Now I understand my doctors approach!

[0Daisy0]

Many of you have probably come across this in your quest for knowledge - but it gave me a wry smile.

british-thyroid-association...

[TraceyLE]

Scary - but yes it does explain a lot sadly :O(

[Hennerton]

Worrying. No wonder there are so many of us on this forum!

[0Daisy0 in reply to Hennerton]

Yes - I find it worrying - but I also think it will help me understand my doctors position and maybe find a way to work round him (other evidence, advice here etc). Here's hoping!

[shaws Administrator]

It's well seen that the above body either has some members who do well on levo but they definitely don't seem to have any member who has been unable to go to work due to their clinical symptoms being ignored. They were probably diagnosed with a mental health issue or the myriad of other 'options'.

They try to frighten us about taking thyroid hormones when in fact before the TSH we were prescribed NDT according to clinical symptoms.

They also haven't read any Research which throws doubt on the reliance of the TSH.

[helvon]

LOL its safe to say that I personally will not be joining the antiquated British Thyroid foundation who has an atiquated president ( Graham Williams) who clearly does not listen to patients who suffer with the only treatment they favour LEVOTHYROXINE( I wonder who is lining whose pockets).

[rosetrees]

Goodness. That was written 5 years ago and it's clear they are running scared. It's full of contradictions and unsubstantiated speculation.

For example:

"(d) Patients with continuing symptoms after appropriate thyroxine treatment should be further investigated to diagnose and treat the cause."

We all know that doesn't happen. No further investigations are done. Ever.

".........Armour thyroid, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful."

Note the use of "may be". No evidence to back that up. No reference to correctly run trials.

If someone took that document to court, it wouldn't be worth the paper it was printed out on.

I'm surprised that a, so called, learned body would even put their name to such unscientific rubbish.

[Jane104]

This was revised in June 2011 but I think the salient points are much the same.

rcplondon.ac.uk/sites/defau...

[Taffhamster]

Grrrrr… Just grrrr…

[JudyS]

Well, it always takes forever for governing bodies and councils to take on board new research. We hear it all the time on the news: 'big discovery made, will change lives, etc, experts say we must be cautious and wait for further research'.

It alarms me, to be honest, when I hear about people taking the initiative and prescribing their own thyroid treatment. I have a little medical knowledge of my own (used to be an animal nurse) and it does seem dangerous to me. For me, it's not an option.

I'm not judging anyone. It's just how I personally feel. Everyone must make his or her own mind up about their own health and what to do. But since the thyroid is a gland which governs vital functions like heart rate, its hormones DO have the potential (if you're over-dosed) to cause damage.

[Hidden in reply to JudyS]

Where you are confusing this here is the concept that the method of self treating Hypothyroid is something NEW, it isn't. The methods people use are long tried and tested, by Doctors, and very successfully too, that was how it was always done. The concept that "TSH rules all" is what is new, although it has been around so long now, you would imagine that it would have clicked that it is absolute tripe by now - that's what is so worrying

You also might be confusing Veterinary attitudes with Doctor's attitudes... I have personally never noticed any similarity - I certainly have never been bull******d by a Vet the way I have been by a number of Doctors!

As someone who has been permanently mutilated by medical incompetence on more than one occasion, and live with the pain and consequences on a minute to minute basis; and never yet having harmed myself, I know who I trust more. I research everything I do rather meticulously, as opposed to Doctors who (on some occasions without so much as looking up at me) prescribe drugs which at best have potentially serious ill effects, and often little proven benefit. They certainly don't do research every time on matter such as long term issues, addiction and vitally important Cytochrome P 450 incompatibilities - (I do - by God I do: had a few nightmares with those problems!)

The biggest fool I have ever met, (and I worked in a Profession where I protected people from fools every single day of the week) was an Endocrinologist. What is wrong with them? Yes I have met other Doctors who were pretty useless too, worked with a couple even, but nothing like Endocrinologists. Met a small number of Doctors who weren't, but that is a very small number indeed. The concept of being humble isn't one you will see much of.

