Why the medical establishment opposes change - Thyroid UK

Thyroid UK

137,151 members160,830 posts

Why the medical establishment opposes change

diogenes profile image
diogenesRemembering
38 Replies

I' ve pondered deeply about why the thyroid medical establishment is so against and ignores the new evidence that shows that TSH-only diagnosis in therapy and forbidding of T3 in any form for treatment of hypothyroidism are badly mistaken ideas. You would think that medical opinion would carefully assess new work in the light of their current opinions and change as necessary. I've come to the conclusion that in a strange sense, it's all the fault of the late Drs Lowe and Skinner. By that I mean that they were advocating much of what the new ideas promote, not from a particularly physiologically-based detailed argument but from a presentational point of view by the patients. At that time, the physiological detail wasn't there to strengthen their case, in the face of the popular opposing paradigm that TSH is all. Therefore they could not only be ignored, but hounded as being "quacks" who damage their patients. In this way there is developed a stubborn mindset against the idea that Lowe & Skinner might have been right all along in most ways, since if this is acknowledged, there will be a lot of egg on many faces. The medical profession is far too sensitive of their reputation to let that happen if they can avoid it. For my part I haven't come to the conclusions I now have because of Lowe & Skinner but have independently found it to be true it purely from a neutral biochemical/physiological viewpoint. I find that very interesting because our group didn't set out to go in that direction initially: but the signpost came in to view early on, and could not be denied.

Written by
diogenes profile image
diogenes
Remembering
To view profiles and participate in discussions please or .
Read more about...
38 Replies
shaws profile image
shawsAdministrator

They also pursued Dr Peatfield as well for doing as he was taught as a Student and he also studied, I believe, at the Broda Barnes Foundation. He himself has hypothroidism.

The mindset of the Endocrinology in the UK, who we've heard /read are lauded by other countries and they are sticklers of the TSH only variety. If we don't find levothyroxine improves our health we are denied a reasonable healthy life and our families have to cope as well and we may lose our jobs or divorce etc etc. as our brains cannot function as they should.

When we read how patients are treated by some Endocrinologists/doctors who deride the fact that the patient has/have used the internet in the hope of finding out why they still have severe symptoms as they have been told they are normal because that's what the TSH implies.

We are so lucky we have scientists like you and your team diogenes who do the work and find out that Lowe/Skinner and others who lost their licence (Dr Derry of Canada) were/are correct and how despicable that good men are dismissed/struck off and unable to help patients, whilst others who Dr Lowe has said are corrupted by payments from the Pharma companies.

It is an uphill struggle for the patients who hope against hope that the Endocrinology open their minds and change guidelines to include T4/T3 for the patients according to what scientific studies have shown.

Is it time to chain ourselves to the railings of the GMC/BTA?

in reply to shaws

Happy to chain myself to railings. Just tell me where and when. I don't have the energy to march these days (thanks, Thyroid).

Personally I think the NHS opinion on thyroidism is because treating thyroidism 'properly' would require an individual response (and medication regime) for every patient.

They don't have the resources in time and money to do more than slap a label on patients with thyroidism and treat the label: and they certainly don't have the will to change that. Indeed - as we see so often - they will waste considerable resources protecting their 'one size fits all' position. Including pricing T3 out of the reach of GPs (which simply gives them a simpler reason to refuse to prescribe it).

Sarahpk profile image
Sarahpk in reply to

Count me in but I will need to bring my bed as well! I am so ill after 6 years of health deterioration. I only heard about T3 a month ago and I am 13 years post TT and have lived in 4 countries! I am still in shock how bad this is!

shaws profile image
shawsAdministrator in reply to Sarahpk

I hope someone will at least add T3 to your prescription as I know how ill someone can be when restricted to levothyroxine alone. It wouldn't take much and might do you a world of good.

To keep someone deliberately symptomatic when they've had their thyroid gland removed I cannot bear thinking about when it is completely unnecessary. NDT as well of which there are a few or T3 added or T3 only.

The problem is that Big Pharma was so successful in their introduction of levothyroxine as 'perfect replacement plus blood tests with monetary incentives. So straight away they've made millions of $s £s. If doctors had the flexibility they would still have prescribed NDT as many did particularly if patients still felt unwell. Those who did were threatened with removal of licences.

