11 March 2017 11am to 2pm.
Everyone is welcome. New volunteers to help run the group are particularly welcome so if you can lend a hand, please come along.
Crown Court Church in Covent Garden, London, WC2B 5EZ (nearest tubes: Covent Garden, Holborn or Leicester Square).
Meetings will be held every other month on the following Saturdays in 2017: 13 May, 8 July, 23 September, 25 November.
The London Group held its first meeting of the year on Saturday 21 January. It was a really positive and successful meeting. There was a speaker from ‘Sense About Science’ who proved to be a really good and popular choice. Sense about Science www.senseaboutscience.org is a charity that promotes understanding and use of scientific evidence and challenges its misrepresentation. The Ask for Evidence campaign helps people request for themselves the evidence behind news stories, marketing claims and policies. The 'Ask for Evidence Ambassador' showed how, as patients, we can empower ourselves by using the internet as a source of information and comfort for our conditions.
This support group meeting included a fascinating talk by Greta Lyons, Endocrine Research Nurse at Cambridge and winner of the 2014 Evelyn Ashley Smith Nurse Award about her work with patients with a rare disorder called Resistance to Thyroid Hormone Alpha (RTHa) and Resistance to Thyroid Hormone Beta (RTHb).
We were delighted to welcome Camilla Bevington, thyroid blogger (Flamingo Monroe thyroid blog), to our support group in March. Camilla, who writes about her experiences of being diagnosed with an overactive thyroid and staying positive as she's managed her condition since, gave an uplifting talk.
We were delighted to welcome Dr Bernard Willis, a 'holistic doctor' to our support group in November. Bernard bought a wealth of information and suggestions to our meeting, he specialises in chronic illness such as adrenal problems, cancer, chronic fatigue syndrome, diabetes, male and female hormone restoration and thyroid problems.
Bernard has done much research on natural lifestyle changes, nutrition, hormones and supplements. He believes that implementing nutritional therapies means that he can treat his patients in a more integrative and holistic way, which he has practised for many years. His interests include nutrition and dietary therapy, herbal treatments amongst others.
We thank Bernard Willis for coming along to our meeting and no doubt welcome him again in the future.
Our first event of the year will be held at 10.00 on Saturday 30th January @ The Crown Court Hall, Covent Garden.
Thank you Denise & the London team...
We had the pleasure of Sarah Onions attend our October meeting, whom some of you may remember featured in a recent BTF Newsletter. Sarah talked about the discovery that her sister Lulu was born without a thyroid and the impact this had on her and her family's life in the 1960's onwards. This was a particularly interesting meeting which we all enjoyed immensely and would like to thank Sarah for coming along to see us...
Today all babies born in England are routinely screened just after birth for hypothyroidism along with eight other genetic disorders via the neonatal heel prick or Guthrie test.
Please check out both Sarah's book - 'Don't bring Lulu - A Family Tale of Trial and Triumph' and a brief history of Ron Onions.
We were delighted to have Judith Taylor, former BTF Chair of Trustees, as our guest speaker at our July meeting in Covent Garden.It is always such an informative session whenever Judith comes along... her in depth knowledge on current research, guidelines and the BTF itself is always inspiring.
Judith spoke particularly on the way patient information has changed since she was first diagnosed in the sixties when there was literally no support or education, to the development of patient organisations such as the BTF, to the present day and the increasing patient involvement and empowerment. It was an informal and interactive session with much interest around what the BTF can offer.
We also had several enquiries from new attendees regarding children with thyroid issues, click here for more information on children and thyroid and how the BTF can help.
Covent Garden, Saturday 30 May.
