Alpha Thal Trait and transfusion dependancy, is this possibe?

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.

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.

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!