Monday, May 9, 2011


So now that I have hemochromatosis, my relationship with food is completely different. I've always loved food. LOVED. Now -- it scares me. Food is where I get the iron. The iron that won't go away. The iron that makes me sick...
Iron in food comes in two forms, heme and nonheme. Heme is the iron from meat, and that's the kind easily absorbed by the body. The only known substance that can alter heme absorption is calcium.
Nonheme iron is everything else we eat. Fruits, veggies, grains, supplements, fortifications, cookware...and this type of iron has to be changed in the body before it is absorbed. There are substances that can hinder absorption, and substances that help the body absorb more nonheme iron.
My job now is to figure out which foods are good for me to eat so I don't keep raising my iron level while trying to reduce it with phlebotomies. For example, cereal that has been fortified with iron = not for me. Vitamin C helps increase iron absorption, so no orange juice with breakfast. Yet I need Vitamin C, so I can drink orange juice between meals (and there's no iron to absorb).
Tea and coffee have tannins that inhibit iron absorption so those two drinks (tea especially) are my new friends.
No more cast iron skillets. At least until my iron levels are "normal" -- and iron is measured in what's called ferritin. My level when I started treatment was 1725. It should be under 100. I have a ways to go.
Raw oysters are out forever. One of the side effects of this disease is that Vibrio vulnificus, a bacteria found in oysters and some other shellfish, can be fatal to me. Even walking on the beach barefoot is risky until my iron level is normal.
It's going to be a learning curve. I can't wait until I love food again!

Sunday, May 8, 2011


Just the name HEMOCHROMATOSIS sounds scary. Three weeks ago, after two longs years of not knowing what was wrong with me, I was diagnosed with this...
For the past two weeks, I've had treatments. And...oh my goodness! I feel so much better! But let me back up.
I've felt like crap for two years. Exhausted even after sleeping 12+ hours. Achy joints. Heavy breathing even when I hadn't been exercising. Eyesight diminishing rapidly. I've been to doctor after doctor. Had every test imaginable. Finally, finally, finally -- a diagnosis of hemochromatosis was confirmed. Basically, my body takes too much iron from food. There's no way for a body to get rid of iron, so it stays in the body and gets stored in organs. My liver has been damaged by all this extra iron.
Treatment...the only treatment is phlebotomy. Bloodletting. When I first heard this, I asked if leeches were used, like in medieval times. Nope. Every two weeks I go to a cancer and blood center and see the same staff every time (and I am lucky in this, not everyone is so blessed). I get an IV with fluids to replace the blood that is removed, and then 500ml of blood is taken out. I get dizzy and lightheaded, but that's ok. Because I FEEL BETTER. I'm not so exhausted. My eyesight is still bad. But I feel better.