Please read this! Someone (we have our suspicions) from BTA has been tweeted alarming things recently and is causing outrage amongst thyroid patients. It is on the Thyroid Patients Canada Facebook page, for this on FB. I've copied it here:
Recently on Twitter, The British Thyroid Association (BTA) has engaged in demeaning, unprofessional metaphors, comparing LT3 (liothyronine, T3) and LT4 (levothyroxine) hormone treatment to "deluxe" vs. "supasaver" ginger cookies.
This is unprecedented incivility of physicians toward their most vulnerable patients. A comparison of LT3 and LT4 to cookies is entirely inappropriate for a life-sustaining treatment of a vital disability.
This is an example of what our patient organization stands against: "Thyroid pharmaceutical prejudice."
When people show open prejudice against any thyroid treatment at any ratio of T4 to T3, they are indirectly attacking the patients who require that treatment and do not fare well on any other.
Here is some of the context leading up to the BTA's ginger cookie quip.
On Nov 18, Antonio Bianco posted a study of LT3 saying "Provocative Norwegian randomized crossover study comparing mono-therapy with LT4 vs. LT3 in 59 women with residual hypothyroid symptoms. The use of LT3 for 3 months improved QoL without biochemical or clinical signs of thyrotoxicosis (most preferred LT3)."
Then BTA replied to Bianco: "Big proviso: the study is unblinded and QoL is the outcome. This is how supermarkets do research; scientists need to raise their game."
Then on Nov 19, Linda Sanday said "If supermarkets are as successful in teasing out essential details of customers preferences (QoL) as they appear to be, who says the science of blinding is necessary for finding truths?"
Then in reply to Linda, out of the blue, LT3 patients get this attack from the BTA:
"Except you’re not asking 30 million taxpayers to fund your deluxe organic stem ginger cookies when the evidence shows that supasaver ginger snaps work exactly the same and are probably safer."
... By saying "your deluxe organic stem ginger cookies," they are implying that Linda is a user of LT3 hormone, and she is asking taxpayers to fund her unnecessary and potentially dangerous treatment.
International context:
In the UK, thyroid treatment is funded by the National Health Service (NHS), which is taxpayer-funded but struggling to make ends meet. More than a decade ago, there was a huge price hike of LT3. The price has not yet come down to reasonable levels. Therefore, LT3 treatment comes at a high price to UK taxpayers in comparison to cheaper LT4 hormone.
Today, not only are UK regional health care units reluctant to permit patients to start LT3, they may attempt to take their LT3 away completely.
The BTA spokespeople are showing how they disparage thyroid patients who suffer poor health on their preferred LT4 monotherapy. It's not our fault if some of us fail the LT4 clinical trial they have forced on us without our consent.
It was their opinion-based choice, as a medical discipline of endocrinology, to remove T3 from thyroid therapy in the 1980s and 1990s, without any double blind clinical trials proving that removing T3 was "safe" for all hypothyroid patients.
To defend that non-evidence-based decision by attacking the only alternative (a return to T3-inclusive treatment), is to defend a huge historic mistake.
Those 'professionals' who make such statements and who may not have a dysfunctional thyroid gland, should have their thyroid glands removed and have the experience of how their bodies function!!!! without any replacements.
I bet they dont use the same perjorative arguments for cancer patients who dont respond to Happy Shopper chemotherapy and require Waitrose esque expensive interventions. Why is it that thyroid sufferers are expected to put up with sub optimal treatment. Our thyroid gland fails us through no fault of our own.
Everyone who's gone through the NHS in recent times has had to give Levo a go, its not their fault if it doesnt work. Its the only treatment most can readily access. And I really dislike this "us and them" vocabulary. Pitting taxpayers against thyroid patients. Dont the BTA realise thyroid patients also fund the NHS through their taxes?
Perhaps (although we don’t know for sure but ‘everyone’ seems to know who it is) a complaint should be made to the GMC about unprofessional conduct. As I have said previously it’s unlikely that this will be for public scrutiny but the GMC should be made aware of the disgusting behaviour of at least one of its members. This is becoming like the complaints against the police for similar outrageous behaviour. The beginning of the end must start somewhere.
