British Thyroid Foundation - ?: From their web... - Thyroid UK

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British Thyroid Foundation - ?

FancyPants54
FancyPants54

From their web site. What do we think of this? Having spent a lot of money on thyroid blood tests from home and recently the Dio2 test, I'm wondering if I should beat my head against a wall or something. The rest of this article was equally depressing. But it makes me doubt myself and my symptoms.

"Beware Thyroid Test Services by Post

There is a small, but increasing, industry in the UK where private laboratories will measure your thyroid tests through a finger-prick blood sample, or in your saliva or urine. Some even offer genetic tests by post, such as the deiodinase-2 gene (DIO2) variant. These companies will suggest that these tests are better because they are ʻnot available on the NHSʼ. However, these tests are not offered by the NHS because they are unnecessary, a waste of money and the results are frequently meaningless.

One example is reverse-T3 (rT3), which is an inactive degradation product of thyroxine. Firstly, rT3 is really difficult to accurately measure because it ʻlooksʼ so similar to thyroxine. With the exception of specialist university laboratories, there is a high chance that what is calculated as your rT3 measurement is actually a highly inaccurate random number. Of course, you will have no way of knowing. Secondly, there is no situation where knowing your rT3 can usefully guide your clinical management. If it was useful, NHS labs would be measuring it."

114 Replies
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I do agree that testing rT3 is useless, but disagree that if it were useful the NHS would test it! That is blatantly untrue because the NHS won't even test FT3, and you can't get more useful than that.

I'm a cynic, of course, but I believe the reason the BTF don't want you doing private tests is that NHS doctors can't interpret the results, apart from TSH - and even that they get wrong. These private tests are highlighting their ignorance.

Thanks greygoose, I wasn't bothered by the rT3. I just wobbled about the finger prick tests and their explanation (in the rest of the article) about the reference range etc. And the Dio2 test. I've had mine now and have the gene defect from 1 parent. I thought it might answer a lot of questions. But my GP looked at it and handed it back saying he didn't understand it.

It's so easy to doubt myself I find.

I don't suppose he does understand it - anymore than I would, and I bet I know more about thyroid than he does! And, anything they don't understand, they dismiss. But, that doesn't make the test faulty or invalid.

There's nothing wrong with finger-prick tests. Just because it's a private company that handles the financial side, doesn't mean the tests aren't reliable. From what I've heard, the blood analysis is done in NHS labs, so are no more and no less reliable than the tests your doctor orders.

But, we can't have a load of doctors admitting they know nothing about it, can we! So, we have to discourage people from doing these tests. Simple emotional blackmail. Convincing the patient he's wrong because he has to be wrong because he's just the patient, not the doctor. Preserving the status quo. Etc. etc. etc. Don't fall for it.

I'd not come across the British Thyroid Foundation before. I've not really seen it mentioned here either.

Thanks for your comments. I will hold my nerve.

No, I've never heard of them, either. Or I have and then forgotten them. But, to get an idea of how much they know about thyroid, have a look at their Thyroid and Diet Factsheet:

btf-thyroid.org/thyroid-and...

'Nough said.

Ha! Oh yes! That's a pile of crap isn't it!

My particular beef "choose unsaturated oils and spreads, and eat them in small amounts". Anyone who advocates "spreads" over butter is in the bin as far as I'm concerned.

And did you notice that they say "have some dairy or dairy alternatives (such as soya drinks)" at the top and then have a section towards the bottom telling you not to eat soya!

OK. I'll take this site with a pinch of salt and half a pound of butter then.

Yes, I noticed all that. lol Agreed, spreads are evil! Best taken with a large pinch of salt!

Bob00752
Bob00752
in reply to greygoose

Re that diet sheet Greygoose. Basing meals around starchy foods such as potatoes and pasta appears to be advocating a high carbohydrate diet. Follow this and maybe I’ll meet followers of this diet in the HealthUnlocked diabetes subgroup!

I was doing a factfinding interview yesterday with a dietician from Oviva, who are being rolled out as a distance education facility for type 2 diabetics across parts of London and they commented that low thyroid and type 2 diabetes together were more common than people think. The trouble is GPs are taught to treat one condition at a time and may well treat one to the detriment if the other.

Incidentally they have an app where you take a photograph of your food and it tells you whether you are on track or not. I asked how it worked as that seemed a big jump In AI. The answer was that the dietician gets sent the photos and they comment (eg have you tried 3 potatoes instead of 5 to continue the carbohydrate mix!). We all had a good laugh at my technological ignorance!! They liked Mondays reviewing all the different Sunday lunches - it would make me hungry so glad it isn’t me....

humanbean
humanbean
in reply to Bob00752

That is the weirdest link between technology and food I have ever heard of. It kinda feels like having an app to help with clothing orders and sending the requests to someone with a loom.

