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MTHFR gene mutation

(30 Posts)
LunaB Thu 13-Jul-17 20:31:27

I've had a few miscarriages so went to see Dr Shahata at The Miscarriage Clinic who did a full blood panel and discovered (amongst other things) I have the MTHFR gene mutation, which means that I cannot absorb Folic Acid in its synthetic form (the form that's in all the preg vits etc.)...

To remedy this, Dr S prescribed an additional Folic Acid supplement of 5,000mg (in addition to the 400 in my Pregnacare vits) but I'm doubting this is the correct advice - as everything I've read states that it makes no difference how much Folic I pump into myself; my body and any future baby simply won't receive it.

SO, after all this reasesrch I've found that a bioavailable (pure) form of Folic Acid, called l-methlyfolate, could be the best solution as my body could absorb this form of the Folic.

Also, apparently this mutation also causes malabsorption of vitamin B12, so I found a different type of preg vits that in addition to containing the recommended 400mg of the l-methlyfolate version of the Folic Acid also contain a form of methyl-B12 which is supposed to help the body use l-methlyfolate...

Now obviously this issue isn't causing the miscarriages (it's something else), but the fact I can't absorb Folic Acid is worrying as it's so vital to conception and pregnancy.

Anybody else have any knowledge or advice on this issue!?

I'm confused and don't want to go against the doctor who's supposed to be helping me, but I just feel that I'm right!!


Moose23IsHungry Thu 13-Jul-17 23:34:53

Just typed a massive message and lost it.

MTHFR is not acknowledged in the U.K. But is in the US.

I have the same mutation (two copies). My b12, folate and thyroid were not bad but not perfect.

I'm now taking methylfolate (from amazon) 5MG. I threw out his folic acid.

I also take a b12 spray from holland and Barrett.

And baby aspirin daily. MTHFR is associated with miscarriage, blood clots and migraines so this helps to thin the blood. However please don't take this on my word. Do lots of research.

I just got a positive pregnancy test (not hoping for much at this stage due to past MC) so will test these things again shortly. I'll be interested to know if the supps have changed my levels.

There's MTHFR support groups on facebook but beware the anti vaxxers!!

LunaB Fri 14-Jul-17 21:04:26

Thanks for the response!! I can't believe there isn't clear advice on this!!

I will ditch the Folic and start a really nice bioavailable pregnancy multi vit instead. I already take aspirin, vit d and Omega which is good.

I guess the main questions I need to find a response to from somebody ASAP are:

(1) If I take the meth folate version then can I just take the 400mcg as a normal person, or do I still need a mega dose?

(2) How long do I take it for - for the pre conception and until 12 weeks of pregnancy like a regular person? Or throughout whole pregnancy?

The answers to these questions are so vital to the future wellbeing of my next pregnancy!! I will find the answers!!

confused stupid after all the miscarriages I've had I have to figure this out practically on my own!!

But anyway - CONGRATS to you! Wonderful news - and try to be excited! Best, best of luck grin

littlemimosa Fri 14-Jul-17 21:13:12

Hi Luna, I have no experience of MTHFR and can't answer your questions but i know that this website has loads of info about it.
It's a wellness blog written by an American women (who has 6 kids!) and has the mthfr mutation. One of her posts is called 'What is MTHFR and how does it affect health and fertility'.
Just go to the site and do a search on it. Loads comes up. Hope this helps and good luck.

LunaB Fri 14-Jul-17 21:33:44

Thank you littlemimosa! I've found her terrific blog and it's what got me really doubting what my consultant was telling me!

I have joined some Facebook groups just now so hopefully I can pose my 2 questions and see what everyone says!!


littlemimosa Fri 14-Jul-17 21:48:47

oh i'm really glad you already knew it.
And i hope you get your answers from people of the FB group.

as an aside, i take Wild Nutrition's 'food state' fertility pre natals and i just remembered it contains the form of folate you are talking about. sounds like you already have what you need but thought i'd mention.

good luck to you hun.

LunaB Sat 15-Jul-17 06:19:44

Thank you! I called my local maternity ward as well and they are having a midwife specialising in pre conception call me to discuss.

