Thyroid UK
84,174 members99,155 posts

GP cautioned me about Thyroid UK credability

I presented some insights/research in letter form to my GP to aid further engagement & education about by my ongoing Thyca with view to seeking their clinical POV. As they all have limited experience & knowledge in dealing with Thyca. Content included info. about T3, letter from Dr Lindner, D102 gene testing, Interpretating TSH test result ranges etc.

Her response came with a frown and pointed out there are a lot of maverick info.& doctors so don't pay too much attention and referenced her POV that thyroid uk were less credibile than BTF.

Has anyone come across anything similar reactions?

I'll be following up with her in 2 weeks to review how to resolve some of my physical issues and forward treatment and check her thoughts on what I'd provided.

I don't find it easy to talk to GPs I always feel like I'm in revolving door, feeling embarrassed, I have little confidence them when they say this is out of their comfort zone so defer to experts i.e. Endo & Oncos.

No one educates you enough about life after TT & RAi treatments- side effects, changes to your metabolise, functions etc.

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oldestnewest

Yr doctor sounds like one of the three wise monkeys. Is she hear no evil or see no evil? She doesn't fit the role of speak no evil.

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Great comment I concur.

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Did your GP express an opinion as to why the BTF's treatment guidelines are out of step with the treatment guidelines of equally reputable endocrinology and thyroid organisations in countries with a well-respected health care system?

The mis-match of guidelines for some disease states (e.g., kidney comes to mind) is a substantial problem in some areas of clinical research particularly as large-scale trials tend to include multi-centre, multi-country set-ups.

No help to you, but that's my slanted, cherry-picked POV. :)

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BFT are supposedly "experts" (with background in the NHS) and the person in charge of TUK (CEO) is a ....thyroid patient. That's unforgivable! God forbid TUK could know better. To make things worse some of TUK Advisors are foreign doctors (Germans and Americans cannot be any wiser than the NHS-bred doctors, can they?), Dr Sarah Myhill who dares to work with CFS/ME patients and who was subjected to over 30 investigations regarding her "dodgy" practices, Dr John Midgley whose main shortcoming is that he completed his Ph.D in Physical Chemistry (University of Oxford) instead of endocrinology...and Dr Alyssa Burns-Hill, who isn't a medically qualified doctor but "only" an alternative health practitioner, ....which completely disqualifies her from having any views on thyroid treatment. I won't apologise for my sarcasm.

I wouldn't be able to see your GP - she sounds absolutely infuriating...

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Well thanks for the advert. After a long detailed journey from 2011, when our group was first put together, we've independently and I hope dispassionately researched thyroid function, its individuality in a subject, its relationship to body conversion of hormones T4 to T3, and the implications of losing thyroid activity. No preconceptions, except doubting the TSH paradigm from the outset as illogical. We simply stepped off into the unknown, not knowing our destination. In 2010 I was completely unaware of the dilemmas and problems in thyroid treatment - before that I was busy denouncing the terrible science which was trying to discredit the FT4 and FT3 tests, which had been going on for 30 years (mainly US and UK based). I can say that at my advanced age, it has been both a miracle and a privilege to have been able to form a group that has come so far in such a short time (practically speaking). TUK members will be pleased to know that we've just written a culminating review in which we, outright, produce the logic for a new paradigm in how to diagnose and treat patients with hypothyroidism, reducing TSH to its proper role in detecting the onset of thyroid failure, and removing it from a unique sole role in monitoring of treatment. Also we promote the combined use of all parameters to properly perform monitoring and elevate FT3 to a primary role in treatment control, as well as suggesting reasons why combined therapy is required for some patients (not in an arbitrary way, but from examination of a patient's biochemical makeup.) I think the article will be presented next week and I am curious to know what the response will be. I suspect, in the UK at least, the ostrich will remain deaf and blind, having determinedly decided to keep its collective head in the sand. Doesn't stop the sandstorm up above blowing his feathers off though. We've also commented among ourselves how the self-styled "gurus" or opinion formers so often deliberately ignore what we've written when making their own comments or writing their papers. Part of this is because they don't like the direction the ideas are coming from and partly because, when the time is ripe and things have to change, they want to gather the kudos of having found it out for themselves. Do not think that either in science or in medicine, dispassionate honesty and acknowledgement of intellectual priority is a routine response. Jealousy, hubris, defence of reputation and self-aggrandisment regardless of the truth of the matter are wellknown features of the disciplines.

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One can hardly can call it an advert, given that it mentiones only a tiny bit of your achievements ;) I couldn't restain my sarcasm about the arrogant GP. On the positive side: if TUK is known to GPs and some of them are getting defensive, it means that TUK is making waves ;) This negative opinion given by GP might be actually a very positive sign!