I am not medically qualified but wonder, even if we haven't studied, but have personal experience would a replacement of T4 be more beneficial that T4, T3, T2, T1 and calcitonin). The following is about the Petition going on in the Scottish Parliament and this is Lorraine's story.

hypothyroidmom.com/suicide-...

Sarahpk profile image
Sarahpk in reply to shaws

Hi shaw thanks AND yes thanks to the site I found a good endo - although private - and started on T3 and suplemennts, long way to go but thank you all so much

shaws profile image
shawsAdministrator in reply to Sarahpk

Wishing you well and it does lift your spirits when a doctor listens and seems to be helpful and knowledgeable.

shaws profile image
shawsAdministrator in reply to

How we used to be treated was that - No.1. doctors knew all or mainly all of the clinical symptoms. (No blood tests then).

When people went to the surgery, the doctors looked for clinical symptoms, i.e. was our tongue enlarged, was our pulse slow, was our temp low, fatigue etc etc. Then the rest of the clinical symptoms of which one was joint/muscle pain.

No2 we got a trial of NDT (that's all there was). It was gradually increased until patient felt better and if they didn't improve they'd look elsewhere. The usual doses were between 200 and 400mcg and Dr Skinner, before his death (he wasn't an Endocrinologist) said it was inexplicable how, throughout the world, we were nowadays given too low to keep within a 'range' or remained undiagnosed/undertreated due to the TSH alone and doctors were only looking at blood tests but not the listening to the patients.

Dr Skinner as well as Dr Peatfield both disagreed with the guidelines. Treating by TSH only and they rarely test FT4/FT3 as that shows what is actually in the blood. I don't think they know that T3 is the only active thyroid hormone, levo being inactive and depends how patient's body can convert it to T3.

They would rather prescribe extras 'for the clinical symptom' rather than a decent dose of thyroid hormones.

Clutter profile image
Clutter

Diogenes,

I think they are so much in thrall to blood test results that they forget that they are dealing with people who do not respond like laboratory rats and they've forgotten how to interpret the clinical signs alongside the lab results.

Marz profile image
Marz

Whatever the reasoning - we have been lead to believe that those selected to study medicine are some of the best brains the education system can produce. So why oh why don't they use them to benefit those they are supposed to be treating.

Perhaps there should be Degrees in Common Sense instead ....

I think it would be good if there was a drive at GP level to change the dynamics of the Doc/Patient relationship. To promote it as a team effort where the Clinic/Surgery is rewarded for success in returning patients to optimal health rather than the amount of drugs prescribed.

I believe in China you pay the Docs when you are well - not when you are ill :-)

Rapunzel profile image
Rapunzel

Repost but conspicuous in diogenes 's argument -

scottberkun.com/essays/40-w...

I am wrong, quite often ;)

I haven't died. Yet. 👋

Over to you, medical eggheads

Marz profile image
Marz in reply to Rapunzel

Great link Rap - how did that pop into your head or did it just pop into your Inbox ?

Rapunzel profile image
Rapunzel in reply to Marz

I worked with a bunch of very smart ppl in my previous career and looking at this site gave me some respite from rocking and dribbling and banging my head against the wall when they wouldn't do as they were bidden... :D but they knew better. It takes minutes to entrench dogma and decades to undo it :(

stiltzski profile image
stiltzski

Despite the bad news of my husband Parkinson's Disease diagnosis, it was a breath of fresh air to see that neurologists rely almost entirely on clinical symptoms to diagnose it. I did comment sotte voice 'if only endocrinologists did the same' ...

LAHs profile image
LAHs

Good observations Diogenes, yes, ego and image play such a big part in many professions. Not that my profession is innocent but I remember a phrase I was told by our PI when I was a graduate student. If something went wrong or the result wasn't what we expected - or wanted, we were told: "Get your emotions out of it, redo the experiment, collect the facts and find the truth". It's a phrase I have used throughout my life.

in reply to LAHs

From your mouth to the ears of Endocrinologists and GPs, LAHs

SilverAvocado profile image
SilverAvocado

Looking at it from a sociology/philosophy of science perspective I think that story is quite common. These social issues often develop around big shifts in ideas - the original proponents of a new approach become demonise and said not to do good science, and the senior people have built their reputation on the old set of ideas, and risk it all collapsing into nothing if the new ideas become central.