Bob00752
Bob00752
in reply to humanbean

They only do it for a week or two or of someone later runs into dietary problems. People are going to learn more by comments on their own food than on someone else’s. A bit like a Turing Test - can you tell from the information you get back whether you are conversing with a computer or a human? The pictures and human answers could be fed into an AI learning system to see if it can surpass human dieticians.

They have tried this with some Medical scans for cancer. One early attempt had to start again after a ruler was in some pictures and not in others for scale. The computer was using the ruler to decide whether someone had cancer or not... in that case we clearly know better!

I think the BTF is the patient arm of the British Thyroid Association (BTA). The BTA is the endo/doctor organisation. The two organisations refer to each other as partners.

The BTF website : btf-thyroid.org/

The BTA website : british-thyroid-association...

I vaguely remember looking into the BTA and the BTF a few years ago. I'm pretty sure that one member of staff of the BTA shared an address with the BTF at the time, or possibly this person worked for both organisations.

I've just looked again, but the BTA doesn't have an address which is available on the internet any more (at least not that I can find). I've also looked them up on the Companies House website and on the website of the Charities Commission. The BTA doesn't seem to exist other than as a website.

The BTF can be found in the Charities Commission database as a registered charity :

apps.charitycommission.gov....

humanbean
humanbean
in reply to humanbean

I just found the contact details for the BTA. They still use an address c/o the BTF :

british-thyroid-association...

Wow, you are a sleuth! You should be a private detective.

Thanks. I'll try that in my next life. :D

linda96
linda96
in reply to humanbean

They are a registered charity in Scotland only. I checked them out too a couple of years ago. Check the Scottish charity commission. They therefore do not have charity status in England or Wales Or NI. That’s my reading of it.

humanbean
humanbean
in reply to linda96

Oh wow! I didn't realise there were different Charity Commissions, and it wouldn't have occurred to me to look in Scotland.

You're a better sleuth than me!

linda96
linda96
in reply to humanbean

I was determined to find out about them. I do not however understand why they do not have charity status in England, considering they are based here. Possibly tax reasons? I did want to know what they are hiding. If you find out, please let me know.

Redlester
Redlester
in reply to greygoose

A bit like the government in the early days of the Covid crisis telling us not to use face masks and then now, all of a sudden, they are compulsory - not quite the same thing I know but similar

Thyroid17
Thyroid17
in reply to greygoose

I can not understand how Thyroid finger prick tests get such bad press when major hospitals check patient's glucose levels by this method on a daily basis for diabetes.

greygoose
greygoose
in reply to Thyroid17

I don't know for certain, but I suspect it's because doctors don't like you doing your own tests. They don't even like you having the results of the tests they do. They dislike anything that is likely to show up their inadequacies, and if patients start doing their own tests, and understanding the results, that's exactly what is going to happen.

TSH110
TSH110
in reply to FancyPants54

Why are we paying them 100 grand a year then? It’s their job to understand it. If we can they can!

Yoll
Yoll
in reply to TSH110

they are generalists! they know a LITTLE about a lot of things

TSH110
TSH110
in reply to Yoll

Given it is a common disorder I feel they should know more than just a little about it- it’s hardly a one in a million problem.

AlmaFo
AlmaFo
in reply to FancyPants54

Do you know that you have a great chance to make a complete genetic test by MTHFR company based in UK, which have doctors who helps you with analyzing the results?! A lot of Germans are doing their testing there, because it’s important to know about other SNPs as MTHFR, COMT etc.

Lourid
Lourid
in reply to FancyPants54

I’ve just had the same result for D102 through a private test. I thought it might help me to finally argue my case with my GP, since I’ve been self medicating with T3 for a while now. Looks like it’s not going to change a thing :(

FancyPants54
FancyPants54
in reply to Lourid

I will depend on your GP. Take the full printout and make sure s/he takes it from you and looks at it. Also, the test name is Dio2. 3 letters and 1 number. We know what you mean but if you search for help with it and use the wrong name you won't find what you are looking for.

Also, you now know why Levo alone didn't work. Are you self-medicating T3 with prescribed Levo? How much T3 v Levo are you using? I'm just interested, not looking to copy.

Lourid
Lourid
in reply to FancyPants54

Initially I was on a dose of 125mcg levo. I’ve tried a few combinations trying to keep the T4 in use, but I feel best on just one 20mcg dose of T3 alone in the morning. I would probably feel better on a touch more but the problem is trying to get a good supply of T3 ( usually from other countries) all the time.

Don't doubt yourself these private blood tests help us understand what our sometimes idiot GPs don't understand! Which leads to us be able to look after ourselves better! I am lucky in that I have persuaded my GPs to test for T3 (normally they only do TSH and T4) but my daughter's only do TSH which told them only that she needed anti depressants whereas the urine test revealed her T3 round about zero! Guess what - taking NDT has made anti depressants unnecessary!

The NHS labs would not even test my T4 or T3 after I had been admitted to hospital with a thyroid storm. They just tested my TSH which means nothing and doesn't give a full picture. I no longer ask them for any blood tests and do my own private tests. I have read that website and some of it is helpful and some of it is not imho.

