I know you are aiming your post for Humanbean to answer.....but in meantime will comment. Doctors follow the reference ranges on the blood test results. They are very literal with this. If the test id lower level reference range is lower than NICE guidelines they just follow that. I think they rely on the labs to flag up if something is too low..... And of course labs only look at the reference levels of their particular tests.They really should marry the two together but often that's not the case. That's because reference ranges can vary from lab to lab. I think this causes confusion....
Doctors do need to be able to justify their actions if they depart from properly produced guidelines.
In general, they would be expected to be guided by the guidelines but they simply must be able to depart from them, if needed.
I think we have probably had more of an issue with doctors rigidly sticking to guidelines - both NICE and others, than departing from them. At least, when they do so thoughtfully.
Remember, you can always criticise a doctor for failing to follow guidelines.and that puts you in a relatively stronger position. Criticising them for sticking to the guidelines is much harder.
Every NICE guideline starts with the following, or very close, words.
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful
consideration of the evidence available. When exercising their judgement, professionals
and practitioners are expected to take this guideline fully into account, alongside the
individual needs, preferences and values of their patients or the people using their service.
It is not mandatory to apply the recommendations, and the guideline does not override the
responsibility to make decisions appropriate to the circumstances of the individual, in
consultation with them and their families and carers or guardian.
Doctors could argue that they already have guidelines in the ranges. If the aim of treatment is to make a patient euthyroid then being somewhere within the normal range means that this has been achieved a doctor could argue.
We see this with TSH range which seems to be the gold standard guideline for treatment.
My consultant was happy leaving me with a TSH in the 4s at the top of the range as this was within the norm.
The NICE guidelines for diagnosing and treating thyroid disease (link is in helvella's reply above) basically tell GP's they 'should' treat 'overt' hypothyroidism ~ (high TSH AND low fT4) with levothyroxine to get TSH in range (anywhere in range) and to avoid over treating the patient (sending TSH under range)
But for 'subclinical' hypothyroidism ( high TSH with in-range fT4) it only tells them they 'may consider' treating it .. (at their discretion) if symptoms of hypothyroidism are causing a problem.
even if TSH is over 10 in subclinical hypothyroidism , the wording is still 'consider' treating it, not 'should'.
So basically as long as they notice and treat overt hypothyroidism and get the TSH somewhere in range , they ARE following the guidelines .
They are well within the guideline if they refuse a request for a dose increase once TSH is anywhere in range.
The guidelines make a suggestion that a dose increase may be tried if symptoms are still a problem once TSH is in range .. but there is no requirement to increase dose if the GP decides the symptoms being complained of are not related to hypothyroidism... and they are again warned to avoid overtreating (sending TSH below range)
The only way a GP can be accused of breaking/ not following the NICE guidelines is if they fail to treat someone with overt hypothyroidism (over range TSH AND below range fT4) or if they overtreat . ie. allow a TSH to be continuously below range and keep prescribing the same dose .
in reality many GP's are willing to break the guidelines in our favour (albeit extremely reluctantly)...... lots of us are allowed to have a below range TSH after an argument (or 6)
One of the problems with guidelines generally is that doctors can, theoretically, choose which guidelines they follow. But in practice I very much doubt that is 100% true.
Before the abolition of CCGs (Clinical Commisioning Groups) they had guidelines they expected GPs to follow in the geographical areas they covered. Now, CCGs have been replaced with ICBs (Integrated Care Boards) and I wouldn't be at all surprised if they have their own guidelines as well. (But I think each ICB is bigger than the CCGs they replaced.)
It was this fragmenting of treatment/care that meant people could get T3 prescribed in some in some CCGs and not at all in others.
It also explains why certain operations (e.g. cataract operations and hip replacements) were easier to get in some parts of the country than other areas.
It does mean that patients can't be sure what their doctors' guidelines are based on because it isn't (as far as I'm aware) publicly announced. I've certainly never seen a surgery or hospital announce anywhere "We're following NICE" or "We follow our Trust guidelines" (I'm assuming hospital trusts have their own guidelines, just like the CCGs / ICBs do.) And I doubt many guidelines are posted on the internet in such a way that patients can find them easily. Although NICE is an exception.
Then there are sneaky things happening, like the "Prescription T3 Removal Clinic" in London. (I don't know it's proper name, but I know the real name doesn't give the actual patients a clue what they do.) Patients are referred there and are told when they get an appointment that their T3 Prescription will be removed because they don't need it, even if they've been taking it for years.
jimh111 has mentioned this clinic on several occasions.
If anyone can't find their local guidelines, and doesn't get anywhere by simply asking, put in Freedom of Information requests.
I believe that even the list of all local guidelines, the index page!, should be readily accessible. How else can you know that you need to ask for a copy?
