Low folate: Hi I hope everyone is well, it’s been... - Thyroid UK

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Low folate

Shazy-B profile image
21 Replies

Hi I hope everyone is well, it’s been a while since I’ve been on.

I’m just wondering if anyone knows what the correlation between being Hypothyroid and recurring low folate is please?

For 3 consecutive years my folate has become deficient. It started in October 2019 it dropped to <2 . I was put on folic acid for 4 months, it came up and then within 6-9 months it dropped again.

I had it tested in September 2022 after finishing another 4 months of 5mg of folic acid it was 15.9 and then again in December as I felt symptomatic … it is now 6. My GP said I shouldn’t feel symptomatic as it’s “normal” my response was “ well I can feel it and know when it’s dropping hence why I asked for it to be tested again and I can guarantee in another 3 months it will have dropped to <2 again!”

So anyway to cut a long story short he wants to get to the bottom of why it keeps dropping, but if it’s just part and parcel of being Hypo then I’m not sure he will find a cause? Although I’m curious as to why it has only happened recently given I’ve been Hypo for 20 years?

FYI my B12 is always within “normal” range.

My last TSH was 0.25 (September 2022) 100mcg Levothyroxine (always Accord/Actavis brand)

Thanks for any comments, suggestions or recommendations 😊

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21 Replies
SlowDragon profile image
SlowDragonAdministrator

Just testing TSH is completely inadequate

You need TSH, Ft4 and Ft3 tested

Many, many patients on levothyroxine need to supplement daily vitamin B complex continuously to maintain optimal folate and B12

When were vitamin D, ferritin and B12 last tested

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) all four vitamins need to always be at OPTIMAL levels

Vitamin D at least over 80nmol and between 100-125nmol may be better

Serum B12 at least over 500

Active B12 at least over 70

Folate and ferritin at least half way through range

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo of your weight per day

SlowDragon profile image
SlowDragonAdministrator

Post four months ago

Serum Vitamin B12 357 ng/L (197.00-771.00ng/L)

Serum Folate 15.7 ug/L (3.90-26.80ug/L)

NHS only tests and treats vitamin deficiencies

These are too low…..but not deficient

So down to you to self supplement

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins)

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

or

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

Vitamin B complex

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 

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 recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20 

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

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...

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

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

in reply to SlowDragon

Thank you, SlowDragon, for all the tips and references. 👍

I'm not being treated for thyroid issues but have kidney disease and long term iron/ferritin/Vit D/B12 deficiencies, a couple of abnormal liver readings and borderline HbA1C results over the last year, and worsening fatigue in recent times.

I was taking Vit B1 with, instead of, after food, and recently, I also had a blood test for B12 and Active B12 (amongst others) not knowing to stop the B1 for a week before testing. Will know better next time!

Am saving your info for reference: they make more sense than different lab references and a dr who says, "everything is fine".

SlowDragon profile image
SlowDragonAdministrator in reply to

@Wunderkid

Do you know being hypothyroid is a CAUSE of poor kidney function

ncbi.nlm.nih.gov/pmc/articl...

The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons. 

Hypothyroidism results in a reversible elevation in serum creatinine due to the reduction in GFR as well as possible myopathy and rhabdomyolysis. There is a reduction in serum cystatin C levels in hypothyroidism due to reduced production, consequent to reduced cellular metabolism.[30] Both these changes are reversible with treatment of hypothyroidism.

If you have low vitamin D, folate, B12 , iron and ferritin and high HBA1C…..these are all typical symptoms of being hypothyroid

ALWAYS test thyroid levels early morning around 9am latest

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate 

come back with new post once you get FULL thyroid and vitamin testing

in reply to SlowDragon

Thank you, SlowDragon

Will need some time to digest all the info you've posted!

SlowDragon profile image
SlowDragonAdministrator in reply to

You might find this post interesting

healthunlocked.com/thyroidu...

Especially the reply by DelicateInput

in reply to SlowDragon

Hi SlowDragon.

Agree with you re thyroid/ckd link.

Also suspect liver link too as mine has risen inexplicably.

I realise my readings and health effects are relatively minor to a lot of people.

But my life, such as it is, has been in decline for over 12 months now and is still deteriorating. Other than leaving home two or three times a week then being totally wiped out for a day or so afterwards, I'm spending most of my time lying down between doing essential-only jobs around home. Need a couple of days to recuperate after going out, rarely get to the pool (used to swim 5km a time), don't go out at night at all, have withdrawn socially...cancelled last year's holiday (the previous year June 2021 I drove 1000s kms, camped, climbed the largest monocline in the world amongst other things -and now realise I've been in decline since returning Aug 2021), unable to go anywhere or plan anything for fun now except how to get through each day and deal with the fatigue and weakness and mental decline.

You did say to only get back after obtaining the relevant tests, and I have my next dr's appt in March. If I can't get him to do the tests you suggested, I then will go the private route -taking even longer.

