Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: sciencepassion on October 02, 2011, 07:45:04 PM
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Dear all,
I am very upset and depressed right now and also very angry on my dad who gifted me this thal minor..!! I am 31 year old. We didn't try for kids as I was busy in doing my PhD. Once I finished we started trying and within one month I got pregnant. We both were so happy and excited as this was my first pregnancy but unfortunately I lost my baby at the 6th week. I knew from many years that I am thal minor but was leading very active normal life. I was baffled why this happened and came to find this site which explains the higher frequency of miscarriage in thal minor women compared to normal healthy women. I started taking vitamins right from the beginning of my pregnancy. My folic acid intake in that prenatal vitamins was 800 mcg, I guess now that is not sufficient for me. Doctors don't know the exact reason why this happened but I have feeling that thal. has role to play. We want to try again but this time with high precautions.
Please tell me what prenatal vitamins should I take? What precautions do you suggest? I want to see my doctors from the beginning this time as I planned to see doctors at the 8th week in last pregnancy and at 6th week I lost. I blame myself for not seeing doctors early because of stupid insurance... Is there anyone thal minor here who has successfully delivered full term baby ? What extra things they did which can help me to save my baby this time..plz plz...help me. I am crying for loss of my baby..this is very hard..!! also let me know that if I come under the high risk pregnancy.
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Hi sciencepassion,
I'm sorry for your loss. Unfortunately, we hear this far too often with thal minors. The medical profession does not want to acknowledge this, but even though thal minor may cause no problem to many carriers, there is a large group who do have miscarriages and often several. I believe the main problem lies in a reduction of the blood flow between the placenta and uterus and that thal minor can contribute to a condition known as the hypercoagulable state, a state that causes a drop in this blood flow, causing the placenta to detach from the uterus. This is well known about thal major and intermedia and from the amount of reported miscarriages, it seems very likely the cause in thal minor also.
Has your partner also been tested to make sure he is not a carrier? This is essential to make sure you can't have a thal major. There are somewhere around 300-400 million carriers on earth, so it is much more common than realized.
Folic acid should be taken when you are trying to get pregnant. Don't wait until you are pregnant, as it has been proven that folic acid helps to prevent birth defects when taken before getting pregnant. Also, I usually do suggest folic acid to minors in general because it helps to build red blood cells. I would recommend 2 mg daily. I also suggest 400 IU natural vitamin E daily. E is a mild blood thinner, which can help to prevent clotting issues. It is also a good antioxidant which can also help to counter the reasons for the clotting issue in the first place. When you do get pregnant, talk to your doctor about monitoring the pregnancy for any sign of the hypercoagulable state or thrombosis. If the doctor suspects this, he may prescribe one baby aspirin daily during the pregnancy for its blood thinning property.
Thal minors have children all the time. Even many majors have children. It is important to keep a good nutritious diet and avoid junk food. You can take a multivitamin but you should supplement folic acid and vitamin E in addition. Narendra has compiled a list of links to threads about this topic. You an see this at http://www.thalassemiapatientsandfriends.com/index.php/topic,3041.msg30075.html#msg30075
Check them out and see what experience other women have had. I think women can have a positive effect by taking these easy steps of diet and supplement. Miscarriage is a risk for some women, but I know women who have had multiple miscarriages but also have multiple kids.
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Thanks Andy for your reply. Fortunately my husband is not thal minor. He is rather very healthy guy. I was in CVS pharmacy today looking for the prenatal vitamins with higher folate and vit. E. However, all prenatals have 800 mcg/975 mcg and maximum 30 IU vit. E. Even I was reading carefully all the labels and I noted on all bottles that "Folate intake should not exceed 1000 mcg". Do I have to take prescription from my doctor for this extra vitamins? I am afraid whether they will agree or not. I have an appointment on Tuesday with doctor. Hope I can explain her. Last time when I asked her she just said that "No, thal. minors should not have any problems during pregnancy". It seems that she doesn't know much about this connection. Should I schedule appointment with high risk pregnancy doctor?
Regarding diet, I am vegetarian but I eat eggs. I have stated to eat more protein, eating multiple beans, lentils, tofu and seitan. Milk and vegetables. Hope I am eating right.
Your suggestions are much appreciated. Thanks a lot.
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The upward limit for the general population is 1 mg folate daily. However, thals are not the general population and 1 mg is commonly recommended daily. During pregnancy, the dose can be 1-2 mg daily. You won't find any kind of multi with an adequate supply of vitamin E. 30 IU won't be enough for the antioxidant value or for its blood thinning properties. I suggest 400 IU daily, but avoid synthetic E, as it has almost no value and can be harmful in doses over 100 IU daily. A natural E complex is best. As far as the doctor, you can mention you just want to make sure that clotting problems are not going to cause miscarriages and ask if it is possible to monitor. Thal minor doesn't even need to be brought up in this context, as it tends to cause doctors to stop listening.
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Thanks again Andy. But from where I can get additional 1mg folate only and 400 IU vit. E natural separately than my prenatals? Does CVS have folate and vitamin E separately? Or if you know can you tell me the place I can look for those. Do I need doctor's prescription for that? Tomorrow is my appointment with Dr. and I thought to tell her about your previous message. But now as you say not to mention this connection, I won't.
