Hi there, just wanted to introduce myself. I'm 30 years old, my beta-thal went undiagnosed for 24 years. I was always classified as severely anemic and that was it. When I was 22 and pregnant with my first my father (57 at the time) was diagnosed. I told my dr but he didn't even know what thal was.
I was told when I was first diagnosed that I had trait and that I should never have any complications; I was the healthiest person in the department.
I struggled through my first two pregancies with severe exhaustion (throw her some more iron pills), dizziness, an awful metal aftertaste to everything, and a major craving for potatoes. My drs watched my blood counts drop and drop but never mentioned that there was consequences from that or that I should be on the lookout for other symptoms.
Currently, I am 33 weeks pregnant and have received 5 transfusions after being hospitalized around my 20th or so week with rapid pulse everytime I stood up, dizziness, mild chest pain, difficulty breathing (hard to even brush teeth standing up), among other symptoms. I had no idea that my blood problem could cause so many varied problems but they all seem to be 'normal' thal symptoms. I guess I never really looked anything up about thal b/c my hemotologist said I would never have any problems related to it. My first 2 transfusions lasted about 3 weeks each. More recently i ahve been getting them every 2 weeks.
both of my children have been tested and do not have thal but I still wonder due to me not being diagnosed until so late. We'll see with the newest one to come! I also am wondering more about my thal trait diagnosis b/c I've been reading that thal traits won't ever need transfusions. Is there a good site to go to to find out what various levels qualify one thal vs another? Thanks for listening!