New paper in Thyroid. Timely discussion about differences in US and European Guidelines on treatment:
Gilbert H. Daniels and Peter A. Kopp
THYROID
Volume 29, Number 6, 2019
ª Mary Ann Liebert, Inc.
DOI: 10.1089/thy.2019.0283
Paywall protected.
Full paper deposited with TUK louise roberts.
So how do we persuade our Dr's to realise and accept this, instead of dogmatic adherence to the easy route of following the herd?
Thank you for posting - my 'dossier' grows and grows.
Anyone see 'This Morning' earlier in the week, with the spectacle of a GP so flippantly describing hypothyroidism? It was actually Dr Chris way back in 2008 advising viewers to visit GP with signs/symptoms + in 09 saying to persist if GP ignored. 'They' did ignore, which sent me looking in 2010 to find Dr Skinner and Dr P for supplement ++ advice.
Told in 2008 by endo Prof - definitely not hypothyroid, when I persisted in 2009, told very same by another; by which time I looked like the medical text before pics from 100+ years ago. I was, of course [but see below*] below TSH range. Drs S & P both said... "I just had to look at you"... of course they did more than that. I'm sure many of us can 'spot a hypothyroid person'?
GP MRs clearly show that in *2003 I was hypothyroid - not many symptoms... JUST heart and inexplicable weight that wouldn't shift. Signs/symptoms certainly showed by 2006/07 - yet in *2008, again 'routinely' tested, depicting that I was hypothyroid... [if ranges are accepted - which, of course, they live by]. GP did not say and I had no idea about this illness. There's GP's for you!
I was just told it was individual ailments then menopause despite telling several doctors I had a family history of hypothyroidism - the doctoring by crystal ball brigade they never even did a test. I did have one after a close relative was diagnosed with thyroid cancer (NHL so rare) and her Endocrinologists told close family members to get tested as the thyroid was very deformed and this can also be inherited. I already suspected I had hypothyroidism by then. I was told tests were normal but often wonder what they said I can’t believe they were normal given how I felt. My notes were lost later on so don’t know if that test result even exists now. I thought I was a hypochondriac because I believed what the doctors told me despite having symptoms that were all mentioned in a book I bought on the topic. Instead of being suspicious I accepted what I was told and thought I was imagining it. Tragically for me I was not imagining it at all. I did not look typically hypothyroid I was as thin as a rake and had no goitre but in the final
phases of the illness I certainly looked it piling on 5 stone in a very short time my appetite became literally insatiable and I was by this juncture totally crazy I was so overt. The thyroid had shrivelled away so no goitre appeared. By this point another close relative had developed NHL of the thyroid an total thyroidectomy op rendered them hypothyroid and another had died of a NHL but not of the thyroid.
I even had to demand a test at that late juncture - I summoned up my last ounce of strength and fought until I got it - once the GP knew the background he was really fantastic I had just gone in and told him I’m hypothyroid and I need a blood test which was not heavy in context I must admit but it was about all I could manage by that time and my mind had become very literal I was not to hot on the other persons perspective almost regarding them as able to read my mind. I don’t think I’d have survived had I not persuaded the GP to help me....its not even Victorian these days because they seem to have been very well clued up on the condition and keen to treat once NDT became available. Endocrinology has gone backwards as time runs in the opposite direction - absurd or what? Before we know it it will revert to a pre medication time and we will simply be left to die a hideous death because we are too old to benefit from it and deserve a TSH through the roof just for being an old woman. Small wonder I self medicate and have a very jaundiced view of the treatment of hypothyroidism in the uk. One would hope it was just bad luck but stories like mine crop in this forum far too often for comfort. I have lost faith in it ever improving now, it seems like downhill all the way with ignorant individuals grabbing the power to dictate garbage guidelines that the minions on the front line follow like automatons. Decent research is ignored as are the very people who suffer from the disorder - it is beyond belief.
Sorry to hear that you've suffered so much at the hands of... It is beyond belief... some have no clue, some are deliberately clueless and others do know and have chosen to keep pushing their 'little pet theories', staring the evidence hard in the back of the neck.. even when the face of the patient is directly before them. By now, having seen and heard so much, I am left to suggest it is barbarity mixed with misogyny, which so many have had to, and seemingly will continue to face. Sickening - no shame - taking ££ without a care.