It is quite amazing just how many newcomers are joining us at our meetings... it is lovely to meet those newly diagnosed and seeking a group of understanding and supportive folk all with their own stories and experiences to share and learn from. This is made equally enjoyable by our regular followers and 'hardened' attendees who have found the group to be a place of social and mutual respect... Both the London team and I always comment on the fact that we all learn something new/or of interest every time we meet up... there is certainly lots to learn and appreciate with a Thyroid Illness... (another reason why we like to encourage, partners, friends and family to along to our meetings too, just to give them a little further insight of what you may be going through, suffering or feeling)
We obviously appreciate that now we are organising monthly meetings we won't see you all every time... but believe the simple fact that you know we are there each month is reassurance in itself if you are looking for a little empathy, support or information.
We were so very lucky to enjoy the talk provided by Nicki Williams this month on the topic of 'Happy Hormones' or at least how we can encourage them to become 'Happy Hormones'...!!
We were very impressed with her broad knowledge on this subject, specifically where our thyroid and autoimmune issues were involved, plus dietary pro's and con's which are always interesting... and as usual, no one rule fits everyone... this is a very individual condition.
Nicki can be found at Happy Hormones For Life please contact her directly or email firstname.lastname@example.org should you require any further information or details of any other talks/workshops she has planned.
We held our latest social/support group on March 28 at the Crown Court Church Hall. We had a fantastic turn out and welcomed many new comers along with our regular attendees to our morning of chat, information and tea and biscuits!!
As usual the morning was a huge success and once again we had many positive comments regarding both our new location and most importantly much appreciation from those in need of a supportive ear and a welcoming smile.
We held our first BTF - London Group 'Support and Social Event' on the 14 February, at our new venue at The Crown Court in Covent Garden. We can confirm the new event/format was received extremely well and we have had lots of interest for our next one in March.
The need for a more informal 'support group' in the London area has been a long time coming and we hope to be able to offer this facility each month for those who would like to socialise, learn and support others who understand, care and simply want to meet those in a similar situation...
The morning was divided into three sections; introductions and informal conversations with the BTF team, members and attendees, a workshop whereby we discuss one or two specific topics or issues on thyroid related subjects and finally an opportunity to think about and share experiences, gaining support, help and understanding.
The meeting was an opportunity to discuss what the group want and need from a support group.
As a group we have developed and grown over the past few years and we would like to continue this on and with YOU in mind.
We heard your suggestions and views on a variety of issues, some of which are listed below...
- New Venue - Possibilities...
- Newly diagnosed members - what information they need and what they need from us?
- Support - Individual 1:1 support, Group Support..?
- Guidelines and information - where to find it, who to ask, what are we entitled to on the NHS?
- Speakers - suggestions?
- Research - More information on current projects and research...
Our plans are such that we will, along with a new venue or two, try to incorporate all your feedback and suggestions over the forthcoming months...
This was our last event at The Royal Free Hospital, Hampstead, London and we would like to thank the Royal Free Hospital for their support over the last 3 years.
Our recent meeting held on the 13 September at the Royal Free Hospital in Hampstead introduced a new format to our usual conventional speaker style event. We introduced a 'Question Time' style format and invited a guest panel to discuss and answer previously submitted questions from our audience. To our delight I can confirm that it was an all round success.
Our panel consisted of Lorraine Williams: ex chair/coordinator of the BTF – London Group, Thyroid Hope blogger and patient advocate, Judith Taylor: BTF Trustee, Editor and Patient Advocate, Dr Melanie Thomas: Employment Law Specialist Lawyer & Thyroid Patient & Nona Parry: Reference Librarian and Information Manager & Thyroid Researcher. Our panelists did an amazing job of answering questions, offering answers, suggestions and detailed information for our London audience.
From the feedback we have received this was a very welcome event, which provided our guests with an opportunity to have their issues and questions answered. That aside, the information provided by our speakers covered a broad range of topics from 'What is the role of the BTF?', 'Is the a thyroid condition considered a disability?' to 'Details of thyroid cancer symptoms?' Such was the enthusiasm of both our panel and audience we ran over time... 3 hours goes so quickly when your having fun!! Nevertheless we managed to get through all of the questions submitted by those present...
Feedback included the following...
