GP only testing TSH now - no longer T3/T4 - concerned!

[Brumlady]

30.08.23 SORRY ABOUT DELAY/HAVE BEEN OFFLINE. THANK YOU SO MUCH FOR ALL YOUR REPLIES - MUCH APPRECIATE THIS NEW INFORMATION. 👍😀 The Lab my GP uses only gives TSH results, no longer T3/T4. I am on Thyroxine due to a partial Thyroidectomy years ago. Occasionally in the past the results show my dosage is too high or too low. Got bulgy eyes first thing, fast pulse, yet GP says TSH results OK - 0.72 If the Lab were testing T3 and T4 before there must have been a reason! Cost cutting potentially impacting on patients help?

[Hidden]

The GP orders the tests he wants. The lab follows those instructions when processing the samples. They may decide not to test for FT3, even if ordered, but they will always test FT4 if it’s been requested.

Sounds very much like your GP only ordered TSH. Many GPs diagnose and dose on TSH alone. This is not helpful.

[Brumlady in reply to Hidden]

Thank you Everywhere2 - I seem to remember the GP has blamed the Lab in the past, so I have queried it via an appointment request today. Not sure how far that will take me! Will keep in mind request needs to be made for FT4!👍

[Hidden in reply to Brumlady]

Indeed. The lab will test as requested by doctor. However, I know there are occasions when they ignore a FT3 request. They always test mine though as my TSH is suppressed and all the alarm bells ring 😉

[pennyannie in reply to Brumlady]

Hello Brumlady ;

As I understand things there is a ' cascade system ' in place at the Laboratories whereby the TSH is the first blood test analysed and depending on the result, a T4 blood test is then run and then depending on that result a T3 reading will be run.

It is quite ridiculous as once on any form of thyroid hormone replacement we should be dosed and monitored on our T3 and T4 being in hormonal balance within the ranges.

I don't think the computer is programmed with the patients medical history but even so there are no special guidelines, when with or without a thyroid, or with Graves post RAI thyroid ablation as in my case.

I now run my own private thyroid blood tests and taught myself through this amazing forum what it all means and what my next best steps back to better health were.

Your eye should not be distorted - and needs attention - sounds like TED -

If you contact the Thyroid Eye Charitable Trust they can signpost you to specialist clinics throughout the country where you will find both an endocrinologist and an eye consultant with specialist knowledge in TED/Graves Ophthalmology who will work together and with you to achieve, manage and prescribe the necessary thyroid hormone replacement for your condition - and run the necessary essential blood tests of at least a TSH, Free T3 and Free T4 : tedct.org.uk

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.

Some people can get by on T4 only medication.

Some people find they need to add back in a little T3 - likely around the same dose as their thyroid once supported them with - to restore their health and well being.

Some people can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels so it would be a good idea to get a full thyroid panel run and forum members can advise of your next best steps to better health.

We need to see a TSH, Free T3, Free T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D - generally referred to as a Thyroid Advanced blood test and around 10/11 individual blood tests offered by private companies listed on a page within the Thyroid UK website - thyroiduk.org - and between them Medichecks and Blue Horizon also offer a nurse home visit to draw the blood for you - and in my opinion the least stressful, though slightly more expensive option.

Arrange an early morning appointment say by 9.00am for the blood draw for the beginning of the week and you should then have back the results before the weekend - and just start a new post/question with all the results and ranges and forum members will give you considered opinion on our next best steps back to better health.

If taking any supplements and anything containing biotin leave off for around the week before the blood test.

Fast overnight before the blood test just taking in water and do not take your daily dose of T4 until after the blood draw so we have around a 24 hour window since your last dose and measure what your body is holding and not what you have just taken.

[Hidden in reply to pennyannie]

Interesting information about cascading. I understand though that if a doctor requests specific tests, and not just TFT, these will usually be done.

[pennyannie in reply to Hidden]

I'm not so sure - I was told it's down to the Labs - obviously it's a pass the buck game - as it's easier to blame someone not present to rebuff the comment.

Wherever the decision is made it seems a cost cutting exercise and if 1 analysis is deemed sufficient instead of 3 - that's a saving of 66% - though that be just a couple £ 's in the overall scheme of things - multiplied out - I guess the saving considerable - though at the expense of a sector of the overall population's health.

[Hidden in reply to pennyannie]

There is space on the request form for the clinician to give supporting information.

My GP always writes:

TT. Patient taking T3

Maybe I’m fortunate but I’ve never had a problem

[SlowDragon Administrator]

How much levothyroxine are you taking

Do you always get same brand levothyroxine

Very important to test vitamin D, folate, B12 and ferritin at least once year

What vitamin supplements are you taking

Request GP test vitamin levels

Request retest including Ft4 and Ft3

if GP refuses

Test privately yourself

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)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

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

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

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

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

[serenfach]

Nearly all blood testing has now been privatised. By dropping tests they dont think are necessary, they can save money and make more profit.

NICE guidelines - Tests when thyroid dysfunction is suspected

1.2.8 Consider measuring thyroid-stimulating hormone (TSH) alone for adults when secondary thyroid dysfunction (pituitary disease) is not suspected. Then:

• if the TSH is above the reference range, measure free thyroxine (FT4) in the same sample

• if the TSH is below the reference range, measure FT4 and free tri-iodothyronine (FT3) in the same sample.

All Wales testing morphed this to - If a patient is already on Levothyroxine for primary Hypothyroidism, then TSH only is the first line test. Free T4 may be added, depending on the TSH result, although the requirement to add this at all is being considered nationally within the laboratory network, as guidance would suggest it is not routinely required. When national decisions are made regarding thyroid testing protocols in the All Wales LIMS, the advice and endorsement of the Welsh Endocrine and Diabetes Society may be sought.

Therefore, after seeing many inappropriate free T3 requests, and in the spirit of prudent and value based healthcare, a decision was made by the Clinical Scientist Team within the UHB to restrict free T3 requesting from Primary Care, knowing that it can be added where needed.

Struggling to find an email or phone number for the All Wales LIMS so I can challenge this. I know one of the top bods in the Welsh Endocrine lot does not believe in T3.

Shall we throw them in a loop and demand testing for T1 and T2 be added?

[SlowDragon Administrator in reply to serenfach]

if the TSH is below the reference range, measure FT4 and free tri-iodothyronine (FT3) in the same sample.

My local lab still doesn’t test Ft3 even if TSH is below range/suppressed

As result I haven’t had NHS test for around 10 years

GP very happy to accept (comprehensive) private test for thyroid and vitamin levels results at my annual review