Saturday 12 May 2018
Weston Colville Reading Room
Cambridge CB21 5NX
Do you have questions related to medicines use and healthcare in general that you have always wanted to ask but never got the opportunity or felt comfortable to ask? Would you like to share your experience and ideas and learn from others in a familiar environment?
You are invited to meet for a coffee and informal discussions on living with thyroid disease. BTF information will be available at the meeting.
Our guest speaker will be Dr Nikkie Umaru, a practising pharmacist registered with the General Pharmaceutical Council (UK), and her presentation will start at 11am. Dr Umaru will discuss all matters related to medicines use, medication safety, self-care, pharmacy and healthcare.
The Community Conversations about Medicines Initiative facilitates engagement in informal conversations to support people in getting the most benefit from their medicines use, pharmacy services and healthcare services. This outreach initiative is supported by The Eastern Academic Health Science Network.
To book a place call Mary on 01223 290263 or email email@example.com
We held a drop-in information meeting in Michaelhouse Cafe, Cambridge on Monday 27 November. This was well attended both by existing members of the group and people who had found out about the meeting from the website and by word of mouth. BTF information leaflets were available. Topics discussed included individual experiences of treatment, diet and availability of liothyronine (T3).
Our meeting was at Hills Rd Sixth Form College, Cambridge on Saturday 20 May. This was a new venue for us and was mainly rated as excellent by attendees.
Dr Mark Vanderpump, President of the British Thyroid Association and BTF Trustee, talked about the BTA/BTF hypothyroid guidelines and answered many questions. This was an interesting topic relevant to many of the group and the talk was very well attended. As one member said 'Dr Vanderpump was so informative with a nice light touch, and very generous with his time - really very much appreciated.' We would all like to thank Dr Vanderpump for coming to speak to us.
The November meeting was a support group meeting in the cosy meeting area at Weston Colville Reading Room. We shared our histories of thyroid disorders and found that it is really helpful both to be kept up to date with current trends and to know that other people have the same concerns and experiences as ourselves.
Our March meeting was held at Weston Colville Reading Room and was very well attended. We had two speakers, Dr Diana Wood, Endocrine Consultant from Addenbrooke's Hospital , Cambridge who spoke about common thyroid disorders including the historical development of treatment which the audience found very interesting, and Lucy Malby, a patient and scientific researcher who has worked on thyroid hormone measurement. Her talk was 'Me and my Thyroid'. This was very entertaining and gave some members of the group a chance to role-play antibodies together with a cuddly toy. This gave us a painless introduction to immunology. There was also time for the speakers to respond to questions from the audience.
This was an informal panel meeting of patients and clinicians including Judith Taylor, Expert patient and former Chair of the BTF, Dr Jassim Ali, Cambridge GP and Greta Lyons, Thyroid Research Nurse at Addenbrooke's Hospital discussing questions about thyroid disorders including opportunities for all to share their comments.
The meeting went well and was very informative and interesting. Very many thanks to our panel and the questioners.
Below are some useful links referred to in the meeting:
Hair loss and thyroid – this chimes with what Dr Ali was saying. It was written in response to some members trying expensive non-prescription remedies.
Iodine facts by Sarah Bath and Margaret Rayman.
Dr Ali recommended www.patient.co.uk particularly for advice on how to deal with stress and anxiety.
We met for coffee and a chat and then listened to our two speakers. Mr Geoffrey Rose, Eye Surgeon at Moorfields Hospital London and BTF Trustee gave a most useful overview of the current activities and research projects being undertaken by the BTF. Dr Peter Taylor then gave an entertaining and informative talk entitled 'Thyroid Research and Future Treatments' and this was followed by a question and answer session when both doctors answered many of our queries. There was lots of positive feedback from the group and we'd like to thank our speakers for meeting with us.
Miss Rachna Murthy, Consultant Opthalmologist and Oculoplastic Surgeon Ipswich and Addenbrookes Hospitals and Dr Paul Meyer, Consultant Medical Ophthalmologist at Addenbrookes Hospital gave a very informative and entertaining talk on Thyroid Eye Disease (TED).
They started their talk with an overview of some statistics:
- Graves' disease, an autoimmune condition, is the most common cause of overactive thyroid. It affects 2% of population.25%-50% of people with Graves' disease will develop TED.
- TED is more common in women (smoking used to lead to more men with TED). 10% of people who have TED have no thyroid abnormality, whereas 10% are hypothyroid.
Both TED and Graves' are autoimmune conditions, and current research is taking place in order to identify a common cause.
TED initially causes swelling and inflammation in the muscles of the eyes, which can be reversible. However, over time it causes scarring and fibrosis of the muscles. MRI of the eye muscles can show both stages and allows one to determine how much is reversible.
Common symptoms and psychological effects
Initially TED can be difficult to differentiate from conjunctivitis. Pain behind the eye is unusual with conjunctivitis. It can be asymmetrical (not sure why, but everyone is somewhat asymmetrical), but usually develops in both eyes eventually.
Appearance of bulging eyes can just be eyelids being retracted: might not be caused by TED, could be reversible effect of thyroid disease. (The high levels of thyroxine leads to over stimulation of the sympathetic nervous system which causes the eye lids to slightly retract - this over stimulation will stop once the thyroxine levels return to normal.)
In TED material is deposited into eye muscles behind the eye. If eye is restrained from pushing forwards, muscles can crush the optic nerve causing sight loss. This needs orbital decompression but is rarely required, Dr Meyer has seen 5 cases in last 15 years.
