I thought people might be interested in what was said [please don't shoot the messenger!] at the conference on 25 Jan 2020. Apologies for length of post.
First, of the attendees, the large majority were hypo and only a few were hyper. Of the hypos, slightly more had had to test fT3 privately than had (ever) had it tested on the NHS. Of those on T3 meds (roughly a third of the total audience) only 4 got it via the NHS.
The conference was led by Dr Kristien Boelaert ["KB"], based in Birmingham, who chaired the NICE guideline committee. it would be fair to say she had a rough ride from a reasonably well-informed audience.
We fell out over testing and the over-emphasis on TSH. The audience understood that "step 1" is to do something quick and cost-effective that works for the general population, but we wanted "better" for those for whom TSH on its own just isn't enough (or good enough). KB didn't seem to understand that what she intended to be guidelines, and interpreted generously in response to individual patients, are - in practice - treated as absolute rules. She prescribes T3 herself and has clearly had to fight with her colleagues on the committee who are strongly opposed to get anything at all included with reference to T3. In particular, things I noted that she said were:
* fT3 is not stable enough to warrant testing
* there is insufficient evidence that fT3 testing benefits the wider population OR that full testing for those for whom TSH testing isn't enough is worth putting in the guidelines
* the NHS does not offer NDT because there is not enough evidence of its benefit or long-term effects [notwithstanding that for decades this has been the only treatment]
* because NDT is not recommended there will be no UK testing of its efficacy [which seems a bit self-fulfilling]; testing in other countries doesn't count
* the benefit of T3 meds has not been consistently demonstrated in research; it is not beneficial at "population level";
* however KB is aware that her own patients, treated with T3 meds, get better - but this is "anecdotal" and not evidence to support T3 meds.
* KB accepts cost (of T3 meds) is a factor in the NICE position
* KB does not see any benefit in testing vit D, vit B12, ferratin and folate alongside TSH - for hypo or hyper patients as there is no research that supports this [I was sat next to a professional nutritionist who I thought might explode ...]
* there is evidence that having suppressed TSH has long-term health implications, notably re bone density and irregular heart beats, but in response to an audience question on exactly what this increased risk was, KB conceded that the research was a small sample of people who were in an old people's home [not sure why this then counts as research rather than being "anecdotal"!]
T4 meds are the third most common prescription in the UK - and no 1 in the US!
Interestingly, our audience included a Sottish MSP (with thyroid issues) and Guardian journalist who is particularly interested in hearing from people stripped of NSH T3 meds.
Other attendees please add anything I've missed or you interpeted differently.
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fuchsia-pink
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Nothing like a room full of agitated hypos! I’m doing the one on the 8th feb. Thank you for taking the time to update. Mind boggling that KB thinks they will be treated as guidelines and not rules. I checked the NICE website after the thyroid trust tweeted same yesterday. Look like rules to me. Patients have enough problems trying to get GPs to abide by guidelines let alone go beyond them without so much as a hint in the guidelines that there could be further considerations.
Over a hundred thousand people on this site alone.
And yet testing and trials are old, small sample and wholly inadequate.
Bizarre.
To be fair, on the hyper part of the conference, KB said she was gob-smacked (I paraphrase) that there was no register of UK people who had had radio-active treatment - and that she wanted more hypo research to be done. One of the admins then commented that she wouldn't want to be in the "control" group of any new testing ... and I suspect she's not alone
There used to be a requirement for GP surgeries to maintain a "Thyroid Register". The idea seemed to be that they could check that all entered on it were seen at least once a year for re-test - but that was abandoned years ago.
I can see that computerised medical records systems can/might make a big difference, but only if they are used.
Helvella, well I have been having Levo for over 20 years now, and finally when I ask for my test results from that period, they can find only 4 results in total and then they don't have any info about what dose of thyroxine I was having at that point. There is no hope of being able to trust GP's to record anything whatsoever and definately not a thyroid patient, which seems to be very much the Cinderella of diseases.
