23 September 2017

Professor Stephen Robinson MA MB BChir, from St Mary's Hospital in London, kindly gave up his time to give an excellent talk about Thyroid Eye Disease and answer questions afterwards. 

Professor Robinson is a general physician specialising in endocrinology and sub-specialising in endocrine complications of pregnancy. He was educated at Cambridge, Westminster Medical School. He then obtained an MRC training fellowship at St Mary's for his higher degree (MD at Cambridge). His expertise is in endocrinology, diabetic medicine and thyroid disease as part of Imperial thyroid cancer multidisciplinary team, and he has a particular specialism in the endocrine complications of pregnancy, (which he kindly gave a talk to our group about, a few years back). He has researched and published on endocrinology, diabetes, the endocrine complications of pregnancy and thyroidology.

Fourteen people attended, including five who either hadn’t attended a meeting previously or were returning after a long gap. Most had signed up in advance via Eventbrite. Karen and Theresa very kindly volunteered their time to run this meeting. Caroline and Lorraine were both away.   For future meetings we must ensure we have more volunteers available to help and thankfully two potential new helpers came forward at this event and we are looking forward to following up with them. 

Professor Robinson's presentation was well-delivered and easy to follow and understand. Afterwards he answered a range of questions arising from his talk. After a refreshment break the group reconvened and Prof Robinson dealt with a range of questions, mostly relating to Graves and TED but also other aspects of thyroid disease

Karen then gave the group an update on discussions that have been taking place around the new charity and asked anyone interested in being a trustee to get in touch. All were pleased to hear that London meetings would be continuing. Karen gave details of dates for future meetings through until the end of 2018 (click here to see future meeting dates)

Feedback forms were put on every seat along with a slip showing dates for 2018 
 
7 forms were completed with most responses scoring each aspect of the meeting 5 out of 5. The presentation was very well-received.

Comments included the following: 

Aspects particularly enjoyed/enjoyed most: "the actual talk and Q&A", "meeting others who have experienced the same condition", "Questions" "very good talk and Q&A session", "joining others to hear about their health issues",  "hearing others' experiences and the expertise of the speaker"

Suggestions for the future: "Talks on general health so we can maintain strength",  "would be good to learn about Hashimotos and whether diet can affect autoimmunity"

Other comments: "great communication!" and "thank you"

One attendee mentioned not finding out about the speaker until the week before via the website. Everyone who requested to be added to our contact list will receive email notifications of meetings in future, unless they unsubscribe. 

Some people noted that the building was somewhat cold, unfortunately we cannot control this so would suggest that people ensure they bring an extra layer to future meetings during the winter months

We did not request donations his meeting but were nonetheless given donations totalling £39 which were gratefully received and one attendee additionally bought a pack of British Thyroid Foundation charity Christmas Cards for which we collected £3.99 which will be sent to BTF along with any other sales money generated in November. 
​

8th July 2017

 We had our July meeting in Covent Garden yesterday and enjoyed an excellent group discussion.

Turn out was our lowest yet. Possible factors for this include that it was a very hot day and a major event in London had caused significant travel disruption. We received four apologies from group regulars.  Although there were only six of us there, the smaller group gave us an excellent opportunity to talk more deeply which we all very much enjoyed.  

We did not request donations at this meeting. 

We began with a welcome statement that included a re-statement of why the group exists: because we all rely on it and feel it is so important that there should be a place in London where thyroid patients can access reliable information and peer support. 

We then gave a status update. Since BTF have changed how they work with local groups and we are currently operating as an unsupported voluntary association a benefactor has offered us funding to set ourselves up as a separate charity and we are exploring that option.  

We then held a group discussion reviewing the above: 

We all agreed there is a definite unmet need for more support for people with thyroid conditions and that in addition to continuing to run support meetings in London a new charity could seek to address some of the following: 

• More publicity to raise awareness of thyroid conditions
• Getting BTF leaflets into GPs
• Providing a forum for more dialogue between patients and medics.