My 1st son was born with savage tongue tie which is linked to Folic Acid/folate deficiency as I didn't know then I wasn't getting any Folic during my pregnancy (scary!)...

I've been trying to conceive since December (kept losing them) and all this time I've been pumped full of synthetic Folic Acid with my standard preg vits and now this mega 5k dose and I've been feeling so ill all year... add that to the miscarriages and I'm so done with Folic Acid!!!

Good luck to all smile

Moose23IsHungry Sat 15-Jul-17 21:48:08

Luna, there's a few other things to watch out for - migraines and slightly higher risk of stroke especially if you go on the pill at anytime.

Which hospital are you using (if you don't mind)where they're actually taking notice of MTHFR?

I'll be taking 5MG of methylfolate for the whole pregnancy ..

harrietm87 Mon 17-Jul-17 14:50:51

Hi @LunaB . I'm interested in this as I'm heterozygous for theMTHFR mutation. Also seeing mr Shehata and he said it's unlikely to have been a factor in my mcs and I don't need any extra folic acid. I know I'm in a better position than if I was homozygous, but my understanding is that my ability to process folic acid is reduced so think I should try methyl folate too. Can I ask what supplements you're going to take?

Also if you haven't already do join the thread on ttc with immune issues on this board!

LunaB Tue 18-Jul-17 10:58:35

Hello! Thanks for getting in touch!! Dr S told me that he's not concerned and that some of the 5g Folic would get into my system.

This is 100% wrong and has really put me off him! I had a terrible reaction to the Folic 5g after just 4 days and I'm annoyed he put me through this.

I'm ignoring what he's said, and leaving him to pootle about with my NK Cells and leave the gene issues to an expert (who I'm yet to find!)

I thought I'd found the answer in these excellent US antenatals called Seeking Health Optimal Prenatal - they just arrived and I was ready to pop one when I saw this on the effing label (attached).

I've Googled it and apparently it's not as concerning as it sounds, but jeeeeez - there's no way I'm risking it!!

So I'm back to square one: alone, dealing with trying to get Folate into me in time to start trying again next month ffs!!!

I'm really annoyed and stressed

LunaB Tue 18-Jul-17 10:59:48

Moose, nobody is taking me seriously! Nobody has called me, GP is staring blankly... and this Dr S is prescribing me the very thing that's poisoning me!

Moose23IsHungry Tue 18-Jul-17 11:13:43

LunaB, I have found that it is not recognised in the U.K. At all. The Americans in the FB group "MTHFR and Pregnancy" are a bit mental (lots of anti vaxxers and they all ask stupid questions like "can I swim in a chlorinated pool"). However they all get prescribed blood thinner injections and baby aspirin - obviously here all I can do is take the baby aspirin.

And the methyl folate instead of the damaging folic acid!

As for NK cells- we stopped going to Dr S as we thought it more sensible to treat the hypothyroidism and folate issues before delving into that witchcraft. We may go back to him if the thyroid thing doesn't work out- but I don't know. It seems like a lot of money for a clinically unproven treatment. Obviously there is anecdotal evidence. But we aren't quite convinced yet.

harrietm87 Tue 18-Jul-17 11:17:51

Thanks luna and hi moose. I've also got hypothyroidism and high NK cells. Thyroid has been controlled since I was in my teens though so not sure it's relevant to my mcs (beyond being evidence that I have a predisposition to autoimmune issues). Just about to ovulate on my second steroid cycle so will keep you posted. Do join the other thread.

Will have a look for methyl folate supplements - let me know if you find good ones. Think there may be a pregnacare that includes it?

LunaB Tue 18-Jul-17 11:48:13

Hi ladies,

Yes I'm a member of that FB Group, they are v extreme!!!

Luckily the only 'issue' I appear to have is the NKs so going for it with Dr S...

But it's this stupid MTHFR thing that's got me stressing!!!

