Why do my Folate levels keep dropping ? - Thyroid UK

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Why do my Folate levels keep dropping ?

Joesmum profile image
13 Replies

I have Hashimoto’s and central hypothyroidism. I do battle to keep my Vit D, Iron, B12 and Folate high in range. But the one I found most difficult is the Folate.

I take 400 ug Folic Acid daily along with 1000 ug B12 but if I forget or miss one week, the levels plummet again and I’m plagued with symptoms ; burning mouth and tongue, two painful toes which ache and burn, nausea, headache, dizziness, weepy…

Any thoughts as to why I’m not holding onto it ?

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Joesmum profile image
Joesmum
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13 Replies
humanbean profile image
humanbean

I wouldn't take folic acid if I were you. I treat my folate with methylfolate.

Reasons for avoiding folic acid ...

drfuhrman.com/blog/16/why-y...

web.archive.org/web/2024022...

methyl-life.com/pages/methy...

I have found that my folate levels drop easily and I have to take a maintenance dose. I try to keep my level at around 20 micrograms/L because as you say, the upper limit of the range for folate often isn't given.

Joesmum profile image
Joesmum in reply tohumanbean

Good call. Thank you.

SlowDragon profile image
SlowDragonAdministrator

Many, many members need to take daily vitamin B complex continuously to maintain optimal B vitamins

What are your most recent B12 and folate results

If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Low folate

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

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

Difference between folate and folic acid

healthline.com/nutrition/fo...

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

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Joesmum profile image
Joesmum in reply toSlowDragon

Out of curiosity. What do you think about B 50 supplements?

About a year ago, I took them once for a week and after a few days I started to feel really well but a few days later I became very anxious which was unpleasant and so stopped them. I’d read about the, online of course and feel for the ‘more must mean better’ scenario.

SlowDragon profile image
SlowDragonAdministrator in reply toJoesmum

I haven’t tried them…..they seemed too high a dose

I take one Igennus B complex per day 5 days a week and a separate methyl folate 2 days a week

SlowDragon profile image
SlowDragonAdministrator

From your previous post

My meds in total are 125 mcg T4 and 20 mcgs T3

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

What are your most recent TSH, Ft4 and Ft3 after testing like this

Have you tested vitamin D yet

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Joesmum profile image
Joesmum in reply toSlowDragon

My recent bloods are a little complicated.

I had an estrogen implant fitted recently which has raised my estrogen levels considerably but in doing so has blocked my T4 and T3 so I’m in the process of having to raise those as directed by Endo. I’m currently adding in an extra 25 mcgs of T4 to retest in November.

TSH 0.02 ( 0.27-4.2 )

FT4 14.3 ( 10.8 - 25.5 )

FT3 4.3 ( 3.1 - 6.8 )

I felt well when my FT4 was upper third and FT3 was just over range. At the moment with my current low levels I feel very shaky and nauseas. Just generally blah with a persistant sore tingling tongue which is infuriating.

TiggerMe profile image
TiggerMeAmbassador in reply toJoesmum

Sore tongue ties in with low folate

SteveT3 profile image
SteveT3

I second @humanbean. Try methyl folate instead, or folinic acid. Personally though I found b vitamins give me brain spark feeling like someone keeps revving my brain. It's weird. I got similar thing with supplementing methyl folate, turmeric, copper, b6 as p5p. Only thing that helped me was taurine. Taurine seems to mitigate and balance me out. I think it works by aiding detoxification, reducing homocysteine, taking the burden off folate to recycle it.

For folate and iron I find if I eat liver every week my energy is better and don't getup at night to pee as often. My bladder seems less acidic.

Supplements don't always work as effectively as food. That being said for nerve tingling check your b6, b2 and b1. B1 benfothiamine in high doses has been a benefit for support for people with nerve tingling, along with carnitine as part of a protocol taking DCA (since DCA can cause nerve tingling). Something to look into anyway

Joesmum profile image
Joesmum in reply toSteveT3

That’s really interesting. I shall look into all this.

Fizzyinch profile image
Fizzyinch

folic acid is synthetic and your body needs to convert it to folate. As others have said try the bioavailable form methylfate.

CoeliacMum1 profile image
CoeliacMum1

MTHFR gene could be a reason amongst many why folate is low… I was referred to dietitian by GP as I struggled with low folate and still do it’s a common thing with people with digestive conditions eg coeliac disease and crohns etc and other genetic predispositions and lack of folate in diet…Which is why methyl folate is better to take as body absorbs this easier … my dietitian couldn’t advise at the time on this , she has to give out folic acid as most of the NHS do.

Alcohol depletes the folate as well as over cooking so things to consider, I periodically have chicken liver pate to replenish but eat diet rich in folate anyway … also if over 50 read information in link, before supplementing so you have all information beforehand.

bda.uk.com/resource/folic-a...

This is likely what you will get given from a GP or dietitian via NHS.

Brigland27 profile image
Brigland27

I get this too & personally I eat a good healthy diet I believe our stomach acid is weak so I use supplement sprays as much as possible

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