- 'I really enjoyed the session, and I am very pleased I was able to attend. May I extend my gratitude to all the panel members for their expert advice. Keep up the good work London BTF' – N. Crichlow
- 'Great idea... we get to ask the questions that are important to us individually – well Done the London Group' S. Dosanjh
- 'For me its not so much an enjoyable event... more invaluable and most informative' – G Webster
- 'I thought it was great!! I was so interested to hear different responses to each question!, N. Parry
- 'Thank you very much – I really appreciate this forum for learning more and being inspired to keep going on this journey of working towards greater wellness. Thanks to all the panelists for such useful information and sharing their own journeys'. Anonymous
- 'Very helpful – Thank you'. L. Mora
We would like to thank our panel, Lorraine, Judith, Melanie and Nona for their time and sharing their combined wealth of knowledge.
I would like to thank the London Group, particularly Ian for his IT/tech skills, time and enthusiasm and all the team who were so involved with our new format/event.
We propose to add a 'Question Time' style event to our annual event calendar.
Our May event welcomed leading Endocrine Surgeon, Mr John Lynn, to our BTF – London Group event.
Mr Lynn has been a fellow of the Royal College of Surgeons of London for over 40 years. For 29 of those the sole Consultant Surgical Endocrinologist at the Hammersmith Hospital, London and Honorary Senior Lecturer in the Department of Surgery, Imperial College of Science, Medicine and Technology. In his career he has performed in excess of ten thousand explorations of the neck.
We were most excited to have My Lynn join our event and what a fantastic talk he provided too... The theme... 'Thyroid: Controversial Topics'
As expected this was 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 so many do in desperation. While they may often appreciate the information, they discover it is likely to be of questionable quality but still they yearn to get fuller answers about some of the controversies they come across and their doctors seem seldom to have time or perhaps the specialist knowledge required to satisfy and/or treat this need.
Mr Lynn's long experience, patient focus and impeccable clinical credentials make him the perfect speaker to tackle this topic.... And tackle it he did... thoroughly.
We would like to thank Mr. John Lynn for a first class speech and presentation.
Feedback included the following...
- 'Excellent content. Learned something new' J. Taylor
- 'Very Informative' J. Ochitree
- 'Dr Lynn was extremely generous with his talk and sharing expertise' J. Young
- 'Thank you so much Mr Lynn, so much to take in, I'm overwhelmed!! So interesting and so involved, who'd have known??' K. Bell
- 'Wow, great talk' K. Jones
This was a planning meeting held in the House of Lords.
Nine BTF London Team volunteers met at the House of Lords on 26 March to discuss the future of the London Group, kindly hosted by our patron, Lord Borwick of Hawkshead.
Denise Sims has now agreed to take over from Lorraine Williams as coordinator for the group, with support from the rest of the London Team. Lorraine will continue chairing the information events at the Royal Free.
Thirty of us attended the British Thyroid Foundation Patients Voices meeting at the Royal Free in Hampstead this weekend. 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.
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:
- Managing symptoms (lifestyle and diet, etc)
- Getting the most out of our doctors
- Psychological Wellbeing
- Having a Career with Thyroid Disease
Each group then fed back their key insights and issues to the group as a whole.
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. Thanks to all who came, particularly those who helped make it happen.
Professor Margaret Rayman and Dr Sarah Bath (University of Surrey) spoke on the topic of 'Nutritional Science and Thyroid Function' focusing on selenium and autoimmune thyroid disease and iodine, goitregens and thyroid function.
Mr Fausto Palazzo, Consultant Endocrine Surgeon gave a talk on Thyroid Surgery.
Emma Thomas, shared her experiences as a patient of thyroid surgery and hypoparathyroidism.
In addition we enjoyed a short guided relaxation session, networking time and a lively Q&A session.
More information on this event on Lorraine's blog
This meeting was at the Royal Free in Hampstead. We called it Patients Voices and we had about 30 thyroid patients attending, with a range of thyroid conditions and varying levels of experience and knowledge about them.
