Endocrinologist rant: Have been waiting for... - Thyroid UK

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Endocrinologist rant

Thyroid2020 profile image
9 Replies

Have been waiting for surgeries which I’ve been on and off the waiting lists due to unstable thyroid levels. Have two pre ops due in next few weeks. Only had these sorted out with the Drs as had an appt with endo early august. Been taken off treatments for pain until thyroid sorted.

Endo medic just come back from 2 weeks in the USA. Now he’s off again when my appt is ams new appt booked February 2023!.

No other appts my TSH was 38 last year. Now 17. Other than surgery other health issues have been put down to thyroid issues

Help as fed up now

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9 Replies
Buddy195 profile image
Buddy195Administrator

Just to clarify, your TSH is currently 17 and you’ve been taken off the 150mcg dose of Levo you noted in your last post of 6 months ago?

It’s really helpful to members of you can add the ranges of your blood tests (in brackets) as these do vary between laboratories.

Did they test FT3 and FT4?

If not and you can afford the cost, I would test these privately. In your last post you were also advised to test key vitamins (ferritin, folate, vitamins D and B12). Were you able to do this?

nellie237 profile image
nellie237 in reply toBuddy195

Buddy195,

I think Thyroid2020 is saying "Taken off treatment for pain, not thyroid."

Thyroid2020,

I'm so sorry, your treatment, or rather lack of, sounds appalling, I think that you need some support ie somebody to help fight your corner. x

Buddy195 profile image
Buddy195Administrator in reply tonellie237

Thanks Nellie237, hopefully Thyroid2020 will clarify the current Levo dose, then we can better advise.

As SlowDragon has outlined, an increase is required if TSH is above 2.

Thyroid2020 profile image
Thyroid2020 in reply toBuddy195

Sorry for late reply to everyone!.My TSH last year was 38 GP didn’t do anything at all I only noticed when looked online .

Levo was reduced to 175mg then had pre op january Tsh 17

Then reduced to 150mg March now down to 11 still no surgery can be done.

Endo appt was august 2022- (been waiting 18 months for face to face) now rearranged to March 2023.

Been taken off surgery lists till this under control. (4 year on and off waiting lists).

Spoke to gp nothing said about adjusting my levo up or down and pretty fed up with it all now !

Buddy195 profile image
Buddy195Administrator in reply toThyroid2020

If your TSH is over 2 and you are on Levothyroxine, your GP should increase your dose, as SlowDragon outlined. Do ask for your FT3 and FT4 test results. How did you feel on your previous higher dose of Levothyroxine?

SlowDragon profile image
SlowDragonAdministrator

If TSH is over 2 you need increase in dose levothyroxine

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

Plus extremely important to have GOOD vitamin levels

test vitamin D, folate, ferritin and B12 at least once a year

What vitamin supplements are you currently taking

An anaesthetist unlikely to agree to an operation if your TSH is over 5

Thyroid2020 profile image
Thyroid2020 in reply toSlowDragon

Take bloods before 9am at GPS Am on vitamin D daily.

Gp don’t think they know what their doing as was put on TEVA and that’s done nothing at all other than it remains around 10/11 Tsh

Have been given by pharmacy in the past “tablets unbranded in a plain bottle no instruction or anything by pharmacy) when asked what brand told “they get them bulk in a big tub and count them out for each prescription “!

SlowDragon profile image
SlowDragonAdministrator in reply toThyroid2020

When was last test done

TSH far too high

On levothyroxine TSH must be below 3

Most people when adequately treated will have TSH around one

Most important results are ALWAYS FT3 followed by Ft4

Get 25mcg dose increase in levothyroxine and retest 6-8 weeks after any dose change or brand change in

Work out which brand levothyroxine suits you best and request GP add note to all future prescriptions

“Brand x only “

Request vitamin D, folate, ferritin and B12 testing NOW

Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

SlowDragon profile image
SlowDragonAdministrator

Approx how much do you weigh in kilo

Essential to regularly retest vitamin levels

Do you have autoimmune thyroid disease diagnosed by high thyroid antibodies

If you need significantly higher dose levothyroxine than 1.6mcg per kilo of your weight per day….this suggests poor absorption, poor conversion and/or poor nutrient levels

If Lactose intolerant this can increase dose levothyroxine required

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

to test vitamin D, folate, B12 and ferritin

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

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Persevere - have all guidelines printed and be ready to quote them

healthunlocked.com/thyroidu...

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