Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: Narendra on August 14, 2009, 10:25:00 PM
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I have been reading a lot of members coming to the site and asking questions related to Thal Minor and Pregnancy. While members can use the thalpal search engine to search what's already on the site, I understand that is a difficult task as some members are new and might NOT know how to navigate and find all the valuable information on this site related to pregnancy.
I have used the search engine and got all the related posts here :
Sorry, there are some sad posts here, but we want to have them all for members to read and prepare.
Thal Minor and Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=2619.0
Pregnancy with Thal Minor
http://www.thalassemiapatientsandfriends.com/index.php?topic=2823.0
Questions about Thal minor/pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=1189.0
HbC Trait and Splenomegaly in 3rd Trimester Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=549.0
2 weeks from due date (Blood Transfusion during Pregnancy)
http://www.thalassemiapatientsandfriends.com/index.php?topic=3028.0
Pregnancy Complications (relatd to HELLP/Preeclampsia symptoms)
http://www.thalassemiapatientsandfriends.com/index.php?topic=1399.0
Lost a baby during pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=2866.0
Low hb during pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=2700.0
Beta Thal. Minor and iron supplementation in pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=375.0
Hematologist Recommending Transfusion during Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=1627.0
Hypercoagulable state (blood clotting disorder) during pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=109.0
Note in this post : I am Thal Minor and experienced Intrauterine Growth restriction in both pregnancies, my daughters due to calcification of the placenta causing oligohydramnios , and my son due to subchrionic hemhorraging and complications of my Thal. Sometimes babies when faced with little to no nutrition coming from the placenta will suffer too much damage in the early trimesters to carry on.
Pregnant with Thal Minor
http://www.thalassemiapatientsandfriends.com/index.php?topic=1914.0
Thal minor and pregnant and having issues blood pressure, shortness of breath
http://www.thalassemiapatientsandfriends.com/index.php?topic=1736.0
Thal Minor and Pregancy - note member - drievermom had to take transfusion
http://www.thalassemiapatientsandfriends.com/index.php?topic=416.0
Supplements during Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=394.0
B-Thal minor Pregnant w/Twins & High Iron
http://www.thalassemiapatientsandfriends.com/index.php?topic=1623.0
Iron Supplements During Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=1433.0
Pregnant with Thal minor (Low Hemoglobin)
http://www.thalassemiapatientsandfriends.com/index.php?topic=1756.0
Spleen and Pregnancy
http://www.thalassemiapatientsandfriends.com/index.php?topic=707.0
Thal Minor and Sickle gene
http://www.thalassemiapatientsandfriends.com/index.php?topic=722.0
Thal Minor Alpha + Thal Minor Beta plans to have another child
http://www.thalassemiapatientsandfriends.com/index.php?topic=1082.0
Couple with Thal alpha and Thal beta trait Note: Varition in alpha gene
http://www.thalassemiapatientsandfriends.com/index.php?topic=1337.0
Pregnant, iron dropping
http://www.thalassemiapatientsandfriends.com/index.php?topic=1216.0
Pregnant and Low HB
http://www.thalassemiapatientsandfriends.com/index.php?topic=3187.0
Proactive member got herself help - Pregnancy and Transfusion
http://www.thalassemiapatientsandfriends.com/index.php/topic,4644.0.html
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Thanks a lot Narendra for you effort and time. It is very helpful :wink
manal
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Great job, Narendra. I have stickied this thread so that it will be easy to find in this category.
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Hello Narendra,
Thank you so much, this is very useful.
Sunayna x
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Narendra,
Thank you for your hard work this will be very helpful!
Sharmin
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I have read through many of posts regarding thal minor and pregnancy, however, I was hoping to get some more information regarding what the harm may be to the baby in this situation.
I am 24 weeks pregnant and my last hb count at 18 weeks was 8.2. My doctor has said that if I go below 8 he would recommend blood transfusions. I am not certain that I want to have blood transfusions at this point. If it just means that I have to deal with the symptoms, I am ok with that. My main concern is the baby. What risks are there for the baby if I do not get blood tranfusions?
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Hi Michelle,
Please see http://adam.about.com/reports/000057_1.htm
Anemia and the Pregnant Woman
Iron deficiency occurs in 20% of pregnant women in developed countries. Even worse, 50% or more of women in nonindustrialized nations become iron deficient and between 30% and 50% are deficient in folic acid. Severe anemia is associated with a higher mortality rate among pregnant women. Mild to moderate anemia, however, does not pose any elevated risk.
Pregnancy increases the risk for anemia in different ways:
* Pregnancy increases the body's demand for folic acid and, therefore, poses a risk for deficiencies and an increased risk for megaloblastic anemia. Low levels of folate during pregnancy increase the risk of neural tube defects in newborns.
* Pregnancy also increases the demand for iron, thus posing a risk for iron deficiency anemia. Pregnant or nursing women require 30 mg of iron per day. Maternal iron deficiency anemia is associated with increased weight or size of the placenta, a condition that may pose a risk for later high blood pressure in the offspring. Pregnant women with low hemoglobin levels (the iron-bearing component in the blood) have an elevated risk for pre-term or low birth weight infants. (However, iron supplements do not appear to have any effect on these complications.)
