Low Folic Acid and Gilbert's Syndrome

[KiriBloomfield]

Hi Everyone,

Lovely to meet you all, I am new to this forum and plan to start trying to conceive the beginning of next year (fingers crossed!)

I am a little nervous, as I had an unplanned pregnancy a couple of years ago, and unfortunately miscarried. After miscarrying, I was diagnosed with Gilbert's Syndrome and was also put on prescription Folic Acid as my levels were incredibly low (even with a diet rich in it and supplements). My levels are now normal and I no longer require the prescription Folic Acid. I really do not know if the miscarriage is linked to the low Folic Acid, but with it being so vital during early pregnancy I cannot help but wonder.

If anyone had had a similar experience/has Gilbert's/has low folic acid and could give me some advice, that would be fantastic. It's a real struggle to get in with my doctor, and with the surgery being so busy I do not want to waste their time asking them whether I should be on prescription Folic Acid while trying to conceive/during early pregnancy to receive a quick answer.

Thank you in advance!

 

[candymycandy]

Hi Kiri and welcome! Sorry I have no experience of this but didn't want to read and run.

I don't think you'd be wasting the GPs time by asking this question though - do they offer telephone appts? I would at least be taking the normal dose of FA as I'm sure you are already, if you don't have any of the 5mg one. All the best x

 

[KiriBloomfield]

Thank you, and no problem! It is a real struggle to find any details on Gilbert's let alone Gilbert's and pregnancy!!

Yes I do take the normal dose, and thank you for the advise on still going to see a doctor to query this, and good idea re. telephone appointments, I'll check this out

Gilbert's is pretty much brushed under the carpet of any doctor I speak to (it's a benign condition according to them, yet we have symptoms and they diagnose it.. baffles me!) x

 

[Sunflower1]

I also don't think you are wasting your GP's time! Folic acid is important to prevent birth defects ...ensuring you have a healthy pregnancy and baby is in no way wasting anyone's time! I agree this could be dealt with by telephone appointment. You need 3 months worth of folic acid before TTC as I understand it - because you have to build it up beforehand. Also a decent GP would probably want to do a blood test and monitor your levels to make sure it's safe for you to get pregnant.

 

[candymycandy]

Yep - what sunflower says. Guessing most GPs don't understand it or perhaps haven't even heard of it so don't let them fob you off and press for extra monitoring/consultant referral once you do get pregnant. Good luck!

 

[rainbow.23]

I would 100% take folic acid now and all through your pregnancy, build up your stores and keep them up once your little bean starts stealing it all from you!

 

[Sunflower1]

I would 100% take folic acid now and all through your pregnancy, build up your stores and keep them up once your little bean starts stealing it all from you!

Yeah, I agree. I take 400mg, but if yours is naturally low the GP might recommend a higher amount. 400mg should be safe as it's the RDA, but only a GP can monitor and manage this properly knowing what your levels are.

 

[KiriBloomfield]

Thank you for all your advice I enquired about a telephone appointment with the Dr, but had a particularly moody receptionist, who just kept saying he was too busy! However, I pushed and have managed to get an appointment for tomorrow, so fingers crossed some answers.

I started taking 400mg a couple of weeks back, and did so during my lest pregnancy but after the MC it showed seriously low FA levels, so just airing on the side of caution that it doesn't happen again. The last time I was on prescription FC my doctor stated that you cannot store it, you can restore your levels to maintain, but it's the reason we have to supplement, because it cannot be stored within the body.

 

[Sunflower1]

Thank you for all your advice I enquired about a telephone appointment with the Dr, but had a particularly moody receptionist, who just kept saying he was too busy! However, I pushed and have managed to get an appointment for tomorrow, so fingers crossed some answers.

I started taking 400mg a couple of weeks back, and did so during my lest pregnancy but after the MC it showed seriously low FA levels, so just airing on the side of caution that it doesn't happen again. The last time I was on prescription FC my doctor stated that you cannot store it, you can restore your levels to maintain, but it's the reason we have to supplement, because it cannot be stored within the body.

So glad you got an appointment! Receptionists in doctors can be horrid...like it's their job to put you off! Hope it goes well.

 

[JemRose]

I'm a GP's secretary, don't diss us too much
Let me know what they say!! My GP wasn't much help at all when I have just been told I have low Folic Acid. Just told me to eat leafy greens, which I do anyway. I'm taking Pregnacare Conception Vitamins which have Folic Acid 400mg in, but wonder if I should be taking more as naturally low Folic Acid.

 

[KiriBloomfield]

I'm a GP's secretary, don't diss us too much
Let me know what they say!! My GP wasn't much help at all when I have just been told I have low Folic Acid. Just told me to eat leafy greens, which I do anyway. I'm taking Pregnacare Conception Vitamins which have Folic Acid 400mg in, but wonder if I should be taking more as naturally low Folic Acid.

Hi JemRose,

Wen't to see my GP yesterday, all positive! I was quite surprised.

I had to change surgeries when I moved, so i'm new to the practice, my previous GP was very 'What to do you think you need? I don't think you need that, i'll sort you out this instead' and didn't really listen to what you had to say.

This GP sat and listened while I rambled on about what concerned me, what I felt I needed and whether he agreed or if could be sorted by standard supplements and diet. After this discussion, he concluded that it would beneficial, due to having such low FC after my MC, to have prescription FC. He is unsure whether the two coincide (low FC and MC), but didn't want to run the risk of while being pregnant, the baby zapping my FC and being in the same situation as before.

However, he did say the low FC was no link to Gilbert's, but I knew that comment was coming. Very few doctors acknowledge GS as a constant thing, and I believe low FC and GS are linked somehow.

He didn't do a blood test, as one I had last year came back fine, so he had no doubts that my levels are quite stable currently, so advised me to supplement the 400mg until I conceive, and then swap to the prescription FC for 12 weeks. I will then have a blood test to determine my levels and see if I need to continue with it or not.

I hope this helps! I think it's worth pushing if you have low FC and just making sure.

Hopefully your GP will be as understanding as mine, let me know how you get on!

 

[JemRose]

Thanks Kiri, I actually need to change GPs as just moved to a different town, so maybe I'll be in luck and this one will listen and give good advice!! Glad things are getting sorted for you
Fingers crossed a BFP will come your way with a sticky bean this time xx