We are all immensely grateful for the work you are doing to improve the treatment of thyroid disorders. We need more scientists like you. Unfortunately people are too scared to stick their head out of the crowd and take the risk that their careers could get "decapitated" ;(

" TUK members will be pleased to know that we've just written a culminating review in which we, outright, produce the logic for a new paradigm in how to diagnose and treat patients with hypothyroidism" - Can I make a suggestion, as a lay person in biochemistry, please? There will be people among the representatives of the stakeholders for the NICE Thyroid Disease guidelines, who may have very little knowledge of biochemistry, or thyroid disease in general e.g. Ministry of Defence is registered as a stakeholder: nice.org.uk/guidance/gid-ng... It's very hard to convey an expert knowedge in a plain language but people start to zone out if it's to complex for them to follow ;( I hope you don't mind me saying that!

ITT has also recently registered as a stakeholed for NICE guidelines on thyroid disorders.

Kitti1 UrsaP Pamela0106

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My indefatigable colleague Prof Hoermann proposes that after this review aimed at endocrinologists and doctors, we write another in simple language on the lines of "if this, then interpret it as that, and treat accordingly by the other". i.e. a Janet & John exercise.

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It's a brilliant idea. I have a feeling that many GPs would find a simplistic review helpful, although they may never admit it ;) I don't mean to question their intelligence or knowledge but they have 10mins per one patient. They need (and like) simple guidelines on how to proceed. THANK YOU!!!

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HI I am wondering if you can provide me with any advice, I was diagnoised with under active thyroid about a year ago iam on 100mgs of levothroxcyn I have been ill for years catch every viral infection going I catch I am constant agony with neck bones and joints.

I had taken cold within two days I was in hospital with pneumonia four weeks later still ill I had been back and forth to GP for five years before I was diagnoised they where just treating all the symtoms before they said last blood test two months ago was fine.

I don't understand why I am still ill if I exert myself in the slightest I get weird feeling in my legs and feel like iam going to pass out I always have low heart rate but last week at GP had high blood pressure.

I was a very active person before all this, do not know if this is linked to the birth of my last child I was 35 I had her seven weeks early.

stopped breast feeding her when she was 18 months as I had severe chest and ear infection and have been ill ever since I spend more time unwell rather than well can you give any advice as to what I should be asking GP this is getting me really down.

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Feckedoff would be best to start a new post where you'll likely to receive more replies, it becomes confusing when in the middle of an existing thread.

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Thanks I am bit of a techno phobic get my kids to help thanks

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Did you manage those tests suggested to you in your post of seven months ago ? Have another read 😊😊

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So why is Thyroid UK detailed on the NHS Choices Website for further information about the Thyroid .... ?? With a non-stop feed of posts :-)

nhs.uk/conditions/Thyroid-u...

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As a patient struggling to find answers to lots of new issues since TT&RAI it's a struggle to get appt. with NHS endos directly to talk things thru in absence of GPS who to be fair to them can't be experts in everything all I'm trying to do is get them engaged so they can advocate some of my challenges back to Endos etcSecuring trustworthy insights and facts is a minefield - organisations such as BTF, Thy Uk, butterfly etc provide a worthy service but they all probably have to do a more work to ensure trust and credability is transfrerred across the spectrum of practioners - GPs to specialist consultants.

I'm just grateful that platforms like this are around to contribute to patient conversations, experiences and clinical insights. At least we can challenge back irrespective of what answers we get back.

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Am going it alone in Crete so do not have to concern myself with the thinking of others. You can click onto my name above if you have two minutes to read my journey 😊 I read and learn from others who know more than me and at 71 am enjoying life to the full. We are all so individual and need treatment protocols to match .....

Was your reply above for me ? - not sure 😊

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Alone in France too. It's good to know that people on this site can heal their selves.

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With so much information around we just have to read and read until something resonates don't we ? I always feel we moved here for a reason - could not understand it at the time - just thought it was about creating a Pension Pot with our Guest House. Now know it was much much more !

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Reply is/was to all. :)

Like I said I'm pleased these forums exist

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She's just scared you're going to find out how ignorant she is.

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Just to help your credibility, it isn't D102 gene but DIO2 (that is, three letters and a number not a letter and three numbers). Named from "deiodinase" - the enzyme(s) that convert thyroid hormones.