* Pregnancy is also associated with fluid retention, which in turn may produce high volumes of plasma (the fluid component of blood). This can dilute red blood cells, which may lead to anemia.
* After delivery, heavy bleeding, which occurs in 5% to 10% of women who have given birth, can cause symptoms of anemia.
Diagnosing of Iron Deficiency During Pregnancy
A diagnosis of iron deficiency is problematic in pregnant women. The standard test is a measurement of ferritin levels, which are low in most people with iron deficiency. Pregnant women, however, may have high ferritin blood levels into their third trimester but still be iron deficient. A newer test that measures a factor called serum transferrin receptor may prove to be a useful way of diagnosing iron deficiency in women.
Preventing Anemia in Pregnant Women
Iron Supplements. For the past 40 years, iron supplements have been recommended for all pregnant women. This practice has been challenged recently, however. There is no clear-cut evidence that the mild iron deficiency in most pregnant women experience is harmful. In addition, iron supplement causes gastrointestinal side effects and may not be completely harmless. On the other hand, a 2003 study reported that women who took iron supplements had children with higher birth weights than those who received placebo. (Iron pills had no affect on anemia, however.)
Some experts suggest iron supplements for the following women:
* All pregnant women whose hemoglobin levels are less than 11 g/dl, and
* Pregnant women whose serum ferritin levels are low beginning in their 20th to 24th weeks of pregnancy.
Vitamin Supplements. Women who are trying to conceive, who are pregnant, and who are breastfeeding should take 400 mcg of folic acid a day. (They should be sure this is folic acid and not folate, which is the natural form -- but supplements at the same dose are half as potent.)
Pregnant and nursing women who are vegetarians should be sure to have supplements of folic acid and other B vitamins as well, since many of these nutrients are found primarily in animal products. Of particularly importance, vitamin B12 deficiencies during pregnancy can also produce anemia in both mother and child.
Diets Rich in Vitamin C. Eating foods rich in vitamin C can help absorb iron.
Because this involves thal minor, some adjustments to this advise are necessary. The dose of folic acid should be 2000-5000 mcg daily. If iron deficiency is demonstrated by iron studies, iron supplements should be taken. I agree that there is no need for transfusion until the Hb is below 8, unless you are experience constant tiredness and fatigue. If you are having a problems with extreme fatigue, then transfusion would be indicated now. The Hb is a bit misleading during pregnancy because the total plasma volume increases, resulting in a relatively lower HB, even though the true Hb has not dropped as low as is measured, so the physical condition of the mom has to be taken into account. One other thing I always recommend is to take 400 IU natural vitamin E daily. This is very important in helping to prevent miscarriages in thals, who are prone to clotting problems between the uterus and placenta.
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Hello all. It took me 2 or so weeks to join after reading the site before registering and posting; finally a place to understand and be understood. It made my cry, but wanted to join once I composed myself. :smileblue
I'm ßTM, 51 with a ßTM 13 yo daughter. Wow. And thank you for these indexed posts on thal pregs. Obviously I'm past my repro years now (I'm now perimenopausal, actually), but could relate to preg symptoms many have described and wanted to share my experiences with you new(er) moms and dads. Aside from the symptoms I've seen posted here of anemia, shortness of breath, fatigue—may I toss in a couple more symptoms/scenarios I experienced, for documentation purposes?:
• Cardiomyopathy (heart wall dysfunction causing incompetent pumping; not recognized til years later) couldn't climb DOWN stairs; extreme dizziness, shortness of breath, fatigue. Had Ejection Fraction of 30.
• extreme edema (started in 2nd month) massive to the point of deformity and put on bedrest; displacement caused back problems and could no longer walk (slipped disc and sciatica nerve damage). Had to remain hospitalized my 9th month to monitor me/my baby
• early false labor, preeclampsia, excessive bleeding at (normal) delivery
• my ßTM baby had to be "returned for repairs" after 2 days due to HIGH RBC that weren't oxygenating properly, becoming cyanotic, plus brachycardia (slow HB)
• I should have had a transfusion; was severely anemic and dehydrated; could barely nurse (only 1 month).
I was so happy with my husband and pregnancy, I willed myself thru it all. No doctor was willing to venture into thal theories, everything was treated separately. After reading all your posts and this forum, I shake my head and well-up when I think of how so much could have been managed differently or prevented altogether.
My overall health has declined following this one pregnancy and was told not to have more (my one single regret).
Following exposure to Preschool germs, with lowered resistance I developed asthmatic bronchitis, now COPD. Because I have started swelling again, I will be undergoing tests this week to determine returning Cardiomyopathy and possible Pulmonary Hypertension. So, I ask: Is there anyone with any experience with ßTM correlated with Pulmonary Hypertension? With cyclic edema in left lower extremity (leg), then both? I would greatly appreciate any and all input. Thank you.
I venture to say that all these conditions have one basic root. When cells cannot oxygenate and cycle properly (sorry for lack of med terms/details), all kinds of systems incompetence and failure precipitate insidiously. Doctors only treat symptoms, and only as separate because after all, ßTM is asymptomatic and any idiopathic condition might just be in your head. :wink
In fact, I was once told prior to my dx of cardiomyopathy that I had Anxiety (which imo is lazy-speak for doctors who are arrogant or unskilled/unmotivated diagnosticians. Those are fighting words to any competent female who knows her body and is looking out for the best interests of her baby.