I'm going to pursue this as my Aneurin Bevan Health Board website is based on Dickens' 'Circumlocution Office' from Little Dorrit!Round and round and round we go...
Which should have found instances of liothyronine on their website. None.
So I searched again with:
liothyronine site:.nhs.wales
(That is, the whole of NHS Wales.)
Five pages of hits including some for specific health boards. Which does rather imply Aneurin Bevan have no relevant documents on their website. But an FOI request includes paper!
Make sure you word it to get their guidelines or any guidelines or advice they would depend on - or something like that - to make sure you identify what any decisions are being based on.
In my area (far from London but similar actions as said clinic) this is going on here, plus the dreadful “we will stop your meds for six weeks to see where we are, with your permission off course”. Two people in the last week I know of and I do not know many people hypothyroid or otherwise - don’t get out enough!
Helvella's post on the impact of biotin on blood results explained to me how the chap at that clinic gets the results he wants. On my second visit (back in the days when he was just starting on his destructive journey), he sent me downstairs at the Charing Cross to do blood tests. I protested but he insisted. It was 14:30 and I had taken my vitamins, including vitamin B, that morning.
Guess what? My results were entirely different from those obtained early in the morning and after stopping Vitamin B for a week. He used the results to 'prove' that I did not need T3.
Of course, I ignored him and continue to this day with my Thybon Henning. Without it I would be exhausted and 10 - 15 kilograms heavier.
My warning to anyone seeing him. Do not do tests if he does the same to you. My suggestion is that you insist you have to be somewhere urgently and then do them at an appropriate time. (I did not insist enough - he said it would only take a few minutes. Little did I know his real agenda.)
I do not know for sure but saw an endo recently who told me the last hospital he worked for he was told if they mention NDT discharge them do not enter a conversation about it.
NICE is an independent body which provides guidelines - guidelines are by definition just that - not mandatory. Note that NICE is not used in Scotland where there is a different approach to clinical guidelines called SIGN.
As for your question “Who holds a doctor to account legally if they are negligent” in all the 4 countries of the UK that would be the GMC.
Only problem with that is that it’s doctors themselves who write the rules. So in the end the rules are written to protect doctors, not patients. Off course cleverly written, so it looks like the patients are the ones who are being protected. Evidence based medicine needs to catch up with good quality research. It’s an important reason why hypothyroidism for at least 130,000 people in this country are complaining about their treatment.
here's an example of how evidence based medicine works in practice :
the NICE guidelines on 'combination therapy' (T3 +Levo )..... there are about 13 'acceptable' studies (peer reviewed /double blinded etc ,ie. fitting the criteria for 'good quality evidence') which all came to the conclusion that that they found no benefit/ improvement over using Levo alone.
...... they found no benefit because they were ..... not looking specifically at the people who are most likely to benefit.. not the the ones who still had remaining symptoms on levo , (lots of the participants were people who felt ok on levo) ....... or they used the wrong sort of doses of T3 ~ too high , too low . too much too soon etc ..... or they reduced levo far too much when adding T3..... that kind of thing .. no one who knows how to use T3 is surprised these 13 studies didn't find any benefit.
There were very few if any studies available (at the time of the guidelines eg pre 2019) that were done in a way that would actually see any benefit .. eg look at correct sub group of patients , carefully titrate doses etc .....
So the guideline ( quite truthfully) says "we have 13 good quality studies that show no benefit ,, therefore we do not recommend routine use of T3"
Then when they write the guidelines they buried the vital word 'routine' in the detail at the back , you have to look really hard to find it ... so the impression given in all the summary wording boxes then becomes "we do not recommend the use of T3 because there is no evidence of any benefit"
et viola ... you now have 'evidence based guidelines' proving that T3 is no use. justifying why it is not prescribed on the NHS.
They asked for imput into the guidelines from patient groups , (which they received in great detail).. but of course did not include it (because it's not good quality evidence, it's anecdotal etc etc )
There are so few studies showing benefit of T3 because most of them were funded by people who, shall we say 'had no interest in finding any benefit'.... the universities / teaching hospitals are led by eminent endocrinologists who are in the main fundamentally opposed to T3 use.. and these are the people who can get the funding to run hugely costly studies that fit the criteria for 'good quality evidence'... so it has been said by some that Evidence Based Medicine should more truthfully ba called "Eminence Based Medicine"
Well I was just reading one of my old medical books for a course I was doing back in 1987. Davidson’s Principles &Practice of Medicine. It’s a resource used by medical students and doctors (although it’s probably all online now) and basically this is the info our advising endocrinologists are still using. It’s 36 Years old, (fifteenth edition) my copy. Whilst there might not have been enough research on hypothyroidism (maybe arguably the situation is even worse if there has been, which I am certain is the case, see TUK advisor scientist) in the intervening 36 years, IMHO it’s ridiculous that our medics are continuing to use this old information about treatment. Evidence based medicine was supposed to stop things like grommets being put in ears etc and wasting valuable money and resources in medicine but now almost the complete opposite has happened re: treatment of hypothyroidism. People are being starved of the correct medication which would bring about less co-morbidities, less stress on the NHS, less stress on the welfare system, enabling ‘some’ thyroid patients who do not do well on current treatment to have a life, contribute to their families lives, contribute to their communities, and basically contribute to the GDP. It’s a false economy.
