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

I have now stood down as London Group Coordinator and would like to thank the remaining Team members who are commited to continuing.

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, are running and the next Information Event is scheduled for 13th September.  Onwards!

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

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. 

Onwards, upwards, sideways....???

So great news, we had a brilliant meeting at the House of Lords last month and the British Thyroid Foundation London Group will continue! I am no longer the coordinator.  Phewweww, a relief. The vast majority of the stuff I've been doing has been divvied up and shared and my only residual responsibility is to chair the group and support those fabulous individuals who have taken stuff on. Call me a chair.

this artwork, gifted to me in 2008/9 at a Landmark Education event
is about how we relate to reality.

One day I'll explain the artwork above. For now, it just tickles me to include it.

Our next London thyroid patient information event meeting is 10th May 2014. Our speaker is Mr John Lynn, a very eminent endocrine surgeon.  He sounds great. Details including how to book a place are on this link.

I'm beyond grateful to all those who have stepped up to take on different aspects of keeping the group going. You know who you are. Let me know if I can add a public acknowledgement here - perhaps a link to your blogs and / or twitter pages....?

I think you'll be hearing a lot more from us in months to come.

What next? What can I do that will be most powerful?

Thinking about some of the thyroid related things I would like to do once I've stopped running the BTF London Group.

While I need to move on with my life and don't want to be forever harping on about all things thyroid, I still feel passionately that it's important to raise awareness of thyroid disease and things that people can do to help themselves, also to raise standards of care for thyroid patients who are currently not always being treated consistently or well.  And while I salute BTF for all that they do, I feel there is scope for a great deal more to be done and as they are so under resourced and seemingly so slow to get themselves resourced up to do more, well it just seems like there's a glaring gap that needs to be addressed, so maybe I will give myself a project....

Will I:

• Write a book? 
• Pitch articles to magazines and periodicals?
• Pitch talks to groups of medical professionals?
• develop this blog as more of a resource?
• collaborate with a science writer to provide more articles on latest scientific research?
• Seek to influence Mind (the UK's leading mental health charity) to start to provide more information and support for thyroid patients, because they currently don't think it falls within their remit?

Ouch, so many possibilities, I could in fact quite easily spend my entire life on this stuff. And that's not going to happen. So I have some thinking to do and some decisions to make, what to do, what not to do, where to focus.

In the shorter term I am off to the House of Lords next week, to meet with my fellow BTF London Team of volunteers, kindly hosted by our wonderful patron, Lord Borwick of Hawkshead, who is also taking us on a tour of the House which will be exciting.

We will be seeking to find a way to keep the London Group going with me not running it any more. I am excited that nine enthusiastic and wonderful people are coming to that meeting, between them I'm sure they'll find a way to prevent the group from folding. The challenge is that everyone is either not very well, or super busy, or both. But the plan is to try and split the tasks so the load is shared, and perhaps to do things differently in future so that the whole thing can maybe be simplified and become less onerous to do.  

The House of Lords, Westminster

It's a little  ironic, to be going to such a seat of established power as the House of Lords and at the same time trying to decide what subsequent action I can take that will be most powerful in the face of what seems like an overwhelming challenge - how to make things better for hard to treat thyroid patients in this country.  I hope that this meeting can be a catalyst for meaningful change, somehow, someway. It signifies me moving forward powerfully into the world. Giving up the admin headache of running the group and freeing myself up to do something bigger.

Of course I may decide to leave thyroid things alone for a bit. I have a lot of other things going on in my life. Very many competing priorities. I may decide to focus on something else entirely. Perhaps my letting go of the group is also time to let go of the wider challenge and trust that other people are going to be able to bring about the changes that need to happen.  The BTF Hypothyroid Care Strategy Project is underway now after all, and I was one of the people who pushed for that to begin.

One of the many wonderful friends that I have connected with on this journey now seems to have entirely moved on and is pioneering an important campaign for muslim feminists. Her example inspires me. I feel I need some space to think and breath and the answer, to the question of what I want to do next, will come to me.