I'm winding this up with the topic to say BEWARE and don't let any doctor, esp a gyno or hemo doctor tell you that ßTM only has mild anemia symptoms, if any. I urge new moms/dads to find another doctor who cares enough to do the right thing by you and your baby. Pregnancy with ßTM can have serious, long-range ramifications—and the fallout is so regrettable when it is so PREVENTABLE.
Thank you for this forum. This alone has provided some vindication of medical suspicions. If my experiences help—lovely! ...if only for prevention and awareness. Good luck to you all wanting kids! Parenthood is a joy and children a blessing... no matter what.
:biggrin
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Thank You so much Deb :hugfriend for this detailed post,it will definitely help lots and lots of new BTM moms and people who are recently diagnosed with BTM,
:welcomewagon .
Zaini.
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Hi. Nice to meet you all. I am glad to found this site. I have thalassemia Minor since I was born. My HB is always below 9. Usually 8 or something.
I am now 6weeks pregnant. Last time before my test pack (Dec 14); my HB was 7.5 and Hematocrit was 25.5 (low). My Fe was 149 and Ferritin was 336 (High).
I met my hematologist already. He said I dont need to worry as long as my HB bigger than 6. As if its 6, transfusion is a must. I am Indonesian and I am living in Japan now, and I believe the doctor here doesnt have much experience with Thalassemia.
I just worried about my pregnancy. Now I am taking 800mg Folic Acid since 4 weeks of my pregnancy. I know it was a bit late, but I didnt realize that. FYI, I am pregnant with IVF (in vitro fertilization). I had MC 2 years ago.
My questions are:
1. What should I do with HB (perhaps now lower than 8) during my pregnancy? I took bedrest for 2weeks already, but from tomorrow I have to go to my university.
2. Is there any relation between Thalassemia Minor and preganancy? I am alwasy wondering that its hard for me to pregnant because I had this thalassemia.
thank you very much for you kindly help and answers.
Regards
-Aya-
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Hi Aya,
I hope you have read some of the posts concerning thalassemia minor pregnancies that you can find in this thread. There is much information here and as you read, you will learn that many thal minors do experience problems during pregnancy, especially miscarriages. Of course, if you mention this to your doctor he may tell you that this evidence is anecdotal and not scientific, but I will insist that it is no coincidence that so many thal minor women experience the same problems during pregnancy. We have heard from many dozens of thal minor women about problems during pregnancy and miscarriage is common, and many women have had multiple miscarriages. You will find very little acknowledgment of this among medical professionals, but frankly, we have far more contact with thal minors than most medical professionals will encounter in a lifetime.
I don't agree with allowing the hemoglobin level to drop to 6 during pregnancy and many doctors will transfuse a woman once her Hb drops below 8. A physical analysis of the woman should also be utilized and transfusion done on a case by case basis depending on the health of each woman. A woman forced to bed rest by low Hb should be transfused in my opinion.
Normally, thal minor women do not have trouble getting pregnant but many do have problems having successful pregnancies. I believe this can be minimized if doctors are instructed to watch for any signs of clotting disorders during the pregnancy. When this is found, the solution is often as simple as taking one baby aspirin daily during the pregnancy.
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I would like to share my pregnancy story if I may. My baby is currently 4.5 months old and strong and healthy. Sadly this wasn't the case at his birth... I am 29 with Thal Minor. Throughout my pregnany no special attention was paid to my condition, with all the docs and obs saying Thal Minor had no bearing on my pregnancy, low hg levels and iron deficiency. At week 30 my ankles blew up like balloons. Ob said this was "normal". Blood pressure and protein in urine went sky high, hg levels were at rock bottom. I was told to rest. At week 35 my husband had to rush me to the closest hospital (1.5 hours away from our home) for what turned out to be a torn placenta. By the time we reached the hospital 50% had torn away and my son was born by emergency c sec flatlined and without breath. The docs still won't admit that this had anything to do with Thal minor, however I am not so sure. Sadly, I was booked to see a haematologist just 2 days after he was born.
My advice to anyone going through a first time pregnancy is to just be extra careful and don't doubt yourself... no one knows your body better than you and doctors just don't know enough about Thal to have any idea what to do.
