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AIBU?

To ask if anyone has any experience with Alpha Thalassaemia trait?

16 replies

Vilanelle · 18/12/2019 17:00

My midwife has called to say it looks likely I have this trait, she was unable to answer any questions - stating that she is not a genetic expert but I will receive a letter tomorrow.

I am pregnant and these results have come from my ante natal bloods.

I am reading through Google but finding a lot of conflicting information. Should I be worried??

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Vilanelle · 18/12/2019 17:00

I didn't mean to enable the voting!

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p0rridge · 18/12/2019 17:18

Yes, I do - several family members are and I also had to be tested for it. You only really need to worry if your partner is also AT trait - and they'll find out by doing a blood test. If you both test as positive then they'll be able to advise further.

Sorry that this'll be adding extra stress to your pregnancy, but for now do try not to worry (I know it's hard) as if it's just you that's a carrier it shouldn't cause problems.

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VaguelySensible · 18/12/2019 17:28

I was tested for it in pregnacy no2, having had atypical anaemia problems in pregnancy no1. Dh was tested at the same time. His tests came back clear, but mine came back ambiguous - they could not rule it out. (This was 17y ago, so testing may be better now.) But they said that my results did not actually matter that much, as dh not being a carrier meant that our babies were safe. I OTOH would need iron supplements and a little extra monitoring in every pregnancy. And that was all. Pregnancies, labours and babies were all fine.

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ActualHornist · 18/12/2019 17:35

Yes I have the trait.

It will be fine so long as your partner doesn't also have it - thallasaemia is similar to sickle cell but for those of Mediterranean descent.

You will likely find that your blood count is naturally on the low side (if you've ever given blood they might have noted this). If you become anaemic during your pregnancy, there is no point taking iron tablets as your body cannot absorb iron from medications. Eat lots of meat and leafy vegetables. I took the tablets initially and had terrible diarrhoea.

But like pp say - it's not a problem so long as your partner is not also a carrier.

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VaguelySensible · 18/12/2019 17:58

there is no point taking iron tablets as your body cannot absorb iron from medications.

That's interesting, because the ferrous sulphate prescribed by the NHS did nothing for my anaemia. Whereas when I bought expensive chelated iron/bisglycinate I was able to absorb it and did not have any digestive problems.

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Vilanelle · 18/12/2019 18:27

I've been prescribed iron tablets...

Father of baby has had genetic screening which came back all clear. I used donor sperm for insemination through fertility clinic.

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YeOldeTrout · 18/12/2019 20:07

Is diarrhoea if you take iron supplements really a common feature for people with Thalassaemia?

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Troels · 18/12/2019 20:22

there is no point taking iron tablets as your body cannot absorb iron from medications.
My friend un the US has Thalassaemia, she said no suppliements, something to do with the iron causing mucle pain for her.
She get a blood transfusion every so often.
The Doctors thought I had it too, as iron suppliments mad no difference to my levels, turned out to be coeliacs and I just wasn't absorbing it.

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RoseWines · 19/12/2019 05:11

Is it tested as part of genetic screening for the father? I'd be suprised if it was.
Probably not possible to ask for a blood test from him?

What ethnicity is he, that'd give you a good statistical guess if he's got thalassemia trait as it most shows up in certain ethnicities.
Ie id guess the responses youve had no far, almost none are from fully white Caucasians.

OP I'd not worry tho, the trait is not anything major tbh

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PapayaCoconut · 19/12/2019 05:24

Ie id guess the responses youve had no far, almost none are from fully white Caucasians.

The only person I know who has this is Greek.

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TheHobbitMum · 19/12/2019 05:32

I have this OP, I also found out through antenatal bloods. As previously said your DP will be tested and it only really becomes an issue if he also has it.

I am white Caucasian Smile

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RoseWines · 19/12/2019 11:36

Greeks have alot of mixed ancestry.

@thehobbitmum that's pretty cool, if only because it's statistically rare for white Caucasians to have thalassemia traits

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ActualHornist · 19/12/2019 11:44

@VaguelySensible that’s interesting - I didn’t actually know there was anything else and my doctors were clueless and just kept prescribing the tablets.

@Troels sounds like she has thallasaemia rather than is a carrier? It can be really brutal.

@PapayaCoconut yep I am Greek (well, half!).

Google doc says alpha thallasaemia most often affects southeast Asian, Indian Chinese or Filipino descent. Beta thallasaemia Greek, Italian, Middle Eastern, Asian or African.

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DoesntLeftoverTurkeySoupDragOn · 19/12/2019 11:48

id guess the responses youve had no far, almost none are from fully white Caucasians.

I am. At least as far back as we know - I imagine very few people are fully white Caucasians if you take in their entire ancestral heritage!

My dad had this and, from blood tests I had once, I suspect that I might too although it wasn't said.

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zinrepus · 24/05/2020 18:13

Hiya. I know this thread is about six months old, but figured I'd check in. My doctor says I'm likely an alpha thalassemia carrier (not silent carrier, regular carrier). My results said there was no indication that they needed to check my husband. That seems counter to what everyone else experienced...

Also, for other carriers, were there any additional complications with birth or was it more or less a matter of keeping an eye on iron levels?

(to add to the fun, my parents got genetic testing done a few years back: no Mediterranean/Asian/African/Middle Eastern ancestry for us. Just another statistical anomaly)

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Skmk · 25/08/2020 08:26

I am currently so worried I am black caribbean and my husband black African as well and we've both been tested and told we've got a rare trait which no one can seem to tell us what it is ,they ruled out sickle cell or thalassemia then said it might be alpha thalassemia or delta chain variant whatever that means so hubby and i had to do a dna test through bloods to find out if baby is ok ,as we were told there waa a 1in 4 change they might be a carrier since we've both got the trait .really worried about my little nibbles

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