Medicine is like a snail with only forward visi... - Thyroid UK

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Medicine is like a snail with only forward vision. It slowly progresses forward and leaves a slime trail of past mistakes behind it (shh!)

diogenes
diogenes

I believe that present errors in thyroidology diagnosis and treatment will eventually join in the long trail of discredited medical ideas. Blood letting for fever, diagnosis by stool, craniology, radium therapy for excema and other skin disorders and in the 20's regarded as a tonic and so on and so on. But of course the excuse is that that was then and we now know better. The tragedy is that they should have known better a long time ago. Never is there a searching examination as to why and how long erroneous ideas persisted in the face of contrary evidence, with a resolve to do better in future.

89 Replies
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Let's hope that progress doesn't take too long.

LindaC
LindaC in reply to Musicmonkey

'They' appear to have gone backwards... feels like the Dark Ages have returned yet with no Renaissance in sight.

m7-cola
m7-cola in reply to LindaC

Absolutely right, unfortunately for us!

Yeah it's not an excuse that "we didn't know", they did, they knew all along things are not quite right , but took the easy way.

It's upsetting, it's shameful. Recently I have read so many stories of thyroid sufferers and it breaks my heart these people have suffered for nothing. No valid reason their life has been ruined for years. So no, "we did not know" is nowhere near good excuse.

LindaC
LindaC in reply to Justiina

Hypothyroidism, along with CFS/ME, will be looked back at as some of the worst medical scandals, yet where its history is so rich, only to be disregarded by... plodders with scant insight and no understanding of the abominable suffering of some patients.

I'm from a City which was one of the forerunners to trial NDT - in 1891 - yet 125 years later in 2016, claim was made that 'Thyroxine' was discovered there - see link attached below.

It is however said elsewhere that "Thyroxine was isolated in 1915 (Kendall) (actually, on Christmas Day, 1914), its chemical structure determined in 1926 (Harington), and it was synthesised in 1927 (Harington and Barger). However, it took a long time before it was synthesized on a commercial basis." No matter re Thyroxine for some of us. :-)

That very Department celebrated Dr George Murray for having 'discovered Thyroxine' and today relies heavily, perhaps solely, on Levo... told me in June 2015, that Armour and T3 are 'rubbish'. One might think, living in a city of such 'pedigree', that a fortuitous spin-off might have been possible!? And I laughed and laughed and laughed...

Having been UN_diagnosed in 2015 by an endocrinologist saying 'rubbish', yet having a GP who'd prescribed Armour, utilizing NHS funds for IRO 6 years (first via Dr Skinner's Feb 2010 diagnosis), there was/is a clear discrepancy. Also, said to me May 2010, T3 "You will need for life" by Dr Peatfield, (I went for advice on stopping some supplements I'd been taking to try to 'fix' myself - he added 2 more to the list!): he provided details of the best T3 source. (Doing well on Armour, I delayed taking T3.) I would never even have taken HRT, as Dr S notes to my GP an unwillingness to use 'hormones', but being so ill I had to and Levo was no good at all to me (began sending me hyper, indicating I had enough T4!).

Since mid-2015, I 'stand accused' of having 'self-diagnosed' and 'self-medicated', something put in other referrals and, basically, this has curtailed other - worsening - healthcare needed by me. Worst thing, in 2003 and 2007 my TSH was 0.14, then 0.11 respectively just below their 'little ranges' and with many signs/symptoms + photos of before and after that you simply wouldn't believe. I was never told of those figures and I knew nothing of the thyroid. It took me to get a referral to Dr S in Feb 2010, as with seeing Dr P, nether could understand why I'd been left in that state for so long.

Apologies for length of this... I've a degree of cognitive damage where I can no longer precis.

ncl.ac.uk/press/articles/ar...

DippyDame
DippyDame in reply to LindaC

I think thyroid disease/ treatment scares "them" once a patient doesn't respond to levo!

Take care

DD

LindaC
LindaC in reply to DippyDame

It well seems that way, yet they have no excuse NOT to know about NDT and we have to assume that they can actually READ, if not SEE with their own eyes the patient sat before them. x

DippyDame
DippyDame in reply to LindaC

Absolutely! No excuse.

Hillwoman
Hillwoman in reply to LindaC

Quite. Careful clinical observation is no longer in fashion, and hasn't been for at least 50 years.

LindaC
LindaC in reply to Hillwoman

Drs S and P, used clinical observation + and did the best they could for their patients, that was good enough in comparison.

