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    Old 05-07-2006, 06:27 AM   #1
    angelwithwings
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    Smile A question about Thalassemia...

    Hi everyone,
    Im new to this board. I just need to ask a question about Thalassemia.

    I was diagnosed with possible Alpha Thalassemia on Thursday. My Iron levels are 5 and my ferritin levels are 3,so they are quite low. On the advice of my Doctor, im taking 2-3 x 200mg of ferrous sulphate per day for 2 months and then I have to have more blood tests. What I want to know is,is this the normal treatment because I have researched all the different types of Thalassemia and I remember reading that its not treatable with Iron?? Im getting a bit confused as to how this condition should be controlled. Also does anyone have any advice on how I can supplement my diet with iron. Im lacto-vegetarian which means I dont eat meat fish or eggs so I cant exaclty tuck into a nice big juicy steak lol
    Many thanks.

     
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    Old 05-08-2006, 02:55 PM   #2
    jen_thomson
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    Re: A question about Thalassemia...

    I have Beta- my doctor said that the condition cannot be treated with iron, and from what I've read, neither can Alpha. Maybe your doctor is going on the chance that you have iron-deficiency anemia rather than Thalassemia? Have you had problems since birth?

     
    Old 05-08-2006, 09:55 PM   #3
    angelwithwings
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    Re: A question about Thalassemia...

    Thanks for your reply Jen. Not as far as im aware. I had pleurisy a few months ago and things seemed to go downhill from there...

     
    Old 05-15-2006, 04:43 PM   #4
    jaynieh
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    Re: A question about Thalassemia...

    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.)

     
    Old 05-18-2006, 07:31 AM   #5
    PollyGirl
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    Re: A question about Thalassemia...

    I was dx'ed with Beta Thal several years ago when constant blood tests revealed "anemia". I do know I was instructed to not take extra iron supplements because the liver can get an overload. This disorder mimicks anemia due to the very small and tear drop shaped blood cells.

    I was also told that I should not have symptoms but I believe I do. I have not tried any treatment for Thalassemia.

     
    Old 05-20-2006, 04:44 PM   #6
    x0ticsin
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    Unhappy Re: A question about Thalassemia...

    My mom told me she is a genetic carrier for this and it explains my anemia...but she told me this a year ago. Before this my pediatrician ordered blood tests almost every 2 months for years.

    It made me so upset cuz I had a bad experience one time when my blood was drawn by an old guy with shaky hands, i always close my eyes or look away when i get blood drawn...but one time it took much longer than usual and was much more painful, then afterwards when i opened my eyes, the table and my arm was covered in blood, looked like a butchering table . My pediatrician told also told me to take lots of iron and b12 in my diet....but how does that help if I have Thalessemia?

    My parents are almost vegetarians now (they sometimes still eat fish). My boyfriend was a vegan for 4 years and the rest of his family have been vegan for 8 years. For me, its difficult to watch what i eat since its bad to eat vegetable proteins, soybean protein (tofu), grains and legumes, high calcium foods since they all inhibit the absorption of iron.

    I have a new doctor now but i REFUSE to go see her cuz she wants me to take blood tests again. How do you self treat yourself? How do you avoid blood tests and get better? What do you eat if you're trying to be a vegan but also don't eat spinach, soy, grains and cereal, legumes etc?

     
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