Thyroid test denied

[Isilune77]

Hi everyone,

I'm very confused right now. For the first time in fifteen years, I had a GP asking all sorts of irrelevant questions when I asked my thyroid to be tested and the Free T3 included.

In the end, according to them, the lab didn't test the FRee T3.

Obviously, this is due to the GP's input. The lab always did it when it was ordered by an understanding GP who wanted to help.

I've made a complaint about this and I'm changing surgery. There's no way I can stay with a surgery that isn't helping me monitor my thyroid.

Another doctor called me to repeat the same thing. He even pretended to look at my endocrinologist's letters and decided that my endocrinologist had suggested that I had to stop taking the natural desiccated, replacing what I had told him my endocrinologists had said.

My endocrinologist wrote to my GP about fifteen years ago to let them know that I needed the Free T3 to monitor my thyroid. She gave me the option to try synthetic T3 at the time but I declined. MY endocrinologist, like my GP at the time, understood very well that it was me the one who had to decide what treatment was best for me and how to proceed and no one else. I have to admit that I was lucky, my GP was exceptional, and I saw other endocrinologists after her and they only wasted my time.

I've been with this surgery only for a few months and I registered with them because I had no other choice - I won't get into that. I'm now registering with my other choice and I'm sure it'll be ok.

I've made a complaint about this, and I'm taking it to the Ombudsman. In the meantime, I'll have to wait to have to speak to my new GP at my new surgery to have my thyroid tested.

Any advice?

Thank you

Miriam

[SlowDragon Administrator]

Many labs will no longer test Ft3 (even if prescribed T3 on NHS)

In theory if TSH is below range lab should automatically test Ft4 and Ft3 …..but in reality it often doesn’t happen

Your GP could/should write note on Blood test …..saying patient is on medication containing T3, therefore please ensure test Ft4 and Ft3

But GP may not even know what NDT is or that it contains T3

Is your NDT prescribed by NHS?

[Isilune77 in reply to SlowDragon]

Hi Slow Dragon, the NHS can't prescribe NDT. All GPs I have encountered so far, including the last one under six months ago, asked for it and the lab did it. I don't know what they said but I'm sure they wanted to be helpful. This person was overtly unhelpful during our conversation and I'm pretty sure whatever she asked for wasn't the way she should have done it.

[hellybaybee in reply to Isilune77]

I think they can prescribe… the guidance says in exceptional circumstances but they can do it… most won’t and many of us have to medicate ourselves

[Isilune77 in reply to SlowDragon]

Do you know where I can have a blood test and have my Free T3 checked, privately without having to see a consultant? I'm pretty sure in my new surgery, the GP will do it, but I'm curious.

[SlowDragon Administrator in reply to Isilune77]

yes thousands of U.K. members test privately

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Split NDT as two doses day before test

Stop any vitamin supplements that contain biotin 5-7 days before test as biotin can falsely affect test results

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...

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

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

thyroiduk.org/testing/priva...

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...

10% off code here

thyroiduk.org/testing/priva...

[Isilune77]

That's awesome, thank you Slow Dragon. I was wondering if it'd be cheaper nowadays to get NDT from a private clinic over here in the UK or even in the US. Although, NDT from the US is significantly more expensive than the Asian one. But maybe some clinics have competent suppliers or different options? The thing is that when it comes to functional doctors because they work distance with patients all over the world, they don't necessarily need to be in your country. I bet there are brilliant specialists in the US who we can contact from here with very competent prices. Have you heard of any by any chance?

[Hidden in reply to Isilune77]

Even if there are functional US doctors working with patients outside the US (maybe someone here knows), you may not be able to buy NDT in the UK with a US prescription.

Also, as far as I know, NDT is expensive everywhere these days, and Armour is by far the most expensive brand. There are compunding pharmacies in the US, but they would then have to ship to the UK.

It seems healthcare is regulated on state level in the US, but I have read about doctors needing to see patients in person at least once even if online follow-up consultations are then possible for out-of-state patients.

I do not know if functional doctors in the US are cheaper than here. Hopefully, US members can tell us!

[Isilune77 in reply to Hidden]

I know of US functional doctors who work online and who ship their own prescriptions. The problem is that the ones I know are expensive.

[susanmhall62 in reply to Hidden]

I live in Pennsylvania, USA & see a doctor in Chicago, Illinois. He did advise that he was required to see me in person at least once a year and I do telemedicine as needed for additional visits. He prescribes NDT and orders labwork inc. FT3, FT4 and TSH as well as vitamins i.e. B12, D, Folate and iron labs.