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Hi Sophie,
Thanks for your story and your advice. We have heard many stories about problems in thal minor pregnancy and problems with the placenta and the flow of blood from the uterus to the placenta are common. I have even taken some flack at a health forum from a nurse practitioner who criticized the advice I give to thal minor women who are pregnant. It is quite obvious from the sheer numbers of women who have shared their story, that things can go wrong during pregnancy in thal minors, but the nurse's attitude was that because I was also drawing conclusions based on research done with major and intermedia, that I was comparing apples to oranges. When I make a statement that it is well established that a hypercoagulable state in thal major and intermedia and then say that from the evidence we've seen, it is very likely that this same problem exists in many thal minors during pregnancy, it is not comparing apples to oranges. It is making an observation that the same exact problems that sometimes surface in thal major pregnancies also surface in thal minor and it is likely there is a similar explanation to what happens in thal majors, I am making a hypothesis based on the facts that have been presented. I found her statement to be utter nonsense. Thalassemia is thalassemia and at all levels there are known problems. To dismiss this because the administrator is not a doctor is both foolish and a great disservice to whoever that nurse was advising. Somehow, in this nurse's mind, it is better to ignore the experiences that have been reported here, and thus give false assurances to a patient, rather than to share real stories about real experiences. I have to disagree because it's not about the egos of thal site administrators and nurse practitioners who answer questions at "health" forums. It is about the health and safety of the mother and child and that is ALL it should be about. False reassurances based on nothing more than one's ego can be downright dangerous and I feel a nurse that does this is in the wrong occupation. Unfortunately, this "I know better because I was trained" attitude is prevalent among those in the medical profession who think that medical knowledge is reserved to some medical cult. It is not and with the internet, we all have access to volumes of information that can teach us and is some cases, teach us more than the average doctor or nurse will know. I do know that I know far more about thalassemia than most doctors and nurses on earth and it's not bragging. It is a fact and it is through my own efforts that I have this knowledge. Challenging one who does not have the facts is one thing but challenging one because he didn't go to med school is just ego driven foolishness. We need more from the people responsible for our health and safety and we will continue to advise women what they should be aware of when pregnant. Most minors will have healthy, event-free pregnancies. But a substantial number will have issues and we would be remiss to say nothing.
Sophie, I am so happy to hear your child is healthy. It is sad that you had to experience what you did and we will continue to supply as much information about pregnancy in thal minors, as we can, so that more moms can be spared problems that include loss of their child during the pregnancy. Your story tells us once again that we have to ignore the criticism and try to provide the information that can help women have successful pregnancies.
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Hi Andy,
Thank you for your frank discussion on this issue. It gives me the confidence to 'push' the issue with my doctors should I be met with resistance in looking more closely at my Thal in light of my miscarriages.
As an update to my situation, last week we had our first visit to a fertility clinic here in Ottawa. Our doctor is keen to see my blood work results from the past year. As it also happens, in December I underwent testing at the Thrombosis Clinic here and so far I'm told that the results look okay (I guess no evidence of clotting) but one test result is still not back yet, so we'll see what becomes of that one. I'll still be seeing a hematologist in the next while and will be undergoing both blood and other testing with the doctor at the fertility clinic. This journey is quite involved, but hopefully we'll get some answers.
I would like to know, however, what women with thal major do when pregnant? When they are able to successfully carry a baby to term, what treatment have they undergone while pregnant?
I am taking extra folic acid now (3 mgs daily), and I do try to take B12, but it often leaves me feeling quite nauseated. What else can I do to fortify myself for the next pregnancy attempt if the results of all the fertility/blood testing come back and show that there 'appears' to be nothing wrong? After all, I have had three healthy children, so something can work, but perhaps now at my age (40) with the combination of Thal, I need a major boost or need to do what thal major women do......any further insight is greatly appreciated as always.
Take care everyone - and again, thank goodness for this site!
Elizabeth
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Elizabeth,
What form of B-12 are you using? The sublingual kind that you melt under your tongue is usually a very tiny sweet pill that is easy to use. Your folic acid dose is fine, but I would suggest a good multi-vitamin (iron optional based on your true iron status) and also natural vitamin E. Look for mixed tocopherols. 400 IU daily is a good dose and quite safe. (I have taken that dose daily for 35 years). It has many benefits and is a mild blood thinner which makes clotting issues less likely and should help promote the normal flow of blood.
I think much will depend on the Hb level you are able to maintain through the pregnancy. Some minors do require transfusions if the Hb gets down below 8. With your age, I am sure the pregnancy will be closely monitored which should help pick up on any problem if anything does develop. The thrombosis test result is reassuring and you may want to have that repeated later in the pregnancy.
Any of the moms have any tips for having a healthy pregnancy?
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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
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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
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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 :smiley
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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.
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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.
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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.
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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?
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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.
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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.
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I looked at my lab form and I saw the gynaecologist asked for a TIBC already. Put glucose on the form myself :yes
Even as Magnesium and Sink :rotfl I am naughty :shy
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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:(
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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.
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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
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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.
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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
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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!
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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!
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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.
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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)
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Hi Cheryl,
Good luck :hugfriend i hope and pray that your baby will be healthy.
Zaini.
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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.
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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
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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
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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
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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
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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.
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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°.
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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. :(
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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
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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.
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Hi Anthea,
I hope you and baby are well tonight and resting happily! I had a different doctor for each one of my 3 successful pregnancies (due to living in different areas) and what really amazes me is that during each one of my pregnancies I clearly had issues with low Hgb. Never once did any of the 3 separate doctors or hospital staff mention to me how low my Hgb was before or after giving birth. The most shocking was with my middle child, after she was born they couldn't figure out why my blood pressure was not coming up, they kept giving me fluids and acting rather odd, but no mentioned blood count, etc. After requesting records on everything I could, I found out that my Hgb was 7...that probably explained it since with BTM I am not usually too far below normal with my Hgb but enough to notice it is not within normal ranges.
My personal advice is find a doctor that you feel is listening and considerate of your own experience with your own body - otherwise you may be reluctant to discuss concerns with him/her and that is never a good thing!