For some issue where I know *I* have been right and face no help at all (and that unfortunately has been quite a few situations) I have been able to find Doctors who agree and I have been able to use their services, (paying for them, naturally!) and even use them to obtain NHS treatment on the strength of that, but even then, the level of their knowledge is pretty basic and has often been less than mine as I have made sure I know what hey are going to be talking about - all that most Doctors do is follow guidance issued by others, (it is becoming even more restrictive as time goes on) and most don't have much understanding WHY they do it. Fortunate indeed if the Doctors who have designed that guidance have got it right, tough if not. In thyroid issues, it is clear that it is TOTALLY wrong, it strikes me as being hard to ever be quite as wrong again it is SO wrong. I certainly haven't come across anything quite as wrong so far. This is also something that is NOT nearly the same in some other countries - the UK and the UK's historically connected countries (eg. Australia and NZ etc.) seem to be those that have this problem worst of all.

For other issues, unfortunately I haven't been able to get any "professional" help... either because of my own financial constraints, or the availability of that help at any cost. In this country, unlike some others, the system is very "loaded," and it is not even possible for Doctors to step away from that system and deal with things in any other way. (As an illustration, I can remember my Father being told to drink milk for gastric ulcers, 8 years after the rest of the world was daily using triple therapy for Helicobacter pylori infection!) - that is not the same abroad - there, things can be quite different and I have found that their protocols and procedures may be very useful, "going it alone" isn't usually necessary at all as out there there are things that have already been made to work, the only hard part if finding the right protocol.

When faced with staying ill or getting better, and no-one will help and it is *blatantly* obvious what is wrong where there is a long history of that very problem and of putting solutions in place...... then the choice is yours, many of us have chosen to follow those historically well tried and tested means, and got better. So far I haven't been wrong, with thyroid, (or anything else either) as if I had, I wouldn't be writing this, back in 2009 I could not have written this (I certainly could not have been bothered!) and thought I would be long dead by now, I was so ill - For me, hypothyroid was a relatively minor part of what was wrong with me that was bleeding obvious from tests and symptoms, and was actually the last thing on the list that I needed to address to get much better, that was a couple of years later!

That doesn't mean it is for everyone, quite the opposite is is NOT for many people at all - for one thing you need to be the right sort of person, with the right level of technical background and academic knowledge and a researching mind, you also need to have a lot of applied common sense, and not be the type prone to just popping bucket loads of pills just to see what happens (and I have spoken to a few of them in my time!) You do things more cautiously even than recommended, so you don't find yourself in a dangerous situation - with thyroid you go low and slow - after you have double checked what you are going to do, if you go hyper, you don't go hyper much, and you soon drop the dose. For 80-odd years that's how it was done by Doctors, so there is a long history of it working.

[tegz in reply to Hidden]

I've only met one Endo but the reports from others made unfortunate parallels on the species.

I'm sure, from comments here , that it's not universally true -but there must be something in the state of art [lack of training in UAT complexities, overemphasis on Diabetes in clinics, low dietary awareness & overwork..etc] that sets a poor model of patient care.

[Hidden in reply to tegz]

Met my first at age 21, and the couple of others in the 30-odd years since have been even worse... whilst my opinion of Doctors generally is low to start with, it's not nearly as low as it is for Endos.

[vajra]

Ta Daisy and Jane. I wasn't aware that there were guidelines set out in such explicit terms - it explains why so many GPs are so cautious about stepping outside of them.

At another level it's perhaps less the guidelines than their mode of application and the de-facto handling of patients by the system that are the major cause for concern. The guidelines themselves if interpreted in a pro-patient and moderately flexible manner don't seem so bad:

1. The blood tests are not it seems held to be infallible (and it's accepted that the reference ranges keep on changing) - but so far they are (when read with symptoms) one of the best available guides to what's happening re. thyroid status.

2. T4 does seem to do the job for the majority of people suffering from PRIMARY hypothyroidism. (but more and more people seem to be presenting with secondary ?)

3. T3 and secondary hypothyroidism (conversion and use issues) are more complex, and do seem to require rather more complex and in depth work to sort out than simple primary hypothyroidism.

