Thal Minor Pregnancy Posts

Hi,

I'm new. Shocked that what was put across to me as a harmless blood disorder has so many ill effects, and worried that the healthcare in my country (Singapore) may not know enough to give correct care.

Has anyone gone for Down Syndrome screening or amnio during your pregnancy? I'm 33, have alpha thal trait and pregnant with my second child. My husband does not have thal. My first child had 1 in 300 chance of Down Syndrome but is normal. I haven't tested him for thal though. This time, the odds are 1 in 28. We are considering amnio but I fear miscarriage and misdiagnosis due to my thal condition.

Does alpha thal trait affect Down Syndrome screening/ amnio results? Can alpha thal trait be accurately differentiated from Down? Is it possible for my child to be beta thal minor when I'm alpha thal trait?

The amnio is scheduled for 9 Nov. Appreciate your help!

Hi everyone,

Firstly, thanks so much for all the great information here. I am age 32, 7 weeks pregnant for the first time. I am trying really hard to find a balance between relaxing and enjoying the next few months, and doing everything I can to support my health and that of my baby, without worrying the whole time (which clearly isn't good for either of us...).

At the first appointment with the midwife, I mentioned concerns about thal minor, miscarriages, thrombosis etc. She said she didn't know anything, not to worry, and definitely advised AGAINST taking aspirin. My husband (tested, not thal minor) is supportive, however significantly less inclined than I am to question the doctors/ midwives advice I am taking high folic acid and tons of other supplements, about to get the natural vit E as well. My hb 1 week ago was 12.6 so that's good.

My question is re thrombosis and flying risk. We were planning a holiday somewhere hot in January (I will be approx 15/16 weeks pregnant at that time), as we are in the UK, this may involve a 9 or 10 hour flight to get anywhere of interest. Now, I realise that pregnant women are flying all the time and there shouldn't be any major concerns until into the third trimester. Fingers crossed I won't develop any complications in the meantime. However, should I be more cautious with the thal minor and risk of thrombosis? Are there any indicators in the blood work to look out for and know if I am any more at risk, either now or nearer the time of the trip? Does the length of flight make a difference... Would it be safe to just take the aspirin for the flight, wear stockings, move around a LOT, or is that not enough...?

Any comments/ experiences on this greatly appreciated. I clearly don't want to do anything that could put myself or the pregnancy at risk, however at the same time, don't know if I am being overly cautious and we should just book the holiday and have a really fun time together before all the nappies and sleepless nights start....!

Thanks so much!

Hi cas90007,

No, an alpha thal can't become beta thal. Both are passed on from parent to child and involve two different genes on two different chromosomes. The only way to be beta thal is by inheritance.
The mental retardation associated with alpha thal is caused by a specific gene and is easily distinguished from downs syndrome.
Can anyone give some input on amnio and if there is any added risk for thal carriers?


Hi c123,

I would ask suggest asking your doctor if it would be advisable to take one baby aspirin before flying. You may not need it because you are doing well and your Hb is good and you are taking vitamin E. One thing I will attest to on long flights is walking around makes a big difference. Even when seated, you can push up off your toes to help keep the blood flowing. I found that being conscious of it made me remember to move more and I had no problems when I flew to Singapore and back from NYC.

For doctors needing to know what to look for in thals for signs of thrombosis,
http://www.jaapa.com/can-you-recognize-a-patient-at-risk-for-a-hypercoagulable-state/article/123523/

Thalassemia and sickle cell disease: Platelet activation and thrombin generation are increased in patients with these diseases. NO and anticoagulant proteins C and S are decreased in these patients. The combination of these manifestations can lead to a hypocoagulable state.

Thanks Andy.

We've decided against the amnio. Leaving it in God's hands...

All the best to the other expectant mothers. Will be praying for you all too.

Best regards,
Cheryl (cas90007)

Hi Cheryl,

Good luck  i hope and pray that your baby will be healthy.

Zaini.

B-12 is fine. An iron rich diet during pregnancy is also recommended. But your Hb hasn't dropped unusually during pregnancy, so I doubt iron supplements would be warranted. As you said, there is no way you're going to get to a higher Hb level than when you were not pregnant.

Crissy, when I was pregnant with my daughter I too was worried about my haemoglobin levels.  I found it extremely difficult trying to explain to the doctors how fast my hb drops and how I needed to be kept at a higher level.  My hb was consistently in the 9's mainly because I insisted on it and pushed for more blood at my usual 2-3 weekly intervals.  I tried explaining that I always drop at least a point each week and had done my whole life.  They kept telling me it was a normal pregnant hb.  Anyways it appears they may have been right because 2 weeks after my daughter was born and my body had reduced the circulating blood volume my hb came back at 11 something.  I hadn't had a hb this high in 15 years!  I had a very healthy pregnancy and never felt better- I now understand why!  I didn't get transfused for 6 weeks after the birth!  I hope this gives you some reassurance that your body will cope.  Most women will see a drop in Hb when pregnant because the blood volume increases to supply the baby.  I would say try not to worry about the numbers or results too much and focus on symptoms.  If you start to feel extremely tired or become very pale and breathless it may be time for them to recheck your blood.   Good luck with the rest of your pregnancy, hope your baby boy doesn't cause you too much worry x

Zedzded, thanks for sharing how your pregnancy was, it is reassuring to hear!  I know I have been fretting over how often the doctor checks my blood as it had only been checked twice since the start of the pregnancy.  I did request they check it again last week after I was feeling lightheaded at work and they were good about getting me in the same day to have lab work done, although they may think I am a little crazy now!