Justiina
Justiina in reply to LindaC

Like I said it's heart braking. I feel strongly towards anyone ignored and belittled and it upsets me.

But mostly it saddens me deeply, they are willing to throw people under the bus and push them into UNNECESESSARY misery. There is absolutely 0 reason to do so unless it's about coalition of pharmaceutical companies and health care. I truly believe far more doctors would want to see their patients to get healthy but are unable to do so because of the rules. They say it's called medical science yet it fails miserably to be accurate. It's not science if it's based on belief which it often is. "We believe thyroid patients are more likely hypochondriac middle aged menopausal fat cows who just love to complain", where is the science in that belief because that belief isn't based on any scientific studies but NDT/armour/T4 and T3 have been studied. Then doctors are told the patient is lunatic and as doctors are not the ones doing the research and to be honest are not that intelligent we are told, they rather stick with the authorities than listen to patients.

Like in my papers it says "patient BELIEVES she was hyperthyroid" when my TSH was undetectable and free T's were over the range. So the doctor made it sound like I wasn't hyper despite bloods. I believed I was hyper, having diarrhoea, high heart rate, sweating, sore muscles and so on. Apparently I convinced myself I am hyper and it happened because I believed in it so much. Damn I have such a strong mind that it also alters my bloods. There was no single mention about bloods supporting the symptoms, only that the patient believes in it.

So it's unbelievably sad to me, it aches, it squeezes my heart, its physical sadness I feel. I am filanthropic and can't stand people suffering when I know they do not have to.

And I often want to ask, why they deny eutanasia because they protect life but are willing to cause prolonged pain and suffer. What is the life they are protecting? What is it that they are actually protecting? We are supposed to have rights but what are those rights? Only rights to choose what they offer us and it isn't much is it? We have rights to either accept the current belief and continue to suffer or to deny the medication offered but have no other options. How's that any right?

It saddens me. I am not angry, I am sad and ashamed. Ashamed human being is such a predator, quality of one's life has 0 meaning and unfortunately too many thyroid sufferers are not able to even get more information, they do not understand everything.

I feel disgusted.

LindaC
LindaC in reply to Justiina

Thank you and I agree with much you've said!

They don't belittle me, at all. I too am angry for all those people out there who don't have my balls to stand up to them (in person and in writing). When we patients go to medicine when ill, there is surely the need to have help available to us in whichever field? We're not talking tons of ££, yet by appropriately treating hypothyroidism where necessary it not only saves the NHS money in the long run but can give patients a better quality of life. Surely that is the aim of medicine? This is not even costly hi-tech, yet look how T3 was hugely hiked in price when 'they' wanted to ensure it would become, largely, unavailable on prescription. Scoundrels, too good a word.

Indeed, it saddens me enormously but anger has a place. I am disgusted too, lives near-ruined for the sake of those "Boys Club Pet Theories'. Take care of yourself. :-)

shaws
shawsAdministrator in reply to LindaC

The fact that it was the British Thyroid Association who told lies in order to get NDT withdrawn and, as you state, it was the original life-saver for those who developed hypo.

One of TUK's Advisers wrote to them every year for three years the following Rebuttal, but they never did respond and Dr Lowe's died due to an accident.

drlowe.com/thyroidscience/C...

LindaC
LindaC in reply to shaws

I did not know that shaws, thank you, something else for 'the dossier'.

Yes, I recall that and especially the amazing work of the sorely missed Dr Lowe, who was so rudely ignored... likely they didn't understand what his papers said!

Hoping you are well. :-)

shaws
shawsAdministrator in reply to LindaC

I am good, thank God as it was thanks to TUK and the information provided (before this forum began). I had never heard of hypo before that but neither did any of the doctors I saw have a clue.

LindaC
LindaC in reply to shaws

Me neither shaws, I kind of knew from studying the hormonal system etc but, being young, never much put those bits together, having only seen some women with 'goiters'. Yes, there is so much information on here - a huge relief to many visiting. It was actually Dr Chris of 'This Morning' who 'diagnosed' me... pointing out the telltale signs and symptoms in 2007/08, with me sitting slumped in a chair with no clue what was wrong. I am so pleased that I listened to him. Take care, stay safe and well. :-) xox

Well said! It is sad to know that so many sick thyroid patients remain in that slime trail currently. I still find it so hard to accept that there has been almost no improvement at all in thyroid treatment since I was first diagnosed just over thirty years ago. The medical profession are even more entrenched now regarding the prescribing of anything else than their beloved Levothyroxine and still worship at the feet of TSH. It has to change at some point. I can't accept that it won't, as that would be crazy.