Hope

Thyroid Patient Voices, Feb 2014, London event write up

Most of the attendees at the Feb 2014, BTF London Group meeting
thanks to Darren Holman for taking this picture

Thirty of us attended the British Thyroid Foundation Patients Voices meeting at the Royal Free in Hampstead this weekend.  It was amazing, as these meetings always are. Sadly it may be my last one. I told BTF in January that I will be standing down as London Coordinator after this meeting and since then I’ve been trying to arrange for another coordinator to carry it on. Though there are lots of other London volunteers now, who have got involved in the group since it was set up, no one else has thus far said they feel confident to take over running things.  And I’m not surprised, it’s a lot of work, which is why I’m standing down.  I’ve been doing it for three years now and it’s time to move on. I’ll continue with this blog and if the London Group continues I expect I’ll continue to have some involvement and I certainly anticipate staying in touch with the many wonderful friends I’ve made. I hope there may be other ways I can support BTF. But enough is enough.  Being a local coordinator, especially for our capital city, well it’s a big job. I can’t continue to justify the amount of my time it takes.

I’ll be meeting soon with the other London based volunteers to see what we can come up with in terms of a plan for the future.  Watch this space for updates. At the moment we have dates in the diary with the Royal Free for future meetings to take place in May, Sept and November (details on BTF website) so I do hope those meetings will go ahead. Time will tell.

On Saturday everyone had a chance to say a bit about themselves and their journey with thyroid disease to date. Some were newly diagnosed and slightly anxious, seeking information, what to expect and what could they do to help themselves. Some had been ill a long time and had some bad experiences but were now at a point when they were relatively well, a couple were very disillusioned with the medical profession but most, it seemed to me, had found doctors they could work with, who were supportive, even though they may also have had some previously who were not very good. Some people there were really struggling. I think we all found it helpful to be together and share our experiences.

Judith Taylor, chair of trustees for BTF and also the editor of the BTF newsletter and thyroid cancer booklet etc, so a very knowledgeable lady, who told her personal story at one of our previous meetings, came along, which was great. Although we didn’t have an expert speaker for this event it was good to be able to refer some questions to Judith who knows so much.  

We like the Patients Voices events as much as the Information Events, it’s good just to be able to talk to each other.

The key issues that came out of our first group discussion and were identified as subjects for further exploration, in smaller groups after the break, were:

1.     Managing symptoms (lifestyle and diet, etc)

2.     Getting the most out of our doctors

3.     Psychological Wellbeing

4.     Having a Career with Thyroid Disease 

Each group then fed back their key insights and issues to the group as a whole.

One interesting action point that came out was a suggestion to BTF to develop a leaflet for employers to help them understand thyroid disease and how they can support employees with a thyroid disorder. One of the attendees is an employment lawyer who deals with disability law and she and Judith are going to take this idea forward which I think is a great initiative and many members welcomed the idea enthusiastically.

It was also interesting to note that many attendees had quite high powered jobs, as I did too, once upon a time.  Hence the discussion group we created about having a career with thyroid disease – this was a major concern for many of us who felt our capacities to perform somewhat diminished and find ourselves sometimes struggling to manage our work lives. I worry often about the millions of thyroid patients who are perhaps less naturally dynamic than this self selected and very proactive group who have all sought and found help for ourselves – and yet are still often in difficulties. I do feel the NHS – or someone - should be doing more to provide these sorts of groups more proactively to a wider group.  I would love to be making this happen but I have to draw a line under how much of myself I am prepared to give.

The comment I kept hearing – and I could identify with, particularly harking back to when I was very unwell -  was “I’m so glad to hear I am not the only one having X or Y or Z experience/symptom and now I know I’m not going mad!”  Being able to meet and chat with other thyroid patients was just wonderful, as it always is.

Everyone really enjoyed the discussion groups. It would have been good to have had more time, but running an event like this is tiring so I have always limited them to half a day and I think that’s been the right thing to do, for my own and the other volunteers’ wellbeing.

Anyway. I’m happy that we had another good event. Thanks to all who came, particularly those who helped make it happen.   Who knows what will happen next with this group. Hopefully we can find a way for it to continue.

Thyroid surgery, London patient event 7th Sept 2013 - info

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, 7^th September.

Leading Consultant Endocrine Surgeon, Mr Fausto Palazzo, he will be talking about thyroid surgery and answering questions on all aspects of thyroid health.  

Mr Fausto Palazzo, Consultant Endocrine Surgeon, see bio below

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

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 some cases can have a devastating impact on people’s lives. 

Thyroid surgery is used in managing several disorders of the thyroid gland and there are several different kinds of surgery. Complications are rare and usually treatable but can be significant. To avoid complications, thyroid surgery should always be performed by an experienced surgeon who regularly performs thyroid operations.

Thyroid disease will be relevant to many of your 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, 7 September, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital.

