British Thyroid Foundation Patient Event - NICE guidance

[lynmynott]

The British Thyroid Foundation is hosting a patient information event in London on Saturday 8 February 2020 in Westminster. The BTA were very happy to support this meeting and most of the speakers are BTA members or members of the NICE committee. They include Dr Kristien Boelaert (Birmingham), Dr Mark Gurnell (Cambridge), Dr David Halsall (Biochemist and head of Specialist Endocrine Testing, Cambridge), Dr Glenn Flux (Nuclear Medicine Specialist, London), Dr Renee Hoenderkamp, GP and Dr Anh Tran, GP.

It will be a good opportunity for anyone interested to learn more, ask questions and meet others. For more details and to register please go to our website. bit.ly/31mlmv0

[jimh111]

I saw Dr David Halsall give a talk at Cambridge BTF, he was very level headed and not blood test only biased.

[helvella Administrator Thyroid UK]

Are they going to hold any further events round the rest of the UK?

The BBC, for example, in recent years have recognised that there is a lot of UK, and UK population, not in or near London.

[lynmynott Partner Thyroid UK in reply to helvella]

I don't know. They may well hold one closer to their offices.

[Hidden]

I did go to several BTF meetings in Bolton over 10 years ago and was hoping there to gain an insight as to why I failed to get well on Levo alone. I left without learning a single helpful idea and NDT did not exist as far as they were concerned.

I learned more in 5 minutes reading postings and the answers from actual patients on TPA and here than I did in 8 years talking to the BTF, GP's, endocrinologists and others.

[lynmynott Partner Thyroid UK in reply to Hidden]

I think they have changed their stance a little now.

[lidoplace]

Thankyou Lyn for highlighting this meeting. I notice that the speakers are predominantly from the NICE Thyroid guideline committee . I wonder if they will justify their actions on this committee or give insights into the process which decided on such detrimental and backward looking ideas while ignoring patient input ? Although the final guideline is yet to be published the real sufferers in today’s TSH and monotherapy regime are the patients , many of whom have had their lives ruined over decades of blinkered endocrinology dogma.

[lynmynott Partner Thyroid UK in reply to lidoplace]

Yes, this meeting is all about the NICE guidance. I think people can ask questions. Unfortunately, it all comes down to there not being enough good evidence to show that T3 is beneficial for patients. I went to a symposium on Sunday and it was definitely implied that the previous research was not the right research and I think there will be a new batch of research come out that may well show benefits for patients. I will be writing a report hopefully this week.

[lidoplace]

Lyn , interesting to hear the Sunday symposium has come down on the side of research needed.(After all they are researchers not thyroid disease sufferers) all your efforts over the years highlighting the problems patients have since the introduction of T4 monotherapy has counted for nothing. Patient experience is taken into account in other areas and the lack of empathy towards thyroid patients is appalling. There is over 100 years of successful treatment with NDT for example , which is more relevant than abitrary clinical research which has become more and more compromised by the system used to report on trials which may not be relevant to our condition in the first place.

[lynmynott Partner Thyroid UK in reply to lidoplace]

I really do believe now, though, that the research they want to do will be looking at things differently i.e. looking at ratio values and looking at different groups of patients rather than the population as a whole. I am a little optimistic about future research but not, unfortunately, about the new NICE guidance. However, I do think that the NICE guidance will state that more research is needed which will then encourage researchers to do better T3 research.

[Marz in reply to lynmynott]

Whilst BIG Pharma rules the waves and finances research - the correct research will never be acknowledged or the correct treatment prescribed - and so we bumble along . I have read that over 80% of NICE members are on the pay rolls of pharmaceutical companies - so what chance do we have ?

[lidoplace]

Meanwhile we are all getting older and dropping off the end!