Treating me by the numbers...

[SecondAngel]

My endo keeps reducing my levothyroxine even through my symptoms indicate my levels are too low (now at the stage my hair is falling out) for me because he says the numbers are too high - any advice on persuading him otherwise?

[greygoose]

Which numbers is he talking about? Do you have your complete results and ranges? If so, best to post them here.

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Very important to also test vitamin levels and thyroid antibodies

What vitamin supplements are you currently taking?

Bloods should be retested 6-8 weeks after any dose (or brand) change in levothyroxine

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s?

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)

Are you also taking T3?

If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

[SecondAngel]

Thanks for the replies. A bit about me: I have had a total thyrodectomy (cancer) and was diagnosed with hashimoto's at the same time (about 5 years ago).

I'm currently on 125/100 levo on alternate days - always the same brand as there is only one that is lactose-free. After my last appointment I got blood test from my GP for vitamins/minerals and that was clear (low on vit D but I added a source of vit D to my diet and the retest came back as OK).

My latest letter doesn't list my thyroid test results but says the consultant is 'aiming to get my TSH to normal level and about 1.0' (my levels 6 months earlier were T4 of 19, I'm assuming this time they were a bit lower as he keeps reducing my dose; I also recently had a dynamic re-stratification test which came back low). My consultant keeps saying that my T4 is on the high side but I'm tired, my skin and hair is dry, I start to lose my voice after only about half an hour talking (even now when I no longer have to talk over background noise), I've gained nearly a stone in the last year and have joint pain (I'm 41).

For my voice my consultant proposed referring me to a speech therapist but I said no at the time as I was sceptical that it would fix the problem - I'd welcome any thoughts on that too.