Even then, they don’t actually treat us until their TSH requirement reaches the magic 10 by which time we’re almost on our knees and a lot of damage has already been done that no amount of T4 is going to undo! The BTA don’t even supply Happy Shopper standard of care, theirs is the dumpster-around-the-back-of-Tesco treatment!
My TSH was 100 and none of the 'professionals' - even the ones I paid did not seemto be knowledgeable, about anything regarding the thyroid gland whereas our 'old fashioned doctors' could diagnose/treat without blood tests.
A GP told me that I had no problems at all - the problem was him as he had no idea what 100 TSH indicated.
When I was just diagnosed I met an older woman at hospital who said she was on levothyroxine and she was obviously doing well upon it as revealed by her attitude and energy.
Levo for me was just constant and scary palpitations.
I met my first satisfied patient the other day. She was more than full of life, 150 mcg levo. However she could hardly move, her walking was worse than mine yet she could see no connection. Happy with other ‘reasoning’ given to her by doctors. These stoic people are off course incredible. They are obviously made of different stuff from me!
I believe, re the 'training' for modern doctors, seem to lack providing the knowledge about what thyroid hormones replacements are expected to provide!
One of my surgery's GPs phoned re my result:-
Mrs G - your TSH is too low, T3, too high and T4 too low
Response: Yes T3 is high because that's what I swallow. TSH is lower due to taking T3 and no T4.
The current BTA president said on a webinar that doctors who 'prescribed medicines proven not to work could be called charlatans...' After he had shown slides of all his favourite trials which 'prove T3 does not work and is a placebo'
Haven’t you noticed JGBH effectively it’s already happened. If you are in an area where you are still being prescribed it you have been very fortunate. I unfortunately live exactly where this person practises and all medics can be seen to toe the line. It’s a highly populated area and the stats appear to show only one person has a T3 prescription.
My surgery REFUSED to prescribe T3 as combination with T4. I had to consult an endocrinologist at a different hospital (I live in an area whereby we are squeezed ‘between 4 counties) because not one Endo from my usual hospital would even see me, knowing I needed T3! Anyway this Endo agreed I needed T3 added to T4. It helped… Because my surgery refuses to prescribe T3 he very kindly agreed that T3 would be provided by his hospital pharmacy. I send him regular blood tests so he can monitor the situation and we have phone consultations since Covid. However last time I noticed he asked me more questions justifying the benefits of using T3…: I must admit this got me worried. I hope he won’t tell me that he can’t prescribe T3 anymore, at our next phone consultation in March next year. I have been on T3 for 4 years now.
Mmm. Even ‘lucky’ people like you have to deal with this all the time in the UK. Are you in the UK? There was a post just in the last few days of someone who was trying to (and exhausted by) trying to maintain their T3 prescription. There is a huge emphasis on cost here. However certain medics are vociferous in their support for the viewpoint of the individual whose comments we are discussing. If you are in Canada maybe you have been sheltered from much of this. If you are in the UK but somewhere this poisonous view has not reached then great. Hold on to your prescription as best you can. Read the posts here with good advice about keeping yourself as healthy as possible.
I am in the UK. It took me a very long time and a huge fight over many years before eventually find an intelligent endocrinologist who recognises the importance of T3 for some patients. He actually said he was shocked I was not prescribed T3 straight after my thyroidectomy back in 1980… I had a dreadful time, I can assure you. Dragging myself for years . I so hope this endocrinologist will carry on prescribing T3. I fear he might be put under much pressure to stop prescribing, from greedy pharma people and arrogant and ignorant so called medical professionals.
May I ask you which area of the UK you live in, and which area has become so poisonous, refusing to carry on prescribing T3? This is all wrong of course. There must be many twisted narcissistic sadistic and extremely arrogant medical professionals to make such drastic decisions. They obviously are not suffering.
T3 was refused or removed almost everywhere basically after the extortionate 6,000% price hike. It is now more than 80% cheaper than it was at its height for 20mcg tablets. The December drug tariff is due due out very soon, and we hope it may reduce slightly again.