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I am new to all this

I am 66 and have been so called been treated for an under active thyroid for 36 yrs

you can believe this or not but after 10 months on levothyroxine at 50mg I was no better so I kept going back, by the end of 18 months the g/p had raised it to 300mg, after a month of it the only thing it got moving was my stomach so I began to reduce it my self

I am now on 125mg

This year I have been twice because I felt so ill, what the G/P noticed was my very deep voice and the throat looked sore so I was put on a list for a fast track for throat cancer

, I said "it my thyroid I feel as if someone had pulled the plug and I am shutting down "

I was told I fitted the the tick box for throat cancer ,so I went NO cancer now someone that really had cancer should have had that appt

At the same visit I asked for a blood test and was told it was not due until July, to come back then, I did , got a letter a week later telling me test was inconclusive make an appt in 3months for another test

I am afraid to say this even with a new doctor has been the story of my past 36 year

I wish they would wake up the the fact that a thyroid problem unmanage goes on to cause many other problems

In the past years , I have lost my hair for 5year and was very unwell after both my children and have a number of other health problem such as Fibromyalga bowel and bladder problems

So few in the health service seem to have much clue about thyroid problems and most of us cannot manage to pay out for private help

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You should write a post asking for help. 36 years is toooo long. This forum has got me back to full health

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This forum has got me back to health in under two years.Back in 2015 I knew nothing about the thyroid.

I have gone it alone and no longer visit the doctor/Endos who I found a complete waste of time.

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Hi I had symptoms for six years before I was diagnoised, they said I had ibs they also wanted to put me into menapause as also was having problems with that I have been on 100mg they started me at 50mg and has been raised twice my bones and joints ache, constant sore throat my saliva glands are constantly swollen, they sent me to throat specialist they said they where swollen but nothing to worry about been sent for X-rays, bone density neurosurgeon also going to see lung specialist in a week as not long out of hospital with pneumonia, not once has GP suggested sending me to see endo this seems like a bit of minefeild with GP not fully understanding the impact this has on our life's sick of being sick.

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(((BSGTraveller))) You are communicating with a cohort who understand your issues, some having suffered from the same, most having been gainsaid by their medical advisers who are supposed to know better. Many of whom have returned to wellness solely as a result of taking advice from this forum and setting aside, typically after following, the guidance of their medical advisers.

Much as I appreciate this is no time to change your GP, her imperious, defensive attitude in seeking to assure you that she has the ascendance in your care is not helpful.

Continue to educate yourself and make sure that she's aware of the wise comments that have come before my own. Current nhs thinking is that you are allegedly a stakeholder in your health and she appears to be denying you the opportunity. Her thoughts on TUK are simply antediluvian and plain wrong, as Marz has made you aware.

Forge on xx

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At a BTF meeting an attendee asked the organiser about TUK i.e. were/are these two organisations associated in any way? The organiser put the questioner straight on that issue, and then proceeded to make derogatory remarks about TUK and the TUK website and forum to the entire group that were seated and listening. 🤔

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OMG .... 😴😴

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BTF has BTA listed as one of their partner organisations... Correct me if I'm wrong, please, but BTF seems to endorse T4-only treatment as the only right treatment. WHOM are they helping and why they still exist?

It's hardly surprising BFT hate TUK, given that BFT are backing up BTA and vice versa and, as a charity, compete with TUK for funding.

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BTF seems to be run by medical establishment figures for their own ends and not for patients

Seems absolutely determined to keep patients (and doctors) from finding out that mono T4 treatment has kept large % of thyroid patients extremely ill or be forced to self medicate.

Seems they will deny the efficacy of T3, until they are the last ostriches, with their heads very definitely in the sand

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The question is: who pays their salaries??? Thyroid patients? Public funding?

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Kitten1978 Their 2017 Accounts show that they received £14,628 from AMCO Limited in the way of a grant towards producing their newsletter.

Page 19:

apps.charitycommission.gov....

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Unbiased then :-(

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Hidden - thank you!

....when you google AMCO Concordia comes up...

Reading the document, which you found, I can see they must be well financed:

- "This financial year we offered a £20,000 research

award"

- This year the BTF is offering two awards of up to £

500 to help cover conference/training expenses (...) for professionals

- they have 7 staff members!!!

- We received £1,500 from the Society for Endocrinolo

gy 2016 Patient Support Grants.

- The BTF have received approximately £82,000 in lega

cies this year, which has helped enormously towards

the running costs of the charity.

- We have received two grants: £1,000 and £500 toward

s the costs of the Children’s Conference in London

later this year.

- We were grateful to receive a grant of £500 from the

Paristamen CIO, a small grant making body. The

organisation makes small unrestricted awards to cha

ritable organisations they believe to be well-manag

ed and show accounts that conform to current charity law.