Because I suffered a cynical obstreperous endocrinologist who dismissed everything I presented and accused me of over testing I started to test even more..... I took finger prick tests within minutes of all my nhs thyroid blood tests and compared the results. I also compared private venous test samples as well as finger prick. At the time the nhs were also testing my ft3 so I had good comparisons of all three vital indicators tested in various pathways - the endocrinologist had to agree the private tests and the finger prick samples were close enough to the nhs hospital lab tests as to be indistinguishable. So now I do not bother with the nhs tests which are too difficult to get, always at the wrong time for consistent interpretations over a long period and subject to their ridiculous reluctance to include ft3. Notwithstanding all that and the BTF guff about the limitations of these private tests, where’s their actual evidence the finger prick tests are rubbish? And, if these private testing services were found to be misleading or inaccurate or mis-selling these tests in some way the fall out would be commercially significant, whereas the nhs can get get away with second rate service and decision making because as mere tax payers and not actual direct paying customers it’s much more difficult to be heard or taken seriously. The BTF are grinding some axe or other. Who are the BTF?

Yea, isnt it amazing when you do the private bloods for Thyriod function and Vitamins and adjust your meds n supplements accordingly, your levels improve and after a while you start to feel sooo much better.

Nahhhh just in our heads,cough cough......

😉🤗

I would love for someone to investigate who they are. I can’t imagine as a profession endocrinologists want this sort of misleading crap on their website or maybe I’m not cynical enough. Recommending ‘base meals on higher fibre starchy foods like potatoes, bread, rice, pasta ....choose unsaturated oils and spreads,’. Unbelievable doctors are telling patients this still even though we know for sure it’s the recipe for ILL health.

Ohh dear. If anyone is up for investigating them I’d be delighted. Is there a health journalist who would be interested in covering this?

"Who are the BTF ?" I've forgotten the details of all the dodgy sounding connections between BTF and BTA , but Humanbean (above) is on the right track. The deeper you dig , the nastier the smell. It looks rather like the professional body is using the too closely linked patient body to maintain the status quo.

Cant remember where i read all this now , but having come to that conclusion from having a close look at who goes to who's meetings , and who used the same address as who, i now don't give anything written by either of them any credibility.... which is how i ended up here.

Mugs19
Mugs19
in reply to tattybogle

I think it was Malcolm Kendrick who exposed the connections. It used to be on the tpauk site. Sorry I’ve not time to locate it at the mo.

biased old BTF. always in denial..

Well I had butterflies in my tummy reading that!

I take a little of what they're saying about RT3 it's normally always stress that causes it - so I rarely test it without managing stress first.

The rest of it is medical dogma. If we stuck with the NHS standard of testing TSH we will see yet more people suffering needlessly.

Stick to what you know and what is working for you. You absolutely need to know how much T4 and active T3 is in your blood.

BTF works closely with Doctors - so take what you like from them and leave the rest xx

The fact that you say they work closely with doctors is worrying in itself. We shouldn't have doctors fighting us.

My GP said "your blood results are all in range, that's what I work to, it's not your thyroid."

I said "then what is it?"

He said "I don't know."

End of story. Next patient.

7 years of being fobbed off has left me rather annoyed at this attitude. If doctors take notice of this BTF site they will learn nothing of use to us.

To be honest, I was concerned about the validity of at home testing. So I do an at home finger prick test one hour before having a ‘proper’ blood test in a private hospital. Both tests measured my ft3 and Ft4. Results? Exactly the same. So there you go - the finger prick test for thyroid is definitely valid and accurate.

That was my rather expensive experiment that hopefully benefit you all as well as me.

😊

Thank you! Great to hear. Having just done my finger prick one this morning!

Excellent. And you are not the only one here who has done this. Talk about "taking one for the team" as my friend says. Thank you.

Kimkat
Kimkat
in reply to Suzanneharb

Which testing company did you use?

Suzanneharb
Suzanneharb
in reply to Kimkat

Medichecks

Kimkat
Kimkat
in reply to Suzanneharb

Thank you I’ve just used them for my vitamin D test 🙂

SeasideSusie
SeasideSusieAdministrator
in reply to Kimkat

Kimkat

I’ve just used them for my vitamin D test

It's cheaper with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

£29 and it's a blood spot test rather than fill a vial with blood. I've used them for years, discovered severe deficiency now use them twice a year to monitor level.

Kimkat
Kimkat
in reply to SeasideSusie

Thank you, yes in fact I used the nhs one but I was looking at medicheck for my full bloods.

In Suffolk they still test FT4 and FT4 as standard with thyroid problems so can't be that meaningless.

Lucky you. Must be the only ones that do in UK then. All we get is TSH and if normal nothing else!

JaneCx

I have heard my nutritionist say that for some tests the finger prick isn't accurate enough. But I don't know enough about it to say any more than that.