Just spoke to a pre conception consultant at Royal Surrey and he also said I should take the 5g Folic and that I should be absorbing it.... when I told him how sick I was in it he changed his mind and said I should have an RBC Folic Levels Test to actually definitively review my body's ability to absorb the Folic.

He said he's never heard of anyone being prescribed Folate!?

This seems wrong to me!! (Although blood test was good advice!)

LunaB Tue 18-Jul-17 11:51:01

Interestingly the Pregacare Max contains 200mcg of Folic and 200mcg of Folate.... hhhmmmm if that's not proof Folate is better I didn't know what is!

Why don't UK doctor's know about this!??

I had a lovely UK midwife private message me to say I shouldn't take Folic and get on Folate ASAP!

Snoopysimaginaryfriend Tue 18-Jul-17 12:34:45

Hi luna. I replied on your other thread as well.

Are what I used. Pricey but a trusted brand

Moose23IsHungry Tue 18-Jul-17 13:01:03 This is what I take

Moose23IsHungry Tue 18-Jul-17 19:42:51

@lunab and @ snoopysimaginaryfriend I just got my test results back after two months on vitamin b12 spray and the methylfolate tabs above.

Great news - b12 is now normal (was low and this is associated with MTHFR). And folate is at the upper end of normal.

LunaB Tue 18-Jul-17 20:03:15

Life savers girls ❤️ Both quite different doses tho (800mcg V 5,000mcg) - I'm confused about a dose for myself!? confused

Woohoo re results Mooseykins - great news!!!!

Can I ask you both, do you take these supplements in addition to regular prenatal vits (even tho they include Folic?)

Moose23IsHungry Tue 18-Jul-17 20:45:49

Honestly I'm not sure what an ideal dose is- I'm taking 5MG which is quite a lot but some people on that facebook group take less.

I don't take a standard prenatal due to the folic acid, but I am taking vit d, fish oil, selenium and baby aspirin (as well as thyroxine). Quite a lot of stuff and I'm not convinced the first three do anything, but they're regularly recommended and so I don't think they do any harm.

LunaB Tue 18-Jul-17 20:53:52

Interesting... I've asked the doc what dose he thinks I should go on... I might follow you with 5g...

Mv0707 Fri 03-Nov-17 10:30:16

Hi ladies,

I had 2 miscarriages earlier this year and I couldn't think of trying again without ruining some basics check. Last week, I got to know that I'm heterozygous for the MTHFR mutation as @harrietm87. My gynecologist told me that I should stop the folic acid and buy the methyl folate of 400 mcg. She also told me that I need to get further tests done to see if I need the aspirin or not. I'm really confused because there's so little information about this. We wanted to start trying this next cycle again but I think I'm now more confused than ever. Could you please share some advice? thanks!!

Lagare007 Sun 20-May-18 09:47:39

Hi ladies, a little late to the party, but I too have’s awful, but I’m relieved to finally understand why we are struggling to conceive.
We were tested by our ivf clinic Care and advised to take baby asprin and pregnicare maxx. After a few months we’ve decided to try ICSI again based on the positive stories we’ve heard about folate and blood thinners and we’re 6+5 waiting for our scan in 2 weeks
I’m now stressing because this all feels a little bit like deja vu, we had the same scan in feb 2017 and sadly had no fetal pole, granted this was before I was diagnosed with MTHFR, but I can help worry that this scan will show the same sad result.
I’m taking a daily dose of Inhixa blood thinning injections, the usual progesterone and the Pmaxx so fingers crossed, but this wait isn’t fun....I just want it to be a happy experience, we’ve waited for so long.

Does anyone have any tips on how to be more positive during the wait?

Hope you’re all ok btw!!!

moose23ishungry Sun 20-May-18 21:59:45

Hi Lagare,

All I can say is to keep busy. Do as much as you can to fill your spare time.

I was lucky and had my first successful pregnancy and now have a 7 week old boy. My problem turned out to be thyroid related. I hope that your issues are solved too. Baby making is so stressful.

moose23ishungry Sun 20-May-18 22:02:10

Also I did take the 5mg folate throughout the pregnancy. Not sure how much it contributed to the baby's survival but it didn't do any harm!

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