The above could save the NHS considerable money by improving diagnosis rates and optimising treatment (we know anecdotally how many people go to their doctors and appear not to be being treated according to BTA guidelines)

We observed that London is full of advertising for Floradix and Beroca touting themselves as cures for tiredness but some people who feel unreasonably tired may have a thyroid condition yet in many cases will never even have heard of their thyroid (many of us hadn’t, prior to diagnosis) and will not think to go to see their doctor so that possibility may not be investigated. 

We compared other health conditions which used to be low profile but are now the reverse, for example breast cancer. Lorraine used to work for Cancer Research UK - including on the breast cancer awareness campaign - and has some insight into campaigning activities that could be effective.

We discussed the pressure that GPs are under with short appointment times etc and we also considered that the narrow focus that some endocrinologists have is not always helpful for treating patients who may have complex needs.  

From anecdotal reports over all the years the group has been operating, many GPs don’t appear to be aware that they can adjust a patient’s dose and should be aiming to restore wellbeing with treatment and not just focussing on blood test results.  We understand that their training at medical school, if it was some time back, may have told them that treating thyroid conditions is easy and so some of them don’t appear to recognise the 5-20% of patients who are ‘hard to treat’ and many patients are simply sent away and told that they are “fine” if their blood tests are in the “normal range” and yet they are still unwell. Therefore those of us who fit into that category often need to find “exceptional GPs” who can help us and it can be very hard to put the work in to find such a GP when debilitated by a thyroid condition. 

The important messages about thyroid disease in pregnancy are not getting through in many cases and more awareness raising amongst women of child bearing age - and GPs - is needed. BTF did a campaign some time back but it had very limited reach, the small TiP cards it produced were not enough to make a big impact.

We then moved to a group support discussion where each of us stated how we were feeling and explored both burning questions and pearls of wisdom that members wished to share. 

It was so comforting to be in the group and be able to hear others expressing issues we could all relate to and to share suggestions and ideas of ways to overcome difficulties relating to our conditions. 

Shared Experiences

All could relate to feeling ‘not ourselves’, apathetic, disorganised, emotionless, confused, disorientated, hyperdistracted and less sociable than usual when unwell. 

All agreed on the importance of eating well and exercising and living a healthy lifestyle – and we all do our best to practice this. 

All reported ourselves as being naturally quite sociable and relatively active and expressed concern for those people with thyroid conditions who may be less likely to be able to access the support group or a good level of care.

For all of us, the experience of our brains not working properly is “a bit distressing” but most of us at the meeting would not describe ourselves as experiencing depression. 

We all felt that as people with thyroid conditions we seem to be more sensitive to allergies and susceptible to other illnesses than the majority of people.  We are all keen to avoid the label of being hypochondriacs and often work hard to overcome and deny being unwell, in order to be ‘normal’. 

Those of us who look at thyroid discussion boards noted that they are often of very mixed quality and while it is desirable for more information to be shared online and for patients to be able to share information, there is not yet a satisfactory online forum for thyroid patients that feels like a safely regulated space. There are a lot of crank doctors and other kinds of practitioners out there, as well as patients who sometimes push opinions that are not helpful, but equally online information sharing can be very useful providing it is undertaken cautiously. Discerning how to judge those with medical credentials who may advocate unconventional treatments was seen by some as being particularly hard while others were more inclined to only trust wholly mainstream advice. 

One member is feeling very unwell at the moment and we all encouraged her to seek help from her doctor – and to change to a doctor who she can be confident in if she doesn’t feel she is being given a good standard of care.  

We talked about the importance of acknowledging to employers when we are unwell and may need to take time off or require other support and we all recognised how hard this is to admit to ourselves when in this position. 

While some in the group would consider ourselves reasonably well informed about our conditions and reasonably well able to advocate for ourselves, others reported that the medical science feels impenetrable to them and while they may not have confidence that their doctor is following good practice in their case they don’t know how to query the specifics of their treatment decisions.  We emphasised the value of taking BTF literature to show to doctors as it is very clear and will be recognised as being from a reliable source so should be taken seriously. 

All reported sometimes feeling the need to withdraw from others to restore ourselves to tranquility and that sometimes it feels easier to isolate ourselves than to explain to other people what is going on with us. 

Burning Questions

How would the group like to move forward? 

How to know what to believe when medics do not always agree about treatment options?