Let’s hope so… Thank you. I really fail to understand those ‘medical professionals ‘ who appear enjoying ruining peoples’ lives… in order to satisfy their huge egos via their totally bias and useless research papers. Perhaps they get an undisclosed bonus from Big Pharma, there is so much corruption everywhere. Who can we trust? If only we had more enlightened researchers like Diogenes and his positive colleagues.
Whilst I was looking at some statistics yesterday I saw that thyroid doctors are apparently at the bottom of the heap for PAY. Apparently less pay than GPs. Maybe this is why they lord their power over GPs, making it so even they can’t help patients. Watching the behaviour of some of these incredibly small minded doctors at work, I would be unsurprised that these petty jealousies are also in play. Again no wish to paint them all the same. Just saying.
Let’s hope so… but he certainly was asking more questions than before with regards to improvement. I felt like he really had to prove it was helping me… Also my TSH is very very low… below the acceptable range… Hé requested an ECG from my GP, with special attention to sinus function. I haven’t heard anything yet so assume it’s ok but will ask my GP.
It’s certainly a worrying situation for us all who use T3 either in monotherapy or in combination therapy, and those who desperately need it. Big Pharma are so greedy and rule the medical world it seems.
Was this Part One or Two Of the Thyroid Trust interview? I have tried to find Part Two but to no avail. It was supposed to be aired months ago. I was wondering after the abysmal (but enlightening) Part One, he had pulled Part Two. Maybe some sane person managed to get him to change his mind as a bit of PR advice.
Pearce can show all the useless trials he likes! the stark facts mean that all these trials swamped out the minority of users who would benefit from T3, so that the majority who weren't bothered dictated the outcome. I simply cannot get into Pearce's mental "skin" to find how he can think as he does, based on the poor evidence.
It is probably more likely that the charlatans are the 'supposed to be knowledgeable' who insist that neither NDTs, nor T3 enables a hypo patient to recover their health and be symptom-free.
I feel my health is normal - have no ups/down - unless there is something different about my liothyronine and, so far that has not happened.
We had this brought to our notice by someone else on this forum. However we never saw this bitter exchange. Thank you for highlighting it. I am thinking this is the tantrum of a certain person. This person now knows for sure they are wrong and chooses to fight back in this very undignified and unprofessional manner. I can only hope this truly is the end approaching soon for this reign of terror. Maybe this person might benefit from getting their own thyroid levels checked. I also hope that some sane person replaces this person very soon and we can “Stop the Thyroid Madness”. I don’t care how they disappear. It won’t be open to public scrutiny in any case. However we do need a sane person to take up the reins and get things moving.
the BTA’s next tweet was to refer to a paper published in 1934, where Dr Patterson, describes ‘thyroid addiction’. This is just 15 years after Kendall, on Xmas morning in 1919, isolated thyroxine salts. We are now almost at a distance of 104 years after this discovery.
BTA will not ever convince me that there’s such a thing as Thyroid addiction. For preference I’d rather not take anything. But you take the genes you’re born with.
In the bad old days of 50+ years ago, the use of huge T4 doses up to 500 was quite frequent. The subjects simply felt buzzingly active and and treated the hormone as a stimulant. We know better now, but the early story of T4 therapy is quite hair-raising.
helvella, when I inadvertently took 200mcg levothyroxine for 11 days, yes, my T4 shot up to 41 (top of range 22) but my T3 was the best it has ever been 5.3(top of range 6.8) when normally it's scraping the bottom of range 3.5. How did I feel?....miraculously better. The muscle and joint pains disappeared, my thinking cleared etc etc. I was able to cancel the steroid injections in my osteoarthritic knees. That shouted to me that my body NEEDS T3.
So your body obviously worked well to provide such an conversion:-
"How did I feel?....miraculously better. The muscle and joint pains disappeared, my thinking cleared etc etc. I was able to cancel the steroid injections in my osteoarthritic knees."
Thing is shaws, my normal conversion T4 - T3 is poor......look how high my T4 had to be to give me the needed T3? The felt impact was not influenced by knowledge of the T3 result..... I didn't know until the GP wrote to tell me my T4 was as it was...he didn't mention T3, and I had to wait until I could get the print out of all blood test results. So, experience was nothing to do with placebo effect.
