Ok so I’m unblocked. I’d tell you how I managed to get them to do it but I’d only bore you. Probably something to do with the onslaught they got on their page along with my 2 e-mails I sent them but it’s been done. And I’m grateful they did. It shouldn’t have happened to begin with.
As you may or may not know they have had ALOT of interest on their Facebook page this week and they’ve faced a lot of angry patients upset that it’s taken until they were under real pressure on social media to speak out on Liothyronine and the NHS Consultation.
They have now published this on their official website!
Still denying the need for L-T3 treatment and fighting the turf war, only endocrinologists should prescribe. There is a change in stance, but it has only come about after BTF funding from Concordia has dried up and Concordia is on the verge of bankruptcy.
Any idea why Concordia are on the verge of bankruptcy. Cannot be to down to the extortionate prices they charge for Liothyronine....unless it is due to the CCGs refusing to pay them for it by taking patients off it via doctors.
The proliferation of online health information and forums has added to the confusion. Access to peer support is often beneficial but unfortunately patients sometimes find misleading and false information about their condition and the treatment options, and the consequence of this can lead to faith in their own doctors being undermined, and they are left concerned and confused.
Yes the parts about "signposting to quality information to avoid confusion" 'by 'finding out about alternative treatments' is how it reads, COMPLETELY RUINED IT. We're not confused that we've discovered our problems are still thyroid related on T4 only, that led us to pursue other treatments; we ARE WELL. No confusion about it!!! That is a massive put down and everything I despise about thyroid belittling "care".
Yes, there were a few references to patients finding confusing or misleading information on the internet. I got bored with it in the end. They still seem to think that doctors know best. They are totally missing the point about all those doctors who do not understand thyroid function and treatment eg all those who have never even heard of T3!!!!
Yes, I stick with my GP as he admits I know more than him and just does whatever tests I request and allows me to make the decisions. When I first saw him with T3 results, he openly admitted he knew absolutely nothing about T3 and I was in a better position to understand the results and decide what to do. That's why I stayed seeing him to be honest, because at least he admits it unlike the others! However, in my opinion, this doesn't help those who don't understand these things and they get paid way too much to not know!
From my viewpoint, I'm mildly encouraged by this BTF statement, especially if you compare it with past thinking of not so long ao where T3 treatment was virtually dismissed. Whilst they acknowledge some people require T3 (not a vanishingly small minority - this is no longer alleged) they also acknowledge the difficulty of switching patients from T3 or T4/T3 combo to T4 alone. Considering how slowly intellectual changes are made by these bodies, at least there seems to be movement. The big fly in the ointment is the stated need to do trials on T3 supplementation. If new trials are done on the unselected patient bases that have been used in the past (Randomised clinical trials) they will find nothing useful, because the minority of patients benefitting will be always swamped by the majority of hostiles or indifferents. Prior selection of patients according to FT4/FT3 ratios on T4 therapy must be done to get anything useful out of a trial. You would then expect the group with the highest ratios to be better treated with T3 and those with lower ratios, indifferent or even hostile.
I wholeheartedly agree, imho the ‘research’ often cited has flaws. To progress there has to be more joined up thinking in terms of patients studied, duration of treatment and optimal t4+t3 ratios. The BTA review of American and European guidance summarises nicely the overall lack of understanding of ‘low fT3’ both on benefit and safety.
They also happily ignore your research, Diogenes, where you have highlighted aspects of thyroid functioning, and the different thyroid levels in "normal" vs medicated people.
I'm currently waiting for my endo to get back to me about one of your recent papers. I'm suspicious that the delay is because he knows thT it explains beautifully why I NEED T3 as well as T4, but he's reluctant to admit it. He has promised to "review" the paper and write to me, but we'll see!
I'd be interested in a) if there are any wellgrounded criticisms rather than lofty handwaving dismissal, and b) if the latter, how many papers your endo has published in his/her own right on the subject.
A world where the best possible treatment and care is accessible to all people with thyroid disorders and where avoidable thyroid disorders are prevented.
Mission
To provide people with the highest standard of support and information based on the best current medical evidence and patient experiences, to work in partnership with medical professionals and patients in order to facilitate a better understanding of thyroid disorders, and to ensure all people have access to appropriate treatment and care.
Values and Beliefs
We must put the needs of members and people with thyroid disorders before any other consideration.
We will provide a quality service based on medical evidence and patient experience which is accessible to everyone.
We are committed to remaining open minded and will do our best to encourage involvement and foster peer support.
We believe in a culture of success and a harmonious and rewarding working environment where individuals and teams can flourish.
We will demonstrate a professional approach to our work at all times.
I'd say not in any way shape or form. The sole purpose of a mission statement is to serve as an organisation's goal...look at what they actually do. Is that helpful to anyone suffering thyroid issues?
They are a bunch of self-serving antediluvian reptiles. IMO, you understand.
They say some patients with normal thyroid function tests still do not feel well on levothyroxine and fee better on T3. But what do they call normal thyroid function tests? I was deemed to be one of those people TSH 1.6 and T4 within range albeit a bit on the low side. And indeed I do feel better with added T3. But then if they had bothered to do a T3 test they would have found out mine was below range and therefore it could not have been termed a patient with normal TFT's. I felt better with T3 because I was lacking in T3. And that is how they can get away with trying to make out that it is only a matter of preference and therefore we could do without it. When they recognise we need it because we have a deficiency in it, they may take it more seriously. How can they say that patients have normal TFT's when they only do half of them.
Well done Pamela, and thank you for all your efforts. Who knows how big an effect you've had but we should always remember that small ripples can create big waves.
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Kardia EKG - the answer to my worries over my palpitations and heart racing!
Banning T3 - what do you do next ? 