LindaC
LindaC in reply to PaulRobinson

Indeed, Paul. I've tried to precis above a minor part of the garbage to which I and so many others have been exposed. Dr Skinner had set up a World Register for hypothyroid patients, but his tragic demise put pay to that. Sadly, as was said by him, 'going to law' was likely the only solution. It remains to this day appalling and, by now, 'their' tendrils have slithered into so many pies to prevent hypothyroid patients receiving anything even approximating adequate healthcare.

Thank you for all of your work.

shaws
shawsAdministrator in reply to LindaC

Since Dr Skinner's demise his staff have worked hard collating all of their scientific work which they stated would shake the medical profession to the core.

I haven't heard yet if they've been successful in publishing it. I'm sure they would have.

healthunlocked.com/thyroidu....

LindaC
LindaC in reply to shaws

Thank you shaws.

...and well said you!

More than crazy Paul Robinson. It is barbaric and downright dangerous to only have Levothyroxine as treatment when there are other things that are helpful.

Concur! There should be a paper purely about TSH and how wrong it is for it to be used In the way that it currently is. No NICE/nice phraseology, just ... this is it! Here are the clinical study/research proofs.

I’m absolutely sure old school Thyroid Endo’s have not and will not be writing it anytime soon.

Just on TSH..

Tania’s conversation with Utiger, is a fine example of this..

DippyDame
DippyDame in reply to linda96

Have you seen this -

bmcendocrdisord.biomedcentr...

linda96
linda96 in reply to DippyDame

I have, I have a different vision of what such a paper would look like. It’d wouldn’t be so polite for a start off.

Iv had 50 years of this, and still can’t get T3 on prescription. Iv asked 3 Endo’s and several Drs.

I’m struggling to remain polite.

shaws
shawsAdministrator in reply to linda96

It is cruel (not the strongest word I can find) that we, mainly women, are prevented from getting options of thyroid hormones in order that we can recover our health and be back in the 'land of the living' - pain-free, symptom-free and with an optimum thyroid hormone replacement other than levothyroxine if we've trialled T4 long enough.

They should also restore the prescribing of T3 and NDT, after all it is the person who has hypo who is aware of the awful clinical symptoms and suffering daily but being given any other prescription rather than decent dose of T4/T3, or T3 alone, or NDT.

I should have included that my snail is myopic.

I just did a search for the most prescribed drug in the US. Although answers varied a little the answer is levothyroxine. Searched for UK and levothyroxine was number two. If I changed the search to world levothyroxine was number four. That tells me that Big Pharma influences treatment for all of us no matter where we live. Incredibly sad.

shaws
shawsAdministrator in reply to Iliketokayak

One of thyroiduk's Advisers (now deceased) stated that endocrinologists and doctors in the USA were paid to prescribe levothyroxine by the Pharmaceutical companies when it was first initially introduced.

Those who cannot recover on it have to have options.

I had constant palpitations especially during the night on levo when I had to wrap an ice-cold towel round my neck and sip ice-cold water to try to reduce them. My husband had to get them for me and I don't know how people who live alone manage when you cannot even get out of bed due to severe palps.

The cardiologist was also puzzled and was thinking of putting an implant in my heart to 'see what was going on' but just at that time some T3 was added and I dropped T4 after a few weeks and every reduction in dose of T4 the more palps reduced till I had no palpitations any more.

They don't seem to understand that some people don't find levo suitable but find it impossible to trial options nowadays. Before we would have had a few options.

Iliketokayak
Iliketokayak in reply to shaws

To my understanding that is true about doctors getting paid to prescribe. The US has since made it possible to search for a doctor and see what payments the doctor accepts. Many have stopped for that reason. I also think that doctors must now report other perks as income. Also, at least in the US, many pharmaceutical companies help in funding for med schools. The med schools in turn set the "standard of care." Huge conflict of interest. So in my eyes it is still one big closed fraternity. And my life has been greatly impacted as have millions of others. It is a disgrace! Do no harm...

shaws
shawsAdministrator in reply to Iliketokayak

It's good that the 'professionals/doctors' are investigated to see if they have ulterior motives for using a particular prescribed medication.

Many on this forum didn't improve with the 'levo alone' but then our options were gradually removed. This left many very unwell members with no recourse but to source their own and many could little afford them.

I am convinced that my thyroid problem - or at least the genesis of it - should have been recognised 50 years ago - instead my health just very slowly deteriorated until decades later I could barely function.