Similar to my recent situation. 25 mcg increase shot my FT4 up to 126% and FT3 up to 51%. I am still benefiting after a harsh few days. Mind clearer, less body discomfort but otherwise muscles still pretty bad. Naturally not good to have my T4 at such a level to hold up my still ‘short’ T3 level.
Sorry you had a harsh few days, before you felt the benefits...those benefits...Oh my! I vividly remember feeling WELL Moving easily, pain free. much more energy, clearer thinking.....lovely whilst it lasted.
The interesting thing regarding the improvements I felt is that when I was telling the visiting physio how much better everything felt, I was only aware of my T4 result, as that was what my GP wrote to tell me was his reason for dropping my levothyroxine dose. So, my improvements had nothing to do with any "expectations" at all. I had no idea until a couple of days later that my T3 had improved so much. Food for thought?
When someone is dying, the story is that first reaction is rejection, then frightened, then angry and finally when the inevitable is recognised, calmly await the end. With organisations like BTA, if their mantra is attacked and deep down they suspect their stance will ultimately be destroyed, they will go through these phases. First, summary rejection of anything opposing their position, then defensiveness because deep down they might not be right after all, then angry at those who oppose them and are deemed to be responsible for the upset, and finally accepting the new thinking as if the old thinking never existed.
So it looks like we are presently at “anger at those who oppose”. Getting near the endgame after all. Certainly in medical circles I would say the last part “as if the old never existed” is correct. This person will get away with it when actually it’s criminal. ‘He’ could (with all his cronies) be responsible for untold damage to hundreds of thousands of lives.
Unfortunately DippyDame I know you are right, after my LD Son and I suffered skin damage from when Levothyroxine was changed in 2010, and which is still ongoing.
I speak from personal experience too, I'm now coping with the results of decades of incorrect diagnoses and wrong medication.....T3-only eventually resolved several of the symptoms.
Vastly improved on NDT and at last losing weight as well. Only wish I could do this for my son, but all the hormones he is short of would be too much for him to bear, when we are gone, if I were to get NDT for him also. Plus his hormone requirements are complicated. At the moment I am having trouble sourcing 50 mg Testosterone Gel. Besins, who used to make this, have now lowered their sachets to 40.5 mg, which leaves my son's blood levels of this hormone under range. Endo cross that GP not being co-operative. GP has thrown this problem back at me to source this amount. All four Pharmacies in our town in Essex cannot source this. Can anyone help me with this problem. I will also try online Pharmacies. I would be very grateful for any help given.
Unfortunately a sign of the times....and utterly shocking.
Just heard about an elderly, immobile man who rang the surgery asking if they could give him a list of local private orthopaedic surgeons. He was told bluntly " Do your own research". It used to be an excellent surgery!
Considering that many people may not have connection to the internet or don't have a computer why do they have to remain undiagnosed/unwell/unmedicated?.
Once-upon-a-time there used to be a 'profession' who restored patients health.
Dr Gordon Skinner and Dr Barry Peatfield were the 'last of the two' educated/compassionate/knowledgeable doctors and I was able to consult both. Both doctors were able to diagnose/treat/restore health for patients who travelled from everywere in the UK to consult.
Towards the end of their working lives, both were pursued as if they were 'criminals' because they treated their patients' symptoms with either T3 or NDTs (natural dessicated thyroid hormones) that saved lives from 1892 and still would be helpful today but withdrawn.
It certainly is a worry shaws . He started on 50 mg of Testogel about 20 years ago, but as Endo never gave paper copies and 'forgot' them even when you did ask, I have never really know his Testosterone level, so it could always have been low or under-range. Now I know, I will always do private bloods at least once a year. I originally had bloods done to check his Vitamin D level as NHS had not taken it for years. That was higher than I would have liked. NHS cause more problems than they cure, along with Big Pharma!
I would say rejection. I don't yet see any inkling of fright or anger. The organisation knows too little about any research that challenges them, and that's a surefire easy act of rejection (by not engaging).