The London Group now have an excellent format for these kinds of meetings which you are welcome to copy if you want to do something similar yourself. Here is the programme:
10am – Registration and refreshments
10:05 – Introductions – Who are we with thyroid disease?
Everyone is invited to sit together in a circle and share: our names, how we found out about this event and what we are hoping to talk about today, those who wish to can also share what thyroid condition we may have and how we are feeling today.
11:15 – Relaxation session – those who wish to are invited to participate in a short guided meditation before the break.
11:20 – Announcements
11:25 – Break, refreshments will be served and you are invited to choose a breakout discussion group to join after the break
11:50 – Discussion groups – we will break into smaller groups to explore those issues which have been identified as being of most interest. Eg: Psychological Wellbeing, Getting the most out of our doctors / Managing symptoms...Questions for future speaker topics etc.
12:40– 1pm The groups will feed back on the key things they discussed and any actions they have agreed which they'd like to share with everyone, for inclusion in a report for the British Thyroid Foundation website and Lorraine's blog.
1pm – close
In the first session we identified several common themes that were of interest to most of us and so the discussion groups after the break were as follows:
- Diet and Lifestyle
- Psychological Wellbeing
- T3 - what's it all about? And how do we access reliable health information?
- How to get the most out of our doctors
- Spotting and managing symptoms
We used volunteer facilitators from within the group who had appropriate skills and had agreed in advance to lead the break out discussions. We had created a set of guidance notes for facilitators and 'meeting ground rules', these are also available if anyone would like a copy to use in future.
Each discussion was lively and fruitful.
The topic was thyroid function and psychological wellbeing. We had two patient speakers, Lorraine Williams and Jo Clayton and one expert, Professor Colin Dayan, a highly regarded endocrinologist and head of the molecular and experimental medicine unit at Cardiff University.
We were also joined by Chrysanthi Papoutsi of Imperial College London who was recruiting thyroid patients for a study into patient views on NHS digital record keeping. (12 BTF London Group members have now agreed to take part in a focus group discussion with her team on 9th March this year.)
Lorraine Williams and Jo Clayton opened by giving talks about their own experiences of psychological symptoms and managing their psychological wellbeing with thyroid disease. Our stories were very different but both had similar themes of having been very unwell, struggling with it, feeling out of control and very unnerved/frightened by the whole experience, ultimately finding that a combination of mainstream treatment (which we had both spent a lot of time being suspicious of) and mindful self management have led us back to being able to function and feel pretty well, though in both our cases it has taken quite a while. We got lots of very positive feedback about the patient talks with many people saying they had found them a particularly valuable element of the overall programme.
Then Colin Dayan gave his talk which was excellent and well received. Colin took an unexpected but very interesting approach to the subject. He basically asked us to put ourselves in his shoes and pretend we were doctors, for the duration of his presentation. Then when we had the Q&A session, he said, we could go back to being patients and he hoped a fruitful dialogue could be had, to help work out some of the conundrums around thyroid disease and psychological wellbeing.
He then set about presenting the facts as far as they are known according to current research, including that of his own team in Cardiff. He shared that current research in this area is a global effort with teams around the world looking at different aspects and sharing information over a period of years, slowly building up knowledge and seeking answers that will help thyroid patients. It seemed that his team have a particular interest in a subgroup of patients – hard to treat hypothyroid patients.
There is, potentially, a significant proportion of hypothyroid patients who are being treated with thyroxine yet are more likely to be depressed than either the general population or hypothyroid patients in general. Some of the questions researchers are asking are:
- Is this coincidental or somehow linked to thyroxine treatment?
- Could combination treatment (with T3 and T4 meds) be better for these patients?
- Is there a genetic marker that could help identify these patients and get them on optimum treatment sooner rather than later in the future?
The group were fascinated to learn about this work and so grateful that the scientific community is taking some of our issues seriously and investing time, money and effort in trying to come up with some answers that will ultimately help thyroid patients.