But is it a new idea to give the TSH less weight? Because the TSH test itself isn't that old, this is more of a back and forth than a linear story.

diogenes profile image
diogenesRemembering in reply to SilverAvocado

TSH monopoly testing came into its own from 1985, when the sensitivity of the test for the first time was good enough to detect hyperthyroidism from euthyroidism. Up to then because the TSH wasn't sensitive enough, all three tests were done (USA excepted, which never took on FT3 but kept on with total T3). Simultaneously automated machine testing came in. The combination of computerisation of results (computer says "no" so no thinking needed) and a cheap catch-all TSH was irresistible to the thyroid field and fostered the one size fits all belief. The untested assumption was made that TSH and FT4 were linked and so was FT3, but FT3 never got used for testing therapy but only for hyperthyroid detection. We now know the links are nothing like what was assumed and is still gospel.

helvella profile image
helvellaAdministratorThyroid UK in reply to diogenes

I have lost count of the number of times that we have seen claims about the "exquisite sensitivity" of the TSH test - as if that, in and of itself, made it a good test. I might accept that the scientific work which resulted in it being so sensitive is worthy of praise. I'd still reject use of TSH as the only test.

I imagine if the sensitivity of the TSH test were improved another 10, 100 or 1000-fold it would result in even stronger claims that its use is somehow scientifically valid.

As I understand, the reality is that we still see interference (at least with the tests produced by some manufacturers) from TSH antibodies. We still see inconsistency between the results from different labs. We still see considerable variation in interpretation.

I suggest that if one test were such a good idea, we could do the following:

Take the results of TSH, FT4 and FT3 tests for a large number of patients.

Blank out one value for each set of results.

Get these experienced endocrinologists to fill in the blanks.

Would be interesting to see their accuracy.

humanbean profile image
humanbean in reply to helvella

I LOVE that idea, helvella!

jackiehyland profile image
jackiehyland in reply to helvella

For such a complex disease they have one blood test and one medication even an idiot knows that couldn't be right do the medical professionals think we are idiots, I recently came across by accident that they have 14 different medications for erectile dysfunction !!!! Again something for men and since thyroid problems seem to be more a woman's affliction no help there !!! If it was a man's problem only I'm sure there would be a list of medications to chose from anyone agree ?

humanbean profile image
humanbean in reply to jackiehyland

I've read that there are about 85 different drugs and preparations that can be prescribed for diabetes.

Fourteen for erectile dysfunction is a very good statistic to remember. :O

Any condition which mainly or only affects women has always been given low priority because everything that affects women has been deemed to be hysterical or neurotic in nature. (The one thing that seems to be different is breast cancer - but then lots of men like breasts - is that why they get medical attention?)

I have read in the last year that period pains are now declared (by the NHS) to be mainly "psychological" in origin or they are a "Medically Unexplained Symptom" (MUS) that should be dealt with as a mental health problem. I wasn't sure how that would present in practice until I caught a few minutes of an episode of GPs Behind Closed Doors a couple of weeks ago. A young woman was giving a description that seemed likely to be endometriosis to me. After a two minute discussion the GP (female) said briskly (the end of conversation tone they use to shut people up) "I think its psychological" and started offering anti-depressants. And that was it!

If you want to be depressed about the future direction of the NHS, browse through this link (from another forum) :

forums.phoenixrising.me/ind...

Copied from a post on the subject from the same forum I just linked

UK Healthcare 2017

Doctor: It's bad news, I'm afraid. You have MUS.

Patient: Oh, no. That sounds bad. Are you sure? You haven't run any tests.

Doctor: There's no test for MUS.

Patient: But what if it's something else? Shouldn't you run some tests?

