Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: juliewalker on February 21, 2013, 05:27:20 PM
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I am 26 and a half weeks pregnant with my first child - a boy! My husband and I are very excited. Although having the beta thalassemia minor trait hasn't really affected me thus far in my 29 years (aside from being somewhat anemic), it's really coming into play now. Back in November, my midwives sent me to the hematologist because my platelets and h&h counts were low. I was put on iron supplements (they wanted me to be on ferrous sulfate but I asked for ferrous gluconate since my dad and uncle, who also have thal, had been on that in the past), 324 mg twice a day, about 70 mg elemental iron total. I do my best to take it on an empty stomach (2 hours after and 1 hour before eating anything - tough when you're pregnant!) and with vitamin C.
Anyway, I went back to the hematologist on Valentine's Day and all of my counts had gone down! Platelets were at 149, hematocrit at 26.8 and hemoglobin at 8.3. B-12 was also slightly low, so they put me on 1000 micrograms of B-12 a day now. So far, they haven't told me to up my iron to three pills a day. The hematologist also mentioned something about getting a blood transfusion, and also that I may not be allowed to birth with the midwives if my counts don't go up.
I guess I'm just wondering:
1) Why have my counts gone down so low, even after 3 months of iron supplementation?
2) Is my baby getting everything he needs even if I'm not?
3) How can I up my blood counts before my 32 week appointment so I can give birth out of hospital?
4) I'm a vegetarian . . . do I need to start eating red meat?
5) Are blood transfusions considered generally safe for pregnant women? It sounds scary - what all does it entail?
If you can answer any of these, I'd appreciate it. Thanks so much for your time!
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Hi Julie,
Welcome to Thalpal!
I'll answer some of your questions and leave the rest ones for someone experienced to answer.
You should not continue on taking iron pills continuously until a series of iron panel tests are done. Excess iron supplementation can be harmful.
Secondly read meat also has somewhat excessive iron, but there are more great rich sources of iron which you can consume by staying vegetarian. Eat green leafy vegetables like spinach, etc. Also consider adding beet/beetroot to your diet/salad, they're rich in iron. Take 2 apples a day as well if you like them (who doesn't? :P).
Yes, blood transfusions are completely safe for all including pregnant. I've saw many posts and Andy's replies in past that in the later weeks of pregnancy, the Hb may go down and many thal minors are given/required to have additional blood transfusion - so don't worry, that's completely safe.
I'll leave rest to experienced ones to answer.
Best,
-P.
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Hi Julie,
Are you taking folic acid? Low platelets can be related to low B-12 and low folate. You should be taking a dose of 2-5 mg daily during the pregnancy (it does not matter if your folate test shows normal. Minors need high amounts during pregnancy. Best results come with a 5 mg daily dose). You should also take 400 IU natural vitamin E daily. The reason your Hb dropped in spite of iron, is because iron cannot affect the anemia of thalassemia. Your Hb is actually somewhat typical of minors late in pregnancy, and occasionally a minor does require a transfusion if the Hb drops much lower than 8. Folic acid will help to keep your Hb up, but the high dose should have been taken all along. As Pratik said, iron should not be taken by thal minors unless an iron panel has been done. Some thal minor women do need iron during pregnancy because they have iron deficiency also, but the two are not related in any way, so IDA should not be assumed based on Hb level alone. Your baby is safe.
Being veg does not pose any danger. Just make sure your diet is balanced and loaded with vitamins and minerals and especially antioxidants. Avoid empty calories and make sure every meal and snack involves nutritious foods. Get a good supply of vitamin C, also. Home birth is possible with a registered nurse midwife and back up with a doctor and hospital, as long as you are healthy.
Generally, thal minors can benefit from folic acid all the time, so you should continue with a dose of 1-2 mg after the baby is born. The best way to combat the anemia of minor is diet, nutrition and exercise. Don't expect much understanding of the condition from doctors. Do not allow doctors to prescribe long term iron supplements, as this can eventually cause damage to the organs if not needed, because the human body has no natural method of removing excess iron and it just builds and builds if taken long term. Antioxidants will be far better for you than iron.
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Thanks so much for the replies. It's so great to speak with people who actually understand thalassemia. My ferritin was tested (is this what you mean by an iron panel?). It was 23 in November but is now at 12.
My prenatal vitamin, which I've been taking since August, has folic acid, so that isn't a concern.
My hematologist told me today to up my dose to three iron pills a day (about 105 mg elemental iron). Would you say this is advised? I do take it with vitamin C.
Thanks again!