Medics suggested syndromes.....not solutions.

When I mention "thyroid" to people the answer is exactly as you state....they didn't have the "tools" that are now available to modern medics.

Well, frankly, many modern medics haven't learned to swallow their pride and take cognisance of the thyroid science (and the patients) staring them in the face. They lack a good thyroid education and often work with their hands tied behind their backs, the consequence of poor guidance handed down by the decision makers.

Dr Ord, in the latter part of the 1880's would probably have had a better understanding of thyroid disease than his 21st century counterparts.

If they don't look they won't find....for the most part they are failing on both counts!

Admittedly my problem is not straightforward. I have a form of thyroid hormone resistance which my then endo totally rejected when I suggested it could be my problem....yet, when asked why I was tolerating a supraphysiological dose of T3 he just waffled and made no sense. He retired early! I self medicate!

I've been tested, scoped and scanned and have undergone various treatments (both NHS and private) The best they came up with was FM and CFS....and some pain killers.

Nobody seemed interested in Quality of Life. - "but everybody gets tired", "exercise more" ( as I was slumped in the surgery chair", "eat a well balanced diet" said he who had little knowledge of nutrition (I taught" nutrition" for a time back in the Dark Ages!) ....and so it rumbled on

They just did not look.... and with no www research was not so easy and patients were left to depend on their medics. We actually trusted them to know the answers.

Then I found TUK....and the real experts!

The problem isn't killing the patient - but do they know it could? So, it must be all in their head. Neurotic women with wild imaginations.....an easy cop out.

I'm a step from 75 and eventually I found the answers .....but opportunities missed. My long suffering family supported me as best they could when , at times, all I felt like doing was giving in to pain and exhaustion. I was determined that "it" wasn't going to beat me....but at times it nearly did!

I am far from energetic and active - but I cope quite well. No point in dwelling on what- ifs but this madness must end because I see my experience echoed in posts almost on a daily basis. Not good enough!

"The tragedy is that they should have known better a long time ago. Never is there a searching examination as to why and how long erroneous ideas persisted in the face of contrary evidence, with a resolve to do better in future."

As ever, you are spot on diogenes

Thank you

DD

Hillwoman
Hillwoman in reply to DippyDame

Well put, DD.

DippyDame
DippyDame in reply to Hillwoman

I think sometimes that I rant too much!

Hillwoman
Hillwoman in reply to DippyDame

Nope, you just tell it how it is! :-D

DippyDame
DippyDame in reply to Hillwoman

🙋‍♀️

shaws
shawsAdministrator in reply to DippyDame

That's what this forum is for - to allow us to say exactly what we feel and the fact that the majority of members have undergone similar very unpleasant experiences before being permitted to get the replacement hormones that they need to restore health and well-being, or having their 'perfect' replacement withdrawn:

i.e. non-treatment / non-diagnosis / ignorance of doctors/ loss of skills that doctors used to have, i.e. being able to diagnose through symptoms being the priority and being given a trial of NDTs. The recent disaster of the 'experts' removing T3 and also NDT from patients who were well upon these and these Acts were certainly not holistic but purely selfish and insensitive.

They (experts) must think those with a dysfunctional thyroid gland have also a dysfunctional brain and that may be so if our brain doesn't get the amount (and the whole body) of T3 (converted from T4) required for good health and wellbeing. Many seem to be able to do so, but the majority on this forum seem unable to. We can also feel far more unwell than before they're diagnosed and I'm certainly one of them.

Goodness know what people who don't have internet access cope - and we certainly know of one who couldn't cope any more who belonged to Thyroid Patient Advocacy who took her own life. How awful.

humanbean

Hillwoman

shaws
shawsAdministrator in reply to DippyDame

You're right - if we're being given prescription medications people don't understand why we're still complaining and they also don't understand hormones are different from medicine.

One of the problems that many people have in the UK, and possibly the Netherlands as well, is that more and more diseases are being blamed on "false illness beliefs". What we all need, apparently, is Cognitive Behavioural Therapy, Graded Exercise Therapy, and anti-depressants, and then we'll all be back, working hard, happy as can be, paying taxes and making profits for companies.

So many conditions are now classified as being "psychogenic". To begin with the main patients that were targeted were those with ME/CFS. There have been many other conditions now added to the list of people who'll benefit from the CBT and GET.

Irritable Bowel Syndrome

Chronic Pelvic Pain

Multiple Sclerosis

Headaches

Rheumatoid Arthritis

Hypothyroidism

I'm sure there are many more conditions that could be added to the list.

