levothyroxine needs upping ? : Hello all, I... - Thyroid UK

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levothyroxine needs upping ?

Cavalierloversam profile image
6 Replies

Hello all,

I have been on levothyroxine since August 2024, started at 50 but then moving to 75mg. I have recently begun to feel very sluggish again and have burning in my toes and lack energy to do anything beyond essentials. Drs are testing my TSH levels rather than T3 and T4. My TSH levels had gone down to normal range when tested at the end of January, so all fine there, but I don’t know what my actual thyroid results are as they don’t test them.

Is is reasonable to ask for an increase in my levothyroxine based on my symptoms? I have gained some weight and have my round face back again -which had previously settled. My Dr did previously say they would increase according to my symptoms, and I feel that they have come back. TIA

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Cavalierloversam
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greygoose profile image
greygoose

It would be perfectly reasonable. 75 mcg is not much more than a starter dose, and if symptoms are returning it means that you're ready for the next increase.

The TSH now being in-range doesn't mean anything - unless it's 1 or below. But even then TSH is very unreliable. Your TSH can look good - or even be suppressed - but your thyroid hormone levels still be too low. Unfortunately doctors don't understand that and rarely test for FT3 - they don't even always do FT4 which is totally illogical given that it's T4 you're taking, not TSH! But they think they know it all and you can't tell them anything!

What exactly was your TSH level?

Cavalierloversam profile image
Cavalierloversam in reply togreygoose

thank you very much Greygoose for your detailed reply. My TSH was tested at the end of January and was 1.

greygoose profile image
greygoose in reply toCavalierloversam

OK so it wasn't high, but if your symptoms are returning then it's too high.

Cavalierloversam profile image
Cavalierloversam in reply togreygoose

And of course we are now in March so it may well have fluctuated again. I think I will do an e consult for my Drs tomorrow and ask if it could be increased.

Thank you for your help

greygoose profile image
greygoose in reply toCavalierloversam

I think that would be a good idea. :)

SlowDragon profile image
SlowDragonAdministrator

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

Reading your previous posts you need testing for pernicious anaemia

Burning toes suggests low B vitamins

Request GP test vitamin levels if not tested recently

What vitamin supplements are you taking

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...

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...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endocrinenews.endocrine.org...

In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

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