Thanks.
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I haven't checked the vitamins at CVS but you can often find vitamins at the grocery store or natural foods stores. Even the warehouse clubs carry a line of supplements. I tend to order online. Puritan has a wide variety of vitamins at good prices. You do not need a prescription. As far as talking to docs regarding health issues in the context of thalassemia minor, it's often best just to talk about the symptoms and not attribute the cause as thal, because doctors tend to discount it as soon as you say thal minor.
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By the way, since you do have a good diet, you are already getting folate in foods. 800 would be fine. However, even with a whole foods oriented veg diet, it's hard to get enough vitamin E, especially when dealing with the stresses of thalassemia, so supplementing can make a difference. My diet is similar to yours but I still take vitamin C, D and E along with B complex. Vitamin C aids in iron absorption from plant foods, so it has added importance in pregnancy because it does require more effort to maintain a good iron level on a veg diet when pregnant, and iron supplements are best avoided when possible because they tend to bloat the stomach and cause constipation. I reversed severe surgery caused anemia by a veg diet alone. I couldn't handle taking iron so I concentrated on eating iron rich foods. It's much preferable to get your iron from food if possible.
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You are very helpful Andy..!! Thank you very much.
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Sorry Andy, one more question. Should I start taking 400 IU vit. E now before getting pregnant? or at the time when I find out I am pregnant. And is there any side effects you know in thal. people as this dose is higher?. Internet shows many side effects of 400 IU or more vit E if taken per day. Regards,
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I have seen hundreds of studies of vitamin E that show its benefits. The only negative report I ever saw was a meta-analysis, which is not actually a study, of other studies involving people with mortal illnesses and vitamin E did not prevent death. I have taken 400 IU vitamin E daily for over 35 years and the main thing I notice is that I look and act much younger than most people my age. I recommend vitamin E for all thals, minor through major. I know majors who take 1000 IU daily. My family doctor knows my dose and his only advice was to not take synthetic E.
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Thank you very much.
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Hi Andy,
I got my extra 400 mcg folic acid and 400 IU vitamin E natural from Puritan's pride. My prenatal vitamins already contains 30 IU of vit. E and 800 mcg folic acid. Now my question is- is that O.K if I take total 1200 mcg folic acid and 430 IU vit. E per day? Just wanting to confirm with you before I start. (I guess your assurance will give me peace of mind). Thanks.
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Yes, the amount of E in the prenatal is almost negligible and a dose up to 800 IU daily is safe. Folic acid is often recommended up to 2 mg daily and majors often take up to 5 mg daily. 1.2 mg daily is safe. One thing I want to mention is something I posted about the other day. Non-aspirin NSAIDS can prevent attachment of the embryo to the uterine wall, so avoid all meds like ibuprofen.
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I had a healthy baby boy 4 months ago and I am Thal Minor. However, when I first got pregnant I went in around 6 weeks (wasn't sure how far along I was) and I was told I would miscarry. I immediately started taking Vitamin E, and more Folic acid, at Andy's advice. I also took amino acids at my Dr.'s rec and I tried prenatals but they never worked for me. I went in a week later for a follow up ultrasound and everything was normal, no excess blood in the uterus and a good strong heartbeat. I will never know if it was the vitamins or divine intervention, but I say whatever you can do to help things along. I did end up seeing a hematologist as well, I think they can be very helpful if you are experiencing anemia related issues. Mine was great and very knowlegeable about Thal. If you ever want to give me a holler feel free!
Good Luck I hope everything works out for you!
Crissy
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Hi Andy, thanks. I have started taking those vitamins and feeling great..means more energetic..!! I have also scheduled preconception appointment with doctor. Hope this time things work out for us.
Hey Crissy,
Thanks for your suggestion. Unfortunately nobody told me I can take folic acid and vit E extra when I started miscarry acc.to doc. I am really scared this time and very cautious. Crissy, would you please tell me what vitamins did you take and in what amount?. When did you see a hematologist? and what test were important for healthy pregnancy? What diet did you emphasize mostly during pregnancy? I am a researcher so my job is bit stressful but I think I'll try my best to be tension free this time.
I am following Andy's advice this time. Hopefully, we will have success this time. crossing fingers.!! Thanks
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Hi Crissy,
I'm really happy to hear that your pregnancy was successful. :congrats
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I took 800 I.U. of Vitamin E, 1600 mcg of Folic Acid, 2500mcg of B-12, 100mg of B6, 2 amino acid chews (GNC brand) I tried prenatals and multivitamins off and on, but they always made me sick. I also tried slow release Fe but that also made me sick. In the first trimester I ate a lot of carbs, mainly because of morning sickness. I focused on protein (red meat) a lot more in the 2nd and 3rd trimester, but still had a lot of carbs:) At the end of my 1st trimester I started having problems with my iron levels and tried adding cream of wheat and coco wheats to boost my iron but it wasn't enough. I was referred to the hematologist at the beginning of the 2nd trimester when I started having problems with headaches, numbness in my hands, shortness of breath/dizziness. The hematologist monitored my iron levels and my Hb through the rest of the pregnancy and I recieved iron infusions every 2 weeks. The iron did help a lot with how I was feeling. I would say the biggest thing is knowing your Hb numbers so you are not worrying and having someone to talk to who will listen about your symptoms. My hematologist was great!