I’m afraid I have to agree, if you have a hatred of women what better area of medicine is there to practice cruelty upon them than Endocrinology? When that type climb up the greasy pole to the top of the tree (psychopathic types often do) the trouble deepens and becomes supposed guidelines. The rest and I think the majority are just brainwashed and see each symptom in isolation with holistic vision an anathema. The doctors I saw appear to have had no knowledge of the disorder and opted for the wrong diagnosis not in malice but in ignorance, tellingly, underneath lies an institutionalised inability to listen carefully to the patient thus not thoroughly investigating a perfectly reasonable suggestion of the root of symptoms.
I'm afraid that I also have to agree with you! However, I still see quite a lot of this [misogyny] across the board... not helped at all by women themselves [apparently refusing to acknowledge that their playing into the hands of men... 'titivation' being more prevalent today than ever: that's fine in an adult world, which is something far from being approximated, let alone achieved 
], and on it goes.
Psychopathy is also a huge issue; sometimes I listen to medics and think, "Are you OK, really!?" I've even said, in writing, to a GP, "Please stop this 'O Level' armchair psychology"! Also that his communication skills are appalling... they are - shoddy note taking, passing on impressions to the next doctor/consultant based on fantasy! They simply don't - won't - or can't listen and then fill in the gaps. An effective doctor LISTENS and, because they're listening, the patient literally TELLS them what's wrong; for that to happen they need to know their stuff. Not only are young docs today seemingly denied/deprived of hypothyroid training, they are being exposed to a one track, limited outlook. THAT is what we're left with.
After fighting off the “how about some antidepressants” from the young doctor I saw and explaining my situation more coherently I must admit he was absolutely fantastic - he saved my life and he always listened I was so lucky to get him. He was very exceptional. I moved away so never went through the Levothyroxine is not really resolving things phase with him. I wonder how that would have gone. So even youthful doctors can be excellent. It must depend upon the individual generally I prefer an older doc but I respect the ones that respect me.
Propoganda! LindaC
Who? Where does it come from... though? UrsaP?
I suspect BP are influencing (funding) more than anyone realises. Gov...universities, large companies, board of NHS maybe... in turn they have influence with media etc...
Yes, it has now reached the point that we're more in the clutches of a stinking US type system than we'd even imagined... set to now get worse too. 
As recent history has proved, things only get worse! in 2007 I got T3, in 2019 they are trying to take it away.
Shockingly appalling! This is all dreadful enough without having to scrap with this lot for hormones. Fortunately, whilst on Armour T from 2010 [initially privately but then being prescribed by GP - NHS funded for years], I was strongly advised [May 2010] that I'd only ever be OK on T3 alone, and forever. I left it until 2012 and, fortunately, was given the source of this from Dr P. The main source remains, but I have had to also draw on other sources. Hope you're getting it sorted! xox
Having fought for an Endo appointment after 20 years on T4, saying it was not working from start, and being asked to go private through hubby's work, I am suddenly told to make an appointment to see Dr re endo referral? No doubt NHS Endo only. Why? when stable on t3 mono for 9 years or more, and not got any of the threatened 'side effects'. Taking up NHS money in an appointment I do not need? With out any updated bloods etc? Clearly a case of 'deprescribe' via Endo. And this decision not made by Dr but AN Other that reception and dispensing staff didn't seem to know who they were????
Sorry, just seen this now - that is dreadful - I do hope you got it sorted out. Yeah, administrative staff... these days Yes, they do 'deprescribe', after my being told that I was never hypothyroid in the first place - took until Feb 2010 to be diagnosed by Dr S - then incidentally Dr P [both of whom knew more that most of the rest combined], so in July 2015, told I'd never been hypothyroid in the first place. My latest expression is, "When Snake Oil[ers] Came to the City". Gordon Skinner had a Worldwide Register... to DO something with, try to stop this Boys Club Misogyny; even he was [some have said] 'stressed to death' for his great work... merely helping people and exposing their Order of the Day. This is unlikely to change in our lifetime, despite those good guys still out there .
Yes agree. I was seen by endo in 1981, who basically couldn't make his mind up, so chose to not diagnose and leave me to rot for another 10 years. I wonder how much damage is caused ! by non treeatment of what they now call subclinical HypoT. When was the term SCH coined? I only started to hear it in recent years. See it as an excuse to not diagnose and hence not increase the free prescription allocations. No doubt they will get to me at some point, I'm just playing the avoidance game at the minute! Dr P sorted me in 2010 when T4 hadn't worked since 1991. But no doubt the poor recording of symptoms and the constant refusal on the GP's part to acknowledge that any of the symptoms were either thyroid to T4 related, will mean that they won't acknowledge the failure of T4. I will be telling them to shove it where the sun don't shine, if they try to put me back on T4. I'm not a guinea pig for them to experiment with.