Best wishes to you & your family :)
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Hi There,
I just found out that I am pregnant 4 days ago, I expect that I am 5 weeks gestation as we were monitoring my cycle so that we wouldn't get pregnant yet, but I am happy.
I have a 12 year old boy and a 6 year old girl. I was divorced and am remariied to an amzing man for almost 2 years.
I was diagnosed with Thal Minor 4 years ago and I have no knowledge of the numbers that everyone is speaking of. Once I was diagnosed, I was told to take a ferrous sulfate daily and eat well. Now that I am pregnant, I am more concerned and this site has given me a ton of great info.
I am nervous that I may have a baby with Thal Major as my husband is Black and we don't know if he is a carrier for Sickle Cell. We will be going in soon to get more info.
I am just hoping for support on here as no one that I know has ever even heard of Thal and my doctor represented the info in a way that made me not worry.
I am so, so, so tired. I am freezing cold all of the time. I am average heaight and maybe a little chubby. I am active and work full time. :dunno
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Dear MamaAwna,
Welcome to thalpal. My first thought is that the doctor who put you on an iron supplement may not be fully knowledgeable of thalassemia minor. Unless if one is iron deficient, the iron will not increase your hemoglobin levels: rather it can be harmful to you. Unless if you are truly iron deficient an iron supplement is not good for you - of course during pregnancy our iron requirements may be higher so it is ok to take whatever level of iron is contained in prenatal vitamins.
A healthy diet and good supplements, which are listed in the vitamins and supplements section of the forum are good for you - however considering that you are pregnant you need to be aware of which vitamins may not be good during pregnancy - and a general prenatal vitamin may be best.
You are right to have your husband tested for thalassemia and sickle cell anemia, and hopefully he will not be a carrier of either. It is good that you are aware of your own thalassemia status so that you can have your husband checked. In the unlikely case that you are both carriers, your child may still not have thalassemia major or thal/sickle because there is only a 25% of that happening - meanwhile there is a 75% chance of everything being fine.
It is great to plan ahead and be knowlegeable, but I would not worry about anything at this point - most likely everything will be fine. You are making good choices by checking everything ahead of time.
We are all here to support you during your pregnancy and for any other thal minor concerns you have as well,
Congratulations on your pregnancy and best wishes :hugfriend
Sharmin
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Thank you for your reply Sharmin! I am 9 weeks now and I am experiencing 'morning sickness' all day, exhaustion and sever smell/food aversions. I never had this before! My husband lovingly teases me saying that that I have higher pregnancy hormones because I am having twins! That is only his wish! :biggrin
Have a great week!
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Thank you for your reply Sharmin! I am 9 weeks now and I am experiencing 'morning sickness' all day, exhaustion and sever smell/food aversions. I never had this before! My husband lovingly teases me saying that that I have higher pregnancy hormones because I am having twins! That is only his wish! :biggrin
Have a great week!
Hi MamaAwna,
I wish you a beautiful and healthy life ahead and to your Angel [or should I say Angels? ;)]. :biggrin
-P.
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I'm 31y,17-18w pregnant with thal minor (Hb 8.2, low hematocrit,low MCV,low MCH).This is my 2nd pregnancy in 6y marriage.The first one was BO in 2009. I have just found our that my ferritin is high (175) and my TIBC is low (189). Does high ferritin+low TIBC always indicate anemia of chronic disease?Is there any possibility? My TIBC+ferritin are normal in 2010.
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hi all.. i am an old member here...
I am now pregnant at 6 weeks, and my Hb is 7.1. Before pregnant, I always have Hb 8 something.
My iron is normal..though my ferritin is high,336ng/ml.
My obgyn said i have to consul with hematologist, the problem is, I live in Japan where Thalassemia is a rare thing. I am now taking folic acid 2000mg, Vit E 660mg and B complex plus balancing my diet with good nutrition.
As long as I take bed rest, I am ok... But I still afraid of my baby condition..please give me some advices regarding to my condition.. I really appreciate it.. Thank you
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Tusrayya,
Congratulations on your pregnancy. Although Hg levels can often be low for thalssemia women during pregnancy, and often this doesn't usually affect the baby in any adverse way - some haematologists choose to transfuse pregnant a mothers at least once during pregnancy. It helps the mother feel more energy and in some cases is needed for a health pregnancy. Doctors may also transfuse near the end of pregnancy to get the Hg up before delivery in case the mother loses blood during delivery - if the Hg is already very low it might get too low after the birth.
Your hematologist will know what is best for you. He/she may check your spleen size as well. Be sure to take a prenatal multivitamin.
Best of luck,
Sharmin
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The form of folate is also important. L-methylfolate works best. You could even raise the dose as high as 5 mg daily.
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Thank you Sharmin and Andy for your advices...
I ordered the L-methylfolate already through amazon, since they dont have it in Japan.
I bought Life Extension brand, optimized folate L-mthylfolate 1000mcg. Hopefully this brand is the good one.
Should I include Vit. B12 as well ? Thank you in advance.
regards
Aya
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Yes, do continue B-12. Sublingual forms of B-12 that dissolve under your tongue are best absorbed. The folate is a good choice.
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Hi, since my Hb dropped to 6.4 today, my hematolog advice me to do the transfusion for the sake of me and my baby. Hopefully after the transfusion I will getting better and my Hb will stay on the good level, 8 something through my pregnancy...
