Levothyroxine not working/next steps: Hello, my... - Thyroid UK

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Levothyroxine not working/next steps

Sazzle1969 profile image
8 Replies

Hello, my GP put me on 25mc of Levothroxine 3 months ago. I was getting T3 privately before then but the clinic I was with suggested I go to GP to get Levothyroxine as the T3 had lowered my TSH so much. However, I have felt progressively more ill on Levothyroxine and don't think it is helping - previous blood tests showed I have high reverse T3 levels and I'm worried I'm just converting the T4 to more RT3. However, GP won't test my bloods other than to check TSH and won't give me any alternative medication. He just says I should 'manage my expectations' and at my age, 51, I would have been considered an old woman a few years ago and I shouldn't expect to have a lot of energy at this age. I have explained that some days I feel so bad I can't do anything except lie on the sofa - after working in the week I am finished by the weekend and have to sleep a lot to recover. During the day I feel like I am running on a flat battery - all typical symptoms of depression, exhaustion, headaches, blurred vision, dizziness, brain fog etc. I feel like I have gone round the houses trying to get treatment for this over the last few years and the only thyroid specialists I have come across on the internet seem to be abroad, I haven't found anyone in this country. I am thinking now that maybe my best bet is to get another round of private blood tests showing all my thyroid panel including RT3 and then decide if to come off the Levothyroxine on my own and just try to deal with my thyroid using the AIP diet. Any advice/others been in the same boat? I feel so depressed with it right now - I feel like I am nearing the end of the line with this and should just accept that I am going to be ill and live with it, as my GP suggests. Many thanks

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SlowDragon profile image
SlowDragonAdministrator

Hardly surprising 25mcg dose levothyroxine not helping

Standard starter dose of levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after each dose increase and dose is stepped up as fast as tolerated

Levothyroxine doesn’t top up failing thyroid, it replaces it

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator

First step is to get FULL thyroid and vitamin testing done privately

Then see different GP, or endocrinologist

Come back with new post once you get results

Which brand of levothyroxine are you currently taking

What vitamin supplements are you currently taking

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

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

fuchsia-pink profile image
fuchsia-pink

First off I'd get a different GP! 51 may have been old a few centuries ago but you still should have a good 30+ years left in the tank these days :) I'm half a dozen years older than you but now optimally medicated and feel like I did 20 years ago before diagnosis - I do a 5-mile coastal walk every morning, no brain fog, no probs at all - so it IS possible :)

I'd get a full set of blood tests done - excluding reverse T3 which is expensive and doesn't tell you much that's useful (there can be all sorts of reasons for the result most of which are not thyroid-related) - so TSH, free T4, free T3, ferritin, folate, vit D and B12 - and post the results here (and the related lab ranges which vary from lab to lab) in a new post. Have an early morning, fasting blood test, with 24 hours from your levo and 8 - 12 hours from your last dose of lio, and stop anything with biotin a week before.

I find it disappointing when GPs obsess about a low TSH when you're on lio - it's just what happens and I'm not remotely fussed that mine is suppressed. I take more levo and probably less lio than you (50 mcg and 20 mcg respectively) - but it's all about finding your personal "sweet spot". In my case I need both frees nice and high in range - but you also need your key nutrients good too

Good luck x

Sazzle1969 profile image
Sazzle1969 in reply to fuchsia-pink

thank you, fuschia pink. Once I get my blood tests in I'll post them here. Yes, I'm sure I shouldn't feel like this at this age - I don't think it an age thing, I'm convinced my hormones just aren't working properly. I think I need to get the medication right and that's the problem at the moment

SlowDragon profile image
SlowDragonAdministrator

Not clear....are you still taking some T3....if yes how much

Sazzle1969 profile image
Sazzle1969 in reply to SlowDragon

I'm not taking T3 at the moment - doc told me to stop in November and put me on only Levothyroxine.

SlowDragon profile image
SlowDragonAdministrator in reply to Sazzle1969

So you need 25mcg dose increase in levothyroxine up to standard STARTER dose of 50mcg

Bloods retested 6-8 weeks after each dose increase

Unless extremely petite likely to need at least 2 further increases up to at least 100mcg levothyroxine daily

Once you work out which brand suits you best.....Always get same brand levothyroxine

Sazzle1969 profile image
Sazzle1969

thank you, once I get my bloods in I am going to get a private prescription and then keep retesting every 6 weeks until I get it right

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