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Julie,
Your ferritin is low. Do you know if your serum iron is also low? It may be that your iron supplements have not been in a form that your body can absorb (this is common) and you need a different iron source. By concentrating on iron rich foods, you can adjust this. I am also a vegetarian and had very low iron have bleeding post-surgery. I could not tolerate iron supplements and raised my level back to normal by following an iron rich veg diet. How much folic acid is in your prenatal? It is usually only 400 mcg, and this is inadequate for thal minors during pregnancy.
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Dear Juliewalker,
I am a thal minor - my hg counts were very low in pregnancy as well - similar to yours. Partially the anemia is exasperated by the thalassemia and partially the level of plasma in your body is higher during pregnancy which makes hemoglobin appear falsely lower than it actually is - with the extra fluid in your body the hemoglobin seems relatively lower.
My hemoglobin recovered very well after I delivered the baby.
Sharmin
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My prenatal has 800 mcg. Should I take more in addition to this? I'm not sure about my serum iron level. Do you think I should take three ferrous gluconate a day as prescribed, in addition to working on eating a more iron-rich diet, or are the supplements blocking my ability to get iron from food? Are the supplements at least helping the baby, or could they be giving him too much iron?
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Folic acid is required to build red blood cells and platelets. Your platelets are low and this should be addressed. I have followed hundreds of thal minor pregnancies and the ones with the least problems have been those taking 5 mg (5000 mcg) folic acid daily, along with natural vitamin E. The nutrients going to the baby are regulated. I would not worry about the baby getting too much iron. I have observed that thal minor women do tend to have low ferritin levels and vegetarians also have low ferritin. I don't put much meaning into this, as ferritin bound iron is not being used by the body. If the serum iron is also quite low, iron supplements may be needed. I prefer diet as the more effective way to raise iron levels. Dark green vegetables would be very good, along with beans, nuts, sunflower seeds and dried fruits. Wheat germ can also be added to recipes when baking to add more iron. I cannot tolerate iron supplements, and after surgery induced severe anemia, I was able to raise my Hb back to normal by veg diet alone.
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By the way, 4 of my 5 kids were born at home. It is a completely different experience and there is no comparison to a hospital birth. If it is possible for you to birth at home, go for it. You have to observe yourself and regardless of what your Hb reading may be, you have to be the one to say you are strong enough to do it at home. As Sharmin mentioned, Hb is not totally accurate during pregnancy because there is so much added fluid that dilutes the blood and makes the Hb look lower than it really is. If you feel your health and strength are good, Hb should not be the deciding factor for a home birth.
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Hey Julie, since all of these folks have covered all the facts, I just wanted to give you some advice. You and I have a lot in common.. We're the same age, and I just had my first baby 5 months ago. My hemoglobin also fell similar to yours. My advice is to take care of yourself now and build your strength and try and get that hemoglobin up. Get lots of rest. I neglected myself a lot, was doing too much like superwoman or something. After the baby was born, there was basically no time to take care of myself, because as you will soon find out, they become your first and foremost priority. I wish I'd taken the supplements and had a good regimen with the different vitamins. So anyway just my two cents. Best of luck to you!
PrincessM's Mama
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I picked up folic acid supplements today but am a little concerned . . . they are 800mcg a piece, and my prenatal also has 800 mcg. Do I really need to take 5 extra folic acid pills a day? I also heard about increased cancer risk with too much folic acid. Should I be concerned? Thanks!
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There is no risk of cancer from folic acid use. Large doses of 40 mg daily showed no increased rate of cancer.
http://www.foxnews.com/health/2013/01/28/high-doses-folic-acid-dont-raise-cancer-risk-study-finds/
As I mentioned before, the most successful thal minor pregnancies have involved doses of folic acid at 5 mg and 400 IU natural vitamin E daily. With your platelet level at the low end of normal, both B-12 and folic acid are recommended.
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Well, I recently started taking 4.8 mg of folic acid and 400 IUs of Vitamin E daily and eating a much more iron-rich diet. However, my hemoglobin has dropped AGAIN, this time to 7.8, and the hematologist wants to see me in two weeks to talk about a blood transfusion. How long do you think it would take for me to bring my counts back up with the help of the vitamins?
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There's no guarantee that anything will raise your Hb, and because as the pregnancy passes, there is more fluid in the body, the Hb level will look lower than it actually is. In addition, if you are well hydrated when the test is done, the Hb will look a bit lower. Some people have some success using wheatgrass to raise Hb, but it doesn't work for everyone. I would suggest that you give yourself an appraisal of your health. If you feel good, a transfusion probably isn't necessary. If you are feeling tired and weak, a transfusion would be advised.