Thank you diogenes, though your answer makes my heart sink. Medicine is science based isn't it? But science requires an open Mind if it's to see the whole picture...blinkers of any sort only show the part the wearer wants to see.
Remember this well about the present day failure of bad science:
There seems to be no study too fragmented, no hypothesis too trivial, no literature citation too biased or too egotistical, no design too warped, no methodology too bungled, no presentation of results too inaccurate, too obscure, and too contradictory, no analysis too self-serving, no argument too circular, no conclusions too trifling or too unjustified, and no grammar and syntax too offensive for a paper to end up in print.'
Thank you....I've spent some time looking up Drummond Rennie. As a "non-Scientist", I can see why you would quote him.
Yet, also as a "non-scientist", I wonder at where Medicine has seemingly strayed from the holistic beginnings of its founding father? Is this research led straying? or pharmaceutical led straying? and where in this is the patient? the lived experiences of the patient? Who is it who listens to the patient?
I am old enough to remember that GPs were the ones who listened to the patient but, as they died off and “performance” became king, that all ended up being yeeted out of the window and we are where we are…
I was truly astonished the other day, when I tried to ring my local surgery, to be told that I was in a queue and there were 3 “customers” ahead of me… since when did we become “customers”??? And where are our consumer rights?
Dr Gordon Skinner's staff (after his demise) collated all of their scientific evidence and stated that it would 'shake up the organisations' and wanted to publish the evidence but needed an enormous amount to do so. I assume they haven't yet been able to source the money.
Perhaps they could start a Patreon, Kickstarter or a GoFundMe… I’m sure there would be enough of us (even just on here) to be able to raise the necessary funding for the publication of his work! I’d be quite happy to put some money towards that goal!
Without high dose T3 -only ( which has to be self sourced and self funded) I would most likely be dead now...or close to it. I apologise for repeating this yet again but...
How many other life threatening diseases have had NHS treatment ( all but) withdrawn... while money is allegedly squandered elsewhere.
Are the decision makers clueless and heartless...or deaf and blind...or all of the above?
As for Bianco....he appears to contradict himself as he writes about T3 therapy. I've just received his new book and I anticipate more steam.....
Perhaps the BTA might suggest that all I need is some dark chocolate gingers!! Grrrrr!!
My sons are both NHS clinical staff, my youngest used to cover various depts for staff absences etc. He said the amount of waste was eyewatering. I always remember one shift, about 3 months after he started. It was a night shift and he was the senior member of staff on duty, not because of age or experience, he was 18.
But because he was the only permanent member of staff. All of the others were agency. The money spent on employing agency staff is truly shocking. My son will tell you there are too many managers and not enough grassroots staff.
" There are 20 RCTs showing that both therapies are effective. Adverse reactions are similar. Long-term retrospective studies show mortality is not different. Again, the preference seems to vary. Why not give combination therapy to those patients that prefer it?" twitter.com/Bianco_Lab/stat...
Relentlessearch & SarahJane1471 ......Can't remember exactly what he's said in the past to be honest ......he is currently in the process of developing/ trialing (and no doubt patenting ?) a 'slow release' form of T3... so if he has changed his tune a bit , that could be playing a role.
Whether it will be a good thing for everyone who could benefit from T3, or just good for his bank balance , has yet to be seen .... some of us are a bit worried that messing around with slow release when there doesn't seem to be too much of a problem with 'normal' T3, might just bugger it up for everyone..... ie. what if some people actually do better with the peaks in blood levels from taking 'normal' T3.. and feel rubbish with slow release ...? will they still be allowed to have it, or will 'research' start to say slow release is 'safer' so you can't have normal T3 anymore .. ? might Bianco's push to get his own 'slow release' T3 into accepted use end up causing less freedom for patients wanting to try 'normal' T3... .time will tell .. but while he's standing up for the freedom to try T3 in some form , i'll take it as a 'win' for now.
Why isn't someone working on a thyroid hormone implant? Like the contraceptive implant. I understand changing the dose might pose an issue, but they could design it to be controlled remotely via an app or something so the dose can be changed. Imagine how much better it would be not to have to worry about food/caffeine/vitamin/drug interactions, it would be like a substitute thyroid gland!