For more information or to book a place, email lorrainewilliams@btf-thyroid.org.

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

 Notes:

Mr Fausto Palazzo is a Consultant Endocrine Surgeon at Hammersmith Hospital and Honorary Senior Lecturer at Imperial College London where he is Clinical Lead for Endocrine Surgery. He trained in general surgery in London and in endocrine surgery in Oxford, Sydney and Marseille. He has one of the UK's largest practices in thyroid, parathyroid and adrenal surgery and in 2012 performed over 350 procedures including 160 parathyroidectomies and 40 laparoscopic or retroperitoneoscopic adrenalectomies. His specialist interest is thyroid cancer, re-operative parathyroid surgery and minimally invasive endocrine surgery. He teaches on national and international courses and has published extensively on all aspects of endocrine disease and surgery. 

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 has been established for 21 years and 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 40 attendees and feedback on all events so far has been mostly very enthusiastic.

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.

You are warmly invited to attend this event, just be sure to email me to book your place in advance. 

The next event after this one is 2nd November, on nutritional medicine and thyroid disorders, with speakers from the University of Surrey MSc in Nutritional Medicine. 

Danielle's story - congenital hypothyroidism

Danielle very kindly shared her story with me last year. I hope it will be helpful and reassuring for anyone else diagnosed with congenital hypothyroidism, or who has a child with this condition.  

British Thyroid Foundation website also has telephone support contacts dedicated to talking about children's thyroid disorders so you may also want to follow up with them. 

Here is Danielle's story, as told to me in 2011:  

Danielle and baby Joseph, 2011

"I was diagnosed with hypothyroidism when I was around 6 weeks old, at a time when testing at birth wasn't carried out. My parents were concerned that I wasn't active or growing quickly, and the GP suggested a test. 

As a baby I was given thyroxine in liquid form, but I only remember later on, having 2 pills crushed and put in with cereal and milk. I quite liked the little ritual and though I was aware of my condition, I didn't see it as an illness, and certainly didn't feel I was different to my friends.

However, when on holiday, for example, I was frustrated when being made to get completely dry after swimming and before I could go and play, as the difficulty in keeping warm would make me shiver uncontrollably. On the whole, I had no fear of doctors, hospital or needles, and apart from a brief phase of getting almost hysterical, I was happy to go for blood tests- I still have an interest in medicine which I think started then. I certainly felt well-informed and was never worried by the idea of having hypothyroidism as it was always clearly explained that it is treated very simply with daily tablets. 

As a teenager I had phases of poor compliance, which were serious enough to affect my health. The resulting forgetfulness probably exacerbated the problem and although the doctors wanted to manage my hypothyroidism carefully during that time, in retrospect I don't feel I took the condition seriously. In my 20's I was still guilty of forgetting a dose here and there, although I
never felt the symptoms of under-replacement particularly badly. On one occasion the GP remarked that he was very surprised to see a very lively and energetic person in front of him given the very low t4 and very high (20 to 50) tsh levels on the recent blood test.
 When we were trying to conceive, I discovered that it could take longer as a result of the condition, though I was pregnant within a year of trying, and I found it helpful to read about other womens experiences of being hypo and having children. Of all the things I could do for my baby's health, being diligent with taking thyroxine would be the most important and since I
conceived, my attitude has been different as it's no longer just myself I'm responsible for.

 I was under consultant care throughout pregnancy and had frequent blood tests and extra growth scans, which thankfully showed that the baby was growing and developing normally.

In February I gave birth to Joseph, a perfect little baby boy (7lb 13 oz). When it came to his heel prick test results I was confident that if he did have hypothyroidism, it would be fine and we would know how to make sure he was healthy. He isn't hypothyroid, and I've since found out that the form I have isn't thought to be hereditary. 

With good gp care and access to clear information about the condition, and how it affects pregnancy and the growing baby, starting a family has been the same adventure as anybody else's, and hypothyroidism hasn't caused us any worry. Joseph being successfully breastfed for 6 months and is a very healthy boy with no allergies or other issues, and is an exceptionally smiley and good-natured baby! We're very lucky.” 

Thank you Danielle - it is so good to hear your experiences and Joseph looks adorable! He must be getting bigger now, time flies.  I finally posted this today in response to a question about congenital hypothyroidism elsewhere on the blog. I think Lisa will be really interested to read your story and something tells  me that it will be really helpful for others to read too - it is very good of you to share it. 

