Folate deficiency (3rd time): Evening everyone I... - Thyroid UK

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Folate deficiency (3rd time)

Shazy-B profile image
15 Replies

Evening everyone I’m just wondering if anyone has any advice/experience with folate deficiency please? This is the third time my folate has dropped <2 I’m on my 2nd month (of 4 month prescription) of Folic Acid (5mg daily) but to be honest I still feel quite poorly, dizzy/off balance, extremely tired and forgetful, anxious and just generally fed up.

I’ve spoke to my GP to see if we can get to the bottom of why it keeps dropping, the only thing he suggested was to monitor me more closely instead of waiting for me to feel ill before testing again. Oh and he did a blood test for coeliac which came back “normal” I did mention about the MTHFR gene mutation but he didn’t seem to have a clue what I was talking about!

My last TSH was 0.45, B12 “normal”

I want to swap from Folic Acid to methyl folate but I’m just not sure what amount I should take? Any suggestions welcome 🤗

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Shazy-B profile image
Shazy-B
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SlowDragon profile image
SlowDragonAdministrator

Once you finish your folic acid prescription you could try taking a daily vitamin B complex

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

“B12 normal”

You obviously need the actual results and ranges for B12

Also vitamin D, ferritin,

TSH, Ft4 and Ft3

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Shazy-B profile image
Shazy-B in reply to SlowDragon

Thank you 😊

greygoose profile image
greygoose

It's really not a good idea to take just one of the B vits, because they all work together. So, I would suggest you get a B comples with methylfolate - usually 400 mcg - and methylcobalamin (B12) rather than cyanocobalamin. Thorne Basic B is a good one. :)

Shazy-B profile image
Shazy-B in reply to greygoose

Thank you ☺️

greygoose profile image
greygoose in reply to Shazy-B

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Can test for MTHFR here

Or upload existing Ancestry or 23andme data for analysis

mthfr-genetics.co.uk

Mlinde profile image
Mlinde

Hi Shazy-B, yes I take folate but NOT folic acid, it's the wrong kind. As to how often? Every third day for me, as I'm a bit low. I also take B-12, once a week (Methylcobalalamin) but plenty of (organic) broccoli and/or bok choi, and Kale. Better to source from actual food! Last time I had it measured, my GP said I was too high but in Japan for example, they want to see levels 3 times the UK measure! Go figure.

limonene7 profile image
limonene7

Hi, my own folate had been very low in range until i took supplements to increase it. I personally doubled up the dose for a few weeks which finally gave me a good reading and then went back to one a day. I also only use methyl folate and methyl B12 and as part of a B complex tablet as all the B's work together. I tested my blood every 6-8 weeks. I take these which do say they can be taken twice daily but personally I wouldn't take two a day without keeping a regular eye on blood readings... smile.amazon.co.uk/Optimum-...

Shazy-B profile image
Shazy-B in reply to limonene7

Thank you ☺️ I would be reluctant to double my dose of folic acid to 10mg as I’m sure it’s the 5mg that are making me feel so unwell. I have ordered Jarrow 400 methyl folate and think I will try these for a few weeks to see how I get on. When you say you tested your bloods every 6-8 weeks was this via your GP or private testing and if so who did you use please?

limonene7 profile image
limonene7 in reply to Shazy-B

Hi, yes I get bloods tested privately and I use Medichecks 'advanced thyroid test'. They sometimes have discounts on or I think you can get a 10% discount code through one of the pages on the ThyroidUK website. I order the test kit and at the same time, I opt to have my bloods drawn via my nearest phlebotomist. Theres an option to choose where to go for the blood draw on Medichecks order page. I don’t opt for the fingerprick test as Medichecks warn that folate testing sometimes fails on the fingerprick test version so I always opt for venous blood draw. I think 5mg of folic acid sounds like an extremely high dose but I’ve only ever used methylfolate and a standard dose per tablet seems to be 400mcg of methylfolate. Do you plan to take a multi B complex only I believe it would generally be recommended on here to do so as the B vitamin group all work together? The multi B complex I take contains 400mcg of methylfolate per tablet. I only ever take the methyl version. If a B complex tablet contains the ‘folic acid’ form, I don’t take them. Having said that, if you choose to take a multi B along with your Jarrow 400 methyl folate, you will also be having the folate in the multi B tablet as well which may be too much.🙂

CoeliacMum1 profile image
CoeliacMum1

HiI have had a dip in folate in 2020, and my story is my GP firstly wanted to know that I was eating plenty of Folate rich foods and not cooking it to death, easily done.

Then checked my alcohol levels, as alcohol depletes folate.

I don’t usually go over the units but drink most weekends.

I had to have a FIT sample to make sure all was well elsewhere (not sure if this is because I’m coeliac)

This is first time in 9yrs of being diagnosed with folate deficiency, I have had many problems initially when diagnosed with Iron, Ferritin and B12 & vitamin D but are mostly resolved.

I had dietitian appointment and like you both my GP & dietitian knew zilch about methylation as I already have Pernicious Anemia, I have B12 injections every 3months I thought most likely cause.

I took the 4 months folic acid and to be fair I have maintained my levels I have increased folate in my diet.

I did look at methyl folate and nutritionists often prefer this, although I couldn’t see any basic information on this to dose, like you mentioned.

I’m sure methyl folate would be a better choice if you do have methylation problems.

The only information I could find for possible caution was that methyl folate hadn’t been tested in pregnancy as far as I could see (please do correct me if this isn’t the case)

So a reason possibly why in some cases NHS don’t advise it.

You can go on British Dietetic Association and download relevant information on B9 Folate.

Maybe chat to Nutritionist usually they as the GPs should investigate why the problem, rather than just repeatedly supplement.

Sorry that’s probably not much help and repeating what you already know.

Hope you get this resolved soon.

Shazy-B profile image
Shazy-B in reply to CoeliacMum1

Thank you ☺️

humanbean profile image
humanbean

I have repeated low levels of folate.

1) I don't drink alcohol at all, so that is irrelevant to my own low levels.

2) If someone takes folic acid it has to be converted within the body to methylfolate. This is described in this link :

takecareof.com/articles/ben...

but many people can't do that conversion well. The result of this is that people will end up with lots of unmetabolised folic acid in the blood, making their folate levels look much better than they are. In patients with very poor conversion they could end up in a folate-deficient state while also having very good results in folate testing.

3) Methylfolate can be bought online in supplement sites in doses of 200mcg, 400mcg, 800mcg, 1000mcg and 5000mcg per pill. Personally, I take 1000mcg four days a week, and this keeps my levels somewhere fairly sensible for me, but it does fluctuate a lot. Finding the right dose for you can require a lot of trial and error.

4) I also take a B Complex every day. I'm currently taking Thorne Research Basic B Complex which contains biotin. It is essential to stop taking any supplement containing biotin a week before any form of testing.

Shazy-B profile image
Shazy-B in reply to humanbean

Thank you ☺️ I am tea total also so that can’t be causing the issue. I do often wonder if it has anything to do with have my gall bladder removed several years ago 🤔 however my GP denies this could be the cause

humanbean profile image
humanbean in reply to Shazy-B

I can't comment on a possible gallbladder connection. It is something I've never studied.

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