Wow - the B's! Quite frankly, they seem unfit for purpose WHEN using ranges etc to assess an individual HORMONAL person before them, not some simple little 'formula' for the whole population. Poor recording, that's for sure, when you have doctors who utilise clinical judgement BECAUSE THEY ARE ABLE, they know what they're talking about. I simply couldn't take T4 for more that weeks - great at first - getting up dancing and singing - until it became weird, i.e. wired and not right at all. I had to have Armour, then T3 alone. Eek. Mine clearly started in 2003 [weight and heart] but, aside from that I was fine... little tired but nothing much. By 2006/7 - I looked like the pics from the 1880s - still no one listened - x2 endo profs - over-reliant on ranges (2008, then 2009) decided not hypothyroid. Dr S, Feb 2010 was amazed that they'd just left me for so long. Clearly it's been even worse for you - this is just so sick. Take care and be well 
xox
Yeah, Dr P in May of 2010, said need T3 for life, gave me the source and I've never asked for or used NHS T3... ever. So long as I have my stash - sometimes gets rather large for fear of what's happened in the past - worldwide shortages - I will continue, despite endos/GP's telling my x,y,z.
I was lucky, then. I told my, then, GP, now retired. I was going to see Dr P - out of desperation, and that as nothing they had done had worked, I hoped he'd support me. He agreed to. So when my T3 (which was initially issued by an endo) was increased and the T4 decreased, the GP just went along with it. Eventually, having tried reintroducing T4 back into the mix, on several occasions, and all the symptoms coming back within days, I eventually just told GP I wasn't taking T4 again. He did mention that there were 'side effects' I told him I knew and knew what to look out for. He saw me got well and I never had a problem after that. Until this grot blew up. Taking T3 off people who need it amounts to neglect in my view. The Dr's doing this cannot have a conscience!! You must have seen Dr P around the same time I did, I saw him in Malvern.
All the best.
You were lucky - I saw Dr P in Morpeth, Northumberland [one of his peripatetic clinics] - what he KNEW about hypothyroidism could be fitted on a countrywide gaggle of endos... of course, they'd never hear of that - BECAUSE they DON'T KNOW!! Same here, I couldn't tolerate T4... clearly because I didn't need it... simple! Yes, once on T3 I don't know how anyone could survive just being taken off - neglect all right BUT, short of someone like the amazing Dr John Lowe [ignored out of hand by the UK establishment], there was barely anyone else around to be in the corner of patients - Dr S [look what was done to him] and Dr P... ignored and worse at the hand of a flippant, uncaring and arrogant/ignorant bunch of. I have to say that my then GP [still at practice now] ignored the views of 2 endo profs and accepted Dr S's diagnosis, then within a short time actually prescribed Armour Thyroid for me via NHS funds. Armour was only removed from my prescriptions in Jan 2017 but I was largely T3 alone from earlier in any event. Well, we've certainly seen the shady side of endocrinology
I think it is the shady side of medicine. Not just Endocrinology. I still harbour an underlying inkling that the demonisation of T3 is not about the cost but about the real benefit. Not just for thyroid patients but I think it underpins a lot of other conditions, that is why BP don't want it on the market, it will affect their profits. They only gain when we are ill. If it was just about 'cost' that would have been sorted long before now. Cost in a climate of NHS bankruptcy is a valid excuse, to pull it, under public opinion. I reckon the next step will be to restrict importing of meds for own use. In my view, all the publicity around the dangers of self sourcing and medicating, over the last 2 years, is a set up to gain pubic acceptance of that too. Watch this space. Let's see what has been put in play whilst all eyes on Brexit or the leadership campaign. Note - since the leadership brawl started how much less have we heard about Brexit? Why did we need to be privy to the circus of the leadership fight? We did not have all this grot when TM took over, the MPs made the decisions and away they went. Smoke screens.... Hubby thinks Borris will still win it, Hunt has been too smug all along for my liking. Plus he 'has unfinished business' in the DoH, which I take to mean he hasn't quite finished destroying it and he is also wanting in to finish off the social care side too. There was twitter activity a few weeks ago about putting money into the social care, rather than health for longevity, as supposedly the social improvements will lead to better health. Anyone who believes that is crazy. What they mean is that it is easier to hide money In the social side of care. Let's face it they have already destroyed that.