Doctor: I can't run any tests because of your MUS.

ajs100uk profile image
ajs100uk

I have come to the conclusion it is down to cost. Imagine if they did finally accept the evidence regarding how TSH is not particularly helpful in diagnosis and how T3/NDT really helps people feel well. Imagine how many people they would then have to start treating. People like me, who have every symtpom going and have done for years, who has had no NHS treatment due to having a normal TSH. The floodgates would open. The need to save money has over taken the basics of care - asking how someone feels, listening, and treating accordingly.

jackiehyland profile image
jackiehyland in reply to ajs100uk

I feel like I'm walking through a mine field alone with no direction no help no hope no understanding not only from the medical profession but from friends family ! If you don't have thyroid problems you can't possibly understand them or how it makes them feel !!! It's pointless wasting the doctors time he can't do anything for you !!! You start to feel like a whinging moaning pain in the arse, I wish they could make a pill to temporarily switch off someone thyroid function for six months and let them live with it especially those who so strongly oppose proper medication,so we have to suck it up and get on with life for anyone who is reading this who doesn't have thyroid problems I can say being under treated for this is probably equivalent to leaving a cripple a wheelchair with one wheel !!!!#

humanbean profile image
humanbean in reply to jackiehyland

Someone with a healthy thyroid could take carbimazole (for hyperthyroidism) for a few months. But the experiment would be regarded as highly unethical and illegal, sadly. There are a few people I would like to try the experiment on.

HarryE profile image
HarryE in reply to ajs100uk

But think of the savings on unnecessary medications to mask symptoms, and all the people who would be well enough to go back to work.

I was signed off work sick for 4 months, on full pay as I work in the NHS, for want of a few pounds' worth of medication.

BadHare profile image
BadHare

I'm hoping they will soon realise there's been an enormous mistake, as with the bad advice that's been dished out for decades on diet.

humanbean profile image
humanbean in reply to BadHare

The "official" UK diabetes charity still touts the high carb/low fat diet to diabetics :

diabetes.org.uk/Guide-to-di...

The NHS does the same for everyone :

nhs.uk/Livewell/Goodfood/Pa...

nhs.uk/Livewell/Goodfood/Do...

If I was diabetic I would much prefer to get my eating advice from the patient-led "unofficial" UK diabetes charity :

diabetes.co.uk/diet/low-car...

diabetes.co.uk/lowcarb/?utm...

dolphin5 profile image
dolphin5

The question is: what will it take to help doctors to get over themselves and move on????

It seems to me that the evidence is there. We all know it, scientists like Diogenes have shown and explained it, and many of us have demonstrated the vast differences that can occur when we manage to get hold of the right type and level of medication.

Scientists once upon a time learned that the earth is not flat, so how can we get the medical profession to understand that TSH is not the best indicator of health for everyone, and levels of FT3 are vitally important (and different for each of us)???????

Aren't they ethically obliged to make patients better, not worse?

jackiehyland profile image
jackiehyland in reply to dolphin5

I know they know what there doing is wrong and I also know if they admitted they couldn't cope with the law suits it would wipe them out they wouldn't exist anymore but lawyers and patients would be a lot richer !!! There are always winners and losers and were the losers unfortunately both monetary and health and they don't care!!! It's a conglomerate financial pot and were on shit end of it !!!

crimple profile image
crimple

I still keep asking if a healthy thyroid produces T4,3, 2 and 1 + calcitonin why do they (medics) think it is OK to just give us T4 and how can a pituitary hormone test be "the be all and end all" of diagnosis for being hypo? (TSH)

As regards non testing of T3 by NHS- (DIY Health in my opinion- nothing national about it- just a postcode lottery) if they are not going to give us T3 on a scrip then why test for it in the first place.? Oh yes what is that mantra re genes etc about the survival of the fittest. Before NDT became widely available hypo patients just died!

I think the powers that be have decided they need to get rid of people because the NHS simply cannot afford drugs/ supply sufficient healthcare people help us on the road to health. There was mention some time ago about patient health being a partnership between doctor and patient! Don't know how that fits with T4 only and totally ignoring a patients symptoms in favour of unreliable test results.

