Thal Minor Pregnancy Posts

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.

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.

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!!

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

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..

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.

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.

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!

Lokkhi, I don't understand the question.

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..

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.

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

I think you should always take vitamin E. I have taken it daily for over 40 years. Those supplements are all recommended.

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

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.