This does of course raise the question what is “good quality research”? Firstly you need to know something about research, including the politics involved (which I will not comment on). Some of the research I have read by some of our leading lights in endocrinology might squeak you through your first degree but less likely to get you a higher degree, never mind a doctorate or professorship and yet some of these guys are lauded. There are just huge gaping holes in the research. Indeed some of these leading lights actually write the ‘guidance’.
Another thing I discovered only yesterday on account of someone’s request for info about a particular endo made me look at the ‘classes and clinics’ which are set up for educating junior doctors in thyroid issues - the list was very long. However there was not one clinic on hypothyroidism on the list I looked at. ‘They think they have it licked’. That’s why. So current research is being ignored by ‘the powers that be’, so much so, that no-one is collecting even the most basic info upon which some new research could be based. A very simple example is nationwide no collection of T3 levels when blood tests are being undertaken. This would cost pennies and be an excellent source of information.
I fully sympathise with your thyroid treatment experience and like most folk I have my own story too; however I couldn’t disagree more about the function and role of the GMC, they are most definitely not there to “protect “ doctors and their investigative methods have left some suicidal.
If you want to know about drugs that doctors can usually prescribe if they need to, then this is the website to see (BNF for drugs to be used by adults and BNFC for drugs to be used by children, but anything I say about the BNF applies to the BNFC as well).
Don't assume that doctors could prescribe everything in the BNF if they wanted to. There are still various restrictions on doctors on what they can prescribe even in the context of it being in the BNF. For example, Liothyronine (T3) is in the BNF but lots of doctors can't prescribe it.
And also don't assume that they can't prescribe things that aren't in the BNF. They could if they wanted to but there is a good chance that legally they would have to take personal responsibility for having prescribed such a drug and if it went wrong the consequences could be severe for the prescriber - so such drugs are very rarely prescribed anywhere in the UK.
One of the things that I have found particularly helpful in the BNF is looking up entries to see whether a prescription is required or whether I can buy it without prescription in a pharmacy. If you look at the "Medicinal Forms" section of a drug entry then expand the information you will see that part of the information contains either "P in a box" or "POM in a box". P stands for Pharmacy Only i.e. you can buy the product in a pharmacy with pharmacist oversight without a prescription - theoretically a pharmacist might question you about why you want to buy such a drug, whether you've used it before, etc and may give you advice about possible consequences of taking it. POM stands for "Prescription Only Medicine" and you can't legally buy such a drug anywhere in the UK without a prescription.
Before I knew about the meaning of the P and POM in the info in the BNF I would have assumed that some things I wanted would require a prescription. For example, years ago I thought all iron supplements had to be prescribed - but it isn't true, and finding this out helped me enormously.
The BNF also gives you information on doses, side effects, possible interactions, and other info.
In my experience, doctors protect doctors. The GP reffered me to another hospital for a second opinion. Different doctors have different approaches and the Trust has different guidelines. The leading doctor at the second hospital rejected this referral by writing to the GP saying that I should return to the hospital I was before. (Why?) The reason for the second opinion was that the hospital did not do all the tests they should have done to find the cause. Instead, I was diagnosed with Idiopathic... . The reply by the letter from the GP to the leading doctor at hospital was that I had the right to be examined and fixed in the hospital of my choice. But the doctor from that hospital kept sending me back to the previous hospital saying that there are great doctors. The GP ended up sending me to another hospital of my choice but he is no longer there to fight for me...However, not all GPs are the same. My experience is diverse, from GPs to specialist consultants. Some of them want to get rid of me and some really do what they can.
I have fluctuating subclinical hypothyroidism with symptoms and negative antibodies for last 2 years and an ultrasound report suggesting Hashimoto's thyroiditis. I discovered the fluctuating subclinical hypothyroidism by coincidence through frequent private blood tests as I had been unwell for over two years and the NHS blood tests I had done several times were fine at first, apart of the iron defiency. (They aren't anymore... )
Recently, two endocrinologists at two different hospitals told me that hypothyroidism does not cause iron deficiency or anemia, and one said that with mildly elevated cholesterol, the TSH level must be above 50 and that the ultrasound report of the thyroid gland is normal...
