Trying to conceive...Thal Minor and E trait carrier

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Trying to conceive...Thal Minor and E trait carrier
« on: June 02, 2016, 10:35:29 PM »
Hi I was wondering if anyone has experience with IVF and PGD??

I was recently diagnosed with Beta Thalassemia Minor and my husband has E trait Thalassemia.
I am being referred to see a genetic counsellor, but i was wondering if anyone has any advice as to what they chose to do?  My doctors ( OBGYN and family doctor) seem to think it is no big deal and that IVF with PGD is not needed. But upon my research online, a Beta Thal minor & a E trait carrier have a 25 percent chance of having a baby that is E trait/B THAl which is equivalent to someone that would have Thal Major???

I have already suffered 2 miscarriages, which im wondering if it was due to the Thalassemia??

Any advice would be appreciated :)


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Offline sofear

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Re: Trying to conceive...Thal Minor and E trait carrier
« Reply #1 on: June 03, 2016, 10:37:51 PM »
If there is a chance that your child could have Thalassemia – Major or even Minor – IVF and PGD are very much needed. Why should you risk to let your child suffer from any type of Thalassemia? I think your doctors are acting very irresponsibly!  ???

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Offline Lokkhi maa

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Re: Trying to conceive...Thal Minor and E trait carrier
« Reply #2 on: June 04, 2016, 05:15:17 AM »
Hello mrsck143,

When I was 7 months pregnant and my HB drops below 7 then my doctor adviced for electrophoresis and found Thai minor.After the report I have taken total 4/5 transfusions.Now I am normal,no problem,no transfusion.After my babies birth my husband curiously done his electrophoresis and found E trait.But we have no idea about Thai minor and E trait.After we know that there is 25% chance of my babies as a thalassemia major,minor or intermedia.

For that we urgently contact with doctor and according to his advice we done my babies  electrophoresis also when she was 4 months old.Unfortunately the report shown her HB was 7.2 and E Beta Thalassemia.For that time still she taking transfusion every month.Last week she have taken her 20th transfusions......
Lokkhi Maa

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Offline Andy Battaglia

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Re: Trying to conceive...Thal Minor and E trait carrier
« Reply #3 on: June 04, 2016, 04:13:16 PM »
I have had hundreds of reports of miscarriages in thal minors, many with multiple miscarriages. Yes, there is a connection. Taking high dose of L-methylfolate and taking natural vitamin E during the pregnancy can help you avoid miscarriage.

As far as taking chances, have you had a DNA test to determine which beta mutation you have? That is where you should start. Beta+ is not as risky when combined with HbE. Beta zero and HbE combined is quite risky.
Andy

All we are saying is give thals a chance.

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Offline Lokkhi maa

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Re: Trying to conceive...Thal Minor and E trait carrier
« Reply #4 on: June 05, 2016, 02:48:21 AM »

Hello Andy,

I don't know that I have Beta+ or Beta zero.But as my baby E beta thalassemia and need transfusion is that prove I have Beta zero?
Lokkhi Maa

Re: Trying to conceive...Thal Minor and E trait carrier
« Reply #5 on: June 06, 2016, 05:30:52 PM »
I have had hundreds of reports of miscarriages in thal minors, many with multiple miscarriages. Yes, there is a connection. Taking high dose of L-methylfolate and taking natural vitamin E during the pregnancy can help you avoid miscarriage.

As far as taking chances, have you had a DNA test to determine which beta mutation you have? That is where you should start. Beta+ is not as risky when combined with HbE. Beta zero and HbE combined is quite risky.

Hey Andy,

What dosage  do you reccomend for L-methylfolate  and Vitamin e?
Im in the process of seeing a genetic counsellor, have not received a phone call yet for an appointment but have been referred. Me and my husband are leaning towards IVF with PGD just because I dont know if I would want to take the risk with having a child with Intermedia or Major. My husbands sister suffers from Intermedia and it heart breaking watching her try to maintain her health.

Thank You!!! :)

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Offline sofear

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Re: Trying to conceive...Thal Minor and E trait carrier
« Reply #6 on: June 06, 2016, 06:58:01 PM »
As a Minor, I'd say try to avoid any type of Thalassemia. Why even risk it if there is a safe way to avoid it?  :(

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Offline Andy Battaglia

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Re: Trying to conceive...Thal Minor and E trait carrier
« Reply #7 on: June 07, 2016, 11:53:56 PM »
mrsck143,

$00 IU natural vitamin E daily and 2-5 mg L-methylfo0late daily. both when trying to become pregnant and when pregnant.

PGD and IVF require patience. You can completely eliminate any possibility of a thal carrier with PGD. It often takes more than one attempt, so the couple needs to prepare emotionally and financially. It is the only safe method of assuring a thal free child. Before doing that, I would recommend a DNA analysis to see what your beta thal mutation is. This information could impact any decision.
Andy

All we are saying is give thals a chance.

 

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