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Hi... i agree with Andy's point. During pregnancy everything goes haywire. In my case doc don,t approve for
Transfusion even i had 7.5g when i hd my eldest son . My gynaecologist wrote to the hospital for my admission on 38 weeks. Only during the 2nd blood test during admission, it fell to 7.4 only i had my transfusion.
When i had my 2nd baby, i had palpitation on 28th week though hb wasnt that low. I think it was around 8g. I had transfusion once and my hb maintained around there and no more palpittiona after that.
I think you know your body best. Idont think there are any miracle boosting the hb by short supplementation programme. I tried iron pills, inferon injection,eating iron rich food before i knew all this are inffective for the fact that i didn't know at that point i am thalassemic. I had iron overlod till this day. If you know you are not feeling the best then, i would suggest you get a transfusion. Otherwise, hb of 7.5 is fine and before i forget, stressing yourself, is in fact bad for you. It will not raise your counts, otherwiseif you are calm, happy, you will have a higher counts, personal opionion, though. Based on personal experience. I feel that when i worry a lot, my hb drops, if i dont start thinking about it, i had a higher hb.
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Thanks for the advice - I've been getting out of breath and my heart pounds like crazy after just a flight of stairs, and I've gotten some dizzy spells just sitting at my desk, so a transfusion may be warranted. I'm going to see the hematologist soon to discuss this.
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A blood test should let you know your levels but for me i rarely ask fo transfusion even if i havento to heave the stairs... :-) i'm usully dIzzy most of the time(brain fog) but i ignore it. If you are really unwell, then go and have it. I hate transfusion because i'm allergic.
I just came fo realise i had so many typo errors in my previous post because i typed on using tablet thats why these days i rarely posted anything. I just hate typing on the tablet.
Take care.
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I went to the hematologist again and my counts are still the same as last time despite the iron supplementation and the addition of vitamin E and folic acid. Everyone (the midwife, the hematologist, my mother-in-law, and my brother) has told me I look pale this past week without prompting. I've been needing to sit frequently and get tired very easily, plus sometimes have dizzy spells. So, I have to get a 1-liter transfusion tomorrow morning and am a little nervous about it. What should I expect?
The hematologist also wants me to continue at 3 ferrous gluconates a day after the procedure. Why do I still need to be on supplements (which I believe started to give me evening stomachaches ugh) after a transfusion? Thanks for your help!
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Hi Julie,
There are not much things to prepare, just be calm , cool. You may want to bring some books, ipad or ipod to entertain yourself during transfusion. I am not sure your transfusion setting in your hospital.
For me, I had different experiences, in the day clinic, where you just come(transfusion is pre-arranged) and go and also in the hospital when i'm pregnant. I suppose you should in the no 2 that i mention.
My hospital stays ranges from 2-3 days. Why you may wonder so long. First is because, the doctors hesitated to transfuse, because according to them, hgb 7.5 is not"low" enough. Second, when i had palpitation only(I'm talking about pulse of 120), the doctors "wondered" whether I should warrant for transfusion. So they just let me go home, and I come back again, to bother them with more palpitation, only then they agreed with the transfusion.
Okay, just a debrief about what happened to me. First if your transfusion is pre-arranged, I believe it would cut down the amount of time waiting for packed blood. Since you had done your needle prick, they may not want to prick you again before transfusion, but get down to transfusion right away. A normal transfusion normally takes 3-4 hours to finish. You are allowed to walk with the drip, get yourself comfortable either sitting or sleeping(if you can, but I can't because I don't like drip hanging around my hand so I will sit up and read, play my phone or watch the tv). You may want to drink some water so keep yourself hydrated. After the transfusion, they will wait for a while and then take another test to see your HGB. They may let you go back after that if the level satisfied them. You may also get an appointment to see your hematologist to discuss the next approach, whether this transfusion works for you.
Once you had your transfusion, you probably would feel much better. The are not much after care post-transfusion but just continue the regime you are used to do, eating the right food, getting enough rest to make sure that the RBC don't "expire" so fast. Watch out if you have any allergy, if you have allergy, you would feel it during transfusion. I normally get allergy but the last transfusion was allergy free, maybe its a washed RBC. Antihistamine would works with the allergy.
I'm not sure about the supplementation part. It could be that you still need to boost up your iron stores. Keep the regime of supplementation, nothing much to alter.
Be calm and sit back. Relax.
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My counts were low, when I had my son 30 years ago. I had a transfusion after I gave birth. If it comes to that, see if the hospital will let you donate your own blood, as I did. good luck