Many thanks fuchsia-pink for taking the time to write this informative summary. For the majority of us who, for varied reasons, are unable to attend such events, it is really good to hear what the outcomes are.
Is it any wonder that so many of us have to rely on this website for our information when the people who supposedly have the ‘power’ are so biased and uninformed.
One wonders what research they do and who with!!! The data seems flawed to me based in the comments we all read.
You know, from what you've written, it's absolutely clear that Boelaert is completely unaware of (or doesn't' want to admit knowledge of) the work we and others have done on showing the absolute need for comprehensive (FT4, TSH) testing for hypothyroidism per se and (FT3 mainly + FT4 and TSH) for control of therapy. 1)" FT3 is not stable enough to warrant testing". What on earth is meant by that? What is the evidence? TSH by being supersensitive is by that argument even less stable on testing. FT4 and TSH also depends on dosage, compliance in taking regularly, and the effect of underlying nonthyroidal illness. 2) NDT is not offered "because it isn't licensed therefore it's no good so we won't do it, so there!". 3) No one is saying that T3 therapy is needed population-wide. It is only for those who can't get along with T4 only. 4) this is proved by her admitting that some (note, some) patients do well on T3. She says that this is anecdotal - (BUT every patient is an anecdote and requires treating like an anecdote i.e as an individual and not as one of a class of identical robots using robotic guidelines). 5) The relationship between adequate therapy and vitamin etc levels is well known. 6) the relationship between suppressed TSH and AF or OP is based on frankly poor research and whatever links have been found are small in addition to the much more frequent causes. Boelaert has brilliantly exposed the poor intellectual quality, the fundamental ignorance and the incuriosity of the UK thyroidolgists. They even contradict themselves without having the slightest clue they are doing it.
a) we need some proper testing/trials [if you can find controls] for the relatively large number, in absolute terms, that don't do well just on levo - and that this should include optimising nutrients;
b) and a proper protocol for dealing with such patients [I tried ... as evidenced above but don't accept the reply]; and
c) it would help if there were a "standard" for taking tests [on this forum we all know exactly what it should be] - so that the fluctuations in fT3 readings (and fT4 and TSH) and interpreting them are minimised.
Not sure how you get the powers-that-be to do it though, particularly as it was evident that so many endos are fanatically anti-T3
From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001[3].
Population of UK 65.64million in 2016 - 3.01% is just under 2 million people
The regular admission that “10-20% of patients do not recover on just levothyroxine”
I was very annoyed by this presentation and had to work very hard to stay calm. A confusing factor is that the Guidelines address investigation of thyroid disease but only treatment of primary hypothyroidism. ‘Thyroid disease’, specifically hypothyroidism, is not defined. Is it disease of the thyroid gland or any disorder that affects thyroid hormone action? It seems to be the latter because secondary hypothyroidism is considered. However, the Guideline fails to acknowledge other disorders such as genetic resistance to thyroid hormone (RTH), endocrine disruption or subnormal TSH secretion. When a patient presents with signs and symptoms of hypothyroidism, the underlying cause is unknown. I got the strong impression that KB does not acknowledge of any form of hypothyroidism other than primary or secondary hypothyroidism.
KB claimed that diagnosis cannot be made on the basis of signs and symptoms citing The Colorado Thyroid Disease Prevalence Study citeseerx.ist.psu.edu/viewd... an interpretation of data gathered from a 1995 health fair published in 2000. It arbitrarily defines hypothyroidism based on TSH and total T4. It claims to compare symptoms to ‘disease state’ where a hypothyroid disease state is elevated TSH with low tT4. The data measures TSH not disease state. It reports ‘The association between disease state and percentage of reported symptoms was statistically significant (P<.001), but weak (ANOVA, r2 = 0.003; Pearson coefficient, r=0.03).