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Thanks Andy! And thanks for the advice as well:)
My baby boy is in the 90th percentile for everything so he must have got what he needed!
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Hi Andy,
My this question is unrelated to pregnancy. I am experiencing severe lower left leg pain recently. Whenever I walk long (15 to 30 min), I feel like my left leg muscles get tighten and sometimes I feel that very low circulation of blood and soon it will be numb. This happens after swimming too. I thought may be my shoes but then it happens without it too. Is there any connection to thal minor? If I do more exercise, more pain. Sorry if this is unrelated, now I have become so much skeptical about thal minor. I don't do much exercise, just swimming every alternate day for 20 min max, but walk 15-30 min everyday. I also do yoga in the morning for 20 min. My age is 31 years.
Should I see a doctor? Even I don't know to which specialist I should go. Any advice please!
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There are several possibilities for leg pain. The simplest is cramps that develop from a loss of electrolytes like sodium and potassium. If an electrolyte drink like Gatorade or anything similar, helps relieve the pain, it's probably a mineral depletion. Another nutrient that is known to be involved is magnesium, which is extremely important to muscle development and health. I typically suggest magnesium for thal minors anyway, because it is needed for the health of red blood cell walls. 500 mg daily is suggested for muscle issues.
Some other more serious causes of leg pain that are "peripheral artery disease, a decrease in arterial blood supply due to narrowing of blood vessels to the leg," and blood clots. PAD would probably not be considered because of your age. Again, the clotting connection is a possibility in miscarriage, so this may also be a possibility. This type of clot in the leg poses no danger of embolism, but it is a health issue. Vitamin E can help. If a doctor suspects clotting, a daily baby aspirin may be the recommendation. There is a good article that includes a discussion about leg pain at http://www.emedicinehealth.com/leg_pain/page2_em.htm#causes The page begins with physical trauma related causes, which as far as I know, aren't involved. Review the traumatic cases to rule out any possibility and then scroll down to the Nontraumatic Leg Pain section.
I would try the easy approach and try electrolytes and magnesium along with vitamin E. If clotting may be an issue, you might want to try a daily baby aspirin. If you don't get improvement with potassium or magnesium, you might want to talk to your doctor. If there is any suspicion of clotting, the doctor might want to order an ultrasound of the legs to make sure there are no small clots.
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Hi there!! fyi, I'm going to start a new post right now regarding my successful pregnancy story....stay tuned!
Elizabeth
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looking forward to it..!! Let me know the thread once you post it.
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Thanks Andy,
Yes, you are right. I tend to have cramps more often during swimming. I shall try the electrolyte drink and magnesium. I saw it at the Puritin's pride, High potency magnesium 500mg. I'll order soon. As you know I am taking 400 IU Vit. E. Crissy took 800IU vit E. Should I take two of those if it is o.k now or I should wait till I become pregnant. I don't know whether clotting is the issue. How can I know that? I mean what symptoms or do I have to go for lab testing? I can look my blood cells in my lab..:-) if it is helpful.
After this approch, if it still remains, which specialist should I go to?
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hi! I posted it - it's called Finally!! Successful pregnancy!!! :)
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Hi Sciencepassion
My daughter doctor's (Neurologist) recommendations is that the electrolyte drink (sports drink) be taken 20 mins before the starting of the swimming session and drink water during the session.
Regards
Catherine
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Thanks Catherine, I'll keep this in mind.
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Hi Andy,
Before I place the order I just want to make sure with you the right dose . I am going to order Liquid vit. D3 5000IU, Bit B complex sublinqual Liquid with vit. B-12, 1200mcg, High potency magnesium 500mg.
I thought may be I have Vit. D deficiency. My Prenatal has only 8 mcg Vit. B12. Magnesium as you suggested. Can I increase Vit. E dose from 400 IU to 800IU? My folic acid intake is 1200mcg at presently.
Let me know the right dose for me to prepare myself for healthy pregnancy.
You have been extremely helpful and thanks a lot..!! I trust you totally :-)
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sciencepassion,
The doses are good. I would suggest if possible that you get a vitamin D test first, so you know what level you're already dealing with. This baseline is important for determining dose and sometimes approach to raising the level. I suggest starting with 400 IU natural vitamin E. Get the mixed tocopherols, as they work much better as a complex. A dietary consideration is to make sure you get fresh fruit regularly. Some fruits like blueberries are high in antioxidants. Watermelon is a good source of nitric oxide inducers, which is very important for the health and flexibility of blood vessels, which in turn is very important in the context of trying to provide an adequate supply of blood to the whole body.
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Thank you very much Andy..!!
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you know Andy, just two days I took Gatorade and my leg pain is gone..!! My goodness, you are awesome. No numbness, no tightness and no pain..woo hoo..!!