The most recent people to be added to the list will be those with Long Covid. They probably don't know it yet, but the BPS (biopsychosocial) brigade are already publishing about how they can cure people with Long Covid with CBT and GET.

The BPS people seem to think that physical health problems are caused by "false illness beliefs", depression and anxiety. They refuse to believe that being physically ill can cause these conditions - causality is always in the opposite direction as far as they are concerned.

As far as the thyroid goes, I think we are stuffed because there are too many people who benefit financially from the status quo, and too many people have benefited in career terms to want anything to change. I have no doubt that there are doctors who don't want to know that they have tortured (mainly) women for decades and so would much prefer to continue believing that women are hysterical, hypochondriacal, attention-seeking liars that don't need treatment (or more treatment) for thyroid problems.

I actually wonder how much effect the recent Cumberlege Review will have. My previous experience of new information coming out about some medical scandal is that it causes lots of excitement for a few weeks then disappears and life carries on as before.

immdsreview.org.uk/download...

humanbean
humanbean in reply to humanbean

I found the perfect picture to illustrate what many patients are faced with as described in my previous post.

pbs.twimg.com/media/EeXEgY-...

Hillwoman
Hillwoman in reply to humanbean

Whoever drew up that little poster for King's should be hanged, drawn and quartered. The ignorance of the effects of physical conditions, and contempt for individual rights and autonomy is breathtaking.

tattybogle
tattybogle in reply to Hillwoman

i think hung drawn and quartered is a bit strong :) maybe this would be more fitting;

endocrinesurgery.net.au/thy...

" One of the earliest references to a successful surgical attempt for the treatment of goitre can be found in the medical writings (‘Al Tasrif’) of the Moorish physician Ali Ibn Abbas. In 952 A.D., he recorded his experience with the removal of a large goitre under opium sedation using simple ligatures and hot cautery irons as the patient sat with a bag around his neck to catch the blood."

Hillwoman
Hillwoman in reply to tattybogle

Sounds good!

Hillwoman
Hillwoman in reply to Hillwoman

PS 'Hanged' for a person?

humanbean
humanbean in reply to Hillwoman

Yes. :D

Meat is hung. People are hanged.

Hillwoman
Hillwoman in reply to humanbean

Thanks. It's one of those well-known phrases that I think I know how to spell, and then I'm (w)racked with doubt. Now, there's another one...;-)

shaws
shawsAdministrator in reply to humanbean

That's a great find, your link, and it is so apt and the majority of us on this forum will (or have been) probably treated as 'problematic' patients who don't want to take levothyroxine.

shaws
shawsAdministrator in reply to humanbean

How many poor souls have been incarcerated due to not being diagnosed at all and probably given 'other meds' to try to resolve their conditions when they may have required NDT or T3. I am aware they've removed NDT through False Statements.

Hillwoman
Hillwoman in reply to humanbean

Thanks for this link, HB. I was aware of some sort of review into the mesh scandal but hadn't realised it had already been published.

We've had better medication in the past for Thyroid problems and they seem to be doing their utmost to make us suffer with poor quality Levothyroxine at the moment. Still suffering, 10 years later from the change from Goldshield Eltroxin to Mercury Pharma Levothyroxine. Excipients used lately seem to all consist of acacia powder and microcrystalline cellulose, not to mention Mannitol. One or more of these excipients appear to be in just about everything in the medical or food category now. They must be very cheap! If 'that was then' and this is now, then 'they' don't appear to learning much and have gone backwards.

helvella
helvellaAdministrator in reply to nightingale-56

When I checked it out, mannitol was generally more expensive than using the obvious common alternative - lactose.

I seem to be alright with lactose, but definitely not with Mannitol - it doubles me up. You have to wonder why they use it if it is more expensive than lactose. I am just a simple 'girl' obviously, and can only cope with simple things.

jgelliss
jgelliss in reply to helvella

Helvella Many don't do well with mannitol. It would be nice if they can use the least fillers in our thyroid meds. that work well for all of us.

helvella
helvellaAdministrator in reply to jgelliss

It would. But...

I offer you (and everyone else) a challenge. What would you use to make an oral levothyroxine product? One that is suitable for almost everyone.

Bear in mind what is probably the product with the fewest and, individually, the least controversial excipients, Tirosint, still seems to cause problems to at least a significant minority.