The difference between private and NHS is so stark though. I don't yet know my diagnosis but the only thing my GP would test was TSH, followed up by one of the antibody tests. She didn't even know there was more.

Then I access an endocrinologist through my employer's private healthcare and he has done an absolute gammot of tests, which I don't yet have the results for. What disturbs me is that this is an NHS doctor too, as most of them are. And they can't always access exactly the same tests for NHS patients.

Interestingly this same endocrinologist told me to use the British Thyroid Association for information when I told him I'd been researching on Thyroid UK. He said that was the official place for information :)

HI FancyPants54

Please be aware that the British Thyroid Foundation (supposedly a patient support group) is very closely allied to the British Thyroid Association (the private group of Thyroid doctors). Many of the leaders of the BTA are in important positions in the British Thyroid Foundation. Cross reference the officers of the BTA with the officers of the BTF.

A lot of the BTF medical advice is written by BTA doctors.

Until recent times with the T3 scandal, the BTA had been very conservative with its methods and advice which in my view was harming patients. They are very reluctant to consider any alternatives to the TSH only or TSH +T4 testing routine they advocate.

THE BTF fund research by BTA endocrinologists.

Greygoose offers good advice. in my view rT3 on its own will not offer much help but as raft of thyroid hormones measurements can help offer a clearer picture of your body's condition. However, it seems to me that the BTA and therefore the BTF will not currently support any other evidence.

In a recent Medical Practitioners Tribunal Service case, the MPTS were persuaded by BTA endos that the DI02 gene assay was bad practice. The research was produced as evidence, but the final line was quoted which read some thing on the lines of

"even though our research shows that a faulty gene expression can lead to low T3, current practice should continue until more research provides more evidence." The MPTS fell for this and ignored the research. Researchers often put such riders at the end of their papers!!

the MPTS judgement is full of errors of law and logic that, in my view, will be easily appealed if the doctor wishes to go through that particular mill. Most doctors don't want to go through the experience that Dr Sarah Myhill did. And she won all her cases.

So at this point in time it will be a battle for patients to get doctors to accept this evidence but we patients need to push and push and push until it is accepted. My own view is that DI02 test is a good test but it needs to be interpreted with all the other thyroid tests and the clinical presentation.

Very interesting points, holyshedballs. Do you have a link to the research that was used to discredit the DIO2 angle during the MPTS case?

It wasn't other research it was a line in the original research that was pointed out by the GMC Counsel.

Here is a link to the judgement. Its heavy going because they had a really good go at him.

They even said that we must rely on guidance because its written by experts. PFT!!

mpts-uk.org/hearings-and-de...

If you can wade through the lay out it is very interesting reading - well for me anyway. It also made my blood boil. I cant believe the panel came to the conclusions they did. I don't think the judgement would survive judicial scrutiny. When Dr MYhill and Dr Skinner took the their cases to the High Court the GMC (as was then) caved in to them. They did not want their poor work exposed to judicial scrutiny.

Thank you. I've bookmarked the link for when I'm feeling stronger!

gmc-uk.org/ethical-guidance...

para 16 (b)

In providing clinical care you must...provide effective treatments based on the best available evidence

BTF just toe the party line that everything should be based on TSH level and things like FT3 are irrelevant. I have no time for them. They're doing us no favours at all.

I have only ever done finger prick blood tests, all of which are accepted by my GP. They are consistent and very much worthwhile. I've never tested rT3 though, haven't seen the point of it. I got DIO1 and DIO2 via a whole genome sequencing via 23andMe some years ago so haven't had to pay for a separate test.

In addition, private labs have t o be accredited by the United Kingdom Accreditation Service (UKAS) for the tests they carry out.

If a private lab tests rT3 it should be to the same standard as NHS labs.

So to say that "results are frequently meaningless" and "there is a high chance that what is calculated as your rT3 measurement is actually a highly inaccurate random number" is misleading at best.

According to the General Medical Council, a doctor has to look at any evidence presented to him/her. The NHS does not tell doctors to only look at NHS tests and to ignore private tests. There is is even a (old) protocol for mixing private and NHS treatments and tests.

gov.uk/government/uploads/s...

I've had a doctor tell me this and I reminded him of the above. He was still very iffy about my private TSH T4 and T3 tests.

According to the General Medical Council, a doctor has to look at any evidence presented to him/her. The NHS does not tell doctors to only look at NHS tests and to ignore private tests. There is is even a (old) protocol for mixing private and NHS treatments and tests.

This is really valuable information. Would you mind doing a short post for the forum just on this point? Doctors will frequently tell patients they don't have to take account of private testing and private consultants' reports.

It's happened to me on many occasions. Several years ago, I tried to hand the results of very important mitochondrial function and translocator protein testing to a GP, along with Dr Myhill's accompanying report. They accepted only a small part of it for the file, and warned me, "No-one here will read this."

Makes me feel like they don't care about how patients lives are ruined by these cavalier attitudes.

FancyPants54 , please can you add the link to where you found this info from the BTF?