Love and light to all reading this. Comments are warmly welcomed, as ever. 

Hope

New thyroid research techniques and future treatment....

My loves, it has been too long, I won't bore you with excuses as I have something much more interesting to share..... new news from the cutting edge of thyroid research!! Read on....

On 3^rd March 2012 the London Group held our third Information Event at the Royal Free in Hampstead. The meeting was well attended once again, with two great speakers.

Dr Peter Taylor, BSc MBChB MRCP SCE, based at the Centre for Endocrine and Diabetes and Sciences, University Hospital Wales and recipient of the 2011 BTF Research Award gave a fascinating talk about new thyroid research techniques and future treatment.

Peter explained that treatments for thyroid disorders have not changed for around 40 years and doctors tend to think that this is fine as they are easy to treat, however a significant number of patients are not seeing good results from the standard approach and the focus on TSH levels alone may not always be sufficient.

Dr Peter Taylor addressing the London Group of the British Thyroid Foundation

In some respects, by not addressing this issue, the mainstream medical profession could be seen to have lost control of the situation and there are now a lot of alternative practitioners who are not qualified endocrinologists, particularly on the internet, who may just be out to exploit patients, by offering dubious treatments to those who feel let down by their normal doctors. In some cases these alternative treatments can do more harm than good, particularly in the long term.  

Equally misdiagnosis of thyroid illness as depression or vice versa leads to inadequate treatment and dissatisfied patients. Given thyroid function tests are relatively inexpensive, it is important to make sure the diagnosis is correct, by repeating tests if necessary; as many working hours will be lost to undiagnosed or poorly treated thyroid conditions.

The UK leads the world in the field of public health research, yet there has been a lack of good research in this field. It is clear that more steps are likely to be needed in diagnosis and treatment of some thyroid disorders. The reference range for “normal” TSH is based on population ranges and may not be be an optimal range. Studies have shown that variation within the reference range influencing pregnancy outcomes, lipid levels, blood pressure and risk of cardiovascular disease.  Factors other than thyroid disease can affect TSH readings, such as smoking, or being unwell.

The good news is that some exciting new research, made possible by recent advances in genetics, may mean that patients who are currently difficult to treat could be helped in the future by new treatments that could be available in the next ten years. It is likely that thyroid disease could be one of the first non cancer illnesses to benefit from personalised medicine, where treatments are tailored to the individual’s genetic profile. Already studies have identified new genetic variants that may impact thyroid function, beyond hormone levels.  These may enable us to predict if people may feel better if treated with a combination of T4 and T3. Some patients find that Thyroxine treatment can cause them to feel worse initially. It is possible that in some rare instances thyroid hormones aren’t reaching the brain properly so that blood test results can be misleading.

As an area of research, the thyroid is starting to gain more interest, particularly as public health professionals are realising that both high blood pressure and heart disease risk can be improved by treating borderline thyroid function. Recent successes in optimal use of Thyroxine to improve fetal development and pregnancy outcomes are also helping to generate interest in the research community.

Inevitably medical research is slow and new treatments will take time to filter through but it was heartening to all of us in the room to know that there are researchers taking our conditions seriously and working hard to make things better for us and other patients.

Peter also answered questions for more than an hour, on almost every aspect of thyroid disease and everyone found him to be most sympathetic and knowledgeable.

Our second speaker, Sheila Sturgeon of the Expert Patient Programme CIC gave an excellent talk on self management of chronic illnesses and getting the most out of health professionals. Several of the London Group have now signed up to do Expert Patient Programme courses.  

Our next London event is on 5^th May, 10am – 1pm at the Royal Free once again. I'm hoping to confirm our speaker(s) in the next couple of weeks.  Visit the British Thyroid Foundation website for details of the programme nearer the time and to find out if there's a group near you if you're not in London. As always if you want to come to our next meeting, just let me know. Everyone is welcome.


Sending smiles.

Thyroid and Bones Event Pictures

I'm so happy I can't tell you. We did our second information event today. Professor Graham Williams gave a fascinating talk about thyroid and bones and spent over an hour answering questions on all aspects of thyroid disease.  Broadcaster, Gay Search, of BBC Gardeners World, shared her personal experiences of having a large goitre and full thyroidectomy.

I'm just happy because it went so well. 100% of the feedback forms said that people strongly agreed that the event was helpful and they learned something new. Everyone was really nice. We did really well with donations for the charity aswell and several people have offered to get involved with helping in the future.

