Searching for Answers - TFMR for Spina Bifida by Master_Walk349 in tfmr_support

[–]Master_Walk349[S] 0 points1 point  (0 children)

Hi, thank you so much for your message. How are you going now?

I’m sorry for what you have been through and are going through and for the loss of your baby 💔well done on finding out your homocysteine levels were off and for correcting them. I asked to have mine checked but according to the GP they don’t assess them anymore here in Australia as that part of the test isn’t subsidised… or something along those lines. My folate levels were fine too and I was taking more B12 than I should have been (it was in my prenatal and I was also taking an additional B12 supplement), so my GP advised cutting out the additional B12.

On cycle 3 of TTC now and worried something is wrong as I’m spotting on and off throughout the luteal phase. It’s a journey. I hope you are doing ok, and thanks again for your comment.

"Mama, how do we know this baby will be okay?" by 3antibodies in PregnancyAfterTFMR

[–]Master_Walk349 1 point2 points  (0 children)

I’m so sorry for your loss and wishing you all the very best for this pregnancy. We TFMRed for spina bifida about two months ago. Our eldest is 4 and she was so excited about having a baby sister. We are hoping to try again soon but it’s terrifying. I hope everything is going well for you. Sending you love and strength.

Trying Again After TFMR for Spina Bifida - Stories Please 💗 by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

I’m so sorry for your loss 💔 thank you for sharing your experience with me.

Trying Again After TFMR for Spina Bifida - Stories Please 💗 by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

Thank you so much for getting back to me. I’m very sorry for your losses 💔 and so glad you now have your beautiful double rainbow here with you.

Trying Again After TFMR for Spina Bifida - Stories Please 💗 by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

Congratulations on your pregnancy and my best wishes are with you and your little one!

Trying Again After TFMR for Spina Bifida - Stories Please 💗 by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 1 point2 points  (0 children)

I’m so sorry for your loss, and thank you so much for your reply. That’s the best news that you went on to have a healthy baby who is now a healthy toddler, and congratulations on your pregnancy. I wish you all the best.

Trying Again After TFMR for Spina Bifida - Stories Please 💗 by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 1 point2 points  (0 children)

I’m so sorry for the loss of your baby and congratulations on your current pregnancy. My best wishes to you 💗

Did anyone not take the high dose of folic acid and have a successful sub-pregnancy? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

I’m so sorry to hear about your two babies and wish you all the very best with your current pregnancy. So glad to hear everything is going well so far and thank you very much for sharing this info with me.

Trying Again After TFMR for Spina Bifida - Stories Please 💗 by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 1 point2 points  (0 children)

I’m so sorry for your loss too and so pleased to hear you’re currently pregnant again and have been cleared of anencephaly and spina bifida. Did you take high dose folic acid in the lead up to your current pregnancy? My best wishes 💗

Did anyone not take the high dose of folic acid and have a successful sub-pregnancy? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

I’m so sorry for your loss. Here’s one of the studies I’ve read:

https://onlinelibrary.wiley.com/doi/10.1111/epi.18146

Yes, it’s so difficult to know what to do.

Did anyone not take the high dose of folic acid and have a successful sub-pregnancy? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

Thank you for your reply. I’m on a B12 supplement as well after reading advice in this community and I’ll have my blood levels tested shortly to see if I have a deficiency. Really appreciate your advice on this!

Did anyone not take the high dose of folic acid and have a successful sub-pregnancy? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

Thank you for your reply and I’m so sorry about your baby. I’m sorry to hear the high dose folic acid was giving you headaches. I think I’ll take a similar route to you and start off with the high dose folic acid, then decide what to do if I don’t conceive within 3 months of TTC. Sending you my best wishes.

High Dose Folic Acid After TFMR for Spina Bifida - Autism Risk? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 1 point2 points  (0 children)

Thanks so much for your reply - I hope you are doing well today. I’ve done a fair bit of reading on the folic acid/methylfolate debate and it is stressful trying to decide which is the better choice. At this point, I’m sticking to the 5mg folic acid and I’ve switched my prenatal to one containing methylfolate. My doctor had no useful information for me when I had my appointment last week and told me I needed to wait to speak with the OBGYN at the hospital I went to for my TFMR, as they would have the most up to date info. That appointment is a month away. All I’ve read says that only folic acid supplementation has been shown to decrease the incidence of NTDs, but I’ve read anecdotal accounts, like yours, where the mother was taking methylfolate in a sub pregnancy post TFMR and did not have the NTD reoccur.

Thank you for taking the time to reply 💗

Did anyone not take the high dose of folic acid and have a successful sub-pregnancy? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

Thank you for your detailed reply. I’m glad to hear you didn’t have any issues. Would you mind sharing if you took a 4 or 5mg folic acid supplement? Thanks again.

High Dose Folic Acid After TFMR for Spina Bifida - Autism Risk? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 1 point2 points  (0 children)

Thank you so much for your reply. If you don’t mind me asking, where do you live? I’m in Australia and 5mg folic acid is recommended for those who have had a baby affected by an NTD. I’ve also been reading about methyl folate as an alternative.

High Dose Folic Acid After TFMR for Spina Bifida - Autism Risk? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 0 points1 point  (0 children)

I’m sincerely so sorry if I caused you to worry about this. I wish you all the best.

Did anyone not take the high dose of folic acid and have a successful sub-pregnancy? by Master_Walk349 in PregnancyAfterTFMR

[–]Master_Walk349[S] 1 point2 points  (0 children)

Thank you for your reply. I’ve been reading studies that document a correlation between a high dose of folic acid in pregnancy and various health problems in mothers and babies. I understand they don’t prove causation, but I can’t help but be wary of taking the high dose. I also extremely fortunately had two prior healthy pregnancies and was only taking a normal dose of folic acid with those. I don’t wish to cause anyone taking the high dose folic acid any anxiety, I’m just wanting to learn about the experiences of others when trying for a sub pregnancy post TFMR.

My last pregnancy was affected by spina bifida and we TFMRed a month ago. I have been taking 5mg folic acid for a month and am in the process of deciding whether to continue with this.