Thal Minor and Pregnancy - Thalforum

hellokelli · November 17th, 2008, 10:14 PM

Hi, I'm new to this forum, so I thought a bit of back story may be useful. I was diagnosed with Beta-Thalassemia minor when I was 7 years old after about a year of constant tests and several misdiagnoses (including leukemia, go figure). I saw many doctors and different hematologist and I got different answers every where I went. Here are my basic symptoms:

Fatigue, I require 10-12 hours of sleep every night to function, no physical stamina for cardio exercise (coupled with asthma), low blood pressure, low hemoglobin levels, low iron levels.

All of this I have lived with just fine and it is basically my "normal." But now I am trying to get pregnant and suddenly my body isn't just for me anymore. Although these things are my normal, I am afraid they will harm and be abnormal for a baby. All the textbooks and doctors say "it's fine" but they also say that I should be asymptomatic, so I don't believe them.

In addition, I have been told in the past that I cannot take folic acid nor iron supplements. I've also been told I can't drink milk because it sucks the iron out of my cells?? Anyone been told things like this? Folic acid/Prenatal vitamin is the first thing my OB told me, but she said she's never had a Thal Minor patient. I feel like no doctors know what is *really* good and not good for my body. Has anyone else had those problems? Do you know where to find answers about these sorts of questions?

JamiO · November 18th, 2008, 09:37 AM

Hi. I am new to this forum. I have Intermedia and suffer from extreme fatigue although my HB levels are not that bad usually (9-11), as well as asthma, low blood pressure, etc. I had two children. As long as your partner was tested for the trait, my uneducated opinion is that there is no risk to them (other than they can end up with Beta Thal minor too). That said, I would caution you about recovering from pregnancy. My energy levels changed dramatically with each pregnancy. I do not know if this is common but had I known I would have been better prepared - diet, vitamins etc. My mom had transfusions during her pregnancies. Again I do not mean to frighten you but I wish I knew about how much pregnancy could weaken me. Perhaps someone here has some insight.

hellokelli · November 18th, 2008, 06:17 PM

Thanks JamiO for the information! Did your energy levels ever recovery back to their pre-pregnancy level? Did you notice this lower energy correlated with lower Hb levels post-pregnancy?

Thanks again for your response!

JamiO · November 18th, 2008, 09:02 PM

Four years after my first pregnancy I was close to back to pre-pregnancy. I never got there. Then I got pregnant again (5 years ago). My energy has never recovered. This forum gives me hope, however. Maybe there is a specialist I can find who at least understands the disease. I also had Lyme Disease ten years ago (for almost a year before it was caught) so that likely helped the pregnancies pull all my stamina. And I lost my gall bladder soon after the second one too. No one has ever suggested that was related to the beta Thal but I have read a about gall bladder issues on this site. I can tell you one thing though - I have never regretted having my children for even a minute. Just try to learn as much as you can.
My Hb levels have dropped to 6.5 now and then. Those are times when I also get very sick - usually catch a virus or something, get cold sores. It's awful. But I can honestly say my energy is always low. And it has progressed in the past couple years, since I turned forty. I used to be practically "hyper."

kiki · November 20th, 2008, 05:20 PM

I can't help you with the children question but I can relate to you about the fatigue. I am wondering why that dr said no folic acid? This is very important for developing fetuses.

As for milk, while I do love drinking it, I have forced myself to stop...I haven't heard anything about it sucking the iron out of one's cells (but there may be truth to it), but I just don't think it's as beneficial as people make it out to be-for adults anyway...I have heard that it sucks out your calcium (instead of giving you calcium). While it is full of a calcium compound, it is not readily absorbed by us.

Anyway, welcome to the forum!

hellokelli · November 21st, 2008, 12:59 PM

Thanks for the responses! I have found that one way to combat the fatigue is with exercise. Although I know this sounds counter-intuitive, because sometimes I feel to tired to move much less exercise... but when i force myself to get off my butt and go to the gym, I find that after the initial 5 minutes I find my energy levels rise. Of course I can't do much endurance related cardio, but it's not so bad to do intervals. Also on days when I can't breathe, I do weights. I have also found that in the 4 years or so that I have been going to the gym I have gotten sick a lot less.

My OB is doing research on what I can and cannot take. Hopefully she'll come up with some answers.

JamiO · November 21st, 2008, 01:57 PM

Good luck

Peppermint · November 26th, 2008, 12:09 PM

hi, i just had a baby and have beta thal minor, i was taking preg vits throughout and usually had a glass of milk everyday. i was EXHASUTED for the first three months and then i got a little more energy. Labour was tough and you need to keep your energy levels up - good luck

Peppermint · November 26th, 2008, 12:24 PM

hi, i had a baby 8 months ago, i was taking pregnancy vitamins with folic acid throughout. i also used and still do have a glass of milk for breakfast everyday. i was tired for the first three months and it got better, but labour was exhausting! my husband helped out a lot and my energy returned. you will be surprised how little sleep you may need when you have your baby, still shocks me!