Concerns that testing in UK is getting worse

[Algic]

I'm hearing that there are moved circulated to move to just Tsh testing only . This will be completely useless. Private testing is not the answer for all as most people can't afford basics at the moment. So many are struggling. Without being political the NHS has been mismanaged and starved of recognition.

Currently NICE are backing only Tsh and T4 testing. T3 was requested by Gp with clinical reasoning. It wasn't done.

ITT are focusing on the T3 campaign. We need proper testing for Gps to manage our condition .

I'm thinking of starting a petition to get this debated in parliament , that the current test fails.

[RedApple]

Algic, TSH only testing has been the norm in the UK for many, many years. FT4 only being tested if TSH is below range. FT3 is very rarely tested, regardless of reason for request by GP/Endo, as not deemed necessary or useful.

Rather than starting your own petition, it would be far better to get as many people as you can to sign the current Govt Petition by Dr Peter Taylor for funding to enable research into the need for T3, which would include FT3 testing.

Give more funding for thyroid research and patients after price hike petition.parliament.uk/peti...

[Algic in reply to RedApple]

Actually in our area we have T4 testing but for how long. How can we argue the need if no thyroid hormone is being measured and only pituitary hormone is measured. We should be billing our ogs for our thyroid tests . They are failing us. Nobody is getting the same level of care we got 20 yrs ago and that was poor. Nobody is fighting for the basic care we have lost. I saw an endo that didn't even know where the thyroid was and thought a ct was the same as a MR. And nothing changes in 2 years. (she was later examined under clinical governance and is no longer employed) it's not just T3 but actual proper care we need.

[Bean101]

My Dr requested Aldosterone and renin blood tests due to symptoms and very high renin in the past.. the lab refused to do it

[HealthStarDust in reply to Bean101]

Have you actually spoken to the lab about this? I get the sense a lot of times a GP says this, but in fact the GP has ordered the test incorrectly for the lab to process. This happened to me and another GP ordered the test the correct way. Suffice to say, I didn’t go back to the GP who downer even know how to order tests!

[Algic in reply to HealthStarDust]

Gp wrote on the form full reason why

[HealthStarDust in reply to Algic]

Ah! Oh. All my forms have reason for testing, they have to but as I found out, that doesn’t mean the correct test was ordered on the system in the particular way that the lab requires. Hence, speaking to the lab is helpful to know why they refused.

It’s suspect a lot of the times when tests are refused it is because the GP selected the wrong test.

[FancyPants54]

I must be lucky then. My GP request form, completed by the nurse for my private endo visits always test FT3 for me. I've never had a refusal. So it's probably a postcode lottery like so much else in the NHS these days.

[HealthStarDust in reply to FancyPants54]

I think it’s a both postcode and GP lottery. Some are too inept at ordering the right tests in the particular way the lab requires. Or, just tell us lies as they don’t like an informed patient. Or, just would prefer not to protect their own egos as they have no clue how to interpret them.

I haven’t had FT3 done yet, but I have had FT4 several times and T3 done via GP. I haven’t had any lab refusals yet thank god 🤞🏽

[Algic in reply to FancyPants54]

That's the thing it's private not nhs

[FancyPants54 in reply to Algic]

No, only the endo is private. All the tests are at my GP surgery. On the NHS.

[greygoose]

I don't think testing FT3 would improve treatment because the majority of GPs don't even know what T3 is. And can't even interpret a TSH test correctly. Education of GPs needs improving before anything else can be done.

[HealthStarDust in reply to greygoose]

Since no one is willing to educate them, sadly it falls on us to work collaboratively with them as far as possible. And, even more so for many who have to rely on the NHS.

Not an easy world we navigate.

[greygoose in reply to HealthStarDust]

Not easy at all. But doctors, for the most part, are resistant to learning from patients. They think we're all idiots!

[HealthStarDust in reply to greygoose]

While, few, many can be reasoned with… eventually. It’s hit and miss.

[greygoose in reply to HealthStarDust]

Oh it certainly is! I had one doctor refuse me T3 because he didn't know what it was. And another that prescribed T3 because he didn't know what it was. Depends so much on the individual character of the doctor, as well as his level if thyroid knowledge.

[HealthStarDust in reply to greygoose]

They need rehabilitating GG! We need some kind of clinic to literally rehabilitate these professionals to have some clinical curiosity, positive risk taking, and just care to learn how to treat hypothyroidism.

We can throw in some education on bedside manner as an add on.

The whole thing is a global disgrace, and, I’m having to remind myself that there are some good ones out there who at least seem willing to learn alongside you.

The other day a GP enquired why my dose was increased when TSH in range, to which I replied we simply don’t know where in that range my wellbeing is, hence it’s a range! This opened up a conversation and agreement on the limitations of TSH. It’s not like they don’t know. It just seems they need reminding!

[greygoose in reply to HealthStarDust]

They need rehabilitating GG!

Well, that's what I said in the first place!🤣🤣🤣

[HealthStarDust in reply to greygoose]

Sneaky 😌 And, until that happens, we need to be both patients and educators/rehabilitators and help them understand tests.

😇

[Algic in reply to greygoose]

You would be surprised prior to covid gps were being trained on how to manage and read results mine were

[Fruitandnutcase]

I had Graves’ disease back in 2012 and never ever had my T3 checked - even when the consultant put it on the list to be done. Anytime my thyroid has been tested recently it has only been TSH. So I do my own home fingerpick test with Medichecks and have everything recommended by TUK done annually.

Have signed Dr Taylor’s petition.

[HealthStarDust]

That’s a good system. I can see blood results but not which tests have been ordered. Unless you mean consultation notes which are not indicative of anything. Is it on a certain app or can you just see it on NHS app?

[DippyDame]

It's going to take a Damascene conversion!!

Have you read this?

thyroiduk.org/about-thyroid...

[Algic]

Actually it costs one pound yes a pound for the nhs to do a TSH t3 and T4 I did some research on this. So those who pay for private testing ask for a breakdown.