Thal Minor Pregnancy Posts

Concerning the healthy tips for pregnancy,

1-  Avoid stress
2- Supplements (multivitamin+ foic+ vitamin E+ calcium.....)
3- Lots of vegetables and fruits
4- Honey gives a lot energy
5- water, water and water
6- Dates (the soft black ones) very important during and after pregnancy

Hope this helps

manal

Thanks Andy and Manal,

I remember reading on this forum about Vit E - I will go and get some this weekend!  I will also try the B12 that you recommend.

Reducing stress is important I know, but that will be a challenge due to my job - but I will make it happen.

Thanks again for this

Elizabeth

Hi,
I am new on this forum. Since I was 11 years old I knew I have BTM. All docters said there was no treatments necessary, since TM patients didn't have any problems.
When I was 24 I started to work at a General practitionors office as an assistant (kind of nurse). There I discovered my Hb levels were low. Usually about 10, what is lower then 'healthy' women.

During my first pregnancy my level dropped till 6,4. My gynaecologist at that time didn't know a thing about thal minor. I went looking for information myself and found the dutch patient society (OSCAR Nederland). They gave me advise and I went with that to my own GP, cause I trusted him moren then my gynaecologist.
After my pregnancy I became a voluteer for OSCAR and in 2011 I will become a board member.
Since my first pregnancy in 2004 and till now, I have learned a great deal. Went to different trainings, the last one was the congress in Berlin.

Now I am 15 weeks pregnant with my second child. My current GP doesn't know a lot about thal. When I went to him at the beginning of my pregnancy I asked him right away for 5 mg folic and vitamine B12 injections. He didn't think that would help. I insisted and got the prescription. Now he knows I know more about thal then he does. So we are seeing eye to eye again. Cause I was mad when he didn't believe me!

My current gynaecologist knows a bit about thal, but also knows I know more, zo he listens very well to what I have to say.
At this moment my Hb level is 7,7. My ferritine level is very high, cause even when you have TM, you still can have iron defficiency also! So always let the docter check your ferritine too!
So my low Hb is purely cause of TM. This means I probably will need a transfusion during this pregnancy. In 2004 my gynaecologist didn't even think about transfusion! These days I am glad they do. But I also know with transfusion you can get other problems, like more antibodies against blood and after your 10th transfusion you have to be aware of iron overload. Both problems won't be a real issue to me at this point, cause I hope I don't need 10 transfusions. But I told my gynaecologist that it will be my call. When I think I need one, I will ask for it. At this point I am taking goor care of myself. Eat proparly, take my vit.B12 shots. take my folic acid amd take a lot of rest. But also staying healthy by walking and riding my bike to work etc. Cause if you don't get any excersise, your condition will get worse faster.

I read about the vit.B12 pills that melt under your tongue: most of the times this doesn't give you enough vit.B12. Shots are better to get the right amount in your body.
I also read a lot about folic acid and sometimes I wonder if the person means mg or mcg.
You need 5 mg folic acid a day (= 5000 mcg)

Also I saw a quetion what can happen to the baby. I know this also first hand. I might say I am lucky I never had a miscarriage or placenta difficulties.
With my first pregnancy my son had brainsparing. This means the veins and arteries around his head were bigger then usual. This because there was less oxygen (cause of low Hb) to give to the baby. So in the last 3 months, most of the blood went to the brain of the baby. In 2004 the docters were scared and wanted to deliver my baby early. They were afraid the baby wouldn't develop enough.
Luckely there were docters in another hospital who knew this is normal with TM. So my son was born on my due date, but he was small. 5 pounds and 48 cm.
With this pregnancy I expect the same will happen. A small baby. I told my gynaecologist he could expect brainsparing and I don't need bedrest for that.

To put everything in a list. When you are pregnant:
- be persistent
- ask for folic acid 5 mg a day
- ask for vit B12 injections
- know brainsparing is normal and a smaller baby too (this doesn't aplly to all TM btw)
- ask for your ferritine level, don't take iron tablets cause your docters said so
- exercise
- take a lot of rest
- eat proparly (fruit, vegetables, meat and fish)
- listen to your body
- enjoy your pregnancy

The vitamine E is new for me, I will ask other people within OSCAR if they knew about this. I will get some tomorrow and give it a try. Hopefully my Hb levels will go up. Thanx for that 

Vitamin E deficiency is found almost universally in thal major, and majors take as much as 1000 IU daily. My guess would be that many thal minors are also deficient, as the stresses caused by the excess alpha chains in the blood and the hemolysis of the small irregular red blood cells, does deplete the body of the nutrient. In pregnancy, the mild blood thinning properties of vitamin E can also work to counter the clotting problems sometimes seen during pregnancy in thalassemics. Natural vitamin E is quite safe. I have taken 400 IU daily for over 35 years and find it to be one of the most important nutrients. Like many nutrients, it is stripped from food during processing, so replacement becomes necessary, due to the modern diet.

Ok, I have à question: at this time I am 19 weeks pregnant. I have spend 1 day in the hospital. THE docters saw my iron level was low and gave me an iron infuse. When I took my next bloodtest, my iron went from 14 to 19 to 14 again. But my ferritine is 657! How is it possible my ferritine is high, but my iron is low? Amy ideas? My hb went from 4.5 mmol/l to 4.7 mmol/l and also stays verg low. I feel à bit better though.

I would assume if your ferritin is high, you should not be taking iron, even if your serum iron levels are low.