There are many faults with this study: -
1. The association is NOT between diseased state and symptoms. They measured TSH and symptoms.
2. The result shows a very poor association between TSH and symptoms, even in the patients deemed hypothyroid by blood tests. The Pearson coefficient of 0.03 shows a feeble association. As I understand it a perfect correlation will give a result of 1.0 and no correlation 0. (@diogenes can you confirm I’ve understood this). The P value < .001 looks good but its easy to achieve statistical significance with an exceptionally large study group.
3. The symptomatic participants are unlikely to have elevated TSH, it will have been tested by their GP and at previous health fairs. For most in this survery hypothyroidism will not be due to thyroid gland failure.
4. The authors misleadingly report correlations and likelihood ratios between hypothyroidism and symptoms. The data compares TSH with symptoms and find TSH is a very poor indicator. This result is inverted to give the misleading impression symptoms are a poor marker for hypothyroidism.
KB firmly stated she would not treat patients with normal blood hormone levels. Strangely she will prescribe doses of levothyroxine or liothyronine that take the hormone levels a little way out of their reference interval which implies she accepts the patient was hypo when they had ‘normal’ levels.
KB is not in favour of measuring fT3 because ‘T3 is a short acting hormone’. I don’t understand what is meant by this. T3 is the thyroid hormone (T4 has very slight activity). T3 is not particularly short acting compared to many other hormones. This is not a rational explanation. I believe many endocrinologists refuse to measure fT3 because it will reveal the complexity of thyroid hormone action and they will have to work harder.
The Guideline does not recommend fT3 because of cost. This is a dishonest statement, the incremental cost of adding fT3 to an assay is around £1. At the very least it makes sense to measure TSH, fT3 and fT4 at first presentation as a marker and to confirm the axis appears to be working normally. TSH is useless if it does not reflect fT3 and fT4 levels.
Note that NICE guidelines are not allowed to consider costs to the patient or social services, cost analysis can only consider direct costs to the NHS.
KB refuses to test vitamin levels. Some deficiencies such as anaemia, vitamin D and B12 are common in hypothyroidism. If the patient is not doing well it makes sense to check these to see if they explain remaining symptoms.
In general, this Guideline is awful, the level of evidence required is adjusted to suit the whims of the committee.
At least it just says there is a low level of thyroxine in the blood - which is a reasonable observation.
"Hypothyroidism", as you say, is effectively undefined. In practice, it is all too often high TSH without regard to anything else.
There are three stages, are there not?
A thyroid that is not putting sufficient thyroid hormone into the blood.
A bloodstream that is not carrying sufficient thyroid hormone. (In case that sounds too repetitive, that would be the situation in someone on inadequate levothyroxine.)
Cells that are not getting sufficient thyroid hormone. In any form of resistance or impaired sensitivity, that is the case regardless the adequacy of the other two steps.
(Purposely used the phrase "thryoid hormone" to keep the words T4/T3 neutral.)
I use the term hypothyroidism to mean insufficient thyroid hormone activity. When a patient presents you do not know the underlying cause and there can be more than one. I also tend to use the term hyperthyrodism to mean any form of excess thyroid hormone activity, I know the correct term is thyrotoxicosis but it is at least theoretically possible to have excess hormone activity with normal blood levels. I often chicken out and refer to hypo or hyper signs and symptoms.
Invariably hormone is getting into the cells but its action is disrupted, a technical point but important for researcha and deflecting any criticism.
I agree with your usage as it is the effect on our bodies that matters. Who cares how much is swooshing round if it ain't working?
But all too often the term is applied simply to a thyroid that is claimed to be producing too much, or too little, thyroid hormone without regard to impact.
Very interesting read, but my God it's like some of these doctors live in the dark ages. The amount of patients duagnodsed with hypo or hyper (I dread to think how many go undiagnosed and suffer in silence) in the UK surely warrants comprehensive studies afterall aren't the NHS guidelines still based around research from the 70s?
If only big pharma and doctors could spend as much time, money and energy on thyroid issues (which largely require lifetime medication) as they do with diseases such as diabetes or impotence (which in many cases can be reversed with diet and exercise). I find it such a cop out when claims of 'no studies support xxx' when the symptoms of thousands of patients nationwide are in complete contradiction to these 'ghost' findings (surely that alone would be reason enough to update research?).