He accepts Blue Cross Blue Shield health insurance. I take a flight from PA to Chicago once a year for a visit and it's working well.

[Hidden in reply to susanmhall62]

So I guess it would be much more expensive for someone from the UK without US health insurance…

[Isilune77]

Maybe it's worth asking here?

[DandyButch]

Hello Isilune77. I have experience of a similar situation. Cut a very long story short, my endocrinologist, who is prescribing liothyronine only for me, told me at my last appointment that as my TSH in now within limits, she could not increase my dosage. I asked about T3 test.

She said that whilst she had requested T3 to be tested, the fact that I had had it done at my GP surgery rather than the hospital, the GP probably would only do TSH.

Now, this hasn't just happened once, but twice!! Why are we not informed? As a patient I am not aware of all the various rules within the NHS. I thought that if an endocrinologist requested certain blood tests, it didn't matter where you had it done, indeed, the GP surgery never told me I should have them done at the hospital.

I give up!

[Isilune77 in reply to DandyButch]

Hi DandyButch, it sounds like wherever you are in the UK they follow these procedures. Here in Cornwall, I could never have the blood test done at the hospital. Very frustrating. I gather that if you are looking to try t3 it's because you are not well on your current treatment. Unfortunately, that's the way it is with an NHS endocrinologist. They are in the Stone Age. I've only found one once with a bit of insight into this matter. Really sad. I wish you all the best.

[RockyPath]

Doctors are regulated by state laws in the U.S.

Here on the West Coast, we have smart compassionate doctors (sometimes). During the peak of the pandemic, they were prescribing via video visit, but states with high bars to professional conduct will demand a new patient visit be in person when prescribing treatment. Pharmacies are governed by webs of federal regulations. Healthcare in the United States is a nightmare and very costly.

Functional medicine is scattered across a vast landscape, and subject to bureaucracies. Some are embedded in Corporate Health Systems (or University Health Systems) and you have to have a referral from your doctor to make an appointment.

I have a nutty endocrinologist (who is transfixed by TSH), but a really nice ENT doctor. My functional medicine guy is well-educated and open-minded, but professes ignorance of the thyroid. He won't discuss thyroid, but he smiles while saying this.

The grass on your side of the Pond, with your NHS, has always looked greener to me. I'm sorry to hear it's brown there, too.

Somebody here said that when taking T3 (including NDT), one judges by clinical (physical) signs, and not by blood tests. I'm finding this to be an interesting adventure in science. Too much will produce hypertensive crisis or micro tremors. Too little, well, you know how that cascades into every bodily function.

Good luck.

[Isilune77 in reply to RockyPath]

Not all functional doctors are specialised in the Thyroid. There are many specialisations. You need the one who specialised in the thyroid, not someone who says that he won't discuss the thyroid. Don't waste your money with this imbecile - excuse my French.

[serenfach]

Is your TSH below the normal range? If so, look at the print out of the blood test and it may have where your blood was tested and a phone number. This is for the GP, not us mortals, but mine have the number printed. I phoned and got a very nice woman who said that, yes, if TSH is below the range, they should test both T4 and T3, and she did not know why it was not done this time... I think she was so shocked by a patient phoning that it caught her off guard, but she knew more about the thyroid tests than the GP. We ended up swapping recipies for dumplings!

Anyway, check, but like most of us here, if you want a full thyroid panel, you have to go private. Good luck.

[Teddyandolive]

When my gp requests t3 be included in my thyroid blood test results the lab ignores the request when t4 is within reference range. Likewise t4 is only tested when tsh falls outside reference range. If tsh is within range, that’s all they’ll do.

[serenfach]

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.

Ask them why they are not following the guidelines and say you will report them.

[JoJoloveschocolate in reply to serenfach]

Hi, sorry to interrupt the thread, but I just wanted to ask - does this guideline apply to people when they are on treatment after a diagnosis of thyroid problems ….or is it just at the time of diagnosis when thyroid issues are suspected?

[Isilune77 in reply to JoJoloveschocolate]

Hi, either but I was diagnosed 15 years ago.

[serenfach]

1.4.4 Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.

1.6.8 Ensure that people can actively participate in decisions about their treatment by following the recommendations in the NICE guidelines on patient experience in adult NHS services and shared decision making.

How can we make decisions if we dont have the facts?