Hope someone here has an explanation.

Pregnancy can change these values. Ferritin is also affected by any type of infection, like a cold. And, how have your sugar readings been through the pregnancy? Gestational diabetes can also affect the iron readings. From your experience, it does not seem that iron supplements are having any effect. Do you have any other iron panel results like TIBC?

Hi Andy,

What is TIBC? Perhaps it is called different in the Netherlands?
And I will check my glucose, didn't think of that. Thanx. What the infections concerns: I just went through a sinusitis, a bad one!

And thank you too Preety, I got sick taking iron, so I don't take it anymore and don't feel worse since.

TIBC= Total Iron Binding Capacity. The transferrin-iron saturation percentage or Tsat% is also sometimes used. Your sugar level should be regularly checked during pregnancy because gestational diabetes is common. It would probably make sense to get a new ferritin test too, since you were sick.

I looked at my lab form and I saw the gynaecologist asked for a TIBC already. Put glucose on the form myself 
Even as Magnesium and Sink  I am naughty 

I was wondering if anyone else has had issues with blood in the uterus?  I went for my first ultrasound yesterday and my OB told me I had blood lining my uterus and that the heartrate was slow.  She believes I will miscarry, but she said I had a 50 50 chance.  I am only around 7 weeks and my bloodcount is pretty good 11.6.  I am taking 800mcg of folic acid and I take a B Complex about 4 times a week.  I just picked up some Vitamin E after reading some of the posts on here.   I really didn't get to talk about Thal minor as I was too upset after the ultrasound, but the nurse had never heard of it and the OB didn't discuss it with me. 

Any suggestions?

Crissy:(

Hi Crissy,

You will find that most doctors will know little if anything about thal minor. Most literature will tell them that there are no symptoms, so it will usually be dismissed as a possible cause of any of the many problems that thal minors do have in the real world. And even though thal minor is most likely a cause of miscarriage, based on the dozens of reports I have heard from thal minors who have had multiple miscarriages, you will find little cooperation from most doctors if you try to talk to them about pregnancy in the context of thal minor. And this in spite of the fact that the hypercoagulable state that exists in thal major and intermedia can cause miscarriages. This is well established, but any acceptance that the same factors can be at work in thal minor is almost impossible to find in the medical world. This is a shame, because until something does happen, no precautions will be routinely taken to give a woman a better chance at a successful pregnancy. However, once something has happened, it is possible to approach it in the context of the symptoms and take steps to try to prevent recurrence.

A good review of bleeding in pregnancy can be seen at
http://www.americanpregnancy.org/pregnancycomplications/bleedingduringpreg.html

There can be various causes, but the one most relevant in thalassemia is Placental Abruption, in which the placenta detaches from the uterine wall. In thalassemia, the hypercoagulable state can lead to clotting issues which reduce the blood flow between the uterus and placenta, leading to detachment and miscarriage. As I said, this is well established in thal major and intermedia but with minor, we only have anecdotal evidence to back up this theory. I can't tell you that this is the reason for the bleeding, as 20-30% of all women experience some bleeding during pregnancy, but if thalassemia is a contributing factor, this is the most likely scenario. Keeping the blood thinner is important and vitamin E is a mild blood thinner, but it is also an antioxidant with some ability to counter the causes of the hypercoagulable state in thalassemia. This is not the typical clotting one thinks of when clotting is discussed, having little to do with platelets and more to do with what happens to the defective red blood cells that are produced to varying extents in thal minor and the tetramers that are produced from the combination of unmatched alpha globin, because there is not enough beta globin produced to match the alpha globin. These tetramers and the defective red cells basically are debris in the bloodstream, and this can lead to the clotting phenomenon. Antioxidants have great value in thalassemia and even more so during pregnancy. Just as women are advised to take folic acid as soon as they are trying to get pregnant, I believe thal women should add vitamin E to that, so as to help prevent problems during the pregnancy. Doctors will also often recommend a baby aspirin daily if they know clotting issues may pose a problem. In difficult cases, where women are not having successful pregnancies, blood thinning drugs may also be used to prevent Placental Abruption.

I hope we can continue to get replies on this topic from women who have already dealt with this issue. I know many women in this group have had problems having successful pregnancies, and the more we hear from you, the more we can back up what we already know. Thal minor women do often have problem pregnancies. Let's help them.

Hi Andy,
thanks for the information.  I have good news now!  I went back in for a 2nd ultrasound today and now the heartrate is up in the high 150's and the blood is almost gone.  I started taking Vitamin E after reading other's posts and also Omega 3.  Not sure if that helped or I was just lucky, but now I am cautiously optomistic!

Thank you!
Crissy

Crissy,

That's good news. I hope you're also taking folic acid. 1-2 mg daily is typical for thal minors during pregnancy. If there is anymore sign of blood, I would suggest talking to your doctor about the potential for having a hypercoagulable state during pregnancy and if it would be safe for you to take one baby aspirin daily.

Thanks Andy,
I am only taking 800 mcg if Folic acid so I will increase that.  I did tell the Dr. that I started taking Vitamin E after reading about miscarriage issues involving blood in the uterus on a Thalassemia page.  She said it wouldn't hurt to take Vitamin E, but didn't comment about Thal and miscarriages.  She also wants me to take a slow release iron pill because I said I had a tough time taking iron.  My next appointment is in a month as long as all goes well.  I will definitely talk with her about taking a baby aspirin if there is any more blood in my uterus.

Thank you for all of this information,
Crissy