Sorry for my jaundiced views. Just hit another brickwall in my quest for better health.

jackiehyland profile image
jackiehyland in reply to crimple

You wouldn't mind so much if they were honest about it and said we can only treat you with levothyroxshit but you could do with some professional advice from an endocrinologist and you may have to pay !!!! As your blood tests are showing deficiencies in other areas that I don't have the professional knowledge of !!! I mean you wouldn't call a plumber to do an electricians job would you ! I wouldn't mind paying would you ?? If your referred to an endocrinologist by your doctor your still with the n.h.s if you go private you will get the full picture all the blood tests and a.proper diagnosis they wouldn't be allowed to say you needed medications that you didn't they still have ethics they have to go by and when you bring the evidences back to your gp he won't be able to belittle and be condescending towards you but he still won't be able to treat you either so where would we all go from there?????? I think everyone on this website should all go to see an expert endocrinologist if they think there all being under treated on T4 only it may cost a few hundred pounds but it would prove what the n.h.s is doing to us is wrong even maybe seek legal advice for wrong treatment and wrong diagnosis of our conditions there always advertising for people to come forward if they have had n.h.s errors !!! The soft approach of going through the proper channels the conferences at the Scottish parliaments have held no water which I have also noticed is mostly men again ! They are stubborn and will not listen and yes they will get a so called expert in that will be a immunotherapy treatment only so everything is back to square one again it's all about cost !!!

HarryE profile image
HarryE in reply to jackiehyland

It's not just an NHS problem though, it's a mainstream medicine problem. Most endos who work privately also work most of the time in the NHS. The advice given is often exactly the same. It's the profession that's the problem, not the NHS per se

silverfox7 profile image
silverfox7

Not one likes to be told they are wrong and have egg on their faces but I got a breath of fresh air the other day. I few days ago I asked if Letrozole has an effect on thyroid meds-I'm taking NDT so I went along to the hospital that prescribed that and asked to if I could speak to a pharmacist.

Got over the first hurdle and I was asked to explain in greater detail so I did and was told that I would need to have my bloods done. So I said that have been refused a FT3 test and on NDT so that was important to me and why my thyroid is managed elsewhere by someone who does appreciate this.

So she then asked my how did I know about T3? I missed my opportunity to say many thyroid patients are more cued up than their GP because they need to be but instead said my late husband wasa science based researcher and lecturer in Endocrinologist and I was a physiologist so she said that explained it but surely it's the said blood test whatever you are taking. I said yes but it's important to get everything tested, not just TSH or TSH plus FT4 and if you are taking any form of T3 then how you interpret the results is different. So she asked about that and then thanked me for explaining and that now she understood that asking me for a local blood test was a waste of time and actually said it's down to cost that the full labs aren't done. Yes we know that but we are told because it's not necessary. Made my day!!!!!

Treepie profile image
Treepie

I am not wholly convinced by that reason.There was the OZ doc who took years to convince the medical establishment on the cause/ treatment of stomach ulcers. I think it is more to do with the silos of supposed expertise and the way ideas become fixed . How long did the idea of a flat earth last!

helvella profile image
helvellaAdministratorThyroid UK in reply to Treepie

No later than 194 BC! :-)

See my response on this thread:

healthunlocked.com/pasoc/po...

Bluecat101 profile image
Bluecat101

May have been said but many Labs refuse to test for T3 - and dont tell you - it just doesnt come back, as GPs dont like prescribiing on cost (total greed by Pharma) and can be bought privately in Greece or France cheaply

humanbean profile image
humanbean

I had endometriosis that took about 18 years for diagnosis, then it was ignored as if it was of no consequence. Most doctors believed I was telling lies about even having the diagnosis.

Then the severity of it was found when I had a hysterectomy. But doctors still thought I was making it up after my surgery because medical record keeping is so utterly abysmal.

They were dead keen to throw anti-depressants at me, but never prescribed pain relief.

I absolutely detest the medical profession.

loueldhen profile image
loueldhen

So depressing to hear Dr Amanda Doyle (co-chair of NHSCC) saying (You and Yours Radio 4 yesterday 26min 50sec) hypothyroidism has vague symptoms which can be caused by other issues but that there are easily measurable blood tests for hypothyroidism and we treat to blood tests (I think she meant blood test singular there)!

You may also like...

Why liothyronine treatment is opposed - it's the money, folks

prescription purely on the basis of cost/patient - little said about patient reaction, rather a...

help please on changing adrenal medication

regarding the increasing from one adrenal medication, to a new one. my previous adrenal supplement...

Medication changed based on blood results

told my thyroxine levels are too high and my medication is being reduced from alternating 100/75mcg...

Why do labs change reference ranges...?

in the past ten years: the reference ranges for TSH have gone from 0.35-4.9 to 0.35-4.5...

change in medication

underactive thyriod and I have had no problems with medications or blood tests results until last...