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When the Hb drops that low, transfusion is always needed. I assume you are thal intermedia.
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Hi Andy.. I have no idea what thal i have. But this is my first transfusion..
I never check what kind of missing chain in my Hb... So Have no idea wheter I am thal alpha or betha.
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With a normal Hb around 8, you are not thal minor. It would be classed as intermedia.
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Really..? I always thought that I have minor since I dont need transfusion before.
Thank you Andy! So is it possible my baby will have thalasemia as well? My husband is normal.
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An Hb that is chronically below 9, without long term iron deficiency also present, would not be classed as thal minor. A hemoglobin electrophoresis test would reveal more. At your Hb, iron supplements should be avoided, as your body will absorb too much iron if given the chance. This may already be happening with dietary iron to some extent. I would recommend the electrophoresis test to confirm thal intermedia and make sure no other problem may be adding to the low Hb level. Folic acid in the form of L-methylfolate is a must.
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So, after poking my head I here a few times a year or so ago, I then fell pregnant and dropped off pretty much all internet places I used to visit hehe. Want to share the story of my pregnancy in the hope that it could help someone else. I've known about my thal for a few years now, never needed a transfusion.
I am now the proud mumma of a little boy. He's 7weeks old, but it's been an adventure, a rough start for him, so I just wanted to share our experiences .
Was considered high risk in my pregnancy due to mental health ( GAD and ADHD), high BMI, borderline hypertension, family history of type 2 diabetes, asthma, and my thal (εγδβ Zero thalassemia ). I tried to insist to the obstetric doctors that my type of thal can affect the baby, they insisted that because my husband wasn't a carrier, that I was wrong. I figured they would know because I ( wrongly ) assumed they had read the full report of the genetic testing, and that would of informed them of the rate of inheritance for this condition, and its severity in newborns.
Pregnancy went along. Kiddo wasn't a big mover, only really felt him occasionally and only from 24+ weeks. Everyone assumed it was due to my placenta bring at the front and being over weight, but the coming events proved that he was most likely a tired lil man inutero.
Ended up with gestational diabetes, was eventually on both metformin and 2 diff insulins. Also at 35ish weeks ended up with gestational hypertension with was borderline pre eclampsia, but they just watched.
Then suddenly my waters broke at 36+ 3, with meconium present, and everything in my pregnancy turned upside down. I was induced , very quick labour, absurd amount of pain, and my little boy was distressed and got worn out from labour, my contractions stopped, but got him out naturally ( forceps though) but he wasn't breathing, low apgars, he was jaundice and anaemic, had blood under the skin at the back of his head ( subgaleal haematoma), low birth weight, and got wisked to NICU.
Because the hospital had no bloody clue about εγδβ Zero thalassemia, hadn't read my notes properly, they just assumed that his birth complications were due to being premmie. It wasn't until he was over 2 weeks old, we had gone home and been re admitted due to poor weight gain, severe feeding issues ( that we had in hospital but the midwives were absolutely useless and made it worse cos they didn't listen to me) that the neonatologist actually chased up my insistence that he and I had similar neonatal period, that it can affect inutero and infancy, that they called a paediatric haematologist who confirmed the high likelihood he has my condition.
He's since had 2 blood transfusions. His hb went from 94 to 120 shortly after birth, and then dropped off continually till it hit 66 so they transfused him . We were then referred to Westmead Children's hospital, and I spoke to the first person since he was born who didn't think I was a hypochondriac mother, making a fuss about a baby who was just being difficult , insisting to me he was perfectly healthy now, and that he was a different baby from in NICU (where he had more energy) . His haematologist is amazing. She told me to call up when he started to go backward with feeding and I did and we were admitted that night. His hb was 69. She said my awareness and response to him not coping was spot on, that made me feel so much better.
4 days later we had a follow up, his hb was 114 - where mine is normally!!
Our specific type of thalassemia is so rare, there is just 1 other family in NSW ( our state) with a similar deletion. It turns out that before 6 months, when adult hb is supposed to have taken over, transfusions are often needed. He will need further transfusion top ups, but as the adult hb kicks in more, they will be further apart. The first gap was just 19 days.
I knew it was super rare, but I didn't realise there was anyone who knew anything remotely about it. And I didn't realise the extent of the severity for Bub under 6 months. I never had a transfusion but I was known as "the pale one" in hospital, and I was jaundice and anaemic and did want to eat, tired, colicky etc- same as my little man. I wasn't as early as him but I was small and I was 41 weeks.
I took 5mg of folate through the whole pregnancy. My hb didn't do anything that required transfusions. I didn't have the most likely issues that are reported in the research ( oligohydraminos and IUGR) but he was still small and early considering the gestational diabetes, and uterus was measuring ahead for weeks of gestation.... So I guess it could of turned out a lot worse.
Any who, I hope anyone who is pregnant on this forum. You gotta advocate for yourself and your bubba. He was my first. I had trouble advocating cos I had a tired exhausted bubba who was being forced to breast feed with a tongue tie and severe anaemia, feeding every 2-3 hours, taking torever to feed, and I got literally no sleep. It's improved now , he's gone from a birth weight of 2414gs to 3310 gs. He doesn't look like a skinny premmie anymore thank god.
