New to forum, first pregnancy with Thal Minor

Hi all,

I am new to this website so apologies if my first post is already asking for help! I am 29, of Greek origin and blessed with two very popular Greek disorders - Thal Minor from mom and Familial Hypercholesterolaemia from dad (they loved me so much they gave me everything they had!). I have known about both conditions from a very young age and I have been taking medication for the FH. I am currently 10 weeks pregnant with my first and feel like absolute death. I have been taking Pregnacare which includes 17mg of iron and 400mg of folic acid. But I am really struggling, I have lost my appetite completely and have lost quite a bit of weight already. I am rather petite as it is and am struggling to even walk a few meters.

I have spoken to my midwife and she said it is linked to morning sickness but I have morning sickness in the morning and it is a very different feeling from the feeling I have in the afternoons. Can loss of appetite in pregnancy be linked to Thalassemia? I know loss of appetite can be due to thyroid issues. My doctors don't seem to be that bothered with my Thal, should I be insisting on anything?

Any help would be greatly appreciated.

Thanks

Hello ellerusch and welcome to the forum,

Congrats on the pregnancy. You have come to the right place as there are a lot of thal(minor) moms who have shared their experience and would give you some useful tips.

For reading the information on this forum related to your question, you will see the Search field on left hand corner or a link at the top, type in thal minor pregnancy and read the relevant posts. There are quite a few posts that will give you detailed information on what might happen, being a thal(minor) and going through pregnancy.

Do you know what your Hemoglobin levels are? I think your HB levels should be monitored during pregnancy. If they go low, your doctor's might want to see what can be done about it.

Hi ellerusch,

Are you taking vitamins with iron because you were diagnosed as iron deficient or because it is "standard" treatment for pregnancy? If you feel nauseous or bloated and can't eat because of that, it could be the iron supplement. If you have not had iron studies done, you should ask for them, as iron should only be taken when a need is demonstrated. You might consider stopping the vitamin for a few days to see if your appetite improves. I would also suggest that you take a higher dose of folic acid. 2 mg daily minimum would be recommended during pregnancy.

Hi Ellerusch,
  ..

Best Regards
Umair

Hi! I was excited to read your post, as i'm thal minor as well and i'm 3 1/2 months pregnant. i've been searching and searching and so far this is the best website i've found.

my thal minor (usual HB level is 10.5, so pretty high) has just been "upgraded" to thal intermedia as during my pregnancy my iron levels are continuing to drop. at the moment i'm at 8.2. my ob told me to find a hematologist pronto and i'm seriously feeling just like you...death. walking up the steps is causing severe dizziness, heart racing, and shortness of breath.

are you feeling any symptoms like that? i'm meeting with the hematologist next week, as my regular doctor did not feel that i needed one until now.

i also was prescribed iron supplements, but in my reading most people have been saying that the iron supplements don't make any difference. can anyone clear that up for me a little more?

any advice would be greatly appreciated!! thanks!!

Hi klou16,

You should have iron studies done to see if you are low in iron. They're a series of tests done from one blood sample that can determine for sure if you are iron deficient. Many women do need iron supplements during pregnancy, but with thal trait, it can also be for thal related reasons, so iron won't help if that is the cause. Best thing is to find out for sure. You should also be taking 2-5 mg folic acid daily. This will help keep your Hb up. You should also take a daily B-complex vitamin. The symptoms you mention are all common in thal minors when the Hb is low. Being pregnant adds to it. Make sure you eat a nutritious diet and drink plenty of fluids.

Sometimes, thal minors do experience a drop in Hb during pregnancy and require one or more transfusions during the pregnancy. If your Hb continues to drop this may happen. It's not a big deal, so don't be alarmed if it's ever suggested. I would also suggest that you search thal minor pregnancy on our site and read some of the posts. Most minors have event-free pregnancies but it's good to be informed so you know what to look for.