24 May 2006

Hemochromatosis. What is it?

When I first found out that I had hereditary hemochromatosis (or HHC or Iron overload), I was a little shocked. As an athlete, I'm in some of the best shape I've ever been in, and I can say health wise I've really never felt better. I have no symptoms of HHC, whatsoever. Then to find out that my ferritin level was way high (ferritin: the level of iron my body has stored for future use) was a little surprising. It's a genetic disease (or disorder really) that causes your body to metabolize too much iron. I guess on the bright side, it's OK because as an endurance athlete, I'll probably never have an iron deficiency.

I will start treatment on June 5, 2006, by donating at least one unit of blood (phlebotomy) per week, until my ferritin reaches a more normal level. Right now it's at about 1090, and the goal will be to get that between 25 and 75, so there's a long way to go, and a lot of needles sucking blood out of my veins. Now from what I've learned, I don't think the iron is so much in my blood, but the loss of blood will prompt my body to build more red blood cells and the body needs iron to do that. So it is logical that after a series of weekly blood donations, my body will eventually use up my extra iron. After the initial aggressive once per week treatment, the maintenance plan is a bit more manageable 2-6 phlebotomies per year.

I plan to keep training (cycling, running, maybe swimming, etc) through the treatment, depending on how I feel, so if you're interested in how that goes (or if you're in a similar situation, and stumbled across this site), check the blog this summer, I plan to document the treatment (and training) progress. It will be interesting to monitor my hematocrit (HCT) and hemoglobin (HGB) values throughout the process. As a reference point my early April HCT was 43. I'm thinking this might rise in the early phase of the inital treatment, but we'll see.

If all goes well, I'm hoping to have this once per week thing wrapped up by next fall (or winter?). Only time will tell.

That's all for now, have yourself a fine day!


Mourningdove's Serendipity said...

My father-in-law had this disease. It sounds like he went through the same regime as you drawing blood every week. I will check into your site again. Good luck on your therapy and keep your upbeat attitude! I am sure they have learned a lot about this disease since my father-in-law's time.

Nic D said...

Looks like I have the same condition - just had a liver biopsy which showed masses of iron. I've been too fatigued to train for the past 4 months, seemingly a combination of the haemochromatosis and the rather more unusual brucellosis infection I seem to have picked up.
I am very interested to know how the phlebotomy affects your training - sounds like the reverse of blood doping, which isn't too encouraging.

RNess said...

nic d-
well, the phleb affects training for sure the day you have it, and the next day too. If you do have high iron, you will replace your red blood cells quickly, just take B12 and folate supplements. Email me: ryan.ness(at)gmail.com we should talk more.

The Patient Connection said...

Hi There

I was wondering if you would like to help us with a research blog of hemochromatosis


We are trying to find out more about peoples experience with diagnosis

It would be great if you could share any thoughts


Belinda Shale
The Patient Connection