4. Symptoms seem to be regarded as a key input, as is the reality that different patients may need their replacement adjusted to different points in the TSH range to feel well.

5. Further investigation is stated as being required when symptoms are not eliminated.

It's the informal practices, working-professional-legal-bureaucratic culture and lack of patient care orientation that generally accompany the application of the guidelines on the ground that are to my mind by far the greater problem:

1. The guidelines clearly recognise that adjustment of TSH to a 'sweet spot' within the ranges may be required for individual wellbeing, but this seems rarely to be undertaken.

2. Despite this doctors seem to persist in informing patients with bloods falling ANYWHERE in the reference ranges that regardless of symptoms their thyroid is 'normal' - that their symptoms are down to something else. (the depression by default diagnosis for example)

3. The above (acceptance that TSH can require tuning for wellness) seems to conflict with the recommendation elsewhere in the same document that replacement should not be offered to patients falling anywhere within the reference range.

What about the many patients that previously and naturally ran a low TSH, but due to illness are now running an (for them) abnormally much higher number and experiencing severe hypothyroidism?

Why should they be condemned to limbo until their disease progresses to the point where they eventually drop fully out of range? (it still hadn't after 15 years of declining health, loss of career, an eventual thyroid cancer, a thyroidectomy and subsequently proven advanced auto immune thyroid disease and many other consequent conditions in my own case)

4. If GPs are professionally constrained to working within fairly simple guidelines (i.e. to screening rather than treating thyroid patients, then it seems superficially to make sense that referral to an endo or other higher specialist is required if the problem is more complex and holistic in nature.

Reports suggest however that endos typically don't deliver in this regard - that they don't demonstrate any particular expertise in trouble shooting symptoms and restoring health.

Personal experience (and that reported by many others) suggests the opposite - that they in fact tend instead to focus on the identification and management of acute disease, and to not see the restoration of health/elimination of symptoms as their responsibility.

Most seem to be as bound by the dogmatic interpretation of the guidelines regardless of symptoms as any GP too - which isn't much help to those that seem to require treatment outside of the stock blood ranges to get well.

5. The guidelines recognise that test methods and blood reference ranges are inconsistent, and in a state of flux. It's meanwhile no exaggeration to say that hardly a week goes by that doesn't see published more research that questions and/or undermines the assumptions on which EXCLUSIVE dependence on the T4/TSH protocol (and other practices in thyroid medicine) is based.

Why then do doctors persist in denying symptoms and instead on rigorously using the reference ranges 'their' lab provides as a cut off in cases when hypothyroid symptoms and/or related hormonal and other health issues are clearly present?

Why anyway when experience so clearly suggests that it's often not the case the insistence that one size fits all - whether that's choice/type of replacement hormone, blood values or whatever?

6. Why is it so often the case that when fatigue is reported that thyroid is considered in isolation, and in the narrow context of T4/TSH testing? When so often there are many other factors in play such as adrenal issues, life situation, mind state, diet, gut function, auto immune disturbances deficiencies and so on?

Why (much as in the case of the thyroid blood reference ranges) are the reference ranges for other tests (e.g. cortisol) set so wide that only acute illness generates a positive result? This depite the likelihood that much more moderate imbalances lead to chronic health problems?

7. Why do financial, legal, social, commercial and other constraints and dictates seem to play such a major but behind the scenes part in determining the type and extent of the treatment received by patients?

8. Why has responsible patient/doctor co-operation not replaced the outmoded authoritarian dictat by which medicine has traditionally been delivered? Especially since the former has the potential to greatly reduce workload.

9. In summary. There's surely a de-facto major falling between the cracks/avoidance of responsibility/refusal to recognise that emperor is wearing no clothes in play here.

There are some very capable individual GPs and endos doing a great and pretty comprehensive job, but if most GPs are limited to prescribing simple one dimensional treatments bound by guidelines, if endos/specialists are not set up to deliver the higher level/more holistic capability that treatment of especially secondary hypothyroidism requires, if naturopaths (the guys set up to put the time in, and to view this stuff from a holstic/systems point of view) are restricted in the treatments they can offer, and if the whole lot is hog-tied by an irrational body of socio/legal/self interested dogma - then what in heaven is the suffering patient supposed to do?