Thanks for your support!
Crissy

Ah I'm glad that you are doing well, not long to go now.  When are you due?  My sister is due to have her baby April 4th and I am so excited to be an auntie for the first time!  It's so lovely especially as I will not be having anymore children, my daughter is quite enough and we decided the risk isn't worth taking a second time.  I'm glad my post was of some use, if I as a transfusion dependent thal can have a healthy pregnancy anyone can!  Looking back, I was not at my best treatment or management wise but it all worked out in the end.  Keep us posted on your pregnancy
Rachael x

Rachel,
I am due June 1st, so still a little while to go!  It is an exciting time, and it is definitely nice to hear from others with Thalassemia and how their pregnancies went.  I am glad to hear you had a positive experience during your pregnancy.  I have never met anyone besides my mother and grandmother who have Thalassemia so I am very appreciative that you are willing to share your experience!

Thanks again,
Crissy

Dear fellow community members,

I am from Singapore and I would like to seek your advice regarding me and my husband’s HB ELECTROPHORESIS test. We got this test done as we are planning to conceive.

My test results indicated that I am a Beta carrier. Result extracted below:

HB ELECTROPHORESIS   
TEST   
HAEMOGLOBIN A2   *5.1%
HAEMOGLOBIN A   PRESENT
HAEMOGLOBIN F   <0.8
HAEMOGLOBIN H   NOT DETECTED
   
COMMENTS   NO ABNORMAL BAND PRESENT BUT THERE IS A SLIGHT INCREASE IN HB  A2. FINDINGS INDICATE BETA THALASSEMIA TRAIT

My husband is not a thal minor but some other HB bands have been detected. Report extracted below.

HB Electro   
HB Elect Screen   At Ph 8.6, HB-A AND HB-S/D/G BANDS PRESENT
HAEMOGLOBIN A2   2.70%
HAEMOGLOBIN F   <1.0%
GEL ELECTRO   At PH 6.3, HB-A/D/G BAND PRESENT

OTHER HB   HB VARIANT (D-WINDOW): 37.2%
   SICKLING TEST: NEGATIVE
   
COMMENT   FINDINGS ARE SUGGESTIVE OF HB-D OR HB-G TRAIT CORRELATION WITH OTHER CLINICAL AND LAB FINDINGS AND FAMILY HISTORY IS RECOMMENDED

Although we are not both thal minors, can you advise if thal beta trait along with the HB-D or HB-G trait from my husband could lead to any serious condition for our children in future.

Please advise. I have read some similar posts in the forum but I would appreciate if anyone can advise on this case specially. Also, is anyone aware of good genetic counsellor in Singapore. Please advise.

The combination of HbD and beta thalassemia is not common, so the literature about it is not plentiful, but most cases seem to be benign and the same as thal minor. However, there are some recorded cases of an intermedia condition when HbD is combined with certain beta° genes. So, it might be advised that the beta thal carrier have a DNA analysis to identify the beta deletion. One clue would be how your own health is. Beta° carriers tend to have more symptoms and lower Hb levels, so if your Hb isn't very low, it's more unlikely that it would be beta°.

Hi everyone,

First I'd like to thank Andy & team - for all your efforts to have than minor acknowledged as a real health concern with real symptoms and for all the research and recommendations helping us manage it in our daily lives.

My post today is more of a rant unfortunately, and nothing new, just needed to get it out and have someone know where I'm coming from.

I'm now pregnant, in my 10th week, and looking for a new family dr in my area. Someone recommended this new dr and after meeting him I am really frustrated to find out he is not only dismissive of BTM having symptoms but also seems very rigid, inflexible, don't even think he would care to look into this forum to update his info. And this is a pretty high rated dr.
I am in the Vancouver BC area and going to see dr Vickars as recommended on another thread here, implies I need to be referred by another doc. And the children's hospital is a bit far from where I live and can only imagine going to the hospital in labour and being sent home (1hr drive one way) cause it's 'too early'...

So sick and tired of not being taken seriously and thus not getting appropriate care... I haven't seen my blood tests since before getting pg. I've been taking mat vitamins + another 1mg of folic acid + vit D and even C. I havent ever seen any iron studies as everyone went by ferritin...and lately I've been feeling even more tired than before pg (any BTM who's been pg probably knows what I mean). To top it off at 8wks I started bleeding, ER doc said 'threatened miscarriage' and confirmed with ultrasound that the baby is fine and bleeping is away from it. I was lucky to come accross someone who gave me 2 weeks off from work to recover which were god sent, so to speak...been sleeping ever since.
How come it is too much to ask a doctor to listen to the patient before dismissing all they are saying, and this before even knowing them, from the first visit??? Disappointed to tears (part of those are hormones, I know).

Thanks for listening and pls wish me luck - apparently that's what it takes to find a doc who can listen these days.

Please take care of yourself and listen to your body. It sends signals to us so that we can respond. I agree with you on finding a doctor that listens to you. Also, getting HB levels checked would be a good idea

Yes Narendra is right.

The body definitely send the signal for each and every symptoms in advance, we just have to identify it with analysis of our body.

My personal experience of hypoglycemia and i get signals even before 48 hours (It's true) and if it's not corrected then hypoglycemia occurs.