I don't know how many professionals I saw before I diagnosed myself. I was told I had this or that. Even went under anaesthetic to remove a 'web' which I didn't have and when I finally diagnosed myself with hypo I assume the 'web' was actually a swollen thyroid gland.
I was pretty much in the same boat. I could (should) have been diagnosed years before I was. Not one GP picked up on increasing inflammation, creeping closer to type 2 diabetes among other things which all coincided with rising TSH. My GP dismissed Hashis saying I did not have it and it doesn't matter anyway until I got a private blood test which confirmed it. It makes me bloody cross how sick I was getting. Thank God for this forum though as I now feel i can fight my own corner, but it should not be this way. The NHS is failing thyroid patients
This couldn't possibly be due to the vast amount made by the drug companies who manufacture Levothyroxine and want to maintain the status quo! Why do any new trials which might ruin your market.
Considering that Armour is part of Allergan and that Mercury Pharma and Teva both supply liothyronine (at least in the UK), I don't think changes would result in those drug companies losing out.
I think the pharma companies would lose out. Adequate and correct treatment for thyroid disease that makes the patient well will mean that fewer blood pressure drugs will be prescribed, fewer painkillers for muscle and joint pain, fewer statins to lower cholesterol, fewer drugs for heart disease etc.
Over all medicines, quite possibly. Perhaps more of us would have other issues which just might be more profitable? Very, very difficult to estimate or, as it looks to me, guess.
But this thread was mainly about T4, T3 and desiccated thyroid in terms of thyroid treatments and that was meant to be the context. Some pharma companies would benefit from more widespread prescribing of the options other than levothyroxine monotherapy.
We all loose out when our experience of thyroid problems is not adequately recorded. Good research in any diagnostic group begins by understanding the experience of the patient group, especially emergence of symptoms to diagnosis and symptom resolution/quality of life once on treatment.
If NICE had stated categorically that we all need standardised comprehensive testing when thyroid issues are suspected and that in certain circumstances we should be regularly monitored, the ‘subclinical quagmire’, we would be gathering the data.
If you can diagnose depression with a drug company derived questionnaire the results of which determine whether you have drugs prescribed I am sure we could all complete a quality of life/symptom questionnaire alongside blood tests.
I understand that research protocols are strict to provide gold standard evidence such that NICE might just notice it, but our lived experience must be collected in a way to be meaningful. I was interested in developing a thyroid patient data base, so that we collect our data in a standardised format for our use and that might be available for those wanting to quantify the ‘anecdotes’.
"the NHS does not offer NDT because there is not enough evidence of its benefit or long-term effects [notwithstanding that for decades this has been the only treatment]*
It is lies, lies and more lies. The people making this statement are not and never have been hypothyroid.
The above phrase* - often is this misinterpreted by those who have never, ever taken NDT and who listen to 'misinterpretations' from those who are not scientists and why was it used since 1892 and from then on we didn't die a horrible death? It actually restored health and that cannot be denied.
In order to get NDT withdrawn, why did they have to make False Statements to do so and despite a Rebuttal from a scientist/researcher which they ignored completely. Even though he sent three yearly reminders for a response before his untimely demise he never got a response.
Also patients who were well on NDT had it withdrawn and caused panic amongst those who took it. It also forced people to either remain unwell on levo or trying to source their own NDT from abroad.
We have to have options as some people cannot recover on levo, but can improve on options, i.e. T4/T3, NDT or T3 only.
The Scottish Parliament have agreed that options can be prescribed to patients for whom levo doesn't improve their health. Options are T3/T4, T3, or NDTs.
First of all, the Professionals didn't like the fact that many patients were asking for T3 or NDT to be prescribed and who were constantly unwell on levothyroxine and many lost their livelihoods or marriages.