Hey there FancyPants

When diagnosed with Graves in 2003 I was given 2 leaflets from the hospital -

The Red paper one from the British Thyroid Foundation and in black writing they tell me how RAI is a safe treatment and that it's nothing to worry about and how it cures my illness.

It wasn't fit for purpose then, but sadly I only found out about it all some 8 years after ingesting RAI with the NHS acting like the 3 wise monkeys.

In February 2020 they had an Information Day regarding the new Nice Guidelines which was/is on the website, if you want to get more upset, you might like to watch and listen.

Link for the Information Day :

btf-thyroid.org/thyroid-gui...

They are the only way to get FT3 tested for some, though! I got my FT3 tested for the first time ever when I moved to Australia where it’s part of the standard thyroid panel. So 11 years prior not once have I had it checked here in the UK.

FancyPants54
FancyPants54
in reply to AnnaSo

It's shocking. Are the British Medical Council saying the Australian doctors are doing it wrong? They would never dare do that face to face with them. They just do it to patients who are nervous of them.

AnnaSo
AnnaSo
in reply to FancyPants54

Exactly... lucky enough these days we have internet and places like this forum!

Here is the link to the page I quoted from. I never expected this post to be so interesting to people.

TaraJR here it is, part way down the page. The whole page is depressing:

btf-thyroid.org/myths-and-m...

I just want to say I absolutely LOVE this site. I am learning something everyday.

After all the years I’ve been diagnosed with Hypothyroidism I actually feel that I am getting some decent, credible information at last.

I am waiting for the results of a private finger prick test that I’ve just done. I will need to come back here with these results for your opinions.

Many Thanks 😊🙏🏻😊

It’s quite alarming the amount of mis-information out there.

I submitted a resume to BTF under Patient Stories which was never published. I always suspected it was because I was critical of the 12 mistakes made in my treatment that left me feeling worse not better. I did give them a happy ending - long term low dose Band R which they don't seem to support. Too much work for endos perhaps ?

humanbean
humanbean
in reply to asiatic

I've never heard of Band R. Can you explain it to us?

asiatic
asiatic
in reply to humanbean

Block and Replace used in Graves' Disease. It crops up quite a lot on this forum. Thyroid blocked with anti thyroid drug usually Carbimazole and T4 replaced with levothyroxine. It is useful for people like me who still have high antibodies but tend to go hypo on Carbimazole alone. It works well and gives your thyroid a rest but I suspect it is not used more often because it can take a lot of monitoring and adjusting to find the correct dose and some endos are not happy to keep patients on Carbimazole long term citing bone and heart problems in spite of evidence to the contrary.

humanbean
humanbean
in reply to asiatic

Oh! That missing space (Band R instead of B and R) confused me totally. :D

I know what Block and Replace is. :)

asiatic
asiatic
in reply to humanbean

Oops sorry hb

Pippah45
Pippah45
in reply to asiatic

I am glad you explained it - I didn't know that before :) Thanks!

Hillwoman
Hillwoman
in reply to asiatic

I've no experience of Graves' myself, but I do notice more and more reports of patients feeling bullied into RAI or surgery, just to get them off the books. They subsequently become hypo and sometimes iller than they were prior to 'curative' treatment.

Well the whole thought process is a bit bonkers as you're looking at an auto immune disease that just happens to attack the thyroid - and it's because the thyroid is such a major gland that the symptoms experienced can be seen by some people as life threatening.

The thyroid is the victim in all this - not the cause - the cause being the immune system mistakenly attacking the body, and more especially attacking the thyroid :

Even Prof Toft stated that he was increasing reluctant to refer his Graves patients for either RAI or a thyroidectomy irrespective of age or number of recurrences of hyperactivity.

Thyroid Hormone Replacement - A Counterblast to Guidelines : AD Toft :

December 2017 : Journal of the Royal College of Physicians of Edinburgh:

It's on here somewhere, third page a third of the way down on the left hand side.

In fact I think this whole article pretty sums up where we were then and it's not getting any better ( but I'll not be going to the doctor as my health is at stake ) !!

Regarding test services by post and finger prick testing...

In respect of test services, I have thought for ages that it would be helpful if the private companies could be completely open about which labs do the actual testing and then could mention it on any results.

As for finger-prick testing, the only thing I'm aware of that could make results less reliable is if people squeeze their fingers and damage the blood as it drips out. But in that case I think the labs can tell that has happened and they don't do the test at all.

SeasideSusie
SeasideSusieAdministrator
in reply to humanbean

I have thought for ages that it would be helpful if the private companies could be completely open about which labs do the actual testing and then could mention it on any results.

They do HB!

My latest Medichecks Thyroid Monitoring test done in April has the following information at the top:

Observation date:

PID: (that's your patient identity number with Medichecks)

Laboratory: County Pathology Ltd

That's the first time they've actually put the actual laboratory name on the results sheet though. Of course, the return envelope tells you which lab it's going to.

