....

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No medical advice here,but good luck with the jump into triathlons.Hopefully the sporty doc's here on ST will give you a positive slant on the whole situation..There are many people who have overcome all kinds of medical issues to compete in tri's.Your wallet might need some serious medical attention once you start buying into the whole sport though..;-)

sorry to hear that. Have a friend with it and you have to avoid so much stuff!!

this is a good place to start

http://www.livestrong.com/...romatosis-diet-plan/

also he avoids drinking tea with meals (only drinks water) as apparently tea helps absorb iron - as does orange juice (vitamin c). No more guiness!!

I know this thread is old but I was doing some research as I was diagnosed 8 months ago with Hereditary Hemochromatosis. I have both the mutated genes so lucky me I get to pass on to my children. I bolded your statement because your friend is categorically wrong. Tea and Coffee can greatly reduce the absorption of iron in the intestinal walls not increase. Ascorbic Acids (citrus fruits) greatly increase absorption. Alcohol and sugars also can increase the absorption but one of the first organs that get damaged in this disease is the Liver so alcohol can really do a double whammy. Hemochromatosis is the most commonly passed down genetic disease among caucasian men in the world AND is the most misdiagnosed genetic disease in the world. In my case I found out I had it because I thought I had hypothyroidism or Hodgkins lymphoma. I DO have hypothyroidism but i don't take anything for it because when I get my ferritin levels low and my free iron ok the symptoms subside. Not trying to drag up something old or knock your friend but drinking tea is great

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Kirk Noyes

Downtubes are for Dinosaurs

Bit of a late reply on this, but yes I have Haemochromatosis, I’m actually off to dump blood this morning. I seem to be able to balance the training for triathlon, and venesections ok. I’ve noticed my HR may lift by 5bpm in the week following a venesection, vo2 stuff is a struggle so I avoid, but thereafter I seem to settle back into training ok. Currently 52, I won my AG at Weymouth 70.3 last year, 4th AG at Lanza 70.3 last week and racing Utah WC in may. I’m not talented, just work hard. You can definitely lead a normal balanced training life around this condition.

I'm from the other end of the spectrum - low iron. And what you say tallies with what I've been told too several times that tea and coffee (normal stuff, not the weird hippy shit flowery herbal bollyx) reduces iron absorption. Same with dairy too - which is a PITA ad I rather like tea, coffee, milk and cheese.

(Agree also I'm told and read in several places that citrus fruit drinks like OJ do aid absorption).

Another late reply... I am suspecting I have it, symptoms seems to be consistent with what is reported, my ferritin saturation is high, total iron is high. Waiting on next step (genetic testing). No history in family, or, rather, no known history in family I should say since a lot of cases go undiagnosed.

I'm curious what were you (and others) symptoms and blood markers that led to your diagnosis?

I've had extreme fatigue - I've been a runner/triathlete for a long time, but no matter how much rest I take, I wake up in the morning like I have already run a half marathon. I have never had the feeling in my life that I'm running on fresh legs. Dizziness and fogginess, joint pain... It seems to go in cycles for me, I have some good training periods, then I go into a heavy bout of fatigue for a month, then I'm ok for a while, rinse, repeat...

Mine was a incidental finding from a blood profile. I have no symptoms that I’m aware of, but my initial ferritin score of 500 probably wasn’t high enough to clinically present. My saturation level was at 100%.

My sister has also recently been diagnosed positive.

I’m coming to the end of my first venesection cycle, 7th blood dump. Ferritin hovering around 100, sats at 36%.

I’m often tired but I just put that down to training. But I’m still racing, just tend to leave a venesection until at least one week post race.

Not only commonly misdiagnosed but the most common genetic disease in the Western world.

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They constantly try to escape from the darkness outside and within
Dreaming of systems so perfect that no one will need to be good T.S. Eliot

just diagnosed in last 60 days, heterozygous, ferritin about 800, 58 y/o and have gone for 17min 5k's, sub 1:21 half marathon and 2:57 Marathon at 52 to having a difficult time running a 5k in 21min. just curious if your fatigue and other symptoms relented? exactly same scenario...sleep 10 hours and still achy sore in AM such that i can't even run....hoping getting levels < 200 will return me to some normalcy...not expecting 17 min 5k's but would just like to enjoy running

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John

For now, I know it's not hemocromatosis (through various tests). But I still go into cycles of what I consider "not-good" training (sessions that should be like 5/10 feeling like 8/10) then a cycle of solid sessions. Of course, actual races don't always fall in the good cycles. I noticed I'm recovering much slower than most people I know (including my wife) and I still wake up feeling I've been run over by a bus every morning. But I've learned to live with it at this point and to try to limit other factors that would just pile up on that fatigue.

Glad you caught it at a young age. My dad didn’t catch it until he was in his mid 60s. They thought he had a skin rash and had been treated for it by a dermatologist for years. Finally during one of his annual physicals his Dr suggested testing for it. His levels by then were super high, I want to think above 1,000 but that is only a guess. He went thru months/years of bleeding therapy and got his levels down to a point where they could manage it. He didn’t exercise other than riding his bike around the neighborhood occasionally but did live to the age of 94. We have all been tested (7 brothers and sister siblings) with only my youngest brother being diagnosed.

Good luck!

I had to do around 7 months of weekly phlebotomies, it's rough. Doubly so if you're planning on training while aggressive reducing ferratin. I'm on maintenance now, every two months. I have to back on intense training for about 4-5 days after. It's pretty much a non-issue now, I just get a phlebotomy after any events!

Also, depending on high elevated your ferratin was, it's not a bad idea to see a Cardiologist and possibly a Hepatologist as well to check for any conduction delays (if I remember correctly) and/or liver damage. But stop drinking (if you partake) and eat a quality diet. Don't stress about eating citrus, reasonable amounts of Vitamin C (multi-vitamins are fine, but don't mega dose the stuff), using cast iron, etc. Obliviously consult your MD and your condition may vary; but that's the guidance from having seen Oncologists, Cardiologists, Hepatologists, and Hematologists.


Edit: I just realized this thread is from many, many years ago.