Poor Gay had been bitten on the face by something in her garden and had to wear sunglasses as her eye was terribly swollen but she was cheerful, charming and highly engaging - despite her injury.

Graham was so knowledgeable and patient and thorough and lovely and friendly, explaining everything so clearly and going into so much detail and background to really bring his subject to life for us. I will write a post summarising his presentation once I've had a chance to go back through my notes.  I feel like I learned more today than I have in the last year. And some of what I learned has really challenged what I previously thought I knew....

It was so interesting!! And I was so much clearer headed and energetic this time than I was when we did the event back in April. It really brought home to me how much better I am now. Hurrah!

For now I'm just going to share some of the photos from the event. But I promise to write more about today soon.....watch this space....

Professor Graham Williams

Gay Search

Professor Graham Williams and Lorraine Williams (no relation), going through the pre-submitted questions

The Q and A session

Initial reflections on our first meeting....

Woooh, my brain's swimming, just been up on the roof doing some pseudo yoga/pilates stuff to stretch out my muscles (can’t do any proper yoga/pilates stuff right now as I haven’t quite got the energy for it, but I’m getting there). It’s a beautiful sunny day. Lovely.

We had our event this morning, so I’m pooped!  Not sure how many people turned up as I think we slightly lost count. That doesn’t mean there were millions, we think about 40 or 50 maybe. But generous souls that they are they gave us some lovely donations and we raised £145.29, including two new memberships for the BTF. And there were some great comments, lots of people saying how much it meant to them to be able to connect with other people with thyroid disorders, to access reliable information and particularly to hear Mark’s talk.

Mark was brilliant, his talk on the UK’s iodine status was fascinating and he answered a huge number of questions. Unfortunately there were so many written questions submitted and he answered them so thoroughly that we didn’t have a lot of time for further questions from the floor so there wasn’t as much two way dialogue or time for attendees themselves to speak as I would have liked to have seen.

Our programme was quite packed in the end, I’ll say more about what else went on in my next post.

We got everyone to fill out evaluation forms and I can’t wait to see what they said on them. Another Team member is typing them up this week so she took them home with her. My husband saw a few though and thought they looked broadly positive.

For my part I couldn’t focus brilliantly on the talks because my brain was a bit fluffy! Which is a shame but I can watch them on video at a later stage, because the wonderful Lindsay and Scott from Refinery Productions captured the whole thing for us on camera. Thank you guys for your incredible generosity in doing this for us! Assuming I can work out how to upload film files you too will be able to see the whole thing in due course!  

Stand by for a video stream, but don’t hold your breath, it may take me some time to do (apparently there will be a few things I need to do with files before the youtube stage so you might need to bear with me).

Once the dust has settled I know there will be lots we can learn from today about how to do an even better event next time.

Several of us were very taken with the idea of doing an Expert Patient course together so we will be looking into that as a possible group activity.

We also gave people the opportunity to vote for what topics they would like to see covered in future meetings. By far the most popular was “how to get the most out of your doctor”.  Many of us, sadly, have experienced communication difficulties at one time or another with the medical profession.

And it was noted that sometimes people with thyroid problems can seem difficult for professionals to communicate with, because we can suffer from impaired cognitive function which might cause us to appear super sensitive, depressed or not very clear about what we want to say.  So this feels like a very hot topic and something I hope we can address to help our group members develop productive partnerships with their doctors and access the best possible care.  It is a shame that the onus seems to be on us as patients to improve OUR communication skills! But we are nothing if not tenacious and resourceful, so we soldier on!

I think an Expert Patient course, entirely for people with thyroid disease, could be a brilliant step towards this! Something exciting to think about!

We already have a date in the diary for our next Endocrinologists talk. Graham Williams from Imperial will be discussing his speciality, thyroid and bones on 15^th October, which I think will be fascinating.

But perhaps we can do more between now and then. A few new people today indicated they might be interested in getting involved with the Team so it will be great to consider our next steps together with possibly some fresh input, at the same time as reviewing today properly.

I will post again when I’ve had a chance to think about it all a bit more, I feel I’m going to have quite a bit to say about this event, but just wanted to  get this up today and say – hurrah! We did it!!

The London Team have got our first event under our belts!

Thanks for reading and for your support and if you were there today – why not comment below on your impressions – I’d love your feedback (especially as I’m still to see those evaluation forms!)

Hope J

Lorraine