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 posted this on FB earlier but thought I’d give an update here as well: Blood-iron level saga continues: After several months of phlebotomy I went from way above normal range to borderline anemic. Neither end of the spectrum is conducive to the right kind of Suffering.
The good news is that they’ve stopped drawing blood and my iron/ferritin levels are headed back into a normal range and I’m feeling a bit better (less fatigue, joint pain, and brain fog).
PSA: If you are a person of Northern European descent (male or female) there’s a decent chance you have some form of this genetically inherited blood disorder called hemachromatosis. Strongly encourage you to get your iron levels checked periodically and follow up with genetic testing if the levels are abnormally high. More at: https://www.mayoclinic.org/…/symptoms-causes/syc-20351443
Despite my iron situation I’ve been training pretty regularly and feeling…okay. I had planned to do a FF this weekend (sort of an annual tradition) to set a baseline for the winter, but my labs earlier this week show I’m still borderline anemic (see chart below). Looks like I’m being too aggressive with phlebotomy and have overestimated how quickly my levels increase…
So, not only do I not feel up to a FF, but I don’t feel like it would be an accurate assessment of my current fitness level (which I feel is being skewed by the lack of energy due to the iron levels).
So. Frustating.
I am trying to be optimistic/realistic, and I know rationally that each data point is important for figuring out my next best step. I think at this point I’m going to let my iron levels rise a bit further (looking back at my workout data I was doing quite a bit better at the higher end of the normal range–in the 150-200 range).
Then, when I do phlebotomy I may have them take just 250ml instead of 500ml (which really wipes me out for at least a week). Hopefully this plan will get me off of the rollercoaster and back to more normal energy levels.
Also, I don’t see how this will help but when I see that graph, all I see are rolling donuts. A couple of maple dipped to start then some kind of mint sprinkle or some such thing.
Is there a way to measure your iron levels without such a big blood draw? Just a finger prick?
Doing FF anyway may be the key, which is similar to what we suggest with athletes who have taken time off. It may not measure the fitness level you think you should be at, but it will measure the fitness level you are actually at.
If you can’t do FF at the level you think you should at your current blood iron levels, then it seems like that should also affect your workouts as well. So, if FF gives you lower numbers then maybe those are the numbers you should be riding to in your workouts?
Yes I guess that makes sense. Better to have accurate levels even if they are lower than what I’m used to. Maybe I will try doing it on a Friday so I have the weekend to recover.
Not aware of a finger prick test for the iron but probably worth exploring…
Hey there, Michael. I’m a little late to the thread, however better late than never. I was also diagnosed with hereditary hemochromatosis back in December 2024, after multiple years of misdiagnoses. Based on what you’ve said here, I think what you should do is modify your diet to focus on nonheme foods, while still allowing yourself the intake of proteins from specific fish (with the intake or green tea or black tea to block iron absorption). It is actually imperative that you limit vitamin C from your diet, since it aids your body in absorbing iron. If you can focus on a nonheme diet, it will raise the proper stores of iron you need, without affecting your ferritin levels negatively, and still provide your body with the energy sources it needs to work out. Your CO2 in your blood will still take time to restore, that’s for certain. Make sure to get your liver numbers checked out as well, since thats the first sneaky quiet attack of this condition. I’ve had to stop boxing because of this condition, but I’m slowly going to get back. I’m scheduled to (and have been) doing theraputic phlebotomy weekly for the next year just to get to a normal/safe level. I hope this information helps. Oh! And avoid sugars, especially honey.
Thanks! My ferritin levels are back to normal range now after 6 months of phlebotomy. I am FINALLY feeling better on the bike and able to recover from hard workouts more quickly. My serum iron levels are quite high (80%) so i anticipate more phlebotomy in the future. I am limiting high heme foods and vitamin C. Liver gets checked every 6 months and blood work every 3 to track ferritin. Hlad you’re doing better now that you know you have it!
I learn something new every day.