How to engage effectively with the research agenda for thyroid conditions, as a patient with a science background who has their own research findings to contribute. How to overcome the sensitivities of medics who appear resistant to taking on information from outside their speciality.

How to resolve unexplained symptoms when GP is unhelpful. 

One person wondered why they always felt worse from April to August and we talked about whether this could have anything to do with seasonal allergies or something else. One member reported previously losing their voice every March to September, another reported a bout of extreme asthma that lasted months and turned out to be caused by allergies which are now well managed thanks to specialist referral to the allergy clinic at St Thomas’. Allergies the group have experience of include: oral allergy syndrome, other food allergies and allergy to sulphates and silicilates. Homerton Hospital allergy unit was also mentioned favourably and had helped one member after 10 years previously attending an ENT clinic which had not been able to help. 

We noted that the majority of the group members are hypothyroid and that those with other conditions have particular challenges. 

Pearls of wisdom shared:

Practising mindfulness can be a great way to reduce the stress of being unwell and can also be a good energiser. 

Make the effort to find a GP and/or specialist who gives you confidence they will give you a good standard of treatment – even though it’s hard to advocate effectively for yourself when you feel unwell it is vitally important to access a good standard of care – and there are plenty of excellent doctors who can help out there. Talk to your doctor calmly and respectfully about any concerns you have. If you dont feel confident in the doctor you're seeing, shop around if you need to. You can also take BTF literature to show them. Particularly emphasise the key line in the leaflets for treating hypothyroidism that the goal of treatment should be to restore good health and not just to get blood test results within the “normal range.” 

Vitamin D deficiency symptoms can be very similar to some hypothyroid symptoms and Vitamin D deficiency is now known to be very common – health service advice is now that everyone should take Vitamin D supplements and some group members have reported a profound improvement in wellbeing from taking Vitamin D. Knowledge about Vitamin D has moved on a lot in recent years so don’t rely on information that may have been given to you several years ago about it.

Not all doctors know everything so always be prepared to question any advice given and keep an open mind. 

Be very cautious about researching information online and only trust reputable sources of information. 

PBDEs (polybrominated diphenyl ethers) - One member, who has a background as a computer programmer mathematics and computing, shared his 20 year journey and research to resolve hypothyroidism caused by endocrine disrupters PBDEs – and shared his concerns that toxicology and environmental issues require more research resource and attention.  He is currently seeking a medic who will work with him on a trial with more patients under endocrinologist supervision, on a treatment option his research has led him to. This lengthy discussion warrants and will be given a separate write up and we are now seeking a medical speaker who could come and talk to the group on this topic.

Finally we talked about the future of the group

We agreed that we must have a medical speaker for our meeting in September and Lorraine will now ensure that happens with a list of possible names put forward. 

We need to source a projector for use with speakers, or use a room with AV set up.  We may be able to borrow or hire one – anyone who may be able to help with this is asked to please get in touch. 

Lorraine will update the rest of the group and seek to retrieve past meeting reports to add to the website along with this report 

A meeting will be scheduled in third or fourth week of August for those interested in helping shape the future of the group and potential trustees.  

Those present very much liked the suggested name, Thyroid Network, as it felt modern and appropriate to our aims and values, to be discussed further.  Other possible names were also considered. 

The next general meeting is scheduled for 23rd September at Crown Court Church. 

We will hold six meetings next year in January, March, May, July, September and November. The July 2018 meeting will be an outdoor social event – perhaps tying in with another wellbeing related event in central London. 

Previous Meetings

Previous talks have included:  thyroid and bones (Professor Graham Williams), thyroid and pregnancy (Professor Stephen Robinson), thyroid and mental health (Professor Colin Dayan), UK Iodine Status Study (Professor Mark Vanderpump) Nutritional Science and Thyroid Function (Professor Margaret Rayman and Dr Sarah Bath, Univ of Surrey Nutrition MSc), New Thyroid research and future treatments, (Dr Peter Taylor) Thyroid Controversies (Professor John Lynn), Thyroid Surgery (Mr Fausto Palazzo, with a patient talk about hypoparathyroidism by Emma Thomas) and Sense About Science Ask for the Evidence by PHD student Liam Shaw.