Also: British Thyroid Foundation Receipts and payments account for the year ended 31 March 2017 - page 16

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GPs love it when you're shy and silenced by a feeling of awe... or whatever it is that you're silenced by. 🤔 They don't like it when the patients question and challenge them... Apparently, we should know our place. 🤔

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in grave?

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This reaction from British medics both GPs and So called specialists is far too common I'm afraid. I know from experience. When trying to discuss thyroidism with all the GPs in my surgery, it's about as useful as talking to my broken down dishwasher... Flippin Useless!!!!

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I believe your broken dishwasher doesn't come up with so much c**p? lol

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Just to say guys, ive had 1 doctor admit he kbew bugger all about the thyroid and knew even less about the meds and another one who did not kbow what to look for on his computer screen for my antibodies results and would i come in and have a look to see so i could get my results!!! Says it all really docs are useless. Thank god this site is worth its weight in gold, ignore the haters, kbowledge is power and docs hate that.xx

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You know what: I'm actually quite impressed with doctors who ADMIT their lack of knowledge...as long as they do something about it (e.g. read, ask their colleagues, listen to the patient, refer). What I have problem with are countless GPs, and endos who know very little about thyroid but they still call themselves experts, they are so damn sure of themselves and their "knowledge" and blame their patients for being unwell and daring to complain about it. Honesty is a rare treasure ;)

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Ha Ha TOO RIGHT :)

When I asked a GP to test me for Hashimoto her comment I quote was " Oh? That's about antibodies isn't it? Don't need to bother with all that, just take your meds... Whether you have it or not, is irrelevent."

I think the Medical School Of Muppetry is high on membership list round here :)

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My endo said the same - that is was pretty obvious I had hashimotos, but was irrelevant to the prognosis. I think he did test though, and confirmed it.....but I have believed it was irrelevant - what difference does it make please?

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forever_tired

I don't know apart from reading that if you have it, you are best to go gluten free as gluten can worsen the symptoms. I read this via nutri medicine internet sights not via British based medical doctors who generally dispute that (well mine anyway). The only medically trained doctor (MD) who agrees to go gluten free that I have come across, is the American doctor Dr. Westin Childs (you can google his name for info). I don't know if I have it yet, I need to test myself privately as my GPs won't test me. These private prick tests for thyroid are great if your budget allows. I'm afraid the British healthcare system is like everwhere else these days, it's a two tierd based system. If you want thorough diagnosis, support and treatment go private. I know, I worked for the NHS for years and also the American health system.

Best of luck!

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The 3rd leading cause of death in the US is doctor directed medications (taken appropriately by patient). No idea what it is in the UK but this country is never far behind - why would anyone continue to put these people on a pedestal and follow their advice without question.

As they say "Science progresses one funeral at a time" and I am doing my best to make sure its not mine!!

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I liked that quote so much I actually found out who said it:

Science advances one funeral at a time – quote by Max Karl Ernst Ludwig Planck. One of the most important German physicists of the late 19th and early 20th centuries, winning the Nobel Prize in Physics in 1918.

He also said: Die Wahrheit triumphiert nie, ihre Gegner sterben nur aus.

Truth never triumphs—its opponents just die out. That's why educating new generations of endos is so important!

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Thanks for that, I have been quoting it for so long I had forgotten who said it. I like his second quote too although in Planck's day I imagine he would never have guessed the amount of money Big Pharma would invest in keeping everyone away from the truth.

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I'd question her credibility as it happens. Favours BTF as controlled by the BTA.

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BTF is just a charity - why would they be credible? Charities are there to make money for themselves and their directors, and many don't do anything directly for the cause they say they support (eg Shelter does not provide housing or even soup kitchens).

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Hi

Yea when I took some info to my GP he replied ( this infuriates me) we're did you get this info from an then went on to say belonging to online sites is not good an that I read to much .

I then went private an was put on t3 as endo said it was on the floor . You can imagine my GP when he received info from the consultant lol 😂 . Anyhow I have recently had my t3 stopped due to new policy.

I have had none now for 11 days an I'm starting to go down hill I've decided to give up trying to get better . . Sad really just putting my time in day by day getting through. I don't know what else to do I feel very let down by all of it plus it cost me over a thousand pounds to attend a private endro money I didn't have .

I Realy hope you get somewhere an go on to get ur health / life back on track 🌻

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Wildgeese - I believe it has been mentioned on here that a prescription for T3 is available from some private endocrinologists, with which you can source it. One thousand pounds seems like an extortionate amount for consultations with an endocrinologist though.

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Yea I did attend him for a while it was fir diff tests etc . He tested me fir addisons/ sorgrins the tests were expensive plus 200 pounds every appointment 🌻 Thanks you for reply

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