As for Blue Horizon, back in 2015/16 (as far back as I go) it used to say

County Pathology Ltd

Address and contact details

then

Blue Horizon Medicals.

Since then if County Pathology does the test the lab information is left off but the format the results are in is the same. Again, the return envelope shows which lab.

They also use The Doctor's Laboratory and their report sheet is in a different format but includes

"Report Produced by: The Doctors Laboratory"

and at the bottom says:

"Authorised by:Clinical Pathology, TDL

End of report Produced by The Doctors Laboratory"

I do a BH Plus 11 once a year, my last TDL one was in early 2018 then in November 2018 and December 2019 it was County Pathology (different format for reporting and lab noted from envelope).

Thank you for that info. I'm obviously not very observant. :D

Then perhaps what I want is a statement on results that says the laboratory used is accredited by the NHS or some other equivalent information that would be recognised by a GP.

SeasideSusie
SeasideSusieAdministrator
in reply to humanbean

Yes, information about accreditation would be helpful in getting doctors to accept the results.

I found this yesterday on a website to do with our local hospital's pathology department:

UK Pathology services are accredited by Clinical Pathology Accreditation(UK) Ltd (CPA).CPA aim to work in partnership with provider organisations to maintain the standards necessary for accreditation. The scheme involves an external audit of the ability to provide a service to quality standards. Inspection teams visit in a four yearly cycle and comprise a professional regional assessor and two peer assessors, usually one scientist and one clinician, both of whom are working pathologists. The inspection includes assessment of the Quality Management system, laboratory infrastructure, test accuracy and timeliness, staff performance, and user satisfaction. It seeks evidence of quality from CPA accredited External Quality Assurance (EQA) Schemes which include the UK National External Quality Assessment Scheme (UKNEQAS) and Wales External Quality Assessment Scheme (WEQAS). CPA has formed a partnership with the United Kingdom Accreditation Service (UKAS). UKAS is a national accreditation body recognised by government to assess against internationally agreed standards, laboratories, sample testing, and inspection and calibration services. It's remit covers industry and many other public sector organisations.

On Medichecks website they state:

medichecks.com/pages/our-la...

Our partner laboratories are fully accredited and are committed to the highest clinical standards by internal quality control (IQC) and external quality assurance through national schemes such as UK NEQAS. They have been inspected by the United Kingdom Accreditation Service (UKAS) and have been accredited to ISO 15189. Furthermore, they participate in regular quality audits, clinical governance and accreditation inspections.

The Doctor's Laboratory (TDL) is located in central London and is the largest independent provider of clinical laboratory diagnostic services in the UK. It has a proven reputation for efficient and safe specimen handling worldwide. See TDL's UKAS accreditation ukas.com/wp-content/uploads...

County Pathology is located in Guildford in Surrey and is a private pathology laboratory providing blood testing services to a range of clients including clinicians, companies and private hospitals. County Pathology is part of the Eurofins group, an international life sciences group specialising in analytical and diagnostic testing. See County Pathology's UKAS accreditation ukas.com/wp-content/uploads...

So it would seem that the same accreditation services are being used.

Blue Horizon doesn't give so much information, unfortunately:

bluehorizonbloodtests.co.uk...

Blue Horizon take pride in ensuring the quality of your test results is of a high standard. Our partner laboratories also ensure to operate at the highest clinical standards possible.

The standard of test results is critical, and our partner laboratories function to the highest clinical and administrative criteria.

Laboratory tests and results are subject to stringent external and internal quality control processes and are assessed to ensure the highest levels of precision and performance.

Our partner labs are fully licensed and registered with the CQC, with the exception of food intolerance tests.

Our partner labs are all based in and around London and includes the largest independent supplier of medical laboratory diagnostic services from the united kingdom. It has a proven reputation for safe and effective specimen handling. It provides blood testing solutions to a wide range of clients such as clinicians, businesses, private hospitals.

We believe that it's significant to develop close relationships with the labs we work with to ensure smooth service to our customers.

Our clinical staff visits our laboratories to make sure that the highest testing and reporting standards are maintained.

We commit to customer support, and we're eager to continue developing strong working relationships providing support and help to our patients at Blue Horizon Medicals.

It wouldn't be hard to add an extra line to the results report stating the accreditation service.

Thanks for the info, Susie. :)

Isn't it sad that we even have to have this discussion? If the doctors were up on the research and better educated to start with, which for decades I thought they were for sure, and the whole health care system weren't so bottom line oriented and really interested in helping people to be their best this would be a non-issue.

Well you have just summed this whole situation up perfectly.