Even if they tell you you Bub can't be affected, they aren't always right. Trust your instincts. Get a second opinion until someone listens to you.
Sorry for the absurd length!!
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Hi Everybody,
Thank you for allowing me to join this friendly group. I did look at the other links but could not find much in regards to the medications I take and their impacts with al thal minor. I only found out I was al thal minor when I was in hospital because I was so depressed. They did a lot of blood work on me which is when I found out I was so terribly anemic and ended up having those iron infusions. Im the first in the family to find out I have this disorder. I want to start trying to conceive at the end of this month (Aug 2017) with my husband. As you can see by my below information I have numerous things to be concerned about and one of them being what impact my al thal minor is going to have on me when ttc.
BLOOD TYPE: A+
MEDICAL CONDITIONS:
Severe depression
Anxiety
Polycystic Ovary Syndrome (PCOS)
Endometriosis
Mild Sleep Apnea
Alpha Thalassemia Trait
Asthma
MEDICAL NOTES:
Minor cleft pallet – made suckling extremely difficult as an infant.
Had surgery to remove PCOS and endometriosis in Dec 2012.
Suicidal over dose – 1st Sept 2014. Remained in ICU for 3 days and was then transferred to
the psychiatric wing until 10th Sept.
Had 2 iron infusions done in one go in Sept 2014. Went from 65 pre-iron infusion to 170.
Iron levels kept dropping so have been taking prescribed iron tablets ever since.
Low vitamin D in Oct 2014. Went from 35 to 117 once treated.
Had 15 x ECT treatments done in Jul 2015 to ease depression.
MEDICATIONS:
Valdoxane 25mg - 2 tablets at night
Bupropion (Wellbutrin SR) 150mg - 1 tablet at morning and 1 tablet at night
Lamotrigine (Lamictin) 100mg - 1 tablet at morning
Lamotrigine (Lamictin) 25mg - 1 tablet at morning
Dexamphetamine 5mg - 1 tablet at morning
Loramzepam (Tranqipam) 1mg - when needed for anxiety
Diabex XR (Glucophage) 1000mg - 1 tablet at morning and 1 tablet at night
Ferro-Gradumet C (Ferrimed DS) - 1 tablet at morning
Folic Acid 5mg - 1 tablet at morning
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Hello Andy,
Taking iron supplement during pregnancy is necessary but if hb level low then it harmful for Thal minor pregnancy?
At my pregnancy time when doctor found that I am Thal minor then she stop iron supplement and advised for only folic acid and take transfusion for low hb after every 2 days gap..
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Beanaleeny,
Have you ever had a full iron panel done? Iron should never be given to thal minors unless that has been done to confirm deficiency. Ferritin and Hb are not enough to determine this. Serum iron and total iron binding capacity should also be tested. Long term iron supplements taken when not needed can eventually damage the organs. Alpha thal minors usually will benefit more form a high dose of folate, 2-5 mg daily, than they will from iron. Has iron raised your Hb level?
Also, since thal is inherited, it means one of your parents also carries it. Did raising your vitamin D help with the depression? Low D exacerbates depression, so stay on the D.
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Lokkhi, many thal minors do need more iron during pregnancy, but folate is usually more important. An iron panel can tell if you need more iron. It should not be assumed without doing the full iron panel.
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Hi Andy,
Thank u for the extra info. I met with the haematologist last week. He took bloods so will report back to you when I get the results on 11-09-2017.
Thanks so much!
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Lokkhi, I don't understand the question.
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Sorry Andy for mistake..
If at a time 2/3 transfusions need during pregnancy for low HB then how many days gap you support between two transfusions..
Is it risky if HB below 9 at conceive time ?
Please advice..
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Transfusions usually won't be given unless the Hb is below 8 and close to 7. It is not risky to be below 9 as long as it's not low like 7.5.
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Thank you Andy.
Last time when my HB was 7 during pregnancy then doctor advised for 3 transfusions with 2 days gap.
Now my HB again 7 and trying to conceive..If I get pregnant then I will take transfusion.
Though I have no miscarriage record but taking 200 iu Vitamin E daily ..
How many days I will continue Vitamin E after pregnancy?
Please advice the below supplements during pregnancy safe or not !!
Vitamin E
B Complex
Calcium
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I think you should always take vitamin E. I have taken it daily for over 40 years. Those supplements are all recommended.
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Dear Thalassemia friends and especially Andy,
I found this web forum earlier this year when I was research having a Thalassemia trait and pregnancy.
Through a routine blood test in March 2016, my primary care physician told me it was possible but not certain my hemoglobin was abnormal. I was told I’m not in a high risk group but that I should mention it to my OB/GYN when trying to conceive which I did. I became pregnant in January of this year, only to have a missed miscarriage at 8 ½ weeks (discovered at the 11 weeks ultrasound). 5 years earlier I had a missed miscarriage (where the body continued to support the pregnancy but the fetal heartbeat has stopped) at 16 weeks.
