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.
Moving easily, pain free. much more energy, clearer thinking.....lovely whilst it lasted.
U.S. Study Shows Combination Treatment Is Safe, Effective
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.
As the majority of people who have a dysfunctional thyroid gland are mainly female, maybe we should have an organisation similar to that of:-
The suffragettes!
shaws I had that exact same thought!
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.
GP "but T3 becomes T4. "No doctor - thats untrue.
I agree! Such ignorance and arrogance. They are deluded charlatans daring calling themselves ‘medical professionals ‘! We must fight them.
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'
How shocking is that! What can we do, those of us needed T3 or a combination of T4 and T3? Will the endocrinologist stop prescribing? I do hope not.
So do I! The joint thyroid groups are doing their very best to counter it all.
That’s a relief. Thank you… but my goid, what a huge worry for those of us needing this treatment.
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.
Interesting, However, GPs are paid too much… for what they do. Lucky to see one face to Face and no home visits even for the most vulnerable people.
He may not stop prescribing as the cost of T3 has now dropped. Also as he knows you've responded well to T3 he may be willing to continue prescribing.
Why can some countries produce T3 around a little more than a couple of euros but some in UK are extortionate?
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.
It was on a different webinar, not a Thyroid Trust one
Oh. Same old, same old then!
Exactly so. He/they seem to be on a mission at the moment
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.