One thing that really came across however, was that while work like this is extremely valuable and important, there are so many issues, beyond how much and what kind of thyroid hormone to give a patient, that affect our psychological wellbeing.
So few patients are steered to consider dietary or lifestyle changes for example - and many are not tested for other conditions or vitamin deficiencies by their healthcare professionals. And so few are offered counselling or CBT, or if they're offered it the potential benefits may not be explained properly and it can come across as if they're being told their illness is all in their heads which is the last thing we need to hear when we are doing the best we can to take care of ourselves and stay sane. It seems there remains a real gap in medical knowledge around psychological wellbeing, gut health, vitamin D and other potential autoimmune connections. Clearly more research is needed and in the interim patients who find they are proving hard to treat - and their doctors - may have to be open minded to try different options that could help them feel better.
Sadly, several attendees shared experiences at this meeting of not being listened to and not having their experiences acknowledged or addressed effectively, by their doctors, and this was reported as being a very significant factor affecting many people's psychological wellbeing while ill.
Lorraine shared with the group that posts on last year's NHS Choices Forum with the BTF highlighted this issue and that BTF have undertaken some work with GPs surgeries in Harrogate to start to address the situation. The London Group are keen to find a way that BTF can do more to improve standards of care for hard to treat thyroid patients via the NHS, perhaps by setting up a working group to address the issue. It's hard as the charity is small and already has so many projects which take up a lot of resource but we are hopeful that something can be set up and that perhaps London Group members can be involved in some capacity.
We finished on a positive note, with a big round of applause for Professor Dayan and recognition both that there is much that thyroid patients can do to help ourselves and there are many good doctors focussed on doing the best they can for their patients. Though they may acknowledge that they don't have all the answers, they are prepared to work collaboratively with their patients to try and find the best solution or combination of factors that will make the most difference for each of us.
The topic: Thyroid and Pregnancy - event write up by Alexandra Dedman
The expert: Dr Stephen Robinson, St Mary's Hospital London
I went along to the 6th meeting of the London group of the British Thyroid Foundation (BTF), held at the Royal Free Hospital in North London. Speaking was Dr Stephen Robinson, a consultant in endocrinology at St Mary's Hospital, London. Dr Robinson explained how important organisations like the BTF and other patients groups are in helping to ensure patients receive good thyroid care, especially when they are pregnant.
I found the talk absolutely fascinating and the people attending the meeting really were lovely! I also learned a great deal about pregnancy issues for people with thyroid problems and picked up some really useful hints and tips. I'm not pregnant, but I want kids, so I stored it all away for later use.
What happens to the thyroid during normal pregnancy? Dr Robinson explained that the thyroid naturally increases in size during pregnancy, powered by the swirling mix of hormones triggered after conception. As a result, many women may actually develop higher thyroid hormone level during the first stages of pregnancy. This is not usually a problem, but it could be if the mother already has high levels of thyroid hormone to start with.
As the baby grows, nutrients pass from the mother to the baby through the placenta, the organ which acts as the gateway between the mother and the baby. The placenta can regulate certain types of thyroid hormone (T4), and so if the mother happens to have too much thyroid hormone (i.e. if she is hyperthyroid), then the placenta can help control how much reaches the baby. However, another type of thyroid hormone (T3) cannot be regulated by the placenta, and so this could cause problems if the mother has too high levels of T3 hormone before she becomes pregnant.
Many women in the UK may be iodine deficient The baby needs iodine from the mother for healthy growth. This means that if mother doesn't have enough iodine in her diet she may become deficient. Until recently, there was no data on iodine deficiency in the UK, however Dr Robinson talked about an excellent study by Dr Mark Vanderpump at the Royal Free Hospital, London, which found that almost 20% of school-aged girls in the in the UK are iodine deficient (see this study here: http://www.thelancet.com/journals/lancet/article/ PIIS0140-6736(11)61689-9/fulltext). He explained that iodine deficiency is obviously a very important concern for women in the UK.