I am well on T3 alone and Dr John Lowe of Thyroidscience took it himself. He also stated it had to saturate all of the T3 receptor cells and it then sent out 'waves' for up to three days'. I have found that is correct i.e. by taking one dose - none on day 2 and 3 and felt fine and no clinical symptoms.
I think he's hedging his bets and seeking favour by agreeing with everbody....and making little sense regarding "rethinking" medication protocols.
Ultimately he favours T4
"In my experience and that of my colleagues about half of patients with residual symptoms will respond to combination therapy. Unfortunately the other half will remain symptomatic. Thus if after several adjustments you still do not see improvement then you should stop and resume treatment with T4 only"
Copied from Bianco's new book, " Rethinking Hypothyroidism"
Well if that's rethinking hypothyroidism then I'm the Mad March Hare!!
That's exactly what an endo told me several years ago.
Just take T4 again.... which is what nearly killed me!
As far as my skim through this book suggests...
No mention of T3-only
No mention of serum v cellular T3
No mention of cellular rather than glandular hypothyroidism
thanks so much for explaining, I’ve also seen Diogenes pass on a small review of his new book, sounds like he continues to insist on small doses of T3 and TSH for dosing 🤦♀️🤦♀️🤦♀️🤦♀️🤦♀️ So glad I didn’t waste my money!
The above-mentioned Twitter tweets followed an exchange between Dr Anna Mitchell who was at an event that Simon Pearce, President of the BTA was presenting at. She shared an image of the page of his talk that showed studies showing that T3 is no more effective than T4.
Sadly he shares the same settings studies at every meeting or webinar. Most of the studies are flawed in one way or another. But he still tries to convince everyone listening that these are the proof that T3 is a placebo. And unfortunately delegates listen amd believe it's the gospel truth.
Absolutely. I was convinced at first. He was so confident. However I think he is now getting the jist. He is no longer believed by anyone who knows anything.
But the same information, same message, same slant on RTCs that show T3 does not work better, is still being delivered to delegates/attendees at professionals' meetings. The same message is still going out
Same with the other local guy. Producing the same old same old at it seems every opportunity - for years. If they can’t find suitable new research it’s either because they are not looking and/or are just refusing to change their position. Neither position is admirable and downright dangerous to us.
Pinching this comment for my complaint to the BTA, thank you!
'If they can’t find suitable new research it’s either because they are not looking and/or are just refusing to change their position. Neither position is admirable and downright dangerous to us.'
Anyone who considers t3 a luxury instead of a necessity should have their basic food, shelter and air restricted and rationed and have their ability to access it controlled.
I’m now half way through BIANCOs new book so now understand this thread ……. I’m so angry 😡 that for 5 decades Drs have been treating patients based on NO evidence! Then this man continues, despite growing scientific evidence, to spout this rubbish……
This particular doctor is over retirement age! I assume that any patients who consulted with him re a dysfunctional thyroid gland would have rarely recovered their health.
Are BTA members only those that do well on T4, then? Because presumably they're going to lose a load of supporters now... surely for a charity that's going to be a problem.
Thanks for posting this, TaraJR. It’s beautifully written by Thyroid CA. I’m just wondering how the BTA is actually funded… because if it is the taxpayer, that’d be ironic enough to warrant another email to my useless (on thyroid at any rate) local MP!
I looked at the form to make a complaint to the GMC. Unfortunately it’s entirely inappropriate for the circumstances. They are obviously way behind the curve, similar to the investigation into the Police Force and yesterdays announcement on the news about the Fire Brigade. A guy interviewed (I wish I had paid more attention) said he had been approached by the NHS to “come and sort us out”. So it’s very well understood this behaviour is commonplace - just as it seems to be throughout many organisations. We have all wondered I am sure, about the Police Force and the truly incredible behaviour from officers. I won’t go over it here, it’s being done elsewhere. Doctors acting in frankly the same way should be investigated no differently. A proper complaint should be sent by letter to the GMC. Even if someone other than who we all think it was, the BTA itself is responsible for any comments under their banner.
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Moving easily, pain free. much more energy, clearer thinking.....lovely whilst it lasted.
