Reduce medication?: These are my latest results... - Thyroid UK

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Reduce medication?

Ireness profile image
19 Replies

These are my latest results taking 100mg levothyroxine one day and 75mg the next. My GP said she’ll have to reduce my thyroxine or I’ll get osteoporosis.

In March 2019 my results were:

TSH 0.398

Free T3 4.16

Free thyroxine 16.6

Thyroglobulin 345.0

Antibodies

(Taking Levothyroxine 75mg)

December 2019:

TSH 0.104

Free T3 5.18

Free thyroxine 18.9

Thyroglobulin 85

Antibodies

(Levothyroxine 100mg)

I don’t know why my antibodies disappeared but I am worried about reducing my dose. It’s the same old story about GP’s just being concerned with TSH and she said my T3 is in range and normal.

Do you think she’s right or should I stay in the dose I’m on now? I feel okay at the moment so don’t really want to mess about with my body.

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Ireness
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19 Replies
Lalatoot profile image
Lalatoot

No I would not reduce. Your FT3 is low in range while your Ft4 is at the top of range. You obviously need FT4 at the top to get FT3 into the bottom of its range. If you reduce your levo your ft3 will fall out of range.Plus you feel okay and you don't want to mess with that.

Ireness profile image
Ireness in reply toLalatoot

Thanks. I’ve noticed my FT3 dropping over the last year so not keen to reduce again.

Anthea55 profile image
Anthea55

See this page from the ThyroidUK website. You'll find a heading saying

"The Myth that a Suppressed TSH Leads to Osteoporosis"

thyroiduk.org/help-support/...

So stick with what makes you feel best.

Ireness profile image
Ireness in reply toAnthea55

That’s great - thanks

SlowDragon profile image
SlowDragonAdministrator

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

Essential to REGULARLY retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Ft4 is 90% through range

But

Ft3 is only 20% through range

Your conversion is very very poor

Perhaps because of low vitamins

TG Thyroid antibodies are dropping nicely because your TSH is low

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

If you were to reduce levothyroxine you would definitely need addition of small doses of T3 prescribed alongside levothyroxine

SlowDragon profile image
SlowDragonAdministrator

Osteoporosis is linked to low Ft3 or high Ft3

thyroidpatients.ca/2018/07/...

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

fuchsia-pink profile image
fuchsia-pink

Absolutely agree with Lalatoot and other posters.But suggest to the GP that you get a dexa bone scan, which will show how your bones are now and can therefore give a useful benchmark going forwards - so you can both be reassured and you can prove your bones are not being harmed by a low TSH combined with not-that-high free T3 x

Ireness profile image
Ireness in reply tofuchsia-pink

I hadn’t thought of getting a scan - thanks

SlowDragon profile image
SlowDragonAdministrator

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

You will almost certainly need to see thyroid specialist endocrinologist as next step

Important to get all four vitamins tested and optimal

GP will unlikely want to leave results as they are - perhaps ask GP to test vitamin levels now

Ireness profile image
Ireness in reply toSlowDragon

Thankyou

Ireness profile image
Ireness

Thankyou all so much for all your advice. It seems to be an ongoing battle for all of us unfortunately

Ireness profile image
Ireness

Yes I had an 8.15am appointment and my last dose was 6am the day before. I had fasted but they told me I didn’t need to. I’m taking B vitamins, vit D/K7, magnesium. I need to get my vitamins checked again. I wondered if the antibodies had dropped because my thyroid was knackered. I’ll definitely try and see an endo specialist. Thanks for all your help.

humanbean profile image
humanbean in reply toIreness

Do your B vitamins include Biotin? If they do it is important to stop taking it for a few days before getting blood tested because Biotin can corrupt lots of different kinds of test results. See these threads for more info :

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

Ireness profile image
Ireness in reply tohumanbean

Thanks. I’d had a break from the B vitamins for a few weeks before the test so hopefully it’s a true result

SlowDragon profile image
SlowDragonAdministrator in reply toIreness

Common after menopause to need the addition of small doses of T3 prescribed alongside levothyroxine

Currently difficult to get prescribed on NHS due to vast price hike in recent years from the only licensed pharmaceutical company (up 6000% to £268 per 28 tablets 20mcg and under investigation for price gouging by competitions and marketing authority)

Now there are 3 licensed suppliers and price has dropped to £121 per 28 tablets. Still some way to drop to be comparable with EU T3 at 31 euro for 100 tablets

Many, many hundreds of U.K. patients unable to get prescribed on NHS and forced to see endocrinologists privately to get private prescription to order online from EU

Media coverage

thyroidtrust.org/media-cove...

mjauk.org/wp-content/upload...

dailymail.co.uk/news/articl...

medscape.com/viewarticle/90...

theyworkforyou.com/search/?...

To qualify for T3 on NHS is difficult, but not impossible

Important to see the right endocrinologist.

Ireness profile image
Ireness in reply toSlowDragon

Crikey that’s a crazy price. It seems daft taking thyroxine when it’s the T3 we need

SlowDragon profile image
SlowDragonAdministrator in reply toIreness

There’s roughly 2 million people in the U.K. on levothyroxine

Roughly 10-20% of thyroid patients don’t recover on just levothyroxine and need SMALL dose of T3 alongside levothyroxine(typically 10mcg-20mcg daily, usually as divided doses of 5mcg)

A smaller number of patients might need slightly higher dose T3 alongside levothyroxine

And very rare, some people can only tolerate taking T3 - typically 40-60mcg a day

If in England you can search by your CCG area to see numbers of prescriptions

Post code lottery

openprescribing.net/analyse...

There was no price regulation generic medications. Loophole now closed, but no action taken to drive prices back down

Ireness profile image
Ireness in reply toSlowDragon

Just had a look at my practice. My GP said they can’t prescribe T3 but it was prescribed twice in the last year at a cost of £300. Levothyroxine was prescribed 1635 times at a cost of £4099. Thankyou so much for the information

SlowDragon profile image
SlowDragonAdministrator in reply toIreness

More of us are managing to get prescribed on NHS

In part, because forums like this make patients aware of what tests you need to demonstrate that you need it

Getting FULL thyroid including Ft3 and antibodies

Getting all four vitamins tested and optimal

Dio2 gene test

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

Coeliac blood test/endoscopy to diagnose/confirm gluten intolerance

Consider lactose intolerance as an issue

Gut infections - H pylori, SIBO etc

Other viruses including glandular fever, Lyme disease

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