From what I have gathered from my symptoms and blood results over the past 3 months, my cholesterol tends to go down over time with normal TSH and up with elevated TSH. From the literature, a heterogeneous thyroid gland is caused by an autoimmune disease, and a hypoechoic one suggests Hashimoto's thyroiditis.
So I think the guideline should take into account all patient cases, or if not, the treatment should be based on the doctor's common sense. In every trial study, there is a majority, but also a minority that differs from the others. (No individual has exactly the same reaction and symptoms. When you read medical journals, it always says 1% 2% or 5%, which is different from most.)
WOW ... someone else who has been keeping track. I am so proud of you. Good luck. My problem is, I feel brilliant. No systems, nothing but abnormal TSH ... which can be explained but no one will listen. Take a tablet, feel horrible, but that is normal. I would rather feel good and quit the circus and physician heal thyself, or something like that. Funny how many people on here are really NOT doing well on thyroid drugs. Yet, are told that is what is wrong and look, the bloods show it is thyroid. Here, take this... makes me cranky.
I have heaps of little alphabets behind my name (animal sciences mainly) and believe me when I say no one is held accountable unless TPTB want it to happen. I recently had a GP tell me to take my out of date thyroxine at an increased dose due to TSH being high but T3 and T4 all in normal range. I explained to him that it was out of date and please re prescribe and his response was 'its a synthetic, it doesn't go out of date", okay, I agree with that, but was it kept in the fridge was it store properly etc, all things he could not possibly know. He knew nothing of my background, or I was fairly well overly educated than him. He was the hospital over seer for a surgery that I desperately need (bent Harrington in my back impeding on my spinal column - horse fell on top of me - making me unable to walk sometimes). He is the one that makes sure that I don't sue the hospital and this site correctly pointed out that YES it was a valid point but... I am one of the few (?) who don't tolerate thyroid meds at all and ended up in hospital because of his advise. No recourse, no apology. The next week another doctor and ENDO put me on a scripted new thyroid med and same thing, back in hospital, can't breath (which she told me not to present unless I had a heart attack or breathing difficulty - I had to endure the side effects and take antihistamines to counter them). Stupid me. I know. But, I thought walking was the end all be all of life until I realised, this drug would kill me and I would not have a life, so ... my choice. Problem is that these are people we trust with this precious thing called life. I know a lot of things most people don't and messed up big time, what about my neighbour, or the older woman down town I see getting worse daily and can't help. Shameful. No ethics anymore. I took an oath when I got every single one of my doctorates to do no harm, and use to be proud of what I did. I no longer am proud of what I did. I am ashamed that I allowed the bullies to use and abuse me and get away with it. I just walked away after my work was stolen, plagiarised and morphed into something that horrifies me. I don't trust many people and doctors are high on my list these days. Yes, you can present you issues to your ombudsman and make a complaint with the medical boards, the hospital, the surgery. It may not result in an immediate action, but after a few more complaints TPTB will take action. The doctor will be sanctioned put on notice and if severe enough fired from the surgery or hospital that they work at so write write write. Do not allow these people to treat you as if you don't matter. YOU DO MATTER and your life is as important if not more so to those that love you than his or hers is. Shameful care of a doctor is unforgivable. Be safe. Kindest Regards
Wow stckdg! Thank you for putting all this forward. Just for these past few weeks I have been feeling a bit more like my old self. Whilst I do not feel so overwhelmed with this type of information, I do feel something is deeply wrong with our society. This forum seems to be almost the last bastion of caring. I hope you get a chance to feel better very soon.
I sympathize with you. I feel betrayed by the medical care system, the people who should be taking care of us first. I feel like we should do something about it, like when the head endocrinologist misinformed me about the symptoms (a doctor should be very familiar with them) and denied my problems and the evidence of my results and how it affects the whole body. Take care!
Smiling .... back at you too. I have now added Thurga to my diet ... laughing ... literally laughing. White Cedar tree. The birds love it and the bees can't keep off of it so I looked it up and found some amazing things going on with it and so ... out comes the distillery and my husband can go find fuel for his cars/bikes elsewhere now. If I don't blow us up, it should be interesting .... still laughing. I do know what I am doing, or use to, so it should be safe (enough). Ethanol isn't all that dangerous and what he doesn't know (right now) won't hurt. I will get him to replace it when I run out or he does.
On a serious note .. all kidding aside, amidwesternerdoctor@ substack.com (I don't know if I am breaking any rules by recommending this read or not) might be interesting reading for you. This man is brilliant and HONEST, a man I knew years ago and admired greatly.
Listen to your body, it will tell you when something is wrong. Your 6th sense will tell you if you are going on the right track and the b ... s... metre will tell you when someone is peeing on your leg and telling you it's raining.
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