Supplement advice: Hi I would like some advice on... - Thyroid UK

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Supplement advice

Ellen70 profile image
15 Replies

Hi

I would like some advice on supplements to improve folate , B12 and ferritin. I think my Vit d is ok. Current levels are:

Roche Serum B12 592 ng/l this was 2 months after a B12 injection previously was 327 in May 2023

Folate 10 .2 ng/l (previous test in May 2023 was 6.2)

Ferritin 34

Vit D 81nmol/l

I think B12 and vitamin D are ok? I plan to get B12 injections every 2/3 months.

Need to up folate to 20? Should I take a Vitamin B complex with folate or as I’m having B12 injection just a folate supplement?

ferritin I’ve requested GP to run full iron test in 2 weeks time as part of my bloods for thyroid med review! Been on 25mg of Levo for 2.5 months and thyroid levels being reviewed .

Currently classed as subclinical autoimmune thyroid.

see profile for info.

Any help on supplements much appreciated. I don’t have horrendous symptoms but I don’t want things getting worse !!

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Ellen70
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15 Replies
Mummybear0213 profile image
Mummybear0213

@SlowDragon is really helpful with supplement recommendations.

SlowDragon profile image
SlowDragonAdministrator

25mcg levothyroxine is only half the standard STARTER dose levothyroxine

Make sure you book 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)

Folate

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and may help maintain B12 levels between injections

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)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

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

Ellen70 profile image
Ellen70 in reply toSlowDragon

Thank you so much for your helpful response.

Are my levels very low ?

Once the autoimmune thyroid disease is under control does stomach acid return to normal?

How can oral supplements be absorbed with low stomach acid but not vits from food?

SlowDragon profile image
SlowDragonAdministrator in reply toEllen70

How can oral supplements be absorbed with low stomach acid but not vits from food?

With difficulty initially, especially when stomach acid can be very low

So relatively large doses often needed …larger than average population needs

also possibly why many people find vitamin D mouth spray is so good….avoids poor gut absorption

Similarly B12 supplements often are sublingual

Folate ….taking vitamin B complex daily will usually improve levels…eventually

Iron can be tricky to improve as it has to be absorbed in gut

Ellen70 profile image
Ellen70 in reply toSlowDragon

Are there symptoms of low stomach acid? Does acidity normalise once thyroid medication is working effectively?

My vit levels and ferritin are within “normal “ nhs levels so I’m hoping I’ve caught my autoimmune thyroid disease early enough to avoid serious depletion and associated symptoms. I realise I need to increase vits/ferritin to optimal levels.

I will order the b vits you recommended and up iron intake. Will not commence b vits until after my blood test on 16 Oct.

Thank you for all your help.

SlowDragon profile image
SlowDragonAdministrator in reply toEllen70

Low stomach acid can be a common hypothyroid issue and yes it should improve as dose Levo is increased

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

How to test your stomach acid levels

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Useful post and recipe book

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine doesn’t top up your own thyroid, it replaces it

As your TSH reduces in response to adding levothyroxine, your own thyroid stops working so hard. So you can actually become more hypo if on too low a dose

Also with Hashimoto’s TSH is often slow to respond/sluggish, especially if vitamin levels are low and especially if ferritin is low

Absolutely ESSENTIAL to test TSH, Ft4 and Ft3

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Ellen70 profile image
Ellen70 in reply toSlowDragon

My GP only tests T4 and TSH. Do NHS test T3?

SlowDragon profile image
SlowDragonAdministrator in reply toEllen70

Rarely these days

Lucky if you even get Ft4 tested at many GP’s

Hence thousands of U.K. patients test privately

Test including thyroid antibodies at least once

Test vitamin levels at least annually

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)

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) 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/testing/priva...

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

thyroiduk.org/testing/priva...

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

SlowDragon profile image
SlowDragonAdministrator

See on previous post your coeliac test was ambivalent

Are you being retested

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Ellen70 profile image
Ellen70 in reply toSlowDragon

Yes retesting 3 months after last test which will be end of Oct. I had similar results 3 years ago and paid had an endoscopy using private healthcare. This came back negative,

Continuing to eat gluten until blood test ! Must then decide if it’s positive whether I have another endoscopy or just go gluten free ? Hoping I’m just gluten intolerant rather than coeliac

SlowDragon profile image
SlowDragonAdministrator in reply toEllen70

Diagnosis largely irrelevant to you if you benefit from being on gluten free diet

Getting coeliac diagnosis can (sometimes) make medics take more notice

I certainly found although I tested negative for coeliac, endoscopy found damage as if coeliac…..and it helped get liothyronine prescription alongside levothyroxine on NHS eventually

Ellen70 profile image
Ellen70 in reply toSlowDragon

I definitely plan to trial gluten free after my next coeliac blood test.

SlowDragon profile image
SlowDragonAdministrator

ferritin I’ve requested GP to run full iron test in 2 weeks time as part of my bloods for thyroid med review!

Good

Come back with new post once you get results

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Ellen70 profile image
Ellen70 in reply toSlowDragon

I’m hoping GP will run full iron panel! I will certainly post results if she does !

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