I have a friend, who nearly 40 years ago, had a knee op which left her knee more damaged than it was. All records of this op mysteriously disappeared, as did the Dr who did the surgery, the hospital denied knowledge of him. She has struggled walking with sticks all these years, the knock on effect on her back, other leg, knee, hips, neck etc has been crippling. She has been living with constant pain, which meant they plied her with pain killers and antidepressants. Her hubby left her, though to be fair, it was amicable, she realised the limitations she could bring to the relationship. The trouble is, there is/was probably something corrective that could have been done, but no one would touch her, as too afraid of getting the blame for earlier damage. This has affected her life, tremendously. 7 years ago she got a mobility car. Which has been her lifeline. A few months ago they took it off her. On the grounds that she can 'plan' a journey??? My bro in law, involved in a serious accident 25 years ago, never been able to drive since, (tho they gave him his licence back 12 months after the accident!!! When he had been in hospital most of that 12 months!!!) Has been left physically and mentally damaged, struggles to walk and with balance, all one side affected. They took his 'blue badge' off him. (They have recently given it back) But the point I'm making is that the current ethos is to remove all support, and let these people give up or fight to get it back. How many are too ill to fight, or don't have family and such to help them? It is cruel. In my friends case, the GP told her she can't support her case, as my friend has not been to the Dr enough over the last few months???? Because they keep telling her there is nothing they can do for her. The system is just a joke.
Population/pension control. They can't afford our pensions.
Another friend is also currently fighting to get her car back after suddenly having it taken away. I wonder if this is happening to as many men? I'm starting to think that 'women of a certain age' are easy targets. Especially if we have hypo, that will never be recorded on a death cert, or if there is history of depression, that can so easily be blamed for early demise?
Sorry didn't mean to rant. But I find the way people being treated as totally uncivil, and immoral.
Society has broken down.
Wow - yes indeed and no ranting at all - shame people seem not to care enough... until it happens to them, of course. I'm wading through M Records right now - so can't reply in depth - BUT, I'm with you all the way. I'll continue to challenge with my last breath... but that brings with it all manner of skulduggery, a price that some of us need to pay.
Several of my family members have suffered horrendously - obviously all dead now - by as my father used to say, "They just scraped through Medical School, 'Your Life in Their Hands' [old TV show]" him being repeatedly ignored on issues they simply didn't grasp/believe. From 35 y/o - given one drug after another to counteract the side effects of the last, died 54 y/o of MND - couldn't deny that one! My Family Medical Tree of Horror... eek! I had no idea that all of these years later I'd experience little change. Ah, there IS change - their level of arrogance has shot through the roof - [ignorance being the best friend of arrogance] - at least in the mid-20th C, many doctors acknowledged their privileged place [status, ££] within a community. Undoubtedly, there are still exemplary doctors - who know their stuff - and deliver with a genuine manner; they have now become the needle in a haystack, set against the multitude of... YES, society has long since broken down, with Brex**it being the latest tip of the iceberg. Take care, will catch up soon... plodding on here Look after yourself, no one else will xox
The Guidelines may differ - but reading posts from the US here it seems many struggle due to the reliance on the TSH ...
But they do get treated before it reaches 10 or is it 20 now...or in some cases, like mine, 110, that’s assuming their guidelines are followed of course
Used to be over 4 [when USA was 3.3] - BUT, a knowledgeable doctor would keep and eye, maybe even trial, over 2+. It just shows, to be 110 - as youi - I'd have been dead. Hope you've got things sorted by now!?
There in lies the crux...knowledgable GP? Deliberately not taught and too willing to accept the bull they are fed, despite the symptoms they see. Brainwashed?
Pretty much I take NDT but it messed up my heart a bit and now I have blood pressure which may or may not be a long term consequence of decades of untreated hypothyroidism. On the other hand my depression has gone completely with NDT so I have never felt so good on the head front! I do wonder how on earth I kept going - I must be tougher than I think 😊 that said others here have reported much higher TSH levels some over 200 😳 I think 110 was my upper limit
Good to hear you're feeling much better - heart does seem to get affected! I did great on NDT but - in those days - too concerned that my T3 was too high + Labs wouldn't test [GP did try, several times, drew bloods, sent them off, only to be told, "Won't test"]. When I needed more, I'd left it too late - effects waning baldy - so was left by that time to implement Dr P's advice - T3 alone. This might sound stupid but, by that time, I'd realised how the tests - once taking hormones - were pretty useless, so why not go for T3 alone! In for penny I've never suffered depression - just anger via sh*t doctors conduct. Take care and be well xox
I think doctors secretly already know that, it's just easier for them to dismiss 'troublesome' patients if they can say 'my hands are tied...'