1. Doctors poorly trained ( (I personally am proof positive of this fact)
and seem to have no clue about diagnosing by clinical symptoms nor about treating patients who have hypothyroidism. For instance their insistence that a TSH within range is fine: stop increasing dose because results are 'in range' whilst ignoring the clinical symptoms.
2. They know none of the clinical symptoms and are apt to prescribe 'other than thyroid hormones' to try to control symptoms, i.e. anti-depressants, pain relief; and anything else without checking FT3.
3. Wouldn't you expect the 'professionals' to be aware that it is T3 which runs our whole metabolism from head to toe T4 being inactive?
4. I will never forget the experience of levothyroxine - something I wouldn't wish on my worst enemy.
5. Neither will I again experience being undiagnosed and doctors insisting I had 'this or that' - even undergoing anaesthetic to remove a 'web - which was non-existant. None could diagnose a patient just by listening to them, which is what they used to do before blood tests were introduced.
6. If a doctor took your hand when you went in for consultation, it told them if quite a lot i.e. was body temp was low etc- (not normal) .
When your baby is ill, mothers are very aware they're not well just by babies' responses.
Dr John Lowe stated that it was due to 'monetary incentives' to the professionals to prescribe levo by Big Pharma who could see an opening for their companies to get monetary rewards plus, of course blood test costs ( the reason that levo became No.1 - which is T4 alone).
NDT contains a variety of hormones and is made from animals' thyroid glands and not synthetic hormones.
What is the worldwide profits for levothyroxine and for the 'extras' some patients may have to take to try to improve their symptoms.? Also profits for blood tests?
Is it fair that those who can afford to pay a doctor to prescribe alternatives for them and those who haven't the werewithall who may lose their livelihoods.
"the benefit of T3 meds has not been consistently demonstrated in research; it is not beneficial at "population level" -
p.s. The last phrase rings a bell with me and a husband who had to rush about in the middle of the night to present me with ice-cubes wrapped in cotton so that I could wrap it around my neck to stop severe palpitations i.e. due to levothyroxine but which T3 resolved. It also prevented an operation as Cardio was considering putting an implant in heart to actually record what was happening but T3 was added to T4 and palps resolved.
Patients on this forum are fullproof evidence that the Rules are Wrong. We aren't machines and our bodies suffer unnecessarily when Rules come before Symptoms.
The whole medical system is wrong, instead of patching up the chronically ill (financially very lucrative mind you) find the true cause of illness most of which could be avoided if the right interventions were made in the first place. Stop the monopoly on medicines and medical care and print all scientific papers and make them freely available to the public who are providing the funding. Government medical bodies are infiltrated with people from big Pharma and indeed in the case of the CDC funded by them as well, there is no transparency at all and I don't doubt this applies to NICE as well.
According to Michael Mosley the lag between scientific findings and implementation by GP's is 10 years. Why?
fuchsia-pink thank you so much for this report that is clearly the work of corrupt and/ or uneducated imbeciles!! Do you by change happen to know the name of the Guardian journalist present? I am keen to push more media attention to this ridiculous situation... 🙏🏾💜
From what I see and read in the literature, the established physicians have the idea that the accepted paradigm (T4 only therapy, TSH must > 10 before treating) can be rescued by genetic analysis of the patient as to whether they are good or poor converters of T4 to T3. I have no doubt that genetic analysis gives some answers, but huge (£millions) efforts have been made in rats/mice to understand the details of how everything works. This is an academic industry! By this I mean that this huge sum and commitment distorts the way people think and forces them to maintain that genetic analysis will solve everything and rescue the paradigm. Unfortunately for them genetics isn't the whole or even the principal answer as we've repeatedly shown in 30 papers. This is what sticks in their craw, to the extent they deliberately ignore what we say and have shown, to legitimise the hugely expensive genetic anmial studies. In short we shot their fox, but they still won't believe because that disrupts grant giving and attacks reputations..
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Update on thyroid results and advice on hair loss
Blood testing when on T3 only
NICE and NHS Guidelines - Links to useful bits!