In the meantime, found some results:

TSH:

01/12/22 2.17 mU/L (0.4-4.0)

29/01/20 2.98 mU/L (0.4-4.0) Free T4 11 pmol/L (9-19)

07/03/14 3.27 (0.5-5.5) Free T3 3.6 (3.1-6.0)

HbA1C:

28/08/22 HbA1C (NGSP) 5.3 % (<6.5)

HbA1c (IFCC) 34 mmol/mol (<48)

Vitamin D: Have been supplementing a few years with 1000IU daily

23/08/22 87 nmol/L (50-150)

11/05/22 85 nmol/L (50-150)

29/01/20 60 nmol/L (50-150)

15/05/19 57 nmol/L (50-150)

08/12/16 64 nmol/L (50-150)

07/03/14 68 nmol/L (50-150)

Ferritin:

23/08/22 258 ug/L (30-500) -after iron supplementation since 2000

14/2/2000 5 ug/L (10-200).

Iron:

23/08/22 7 umol/L (5-30) -after reducing red meat consumption

11/05/22 16 umol/L (5-30)

21/10/21 20 umol/L (5-30)

16/06/21 15 umol/L (5-30¬)

29/01/20 11 umol/L (5-30)

15/05/19 15 (11-27)

10/09/14 16 (11-27)

07/03/13 12 (11-27)

Haemoglobin:

23/08/22 141 g/L (115-165) -after iron supplementation since 2000

14.2.2000 *11.4 g/dl (11.5-15.5) “Comment: Borderline Hb noted.”

Creatinine: eGFR: -Moderate CKD since first tested in 2007

01/12/22 85 (45-85) 64 (>59)

23/08/22 89 H (45-85) 61 (>59)

14/06/22 84 (45-85) 65 (>59)

19/05/22 94 H (45-85) 57 L (>59)

11/05/22 93 H (45-85) 58 L (>59

Gamma GGT:

01/12/22 26 (5-35)

23/08/22 32 (5-35)

19/05/22 52H (5-35)

21/10/21 35 (5-35)

16/06/21 44H (5-35)

2005-2020 between14-18

14/02/00 40 (<40) -I was physically burnt out from stress & malabsorption/nsaids.

----------------------------------------------------------------------------------------------------

Edit: Each day I take:

glucosamine HCL 2x750mg; shark chondroitin2x250mg;

B1x300mg;

1xMaltofer (Maltofer=Iron polymaltose 370mg equivalent to 100mg of elemental iron per tablet);

D3x1000IU.

SlowDragon profile image
SlowDragonAdministrator in reply to

Rather than put these results on another person’s post ….it would be better to start a new post of your own.

More people will see it too

add info saying if you are you on any replacement thyroid hormones

Don’t think you are ?

You need FULL thyroid including thyroid antibodies and all four vitamins tested

in reply to SlowDragon

Oops, apologies to Shazy-B for waffling off topic!

Got caught up with replying.

No thyroid medication, SlowDragon, never have.

SlowDragon profile image
SlowDragonAdministrator in reply to

Come back with new post of your own once you get full thyroid and vitamin results

iron levels collapsed last summer

Increase iron rich foods if not done so already

Thyroid levels were all very low

Obviously need new testing done

in reply to SlowDragon

Summer?

I'm in the southern hemisphere.

in reply to SlowDragon

I'm always chasing iron-rich foods, eating more pate at the moment, but my appetite is not the best, not much taste and can't be bothered as much 'cos of fatigue/lack of motivation. Do make use of supermarket prepared fresh salad vegies but reducing red meat for the last 7 months has also affected readings?

SlowDragon profile image
SlowDragonAdministrator in reply to

Yes, you can see that cutting meat has drastically reduced iron levels

Please add country where based, age and wether male or female on your profile

We tend to assume everyone is in U.K.

in reply to SlowDragon

Australia, female.

SlowDragon profile image
SlowDragonAdministrator in reply to

open your profile page and add that info on

in reply to SlowDragon

Already have those details up but have my profile on private. Don't want to broadcast willy nilly, just when relevant.

in reply to SlowDragon

I've been eating plenty of chicken and eggs as I can't go without some kind of meat without feeling weaker/tireder/more light-headed.

in reply to SlowDragon

And thank you for your advice and the time you spend replying with information.

🙏

SlowDragon profile image
SlowDragonAdministrator

suggest you get full thyroid test 6-8 weeks after improving low folate and B12

Do you always get same brand levothyroxine at each prescription

cheapest option for just TSH, FT4 and FT3 - £29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

Only do private testing early Monday or Tuesday morning. 

Last dose levothyroxine 24 hours before test

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

as you have Hashimoto’s are you on gluten free diet and/or dairy free diet

Hi Shazy-B.

Have no experience with thyroidism but do with dropping levels from blood tests and supplementing to keep those levels up.

It's a good thing your gp does want to find out what's wrong.

I wish you the best in your search for answers.

humanbean profile image
humanbean

I have problems keeping my folate levels anywhere near optimal. Another thing is that my level fluctuates a lot.

I have to supplement almost continuously. I take a B Complex every day, and a methylfolate 1000mcg three or four days a week as well.

I wouldn't supplement with folic acid at any dose. The reasons why are given in these two links :

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

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