what’s needed, and hopefully you get what’s needed in the weeks to come.
Just adding that when also taking vitamin c - eg. an orange or other fruits or supplements - the blocking of iron isn’t as effective so just be aware of that during your meals.
Hi, I was diagnosed with GH (Genetic Haemochromatosis) about 30 years ago. Do not worry. Now that you are in the system you should have no problems.
At first you may have quite frequent Venesections to bring your Ferretin (Iron) level down. Once you have reached about 50-100 you will go on maintenance which normally involves a 3 monthly blood test and a Venesection if your levels are above the target zone.
This condition is rarely debilitating or fatal. I am 67 years old and still out cycling fifty miles, four times a week.
Again, dont worry.
The symptoms you mention only appear (and take a long time to manifest) if your levels are not controlled.
Now that you are having treatment its unlikely that you will have any issues.
I have no symptoms and do not feel anything at all related to GH apart from the three monthly needle in the arm.
Take care, and as for diet, i’ve never really worried too much about it and i’m still fine.
It’s understandable to feel discouraged and scared, but it’s awesome that you’re already taking steps to manage it. I haven’t faced hemochromatosis myself, but I’ve seen how crucial it is to tackle it early and stick to treatments like phlebotomy and watching your diet.
One other factor in your favor is that you are an endurance athlete. Based on some research I helped with on the Kona athletes back in the 80s iron is the one element which does not decrease as much as others in sweat with climate adaptation so crank up the heat in your pain cave and let er rip. You might also want to consider adjusting workout schedule to afternoon / evening as there is some evidence thexercise induced hepcidin levels are higher towards night time The Impact of Morning versus Afternoon Exercise on Iron Abso... : Medicine & Science in Sports & Exercise
I learn something new every day.