The underactive thyroid in pregnancy If the mother has an underactive thyroid which is not treated, the baby can grow without the right amount of thyroid hormone. This can affect the baby's development both in the womb and even well into childhood. There are also higher risks for the mother, who is more likely to suffer preeclampsia (life threatening hypertension during pregnancy) and miscarriage. Dr Robinson emphasized how important it is for women with an underactive thyroid to take extra thyroxine as soon as they learn they are pregnant. He explained that studies have shown that as many as 75% of mothers with an underactive thyroid will need to take more thyroxine than usual during pregnancy. This has led to the suggestion that perhaps all women should be screened for hypothyroidism during pregnancy. However one study has shown that screening during pregnancy may be too late to prevent thyroid-related complications, and in fact, Dr Robinson suggested that women with an underactive thyroid should perhaps increase their thyroxine by an extra 25 50 mg a day as soon as they know they are pregnant.
The overactive thyroid in pregnancy. Untreated high levels of thyroid hormone can cause serious problems for both the mother and the baby. However, if thyroid levels are well controlled, then most women will have a normal pregnancy. Dr Robinson recommended that if you have a condition which causes your thyroid to be overactive, then try and speak to your endocrinologist before you become pregnant, so your treatment during pregnancy can be planned. If you find you are pregnant, then see your consultant as soon as possible.
The majority of women with an overactive thyroid have an autoimmune condition called Graves disease. Certain types of antibodies which are produced when a women has Graves disease can cross the placenta and sometimes affect the baby's thyroid development. For this reason Dr Robinson recommended that pregnant women with Graves disease get their antibody levels checked and make sure their thyroid levels are normal. Drugs normally used to treat an overactive thyroid such as carbimazole and polythiouracil can usually be taken during pregnancy at low doses which don't cross the placenta. They can also be taken during breastfeeding without harming the baby.
If you have a thyroid disorder and become pregnant: Do not worry! Most women with well-controlled thyroid disorders will have a successful pregnancy.
- Tell your clinic or doctor immediately.
- If you are underactive, increase your thyroxine intake as soon as you know you are pregnant by 25-50 mg a day, even before seeing anyone.
- Have your thyroid levels checked three times during pregnancy and again 2-3 months after you have given birth.
- If you have Graves disease, also get your antibody levels checked.
- It is safe to breastfeed on thyroxine and on low doses of drugs used to treat an overactive thyroid.
For more information see the British Thyroid Foundation website and their excellent leaflet on pregnancy and fertility with thyroid disorders.
The London Group held another successful information event on 4 August. Dr Peter Taylor, holder of the current BTF Research Award, who works under Professor Colin Dayan as a Welsh Clinical Academic Trainee in Diabetes & Endocrinology in the Thyroid Research Group based at the Institute of Experimental and Molecular Medicine in the School of Medicine at Cardiff University, returned to the Atrium at the Royal Free in Hampstead following his very well received talk to the group in March, to talk about research into hypothyroidism.
Once again he also kindly spent an hour answering questions on all aspects of thyroid disease. Peter’s group are particularly interested in genetics as they relate to hard to treat hypothyroid patients and it is hoped their work may in time bring about new treatments for the estimated 16% of hypothyroid patients who fit into this category. They recently received a very encouraging response to an application for funding for a new clinical trial and are in the process of re-working their application in the hope they may be able to secure support for more work. We will aim to provide a summary of his talk in a future newsletter and on Lorraine’s blog.
Saturday 5 May 2012
Who are we with thyroid disease?
In May the London Team held a meeting with a difference. Since we began last year we have wanted to do a meeting without an external speaker, to allow the maximum time for members to talk amongst themselves. However, we felt that it might be challenging to structure such a meeting and to ensure that everyone’s voice was heard and all would have a positive experience.
In the end we worked together to create a format that worked really well. We were delighted with the largely very positive feedback from attendees.