I had further testing at this time of the loss in March which revealed that I have the alpha thalassemia trait based on my MCV. My red blood cell count was 5.82M/uL and my MCV was 64fL. In neither of my previous losses was I able to convince the doctor to provide genetic testing or other fetal testing after the miscarriage. After the miscarriage in March, I did have a whole battery of tests to look into other factors for the miscarriages, things like testing for uterine adhesions, clotting disorders, thyroid testing, genetic translocation in me and my husband, antiphospholipid syndrome, etc. My current partner was tested for the Thalassemia trait and appears to have normal hemoglobin. (I do not know the status of my partner from 5 years ago.)
I did speak with a genetic counselor about the thalassemia trait who told me the medical party line: that the Thalassemia trait shouldn’t be a factor in the two miscarriages since my husband is not also a carrier. Though if he is a silent carrier of Alpha Thalassemia, we could potentially have a child with Thalassemia H.
I also found this web forum and read a lot of the entries here about having a thalassemia trait and pregnancy. I believe these were most often directly in regards to women with beta thalassemia minor. I was very sad to read of the many instances of miscarriage. To the best of your knowledge, do you know if these miscarriages been “missed miscarriages” like mine?
I am now pregnant for a third time. We had an appointment last week that showed a strong fetal heartbeat at approximately 9 ½ weeks which I’m thrilled about. In about a little over a week, we’ll have NIPT testing to look at the baby’s genetics.
Based on what I’ve read on this website and elsewhere, I have some questions.
I’ve seen the recommendation here to monitor during pregnancy for any signs of a hypercoagulable state, thrombosis, sub-chronic hemorrhaging or anemia. How would my doctor monitor for these things? And how often should this monitoring occur?
I am very concerned about placenta health but my doctor says there is no way to monitor for this. My mom did have a placenta abruption while carrying me and I was born small (3 pounds 10 ounces at 38 weeks). Is there a way to check to see if the placenta is getting good blood flow at this stage in a pregnancy or at a later stage? My OB/GYN said there was no way to look at this at this point.
I am currently taking a good prenatal vitamin, extra folate (my total is about 1600 mcg/day), vitamin E 200 IUs, vitamin C and vitamin D, DHA.
I have a questions about the recommendation seen here to take vitamin E 400 IUs as I’ve read elsewhere this can be dangerous. Have you seen any research that non-synthetic vitamin E is dangerous? For now, I’d decided to split the difference and take 200 IUs.
I have very mixed feelings about taking baby aspirin. My OB/GYN did tell me to take a baby aspirin daily to prevent preeclampsia at my 8 week visits when I was pregnant in March. (My OB/GYN does not think the alpha thalassemia trait has any bearing on my previous losses.) My last pregnancy I did start taking baby aspirin at 8 weeks but then lost the baby shortly thereafter though I didn’t know it until the week 11 ultrasound. I also developed patches of red skin on my torso. I also took baby aspirin throughout the summer and noticed it had a huge effect on my period in that my period was about 2 days longer and the blood was bright red for the entire cycle. When the red patches of skin reappeared and the initial fertility consultation did not recommend baby aspirin I stopped taking it. (I took a drug (Femera) to encourage my egg to release but otherwise did not undergo fertility treatments.) I’m hesitant to start baby aspirin again because of my experience last time. Have you heard of alpha thal minor women getting red patches or losing a pregnancy when taking baby aspirin? Based on my blood work, please advise regarding how baby aspirin would or would not help me.
Many thanks for reading and responding to this long entry. I’m an anxious momma bear over here. It is frustrating that my doctor does not consider my concerns valid.
Sincerely,
Michele
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Natural vitamin E is quite safe. Synthetic is not in doses more than 100 IU. (I have years ago explained the massive flaws in the meta analysis that claimed vitamin E usage hastened the deaths of those with mortal illnesses. The study overlooked the key fact that people with mortal illnesses desperately try all sorts of therapies to try and stop the inevitable. All the analysis showed was that dying people try a lot of things to prevent their death and the sicker they are, the more things they will try). I have taken 400 IU natural vitamin E complex daily for 42 years. I just had my annual physical this week and the results were stellar. I swear by it. Its positive effects on the heart and circulation and the health of red blood cells should not be overlooked. I don't think there's anything better a pregnant woman can do to prevent miscarriage than take E. The same problem of DVT also is common in non-thal pregnant women. Testing for DVT is described below.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3939275/
D-Dimer testing and compression ultrasound imaging allows for safe and convenient investigation of suspected lower-extremity thrombosis
Doctors suggest aspirin. I do not favor it. I favor vitamin E, not just because it's a mild blood thinner, but because it actually aids in the transport of red blood cells through the circulatory system and protects the integrity of the RBC walls. Folate and natural vitamin E taken by pregnant thal minors have produced the best results in reports to this group. I also suggest taking a sublingual B12 tablet, along with folate, to help keep the Hb up during pregnancy.
I cannot answer the question about missed miscarriages. It's a painful subject for most women, and they talk to me in confidence, but I don't like to ask a lot of questions.
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Thank you so much for your response Andy and for all the caring you put into this website.
Thank you for clarifying about vitamin E and DVT. I will increase my Vitamin E intake to 400 IUS over a couple days. I'll also look into a sublingual vitamin B12 supplement.
Wishing you all the best! I'm glad your health is stellar.
Michele
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Hello Andy,
How much Vit E you recommend during pregnancy ?