b12 and folate: Has anyone seen a positive effect... - Thyroid UK

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b12 and folate

WeeB profile image
WeeB
6 Replies

Has anyone seen a positive effect on their b12 and folate since first staring levo. i’ve been deficient in both for years on injections and daily supplements and sat around the lower to mid range for both while supplementing but now both have skyrocketed above range after 7 weeks on levo .

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WeeB
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SlowDragon profile image
SlowDragonAdministrator

Vitamin levels are very often low DUE TO being hypothyroid

Looking at your previous posts you have been hypothyroid for years before starting on Levothyroxine

Essential to also test vitamin D and ferritin

Plus both TPO and TG thyroid antibodies.

You will need bloods retested 6-8 weeks after each dose increase

Ask GP to test vitamin D, ferritin and antibodies at next test, if not been done before

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

SlowDragon profile image
SlowDragonAdministrator

Just seen in your very first post that you have been tested high for antibodies years ago

With high antibodies (autoimmune thyroid disease) You should have been started on Levothyroxine once a TSH was above range

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.

According to Izabella Wentz the Thyroid Pharmacist

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly.

Either due to direct 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 slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first Or buy online test kit for under £20 just to rule it out

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

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

thyroidpharmacist.com/artic...

Trying strictly gluten free diet for 3-6 months. If you find it helps stick on it

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 when on just Levothyroxine to be adequately treated

sps.nhs.uk/wp-content/uploa...

WeeB profile image
WeeB in reply toSlowDragon

thank you , ive had my ferritin checked any all ok ( i have haemochromatosis so i retain too much iron and get it removed through vensections) i’ll keep getting my folate and b12 regularly checked by gp but vit d will need to be done privately . as will t3 . coeliac was done over a year ago and a consultant said it was fine . i appreciate all the exclamations you’ve given cos i always like to understand why things are happening and in what order so i can tackle it right . i’ve only had my tpo antibodies checked - should i try to get the tg antibodies done ?

SlowDragon profile image
SlowDragonAdministrator in reply toWeeB

Hemochromatosis and Hashimoto's are possibly linked. Certainly hemochromatosis can cause/aggravate hypothyroidism

verywellhealth.com/hypothyr...

"Rarely, certain diseases, like hemochromatosis, can deposit abnormal substances (iron, in the case of hemochromatosis) in your pituitary gland, causing central hypothyroidism, or less commonly, your thyroid gland, causing primary hypothyroidism."

redriverhealthandwellness.c...

ncbi.nlm.nih.gov/pubmed/182...

hindawi.com/journals/jir/20...

GP should test vitamin D. Low vitamin D is strongly linked to hypothyroidism

thyroiduk.org.uk/tuk/relate...

verywellhealth.com/why-is-v...

But if GP is especially unhelpful you can order online NHS test kit £29

vitamindtest.org.uk

Most Hashimoto's patients find strictly gluten free diet helps despite negative testing for coeliac

As you already have positive test for High TPO antibodies, that confirms cause as autoimmune thyroid disease also called Hashimoto's

thyroiduk.org.uk/tuk/about_...

NHS only ever tests once. Patients who use Medichecks or Blue Horizon to monitor other levels and regularly test antibodies can sometimes see TPO antibodies slowly falling after going strictly gluten free.

naturalendocrinesolutions.c...

WeeB profile image
WeeB in reply toSlowDragon

had no idea my hemochromatosis could have any links to hypo ! but like you said , more likely hashimotos the cause

SlowDragon profile image
SlowDragonAdministrator in reply toWeeB

Your GP may have no idea they are linked either

We see quite a few on here with Hashimoto's and hemochromatosis. But often the hemochromatosis is undiagnosed

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