I know we are not pharmaceutical formulators, but we could put heads together to come up with some suggestions. Though I think it is likely more difficult than it initially appears.

jgelliss
jgelliss in reply to helvella

I'm currently dosing with Levoxyl for my T4 and thankfully doing well with it. I understand what your saying Helvella that it's hard to please and satisfy everyone. But there is a big problem that exists before we even start with thyroid meds . That most of us that have ailing or no thyroids are already compromised and have sensitive digestive issues and many fillers/ foods don't work and causes allergic reactions. And there by sets us up for/with problems.

It's not easy that's for sure.

helvella
helvellaAdministrator in reply to jgelliss

Years ago, I looked for what looked like a relatively "safe" formulation for someone else and Levoxyl, despite being a USA product, looked promising. (This was shortly after it had been completely reformulated. The old Levoxyl was rightly criticised as being awful and inconsistent.) Didn't really help but I can certainly see why it might be preferable to Synthroid.

jgelliss
jgelliss in reply to helvella

I personally had terrible experiences with Synthroid from get go dosing with it. From palpitations and more . To many symptoms to list .

Levoxyl was a Great game changer for me . On Synthroid not knowing better at the time I thought it's a new way and I just had to get used to the new normal. But I'm very Grateful to my GP for hearing me out and witnessing himself as to what Synthroid was doing /causing me. You just can't make it up .

If Tirosint causes problems, then maybe it is the Levo that is at fault! Excipients in WP NDT do not seem to be causing me problems. What I can't understand is why Goldshield Eltroxin, Norton and Cox never caused me these problems, and Mercury Pharma, supposedy being the same as Goldshield Eltroxin, has ruined my health.

helvella
helvellaAdministrator in reply to nightingale-56

If the levothyroxine itself is an issue, why do so many do very well on it?

(Are you sure about WP Thyroid? I thought it contained Inulin (from chicory root) and Medium Chain Triglycerides (from coconut).)

Not on the PIL. Maybe in Nature Throid? I did quite well on Levo for about 10 years before Mercury Pharma, but think this has now mucked me up for any other levo.

helvella
helvellaAdministrator in reply to nightingale-56

I went here:

getrealthyroid.com/wp-thyro...

RLC's own site. :-)

And their patient document (full prescribing information) is here: getrealthyroid.com/assets/d...

Sorry helvella I picked up an old PIL.

Thanks as ever, Diogenes. A sorry litany. I won't bore all with where I'm at but must add that I do, however, have a softer spot for 'diagnosis by stool' - a friend is now 10 years on following her bowel cancer op...

So sad for so many!!! Also unbelievably inexcusable. It seems that the longer it goes on, the more resistant they are to change.

shaws
shawsAdministrator

You are so right diogenes. I know for certain because when GP phoned (I take T3 only) to say my T3 was too high and T4 too low and I said ' it will be doctor as T3 is all I take'. He went on to say "but T3 converts to T4 and I responded 'No Doctor - it is the other way around'.

Squeezie
Squeezie in reply to shaws

🙄ffs

jgelliss
jgelliss in reply to shaws

Amazing and so Very Unfortunate . Dr's are not trained well in medical schools. Medical Schools ought to retrain Dr's with thyroid meds Including T3/NDT.

Work In Progress . Slowly But Surly . Lets hope we are closer then further.

The members on this forum, many with no medical background manage to keep up to date with the latest scientific papers on different aspects of thyroid disease. I think it scandalous that I have had 6 GP'S freely admit they know nothing about the thyroid. I feel like saying " well learn about it then !"

12 mistakes, yes TWELVE have been made during my treatment for Graves and when you end up with a S3 whose knowledge is questionable advising your GP who knows nothing you just despair.

tattybogle
tattybogle in reply to asiatic

I believe GP 'continuing education whilst in practice' could be a useful target to get the snails to keep moving in the right direction.

Practice managers need to be made aware of the expense of ill informed thyroid treatment decisions, compared to the much smaller costs of better testing.

Even amongst patient's on Levo only , i keep reading stories of basic errors by GP's resulting in further unnecessary costs.

I think we should start presenting practice managers with evidence of investigations/referrals that turned out to be due to GP''s lack of up to date education/understanding on thyroid disease and treatment.

I've had a kidney ultrasound, a CT scan with contrast, an endoscopy , a colonoscopy, an 18 mth programme of CFS/ME treatment , 10 counselling sessions.