On arrival everyone was given a copy of the programme and a set of “ground rules” which the Team had worked out in advance and which proved to be popular with everyone:
We are all patients here
We ask everyone to be mindful of the following guidelines for this meeting:
- Be supportive of each other – don’t be critical
- Allow everyone in the group to have their say
- Don’t give medical advice
- We are here to share our experiences and learn from each other but remember that what works for one person, may not work for others – so don’t try to push solutions onto others
- No pushing un-orthodox treatments
For the first half of the meeting we all sat in a big circle (there were 33 of us) and everyone had a chance to introduce themselves to the group as a whole and to say how they found out about the event, what they were hoping to talk about in the meeting and anything else that they wanted to say about their condition and how they were feeling. This worked really well, people were very open and supportive of each other.
After this we had a relaxation session before the break. This consisted of a short guided meditation from the Expert Patient Programme course book, read by Team member, Allison Duggal. Many of us have learned how using relaxation techniques such as meditation can help us to feel better on a day to day basis and we all enjoyed having the opportunity to sit quietly for a few minutes together and the meditation script, which described walking in a beautiful garden, was a lovely way to relax.
During the introductions several key themes had emerged as things that people wanted to talk about. These were:
- Managing Symptoms
- Psychological aspects of thyroid disease
- Getting the most out of our health professionals
- Living with Graves Disease.
We invited people to choose one of these topics during to break and to register for one of four smaller discussion groups that would take place in the second half of the meeting.
We had created some guidance notes in advance for the volunteer facilitators from the Team who led these groups. And we agreed in advance that each group would feed back to the wider group at the end.
The group discussions seemed to go really well. Everyone was keen to listen to everyone else and we all had lots to share.
The groups fed back as follows:
This group talked about:
- How in some cases a Vitamin D deficiency diagnosis and subsequent treatment had made a big difference for some of us and we encouraged others to ask for a Vitamin D test if they hadn’t had one already.
- Many in the group found managing their weight could be very challenging though some hypothyroid patients reported they found it difficult to put weight on, most of us struggle to lose pounds.
- The benefit of gentle exercise, particularly walking. We all thought the BTF Big Summer Walk campaign was a great opportunity to get groups of thyroid patients walking together and how nice it was to go walking or do other exercise with others rather than alone.
- Ensuring medication is taken at the same time each day.
- Avoiding alcohol as it seems not to agree with so many of us.
- Good diet, although we were unsure what constitutes the best diet for thyroid patients and to what extent we needed to be mindful of goitregen foods such as soya.
Getting the most out of health professionals
This group talked about:
- Using the guidance in the EPP leaflet to get the most out of consultation time.
- Changing doctor is an option.
- Trying to see the same practitioner on each occasion can help as you can build up a relationship.
- Describing symptoms clearly rather than talking too much about feelings helps the doctor understand what is going on.
- Being assertive, without being aggressive.
- Asking questions and taking responsibility to understand our own conditions.
- Exploring different treatment options and asking for a referral if the GP has done as much as they can and we still feel unwell.
- Kelp tablets can interfere with thyroid medication and do more harm than good.
- How discovering shared symptoms in the discussion made them feel much less alone.
This group talked about:
- GPs, colleagues and family members tend not to understand the emotional aspects of thyroid disease.
- Mental slowness and memory problems are very worrying, we find ourselves wondering are they a sign of dementia or something else.
- Difficulties around being a parent.
- Routines are helpful.
- It can be difficult to plan events.
- Concerns about appearance.
- Confidence often suffers.
- Walking, yoga, tai chi and pacing ourselves can be helpful.
- Anxiety is worth overcoming – there is pay back.
- Group members were keen to have more access to relaxation, life coaching, dietician support and help with memory strategies to help manage the mental and emotional aspects of thyroid disease.
This group talked about:
- There are lots of knock on effects of having Graves, such as: sinus problems, other autoimmune conditions, joint pains, palpitations and other symptoms
- In many cases Graves Disease went unnoticed for years before being diagnosed.
