T3 or lack of

[Catlady73]

how do you actually know you need T3 ? Here in England T3 isn’t tested because we can’t get the drugs for it here , been on levo for yrs … and the past 2-3 yrs my symptoms have become worse had a blood test last week has my arms n legs have become weak .. tingling in my feet n fingers , and want to sleep all the time … bloods came back that I’m lacking vitamin D , plus my thyroid meds needs to increase … but how. Would I know if it’s the T3 bit or lack of

[greygoose]

You'd have to do a private test for FT4 and FT3 at the same time and compare them. Percentage-wise, through the ranges, the FT3 should be just slightly lower than the FT4. The wider the gap, the worse the conversion.

[SlowDragon Administrator]

Thousands of U.K. patients are prescribed T3 on NHS and privately

64,500 NHS prescriptions in England in last year

openprescribing.net/analyse...

First step is to get FULL thyroid and vitamin testing done

Ideally via GP, but frequently many need to test privately

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

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

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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Steni]

I always have my T3 tested , I just ask my doctor to add it to the list of things that need to be tested .

[TaraJR in reply to Steni]

You're lucky! Many drs don't think a T3 test is needed. And even when they do ask for one, the labs won't always do them.

I'm lucky at the moment that my surgery does test T3 (I take T3) but many aren't.

[Steni in reply to TaraJR]

I think you have to be quite firm with them for sure. Although I don’t think I would dream of staying with a Doctor I felt wasn’t interested in my point of view maybe best to change Dr’s

[TaraJR in reply to Steni]

I know how you feel. But some drs have their hands tied by their surgery, local health board or the local lab, despite the dr's request.

[Steni in reply to TaraJR]

Appalling !!

[Catlady73 in reply to Steni]

I’ve asked , was just told they don’t do it , as they don’t know enough about T3 side , and can’t treat it as they don’t have t3 drugs here

[Steni in reply to Catlady73]

would it be possible to tell them this isn’t good enough ? That many many doctors do know about T3 and that they have a duty of care to all their patients whether they ‘know about’ their conditions or not . Someone once posted information which could be shared with doctors by way of educating them - I don’t see why you should give up - I guess you’ll maybe have to make a nuisance of yourself until someone in that surgery pulls their finger out ?

[SpringerMom]

Have you also had the key thyroid vitamins checked, B12, folate etc? I experienced very similar symptoms a few months ago and, as well as low but in range thyroid hormones, the key vitamins were also low in range. Symptoms of B12 deficiency seems to overlap with hypo symptoms. Since upping Levo from 75 to 100 and addressing the low vitamins I feel much better but haven’t retested yet. Not 100% back to normal but getting there.

[cbraffe]

My GP always tests for T3 and key vitamins. I believe this is because after my thyroidectomy I was so neglected and ended up very unwell for several months. Please just ask and explain why you feel these tests are required. Best of luck

[meme]

You can get T3 tested in the U.K. and you can get T3 prescribed.

My GP tests t3 every time and I have been prescribed t3 by an Endo in the UK but I prefer NDT so self medicate.

[bikebabe in reply to meme]

You are fortunate to have a GP who tests t3!

[meme in reply to bikebabe]

Well as I take t3 it’s stupid not too! I also get private t3 tests.

[bikebabe in reply to meme]

What I meant was that many GPs either don't won’t or aren’t funded to do t3 testing.

[meme in reply to bikebabe]

Home tests are available for around £30.

[bikebabe in reply to meme]

Wasn't my point, but yes i agree and glad these are available otherwise we would be up the proverbial creek .

[meme in reply to bikebabe]

It’s sad we, as thyroid patients, are so badly served.

[serenfach]

Here in Wales the GPs are not allowed to ask for T3 to be tested, and it has been taken off the blood test forms. According to the protocol, if your TSH is out of range, they are supposed to test T3 and T4, but usually only actually do T4. The nurse actually writes "taking T3, please test" but the labs dont take any notice. Even the Endo said he could not ask the labs to test T3. I am fighting this now.

[SlowDragon Administrator in reply to serenfach]

Many in England have similar experience

Hence the explosion in private testing

I am prescribed T3 on NHS, my TSH is always suppressed.

Yet NHS won’t test Ft3

Madness

[Steni in reply to SlowDragon]

But they will test it and do !!

[Miffie in reply to Steni]

That may be the case where you live however it has been my experience that labs overrule GP requests for fT 3 testing. My own GP a couple of years ago had a long and difficult time with the local lab and eventually had to send the sample for the attention of the Senior biochemist. As it turned out despite this the duty biochemist intercepted and did the test minus fT3 advising it was not tested as fT4 was in range and there not eligible for fT3 testing.

This is not unusual many UK labs have exactly the same protocol. Many many members of this forum are in the position. We test privately for a full picture.

[Steni in reply to Miffie]

I believe you - such a terrible service though.

[SlowDragon Administrator in reply to Steni]

Lab often refuses despite GP request

[thyr01d in reply to serenfach]

I am treated in Wales, although I don't live there, and my T3 is tested, monitored and prescribed, perhaps someone is telling you porkies?

[serenfach in reply to thyr01d]

As I have taken on the WLAMS on this, gone through the highest Endo, helped fight my GPs who were angry at not being able to test, seen it written on the test results that the surgery is not allowed to test T3, I dont think anyone is telling porkies here in Hywel Dda region, which covers Ceredigion, Carmarthen and Pembrokeshire.

[thyr01d in reply to serenfach]

I see, with respect because I know you post much helpful and kind information, to avoid disheartening people living in other regions needing T3 tested I think it might be better not to state 'Wales' when referring to some parts of Wales only. I'm not meaning to be offensive at all, but trying to be kind to those people who might read your comment and think there's no hope.

[PinkSkittles]

FT3 is tested by the nhs and T3 prescribed by some NHS Endocrinlogists too. Ive had ft3 tested by NHS GPs for years.

T4 medication can raise ft3, not just T3 medication.

[PinkSkittles in reply to PinkSkittles]

Or you can order ft3 privately.

I have a list of nhs endocrinologists who prescribe t3 medication, sent to me by thyroid uk.

[Catlady73 in reply to PinkSkittles]

I asked about this at my doctors , yet again I wasn’t given much hope only to say well if you get it aboard there’s the question of dosage etc , n how much to take … I’m unsure how you access private messages on here ? , but a list would be good please , I’m in Leicestershire

[PinkSkittles in reply to Catlady73]

Hi I just looked at the list but there is no one in Leicestershire. I can email it to you though if you want, as you can to be referred to the next trust closest to you.

Also would you pay to see someone privately instead?

In the meantime I would order the ft3 test yourself online and see if its optimal ie whether you definitely need t3 medication.

[Catlady73 in reply to PinkSkittles]

That would be great thank you

[elwins]

I am afraid as always it is post code lottery as they say, some areas test but others do not, my health authority does not test for T3 wish they would.

[Bearo]

As Slow Dragon advised above, your first step should be to get a private test of TSH, FT3, FT4 and antibodies. When you receive the results post them here (including test ranges) and you will receive advice regarding next steps.