Tuesday, 27 May 2014

The group goes on.... and why TSH is like the Richter Scale

Our meeting on 10th May went really well. When I get the time I will write up of some of the controversies discussed in Mr Lynne's talk and the Q&A session.  He talked for over an hour, was very open and shared a vast amount of information with us, we all learned a lot and it was a very enjoyable event.  He was a lovely man and brought along his equally lovely practice nurse, Patsy, we all really enjoyed meeting them both and are very grateful to them for giving up their Saturdays to support thyroid patients in London.

One of the biggest "wow" moments for me was learning that the TSH scale is logarithmic, like the richter scale, which would seem to explain why, for me, a seemingly tiny shift in TSH value = a massive difference in how I feel.

TSH log scale slide from Mr John Lynne's talk at the Royal Free, May 2014
In the meantime, I would like to introduce the wonderful Denise Sims who has taken over from me as London Group Coordinator and who did a fantastic job of organising this meeting, with lots of help from the rest of the Team.  

Denise Sims, new Coordinator for the BTF London Group

Denise has shared her story with hypothyroidism on the BTF website -  like many of us, she's had quite a time with it.

I'm so grateful to her and to the rest of the Team for keeping the group going.  What a relief that London will still have a support group for thyroid patients.

Upcoming events include a teddy bears picnic in Central London on the day of the London 10K run, on 13th July, which several group members, including Denise, are running and the next Information Event is scheduled for 13th September.  Onwards!

Friday, 2 May 2014

Combating internet misinformation - Press Release - Thyroid Controversial Topics Event

Combating internet misinformation

The London group of the British Thyroid Foundation (BTF), a national patient charity, is organising an event for thyroid patients and people with an interest in thyroid disorders at the Royal Free Hospital, London on Saturday, 10th May 2014.

Thyroid disease is very common and usually easily treated - one in 20 people in the UK have a thyroid disorder - yet it is largely a hidden disease and many cases, where treatment is not straightforward, it can have a devastating impact on people’s lives.  

Leading Endocrine Surgeon, Mr John Lynn, MS FRCS, will be giving a talk on Thyroid Controversial Topics.

Mr John Lynn, MS FRCS, Endocrine Surgeon
Mr John Lynn, MS FRCS, Endocrine Surgeon
All past meetings of this local group have been extremely well attended and enjoyable 

 attendees at BTF London Group Feb 2014 event
This is expected to be a very popular subject, so many patients with thyroid conditions can become confused by controversy surrounding their illness, particularly if they have turned to the internet in search of answers, as many do in desperation. While they may often appreciate that the information they discover is likely to be of questionable quality still they yearn to get fuller answers about some of the controversies they come across and their doctors seem seldom to have the time or perhaps the specialist knowledge required to satisfy this need.  And not all doctors agree with each other about some aspects of thyroid care. Research in some areas is lacking. The good doctors will often admit they don’t have all the answers.  

Patients who are struggling to be well often struggle to find the best solutions amidst such controversy, even when they have sympathetic clinicians.  BTF provides excellent and comprehensive information, yet many patients remain frustrated and doubtful of what to believe.  

Dr Lynn’s long experience, patient focus and impeccable clinical credentials make him the perfect speaker to tackle this topic. 

The event will also be an opportunity for patients to share their experiences and connect with each other. 

Thyroid disease will be relevant to many of your«media_list_for_BTF_London_press_releases» readers and a real problem for some of them, we would be thrilled if you could write about our event to help reach out to those who could benefit from it. 

Where and when

The event will take place on Saturday, 10th May, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital, Hampstead. 

Refreshments will be provided. Donations will be welcomed, with a suggested minimum of £3 per person, to help cover the costs of the event.

For more information or to book a place  go to: http://btflondon.eventbrite.co.uk  

Notes for editors

Mr John Lynn, MS FRCS Surgeon, a fellow of the Royal College of Surgeons for over 40years,  previously Consultant Surgical Endocrinologist at Hammersmith Hospital and honourary Senior Lectureer in the Department of Survery Imperial College of Science Medicine and Technology is now in private practice at 9 Harley Street and has admitting rights and does ops in Weymouth Hospital, King Edward VII and the Lister Hospital: http://www.endocrinesurgeon.co.uk 

The British Thyroid Foundation (BTF) is a national patient support charity dedicated to supporting people with thyroid disorders and helping their families and people around them to understand the condition. It works with medical professionals from the British Thyroid Association and the British Association of Endocrine and Thyroid Surgeons. Website www.btf-thyroid.org 

The BTF London group, was launched in 2011 and meets around five times a year. We usually get around 50 attendees and feedback on all events so far has been very enthusiastic. 

Lorraine Williams writes the increasingly popular Thyroid Hope blog, sharing her own experiences of thyroid disease and running the BTF London Group: www.thyroid-hope.blogspot.com 

The Royal Free Hospital is six minutes walk from Belsize Park underground station, 14 minutes from Hampstead underground station, and just four minutes walk from Hampstead Heath railway station. The meeting will be held in The Atrium which will be clearly signposted from the main entrance. Parking space is extremely limited in the local area so attendees are encouraged to use public transport. 


Thursday, 1 May 2014

Thyroid Controversial Topics

Just heard the news - Mr John Lynn, leading Endocrine Surgeon, has chosen the theme for his talk to our group this month - and it's a scorcher:

Thyroid Controversial Topics.

I'ts time for Auntie Margaret's disco ball, isn't it.....

https://www.youtube.com/watch?v=ISZacjyerqc
click to play 
Auntie Margaret's disco ball 

Well I couldn't be more pleased. Looking forward to welcoming Mr Lynn to our group and to hearing his talk.

I've said it endlessly on here and it makes my blood boil, frankly that there is so much dodgy information out there on t'net, about thyroid disease (yes and about other illnesses and stuff in general too, I know).  So many people who are either misguided or seeking to profit from people who are unwell. Of course, also so many unanswered questions, so many grey areas, so much that is simply not known because sufficient research hasn't been done, or 100% proven and the whole thing is so complicated. The more I learn, the more I realise I don't know, even though I know quite a bit now. 

It will be refreshing to hear a clinician tackle this issue head on and give us the low down, as he sees it, on some of the controversies that do the rounds and that can be so confusing for patients, as well as sometimes dangerous and expensive for us. 

Oh I can't wait! 

Are you coming? You can book your place and learn more about our speaker: here