Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: winnie on October 22, 2011, 05:43:41 AM
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Last week I had a phone consult with a thal doctor who told me that despite my "only" having one gene deleted, she thought that i was just iron deficient. I don't know if i have one or more additional gene mutations, but she said that treatment would be the same.
This is very confusing. I had been on iron therapy (transfused and daily pills) for several years. In the last year though, they no longer work. I've had eight blood transfusions this year; getting them anywhere from 2 weeks to a month or so apart.
Is this it? I don't know what to do other than get a new bone marrow test, and further gene testing. But it may not make a difference. Is it possible that after so long, my talassemia (whatever degree it is) has gotten worse?
Anyone have experience with this?
Thanks.
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Winnie,
Does the doctor have any explanation for your need for transfusions, as this is not a normal treatment for iron deficiency? Have you had another set of iron tests done? Has a DNA sequencing been advised? I am also going to send you a PM.
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Hi Andy,
I've been told that because my average hemoglobin is 8, they will transfuse when I go below 7. My body has stopped respondiing to the iron therapy within the last year;I used to stay at 10-12 with oral iron and twice yearly intravenous iron. (I was tested for alpha thal just this past spring after 7+ years of iron. I stopped taking it since i didn't know what effect it would have.)
I've asked for liver tests, and I've had extensive tests to find internal blood loss; no luck. With the cold and flu season coming, I'm anticipating being in the hospital a lot. My immune system is very sensitive to every germ.
Right now I'm waiting for an appointment with my current doctor to talk about more DNA testing, scheduling regular blood transfusions, and a new bone marrow test. I'm not sure there's much else I can do.
It's just so wierd!