- Doctors often didn’t take patients seriously
- Be persistent to get optimised treatment
- Treatment for Graves is not a cure and people often don’t realise that at the outset.
- Other autoimmune problems can manifest over the years
- Doctors don’t give you this information, which creates confusion when further problems arise as they are not anticipated.
- Not everyone gets the same symptoms.
While one person mentioned afterwards that she wasn’t comfortable talking about feelings without focusing on positive solutions, on the whole almost everyone said that they found the groups enjoyable and useful. We now plan to do more of this kind of thing at future meetings.
All of the groups reported that the discussions made them feel less alone. Peer support is a wonderful thing.
The groups also wondered whether BTF or BTA might consider funding some work into thyroid disease and nutrition in the future as this area is of such interest to patients and yet seems to be under researched.
(Pictured are sisters in law, Angela and Tracy, with Tracy's husband, Angela's brother, Gerry who all travelled from Hastings to attend the meeting.)
Saturday 3 March 2012
The London Group held their 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 (pictured) 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 that the focus on TSH levels alone may not always be sufficient.
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 those at the meeting to know that there are researchers taking thyroid conditions seriously and working hard to make things better for 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.
The 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.
Saturday 15 October 2011
Graham Williams, BSc, MBBS, PhD, FRCP, Professor of Endocrinology at Imperial College London, Treasurer of the Society for Endocrinology, member of the European Thyroid Association Executive Committee, board member of Endocrinology, Thyroid, Journal of Neuroendocrinology, Expert Review of Endocrinology and Metabolism and Hot Thyroidology, President of the British Thyroid Association and British Thyroid Foundation Ex-Officio Trustee, gave a fascinating talk about his specialism, thyroid and bones.
Mr Williams' research into the molecular mechanisms of thyroid hormone action on bone is internationally recognised and he was recently awarded the Society for Endocrinology Medal in recognition of his outstanding studies. His talk brought his cutting edge research to life for thyroid patients and gave us all plenty to think about. He was also kind enough to answer questions for over an hour covering almost every aspect of thyroid disorders.
Gay Search, television presenter and British Thyroid Foundation patron, also gave a very good talk, despite being bitten on the eye by an insect in her garden the day before and having to wear sunglasses to protect her injury. She kindly shared her experiences of her goitre and full thyroidectomy from which she has made an excellent recovery.
Once again we are grateful to the Royal Free for the use of their room and would also like to extend grateful thanks to GX Gallery of Camberwell for lending us a beautiful little wooden easel to display a small print of Anna Knights. Everyone who attended agreed that they had found the event useful and had learned something new.
Saturday 9 April 2011
This was the inaugural information event of the London BTF group.
Mark P Vanderpump MB ChB MD FRCP, Consultant Physician and Honorary Senior Lecturer in Diabetes and Endocrinology at the Royal Free Hampstead NHS Trust in Hampstead, spoke about thyroid disease. Dr Vanderpump has published on various aspects of thyroid disease, served on the Executive Committee of the British Thyroid Association (BTA), is a member of the Finance Committee of the Society for Endocrinology, and has Chaired the UK Iodine Study Group on behalf of BTA. His presentation featured the results of this new iodine study, and he put it into context for thyroid patients.
Judith Taylor, Trustee of the British Thyroid Foundation and Editor of BTF News, spoke about the work of the BTF.
Nurcan Cahill, from the NHS Expert Patient Programme, spoke about free NHS courses to help patients manage chronic health conditions. Two of the London Team have since signed up for a course.
We also previewed a short film introduced by Fred Wickham from the Royal Free Nuclear Medicine Department. This film has been produced for hyperthyroid patients considering radioactive iodine treatment. BTF members were invited to provide feedback from the patient perspective.
The London Team would also like to thank Wilma, Tracey and Brenda from the Milton Keynes Group, who helped us out with this event.