Apart from Autoimmune Hypo i'm very 'healthy', i have a perfect digestive tract, no bladder or kidney problems..... no other health problems at all, i'm not even overweight. (ok, i have Pompholyx ... but there is no treatment for that anyway )

I would much rather they had spent a tenth of this money on furthering Gp education on thyroid treatment.

At nearly all of these appointments , the nurses filling in the pre proceedure checklists had a fair idea that the issue was likely to be thyroid over/under medication.

asiatic
asiatic in reply to tattybogle

Unfortunately, GP'S continuing education on thyroid would probably involve their local endocrinologist addressing them on treating a thyroid patient and as we all know many endos can have tunnel vision.

tattybogle
tattybogle in reply to asiatic

Yes , i haven't quite figured out a solution to that little flaw in my master plan.... yet.

But i'm the meantime i still think we should start getting the accountants in on the act (as long as we don't want T3 that is ... Damn , another small flaw in my master plan)

Justiina
Justiina in reply to tattybogle

I think it's unrealistic to expect doctors studying it all as there is much more than just thyroid. I see AI based thyroid monitoring would work better, it's near future anyway. AI would pick up any inconsistent detail in patients history /tests requesting doctor to look at it suggesting how to proceed with it. It's not perfect solution but AI can pick up the minor details doctors can't.

helvella
helvellaAdministrator in reply to Justiina

Aside from all the other considerations, it is concerning that AI depends on some sort of learning.

How do we ensure that training is solidly based?

For example, if FT3 is as important as most of us here appear to think, yet hardly anyone ever has it tested, we could end up missing that factor - potentially for a long time.

And, quite obviously, the AI would need to be able to override labs that refuse tests (of all sorts - not just FT3).

I'd actually like to think that all lab tests (and other investigations) done by bona fide organisations could also be added to our main medical records. For example, if we get a private test, as individuals we should be able to click a button (or whatever) and those test results should be sent from the lab directly to our records.

Justiina
Justiina in reply to helvella

Yeah I based it on finnish system. Ft3 is easy to get tested, labs never refuse to test anything doctor referred. Lab manuals insist testing ft3 in unsure cases.

But yes AI should consider all testing history outside of the public healthcare, in Finland they do share the database between public healthcare and commercial labs as its commercial labs often doing the job for public Healthcare so doctors can't question the lab results.

But consistency of databases should be global. Let's take Synlab, NHS uses Synlab so they can't deny Synlabs view and you can find Finnish Synlab laboratory manual online being very educated thyroid wise.

Biggest problem is inconsistencies globally. That adds up to both scenarios, AI based monitoring and training doctors.

diogenes
diogenes in reply to Justiina

AI prescribing is a fallacy as regards thyroid testing. First, if FT3 testing is not on the table when setting up the algorithms, AI won't prescribe the measurement. Second, symptoms of thyroid deficiency can be mimicked by nonthyroidal issues, so without a detailed examination of and discussion with the patient, I don't see how AI will help things. As ever, garbage in, garbage out.

Justiina
Justiina in reply to diogenes

First of all I never suggested AI would operate on its own and no doctor needed. I wish people would ask before assuming.

I suggested AI would be a tool that would point out any inconsistency, it doesn't matter is it thyroid or NTI, it would still point out inconsistencies which doctor could look at. Now all databases and labs are all over the place instead handy chart for example. Inconsistencies with labs and symptoms would be highlighted.

Over here in Finland FT3 is often tested and it is laboratory manual that actually recommends testing it but also gives pretty good detailed picture how to interpret the blood tests. But doctors don't read laboratory manuals so AI based program could point out recommendation based on recent biochemistry.

AI would not replace the doctor but would alert the doctor. Its unrealistic to expect doctors to learn all new information on their free time as other diseases exist too. AI would just assist to find the information faster as it would also consider individual factors like other medication that could for example suppress TSH. It's all written down on GP's manual as well but it requires doctors to read the manuals which they often fail to do.

I have access to all Finnish laboratory manuals and I can see it with my own eyes how the biochemistry is relatively upto date reflecting recent studies. All kind of issues from NTI to conversion issues are covered in best manuals but that information fails to reach the doctor.

Hillwoman
Hillwoman in reply to Justiina

I doubt we can see those manuals for UK labs, but it would be interesting to know just how out of date they are compared to the Finnish ones!

helvella
helvellaAdministrator in reply to Hillwoman

Some of the laboratory handbooks for UK (NHS) labs are readily accessible.

You might find they are more comprehensive that you anticipate. But still, sadly, arguing that FT3 is unnecessary except in hyperthyroidism.