Even when twice being above a hypothyroid range diagnosis and still not even telling the patient... with a list of signs/symptoms? Poor, shoddy, 'negligent' doctoring!?
I was watching an old film a few days ago about an Australian nurse who had new ideas that actually worked to a certain extent to treat children with polio - "Sister Kenny".
The opposition and criticism she received over several decades was similar to what many of us encounter when we request NDT, query the value of TSH test or request more extensive blood tests. The doctors were not prepared to accept anything that a mere (unqualified) nurse told them irrespective of masses of proof that the health of hundreds, if not thousands of children was vastly improved by using her methods.
In the end they accepted the evidence but only after a great deal of help and a breakthrough at a progressive American hospital.
Recommend you watch the film. The methods are pretty much out of date now following the intro of the Salk vaccine.
All I can say is complain as much as you can to any health professional you may see if you feel you are not receiving optimal treatment, contact the press if you are able, complain to your MP and do whatever you can to get this matter ahead of "Brexit" in the news.
Again...Brexit the crux. What is being passed in parliament behind the veil of Brexit? Remember the Expenses scandal, can't recall details but I do recall a lot of 'who allowed that to pass through parliament?' comments for some time after.
I worry there will suddenly be restrictions on self sourcing!
Yes, but hypothyroidism has such a rich history - going back to the late 1800's [actually way before, but that's too... for them to consider ] NO excuse!
The full paper can be found here :
sci-hub.se/https://doi.org/...
Sometimes the link works, sometimes it doesn't!
When and on what authority did T3 get dropped from GP training?
Certainly older GP's at least seem to know what T3 is, from my experience. They may not fully understand the workings. Nor are they interested with the insistence of T4 mono all that is required. I reckon any GP's 40 and under have not even been taught about it. I have had a Dr at my surgery tell me there is no point her getting the T3 level as she can't interpret it. I told her to get it, I could.
Even Endo's who are suppose to be specialists know so little- was with someone at an appointment 18 months ago, Endo did not know what NDT was (THE HISTORY OF THYROID TREATMENT??) He also admitted knowing nothing about Rt3. So what sort of specialist??? I suspect he was only temporary Brought in to see this particular patient to fob her off. Me being there really spooked him! Sadly it did not improve his knowledge or competency!
We have to start making a stand and refusing to accept second hand thyroid specialism. They are getting away with murder!
Don’t they ever research things a bit deeper?
I'm not convinced that many Endo's do understand the issues, too many of them are diabetes trained/focused. Is it because diabetes is an easier endocrine aspect to understand than the thyroid side, and diabetes is more 'fashionable' and 'safe' - less risk of misdiagnosis and treatment? There has to be a reason. Maybe it is generations of avoidance. No one left to teach it properly? The real knowledge base lost on the younger generations and not encouraged by the older incompetents.
Where is the continued professional development and further research and training? Surely as a profession there is a requirement to keep abreast of new thinking and understanding. And not just thorough one journal article prorating to be 'guidance'!
How can these inadequate medics morally continue to practice, knowing that the patient needs this medication but refusing it? Where is the 'duty of care'?
More to the point, why are these Endo's and GP's not out there shouting at the Gov to implement the Cost bill amendment? So that they can issue the medication they need to.
Which shows their total incompetence and lack of understanding and knowledge. Or fear? If fear...spineless! If fear time these people started to stand together and speak out, as much for the sake of their own self respect as for the patients that they purport to care for.
I must say I did find my endo very good indeed but only on the T4 monotherapy trammel lines he certainly aimed for proper optimisation but although I still felt quite unwell I was never told of other options I had no idea there were things like T3 and NDT I was told I would probably never feel properly better (this was the Thyroid nurse not the endocrinologist whom I never saw again once my blood tests eventually got closer to optimisation). I presume he did not prescribe T3. I found out later I have the DIO2 polymorph for poor conversion. I was incredibly disappointed to feel so unwell because all my hypo relatives found Levothyroxine excellent. I can only think I drew the genetic short straw. After two years of feeling utter pants I swapped over to NDT even on 1/4 grain I had rapid and noticeable improvements and felt my old self again once I titrated up to a full maintenace dose. If they understand the issues why do they not communicate it to those that are not getting proper relief and advise further tests for DIO2 given they can treat with T3 for that. If they can’t help us directly, armed with knowledge we can help ourselves - just keeping stum is shameful on their part.
Matthew, Mark, Luke and John (Bless the bed that I lie on) - even the gospels don't entirely agree with each other.
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