Yoll
Yoll
in reply to buddy99

I was told "we don't look for the cause we treat the symptoms!" great for big Pharma, not so good for us! What a stupid comment

FancyPants54
FancyPants54
in reply to Yoll

That's a terrible thing to say. But sadly it's so true. I am stuck in atrial fibrillation now. Nobody gives a damn why and what could be done about it. I've suffered bouts of it since I was late 40's. I was fit and active and slim then. I used to get it about once every 10 months. Then suddenly in February 2019 (whilst I was experimenting with T3 and Levo) it came again and stuck. I ended up in A&E because my pulse was 130 and I felt awful like that. All anyone at the hospital said was "Oooooh! T3. You must stop that. It causes Afib." But I'd had Afib for years and not been on T3 for most of them, plus been on T3 only for some time and then off again and tried Levo. But I dutifully reduced my piddling T3 amount and then stopped it. It made no difference to the Afib. I have to take a beta blocker to bring the HR down a bit (still stuck in the high 80's or 90's). The difference is I'm depressed, tired and physically exhausted all the time. I have no stamina. Can't even go for much of a walk. I pour with sweat, just from the effort of getting washed and dressed.

And my GP is prepared to let me live like this. My cardiologist has no interest in looking for causes or anything. It's shocking. I've done so much to help myself. I will just keep going. And I will be going back onto T3 shortly now I know I have the Dio2 gene defect.

Have you ever tried potassium in any form to see if it will reduce your A-Fib problem? I'm making no promises that it will work though!

As a very simple test you could try a quarter teaspoon of either Lo-Salt or Cream of Tartar, both of which are normally available in supermarkets. They need to be dissolved in water.

Tesco's version of Lo-Salt contains roughly 50/50 sodium chloride (salt) and potassium chloride :

tesco.com/groceries/en-GB/p...

Another easily obtained possibility is Cream of Tartar which is potassium bitartrate.

This article on potassium (and the comments) is worth reading :

drmalcolmkendrick.org/2013/...

Personally, I use potassium bicarbonate which is usually easy to get hold of but has become difficult to get since the start of Covid-19 and lockdown. I don't know why. I use a quarter teaspoon of salt and quarter teaspoon of potassium bicarbonate in water in the mornings and I think it makes me wake up a bit.

Adrenal cocktails are another possibility - they contain sodium, potassium and vitamin C :

therootcauseprotocol.com/fa...

stopthethyroidmadness.com/a...

My Afib is inherited really. My Dad had it for decades, his sister, his brother, my cousin... My potassium is likely higher because I'm on a water tablet that raises it so I'm not supposed to eat bananas and watermelon etc. I do. If I ever get a problem I'll just stop the tablet, I'm pretty sure the fluid if a thyroid symptom.

I take magnesium taurate, which is good for heart. My Afib mostly doesn't bother me. Mostly I can't tell it's there, but every day, at some point it will raise it's hand and remind me for a bit. I'm most annoyed that I let fear drive me to come off the T3. The T3 was helping. I was able to walk further and better for the first time in ages. I should have had the courage of my convictions and increased the dose not stopped it. Because having dropped my Levo by 25mcg the 12.6mcg of T3 meant both my T3 and T4 had dropped from the last test! These doctors have a lot to answer for. Cardiologist would not consider it necessary. He's a bit in the dark ages I think. Hearts need T3!

Not all diuretics raise potassium. There are various types of these drugs, with differing modes of action. I take one that reduces potassium - without actually bringing down my rather high sodium - but it does help keep my horrendous fluid retention at a more manageable level.

I'm prone to low K anyway, regardless of the diuretic, so I take quite a large amount daily of potassium gluconate in powder form, otherwise I feel really ill, with similar symptoms to the ones you describe. The gluconate is fast-acting, so if you were to take an initial dose of one quarter teaspoon in water, you would soon know whether or not that was enough for you. Obviously, I wouldn't recommend this to everyone, because too much K brings its own problems.

I find that magnesium in large amounts is also essential to keep adverse effects at bay - for me, anyway. At the moment, I'm taking the malate form.

Good luck with getting back on to T3.

This diuretic does evidently, but also has properties that are good for the heart, hence me being prescribed it.

Yes, I realise that. My comment was intended to provide extra information for others who might read it. :-)

buddy99
buddy99
in reply to Yoll

Well, at least, whoever said that to you was honest and right on the button. Most doctors will not admit to that. So on some level I'm actually applauding this person for saying as it is. Now you know with all certainty. :)

Yoll
Yoll
in reply to buddy99

Yes, he was Dutch, got fed up with the system and left!

buddy99
buddy99
in reply to Yoll

Had the same situation here. Fairly good doctor, easy to talk to, not arrogant at all. Went to the States. Actually I feel that our best doctors here in Canada go or are looking at going to the States. Not that I would want their system either. Our health care is "free", but, man, you get what you pay for.

This bit I like - ".drink plenty of fluids (at least 6 to 8 glasses a day)"

Does this include Vodka? 😉

It's fluid.

buddy99
buddy99
in reply to Jenny583

You might need it (or any other alcohol of your choosing) when dealing with doctors. It might make things more bearable. :D I don't recommend it, though. :D

Jenny583
Jenny583
in reply to buddy99

Lol! glue sniffing then?

buddy99
buddy99
in reply to Jenny583

Hahaha! That might also work. Or one could just go in on a cloud of cannabis. The options are endless. As always, find what works best for you. :D

Jenny583
Jenny583
in reply to buddy99

Cannabis would be my choice. Unfortunately I have NO options.