Hillwoman
Hillwoman in reply to helvella

Thanks, I'll have another look.

Why is this country so backward? That's rhetorical, I'm not expecting you to know.

Scrumbler
Scrumbler in reply to Hillwoman

We can.

Justiina
Justiina in reply to helvella

Short example, free translation from Synlab manual.

In successful thyroid replacement FT4 should be at least 20% higher than euthyroid value. Normal FT4 (equal to euthyroid) on thyroid medication often indicate malnutrition /malabsorbtion.

tattybogle
tattybogle in reply to Justiina

I suppose i was thinking more of basic improvement's in GP knowledge;

thing's like;

- exercise caution before reducing Levo further after 1st reduction, because of TSH lag, and need to take how patient is feeling into account.It can take some people more like 12 weeks to settle on a new dose.

-need to understand that 12.5mcg adjustment is enough to effect an improvement in some patients or at most 25mcg. Adjustments of 50mcg or greater are likely to cause problems

-an understanding of the magnitude of the full list of Hypo symptoms, as opposed to the limited 'weight and tiredness' view

-the need to asses 'risk' of low TSH in context of patient's current quality of life.

-the need to aim for a TSH around 1 and FT4 towards top of range , in the first instance , before deciding if Levo treatment is optimal.

_ a basic understanding of the narrow individual set point for TSH, and that simply 'in range' is as useful as saying 'size 5 shoes fit a lot of people, so they'll fit you'

- an understanding that TSH lowers through the day.

-an understanding of the difference between true hyper results which show very elevated FT4/FT3 alongside Low TSH~ and Low TSH with 'in range or only slightly elevated FT4.

-a basic understanding of autoimmune 'Hashitoxicosis' caused by destruction of thyroid tissue dumping T4/3 into blood versus actual Graves causing sustained overproduction of T4/3

Of course we all know that what they are missing is more to do with FT3 /FT4 , than their beloved TSH. But it would really help if they at least learned how to 'drive' safely under their existing 'TSH is God' protocol, before we confuse them with anything else.

Also , since they seem to be firmly convinced that T3 is sought out by people wanting to use it for weight loss/amphetamine substitute and NDT is a hangover from witchcraft, perhaps it would be a more effective starting point for re-education, to show them examples of when using TSH as a guide reduces patients quality of life/costs them more money in the long run.

Hi tattybogle my Graves was found via an appointment with GP who successfully treated Pompholyx on palms and soles with steroid cream. All cleared within a week (this was in 1972 and I think steroid creams were much stronger then) and I was tested for Graves (not told this is what was being tested until results came back) and so my treatment with Carbimazole started. All good for a couple of years and then my problems started.

Thanks.... ive got some strong steroid cream , but as it comes back so frequently i wait and see if it gets bad before i use it. Since i believe using it often thins the skin.. and my skins already really thin from pompholyx ..... catch 22 again.

Interesting it showed up before your Graves Dx. wonder if Doc knew there was an association with thyroid disease ?

I cant remember off hand, whether the others on here with pompholyx had graves or hashi's or other reason to be here.

i had Ord's (probably)

He was a brilliant and caring Doctor and I believe he knew exactly what it was as he asked all the right questions. One question being had I lost any weight recently. A stone in the previous 3 weeks and eating like a Gannet (as I was called by my B-in-L) because he thought I ate a lot and was very thin, even before the loss of weight. Unfortunately I was only at this surgery for 6 months and left there still taking Carbimazole.

I did not know that Pompholyx could make your skin thin, but certainly it is well-known that steroid cream can. But I also believe that steroid cream is not so strong now, but also does not work as well. So what is better, to treat something that is stronger, or be on a weaker but takes longer to act, if it ever does.

The Doc who diagnosed me actually checked my ankle reflexes and said 'Oh?' then did an antibody test, and said "Ah!" and he was an NHS Gp who i never thought that much of at the time....... wish i'd still got him now .

edit;ps. steroid doesn't treat the pompholyx, that goes away on its own ,( and if you're unlucky it keeps coming back at intervals). Steroid just fixes the skin afterwards. It's not yet known how pompholyx even works, or which skin layer the blisters originate from . It used to be thought that it was originating from sweat glands, but that turned out to be incorrect.

Thanks for that information. I must admit that once it had healed, I thought no more about it.

Conversely, some of the old ideas were the best. For example, dosing with NDT until the patient was symptom free - irrespective of the dose and no blood tests or ranges to hinder progress.....

..... and they’d never heard of fibromyalgia or chronic fatigue.

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