Over-treatment: Hi,I've been treated for... - Thyroid UK

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Over-treatment

CrochetDimples profile image
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Hi,I've been treated for hypothyroidism for about 8 years and for most of that time, taken 150mg of levothyroxine.

Recently, as the fatigue had become difficult after having covid, I found my B12 levels were low, so I started treatment for that. My fatigue improved about 2 weeks later.

I looked at my TSH values for recent years and they have been consistently low, around 0.1 so I'm wondering if I've been taking too much levothyroxine which was masking the B12 deficiency. And, as a result, if I should now try reducing the levothyroxine dose?

Any ideas please?

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CrochetDimples
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SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

More likely poor conversion on Ft4 (levothyroxine) to Ft3 (active hormone)

For good conversion of Ft4 to Ft3 we need GOOD vitamin D, folate, B12 and ferritin levels

How low was B12

Can you add vitamin and thyroid results

Has GP tested for Pernicious Anaemia

Is your hypothyroidism autoimmune?

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)

just testing TSH is completely inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

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

approx how old are you

Conversion often gets worse after menopause

CrochetDimples profile image
CrochetDimples in reply to SlowDragon

Oh wow, thank you. I'm going to need to answer properly later with all my results.For the moment, I'm 53, female, post menopause as I've had chemo which triggered it early, then later had a hysterectomy.

I've never been told if it's autoimmune or what type or cause of hypothyroidism. I don't think my thyroid antibodies have ever been tested.

SlowDragon profile image
SlowDragonAdministrator in reply to CrochetDimples

So first step is to establish if your hypothyroidism is autoimmune

if you have access to blood tests online look back to test results when originally diagnosed

Did hypothyroidism start before or after chemotherapy/radiotherapy

FULL thyroid and vitamin testing available via private testing

Thousands of U.K. thyroid patients forced to test privately to make progress

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

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...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

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

SlowDragon profile image
SlowDragonAdministrator

Examples of private test results

Medichecks

healthunlocked.com/search/p...

Blue horizon

healthunlocked.com/search/p...

CrochetDimples profile image
CrochetDimples

So, a more complete reply.

It is taking some effort to get my head round this all. I have been rather lazy about it but realise that I can't do that in the current NHS climate.

I am not sure if I have been tested for pernicious anaemia. None of the tests mention it specifically and nor has my GP.

Looking back at test results, in December 2015, my thyroid peroxidase antibody level was 270 iu/mL which I think indicates that it is autoimmune? I don’t think TG thyroid antiboides have been tested for. What difference will it make if it is autoimmune?

On 9th Oct 2023: Serum TSH 0.09 mIU/L and Serum Free T4 26.2 pmol/L

On 15th Dec 2023: Serum TSH 0.11 mu/L

On 1st Dec 2023, private B12 test from Medichecks: 137 pmol/L which I think converts to 186 ng/L on 1st Dec 2023 Since then I have been taking very high dose B12 orally (2000 micrograms). I have also been taking Adcal (calcium and vit D for about 9 years.

Thank you for your help. I hope this is clearer.

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