Please dm the supplier....

buddy99
buddy99
in reply to Jenny583

By the way glue sniffing can make you very happy. I'm a librarian and my colleague and I were fixing books (there were several chemicals involved). We still talk about it. We were laughing at everything. I'm just imagining being in a doctor's office high on glue (or Goo-Gone) killing myself laughing at everything s/he says. I would be ushered out of there faster than you can say straight jacket. :D :D :D

Jenny583
Jenny583
in reply to buddy99

Yes well, some would say Librarians should be taken away in a straight jacket anyway! Only kidding.

I've not tried glue sniffing, & it looks like I never will as the "ministry of love" have passed a motion to ban plastic bags...🙄 And you can't get Vodka now either lol.

buddy99
buddy99
in reply to Jenny583

Oh no, Jenny! Looks like everything fun has been taken from you............even the vodka. I guess you just have to live healthy. :)

Jenny583
Jenny583
in reply to buddy99

I am taking just T3 now, & trying to keep magnesium 6 hrs away. Getting there!

well, quite apart from anything else, the NHS sell finger prick thyroid tests by post!

Well that's typical! Really? They make this stuff up for thyroid patients. What type of tests do they sell?

TSH, FT3 & FT4

£29

amongst others

It s Monitor My Health, which is a not for profit NHS fundraising initiative

So it really is thyroid blood tests! Crazy. But thanks, that's a good price. I don't need anything fancy for my next test. I'll try this one.

i ve used them a few times. The only thing to bear in mind is that there are Dr notes on the result, which always assume undiagnosed and unmedicated. I just ignore them.

Well done all of you, can’t really get my head around it all and wish my husband was still alive! He was a science based endocrinologist doing thyroid research and would have knocked any medic into touch! Thankfully he lectured to medical students but it wasn’t a well attended lecture, students either listened and learnt or didn’t turn up. I was in a difference medical school but same issues. It was a subject students didn’t want to study I expect for various reasons Hopefully it’s in a better state now. I’ve been to clinical demonstrations but never come across a thyroid one, may be I should have offered to be a guinea pig!

I'm basing this on a very vague memory but I'm sure that I've read that endocrinology is considered to be both difficult and boring, and is also unpopular.

If it's difficult then we want the best medical students to study it, but instead we sometimes get the worst.

I think the other issue is that as thyroid sufferers are not often seen in a hospital situation then it isn’t often seen by many medics and medical students either. I do go to a hospital to be monitored but they haven’t a clue but I follow my lead rather than theres! My last appointment I read the letter that was sent to my GP-no issues copying me in the the letter is basically saying that they must try to get me TSH higher! I’m taking NDT which I source myself and they know this but they don’t know much else! Yes the last person I saw was on board and yes he was right that I do understand what I am taking and why so his time is better spent with people who don’t but yet I am expected to travel around 60 miles round trip to say I am fine and being told my results are good! The plus point is I get bloods done but I try to also use the day for something I want to do in the area. It’s a very early start though as I try to keep my bloods to around 7.30 am so I can be medicated before 8! But in all the years, must be around 40+ now I’ve only had a student in the room once! My. thyroid wasn’t mentioned-the only concern my VIT D was on the low side, so helpful that the student was made aware but the opportunity of telling him more was lost unless that was added after I left the room

I don't suppose it was sadly. Once you are out of the room the follow-up seems minimal. Quite often they seem to make mistakes about medication or treatment or results in the letters that they send to the GP.

I've only seen one endo on the NHS. Very nice. Very young. Even though my appointment was quite early everything was running late. He was late and the blood test wasn't done until after the appointment sometime around midday. I always do my bloods before 9am. And for some bizarre reason he insisted on me laying on the couch so that he could palpate my stomach. I have no idea why. Anyway, results all in range so everything normal in his eyes. End of that story. Me - sick as ever.

asiatic
asiatic
in reply to silverfox7

There was a student present at one of my appointments with an endo who was a diabetes specialist and knew little about thyroid issues. The blind leading the blind! I got so annoyed at what he was saying that my pulse rate went up. I found later he had entered this in my notes to conclude I had relapsed.

Plus point I always see an Endo but my results are always good thankfully so no follow up.

Regardless of my appointment time I always turn up around 7.30 when they start testing so at least my blood is taken at the right time. I can’t think why they take yours after you have seen the doctor. It only takes minutes to get the results and then fax or email through. Then he is up to date deciding if your dose needs tweaking or whatever. If it was t good-would he send you notice and tell you what he wants you to do? If so then that’s not too bad but otherwise it’s not really accurate. Hopefully you’re results should be where he would expect them but if something done wrong then he could be way off the mark and wouldn’t be aware of it

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