IF the guidelines, the body of medical practice and the total context within which they operate were truly effective ad working in practice then surely we wouldn't be knee deep on sites like this (both in Europe and the US) in people suffering from hypothyroidism and/or the myriad of metablic and fatigue related illnessess that are endemic today. Especially not people reporting major difficulties in accessing effective treatment - and at their wits end....

If in fact the guideline recommending further investigation in the event that hypothyroid symptoms are not eliminated was truly followed then surely most of the respondents on this and similar sites (who almost universally are wholly dissatisfied at their handling by the system) would not be here - they would either be cured, or be receiving effective treatment (from their original doctor, or from one they have been referred on to), or have been informed in credible terms that there was nothing to be done.

Yet somehow more and more seem to be finding that they have been left in limbo. They get screened, the fee gets harvested, and they get sent away as 'normal' despite protestations that all is not well.

Many have found that it's only when they drop the blind trust to take responsibility for themselves (usually while working with a doctor) that progress may become possible.

I'm another that feels that wholesale and uninformed self medication without access to testing and all it entails is unwise, but so many seem to be left in a place where it's accept whatever risk this entails or suffer on...

ian

[Hidden in reply to vajra]

Item 2... I don't think that is true at all. Thankfully most of those people (held generally to be 85% but I am sceptical of that figure) are not suffering OVERT problems, and that's not to say some could not be better with better monitoring and testing steering the amount and type of thyroid replacement. My own mother is a classic example... she has never been near to being right in 30+ years, (including heart failure which I have always blamed on undiagnosed hypothyroidism for many years, despite it being absolutely universal in my family) on the odd occasion she has been doing well, next time the dose gets dropped... it is dragged along by TSH based dosing that has never worked, but she is a believer that Doctors are always right, and always was, (and I am paying the price due toso when she has been plain lousy, it never gets mentioned - of course her yo-yoing weight alone always made it as plain as the nose on her face, (apart from a mass of other things) it always matches how well it was working! I do know two people who appear to have excellent results from T4-only treatment, so I am first to admit it does work for some, but

Item 6. How the whole concept of Adrenal function is interpreted by medics makes the issue of thyroid replacement seem like total perfection! Name another part of the body or a physiological system (no, name anything in the entire UNIVERSE!) that works on the basis of 100% working or 100% broken, then you realise it is just myth and legend!

Are we having this type of discussion about any other area of medical treatment? On this scale? No, I don't think we are, plenty of things are up for argument, nothing in medicine is clear cut but there is simply not the widespread dissatisfaction in other areas - the fact other countries do it all SO much better serves as an illustration of how wrong things are here.

[macangel]

Frightening stuff, and makes me so angry when I read these things from supposed 'experts'!! The tone of the article is so arrogant too.

[vajra]

I can't argue on that P - presuming that it's the (2) that suggests that T4 works for most people with primary hypothyroidism. TBH I was being generous and taking the document at face value - and bearing in mind that I have met a few that say they do well on T4 only.

What little documented research is about seems to suggest that that this may be the case too - although i'm highly sceptical of the so called programmes where patients are bunged T3 on the oddest of rationales and on a one size fits all basis - where the fact that they then report little improvement on T3 is allowed to suggest that T4 is doing a great job.

That's typically in those i've met in a scenario where their thyroid stopped working properly, they were quickly diagnosed (before developing all sorts of secondary problems), and bingo! It worked as advertised. Presumably because they had strong conversion processes. They typically can't figure what all the fuss about thryoid is about.

That's clearly not the case for the majority posting here, but i guess i'd presumed that was pretty inevitable.

I can say from personal experience that T4 didn't work for me, but i had a dodgy mix of conversion, auto-immune and other issues on the go, and had been hypo and getting progressively more ill for well over 15 yrs..

If the reality is that T4 works for hardly anybody at all then that would imply is truly enormous flim flam job.

Has anybody got any hard but unbiased data?

ian