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Hi! I was diagnosed with beta Thal intermedia about six years ago. My treatment was similar to yours. My hematologist had me on iron for about six weeks, and my blood iron levels never increased.

Some people with Thal also have an unrelated malabsorption syndrome. This simply means that you don't absorb dietary iron like you are supposed to. I can eat enough iron to build an engine block, but my iron levels never rise. And boy, do they get LOW!

The kind of Thal I have is where the red blood cells are too small to carry much iron. That prevents an efficient exchange of carbon dioxide with oxygen in my bloodstream. Which means that while people with normal red blood cells can recover quickly from exercise or even just a busy day, I don't. I find that I am constantly running out of energy, and some days I'll fall asleep just sitting still.

My treatment consists of an injection of Aranesp every 3-4 weeks, and an IV iron infusion every couple of years when my iron stores drop below normal. I began with having to have Procrit injections twice a week, then as my blood work became more stable, it was changed to once a week, then once every two weeks, and finally, when Aranesp came on the market, once every 3-4 weeks.

Hope you have good insurance, because this treatment is not cheap. One injection of Aranesp costs $1200! I thank God I had insurance when diagnosed, and was able to convince the insurance company to allow me to give the injections to myself at home.

The only problems I've had have been some minor side effects. The Procrit made me achy all over, as if coming down with the flu. The Aranesp just makes me sleepy. And the iron infusions just make me hyperactive and achy at the same time.

I find that although my blood level are kept around the high side of normal range, I do still tend to get tired a lot (the size of the blood cells haven't changed - there are just more of them). And I don't seem to have much resistance to whatever illness is being passed around. (I can count on having a twice-yearly bout of pneumonia in January and September.)





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