Advice please: I had a partial thyroidectomy... - Thyroid UK

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Advice please

BlueLido profile image
6 Replies

I had a partial thyroidectomy (left removed) in April 2023. I am on 50mg levothyroxine but I am still not feeling right. I am having trouble regulating my temperature, my hair has tinned a lot. I am tired, ache, have put on weight and feel miserable. Keep being told by GP that my TSH is in normal range!. Should I be asking for other tests? My latest tsh result was 2.3.I am also on 25mg of letrozole for breast cancer.

Any help would be appreciated.

Thank you

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BlueLido
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6 Replies
RedApple profile image
RedAppleAdministrator

It sounds as if you need your levothyroxine dose increased. Some people would feel ok with TSH 2.3, but many need their TSH to be nearer to one.

Ask your GP if you can please 'trial' and increase to 75mcg to see if it helps.

BlueLido profile image
BlueLido in reply to RedApple

Thank you for your helpful reply. I will discuss with my GP.

SlowDragon profile image
SlowDragonAdministrator

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 to see if your hypothyroidism is autoimmune

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and/or when on inadequate dose levothyroxine

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

hair loss suggests low iron/ferritin

Also VERY important to test TSH, Ft4 and Ft3 together

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)

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

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...

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

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

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

BlueLido profile image
BlueLido in reply to SlowDragon

Thank you for your comprehensive reply. I will discuss further with my GP.

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group and thank you for the helpful profile.

50mcgs Levo is just a starter dose. Ask GP for next increase to 75mcgs Levo. If vitamin levels are low this can cause intolerance symptoms or symptoms that feel like being hyper.

Firstly check how you are taking your Levo.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

I suspect you may well have low if not deficient vitamin levels which are very common in hypo people.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Do you do tests as per the protocol recommended here?

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

BlueLido profile image
BlueLido in reply to Jaydee1507

Thanks for your helpful reply. I will discuss with my GP and get some more blood tests.

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