More commonly proptosis (eye pushed forward) occurs and the optic nerve is not damaged. It can be impossible to close eyes (causes drying out + damage to corneas). Eyedrops helpful to stop cornea drying, you can get better eyedrops on prescription.
Another problem is that altered position of eyes alters forces applied when blinking and can ruffle up the conjunctiva (painful) "superior limbic keratitis". Most serious cases of proptosis may cause optic nerves to be stretched taut and eye movement can become impaired (fibrosis: scar tissue in muscles).This need not happen! Risk factors can be reduced and early intervention prevents problems. Significant risk factors are smoking and ongoing endocrine problems.
Smoking is bad for you! Any form of nicotine is a risk. Giving up smoking can mean very rapid improvement.
Surgery may be required to return to more normal state once disease is inactive. e.g. realign eyes when there's double vision. Using prism glasses vs. surgery... if you can control double vision with a prism then that's usually preferable.
Radioactive iodine can cause progression of TED and new TED. It exacerbates autoimmune response in body and releases TSH receptor protein into body in large quantities.
Any evidence of TED contraindicates radioiodine. After RAI early thyroxine replacement is important and steroids may be used to control autoimmune response. Thyroidectomy is safer for eyes.
No surgery is necessary on eyes if medical management is timely and appropriate.
Use of immunosuppression in TED interrupts immune system with intravenous steroids and involves introducing something to prevent autoimmune response restarting + prevent fibrosis (cyclosporine A). There have been good results on 14 patients with optic nerve compression.
Triggers and drives of TED
Radioiodine/thyroidectomy causing antigen release, poor endocrine control, smoking, and possibly nasal staph. aureus (to be confirmed by study).
New research shows direction of blood flow on surface of eye and can identify muscle enlargement at an early stage.
Normal MRI can identify which muscles are inflamed. Quantitative MRI measures concentration of water and fat, pinpoints history and amount of inflammation and can track over time.
In conclusion treatment regime is very effective!
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We met again at the Friends' Meeting House in central Cambridge. We successfully followed the London group's format for a 'Patients' Voices style meeting. First we shared names and as much detail of our personal thyroid stories as we wished. This was followed by a short guided meditation.After coffee and biscuits we then split into three break-out groups followed by a plenary and here is a summary of what the groups discussed:
This group included people who had RAI either recently or several years ago and two people who are making the decision whether to go for the treatment at the moment.
We discussed the following ideas:
- Problems with lack of information or conflicting information concerning effect on TED, surgery vs RAI and effects of treatment including likelihood of going underactive.
- Lack of clear information as to when to have further blood tests.
We concluded that a doctor's advice is only an opinion as medicine is not a clear cut science and that it would be a good idea to get a second doctor's opinion. Also general advice is to get thyroid blood tests after any change in thyroxine dose (typically this may be from 8-12 weeks after the change to a new dose) but to consult your own doctor about the required time in your personal circumstances. Also advice seems to be to keep to one brand of tablets. BTF guidance is not always mentioned by doctors although some people had heard of us through their hospital.
We discussed the following problems:
- Work issues if you have a chronic illness. For example: not getting support from other staff; unable to do as much as everyone else; the physical challenges of working full-time can affect you psychologically; bullying.
- Having thyroid problems can reduce your ability to cope with stress. When the thyroid is out of balance it affects the emotions for example anger, mood swings - see pyschological symptoms and thyroid disorders
- Something you could cope with at one time becomes a lot more difficult when ill
- An overactive thyroid can bring on or worsen particular phobias and these phobias can remain even when the thyroid condition is being managed
- Problems with sleeping: waking early, insomnia. These can be particularly difficult if you have a job or just generally as they reduce energy and also affect mood.
We wondered if the time of day that thyroid medication is taken can affect sleep patterns particularly in the case of T3 and one of the group had found that taking T3 at night helped with sleeping problems.
We discussed possible ways of alleviating problems and managing psychological wellbeing:
- Phobias: exposure techniques; breathing techniques; counselling – all could help with managing phobias.
- Problems can sometimes be dealt with by not engaging with the stressful emotions and instead thinking of ways to solve the problem- CBT could be useful
- Exercise is a great therapy and the endorphins it releases are a good tonic. We discussed the different types we have enjoyed for example running; walking; yoga.
- Diversions are good: the crossword; driving (which can allow your mind to be free enough to problem-solve creatively); singing (which is also a form of exercise). Whatever you enjoy doing and which you find absorbing.
Getting value from a visit to the doctor
- Try to gather as much reliable information about the condition with which you are visiting your GP or Hospital Clinic
- Try to ensure (encourage) the GP or the Clinic gives you your results, and not just tell you 'your results are within the normal range!'
- Keep a record of your results, possibly in the form of a diary.
- Try to ensure, in some way, that the GP or the Clinician gives adequate time to discuss with you your symptoms and issues associated with your condition. If necessary book a double appointment with your GP.
- Do not assume that there is good communication between the Hospital Clinic and your GP. Do try to encourage that communication.
- During the discussion a question was raised about the benefits of being a BTF member. It was concluded that BTF had a role in supporting research, providing information and giving advice.
We met for the first time at the Friends' Meeting House in central Cambridge. We first heard yoga teacher Maggie Shanks talk about yoga's role in well-being. We then all tried some breathing and stretching exercises under Maggie's excellent tuition. This was a good ice breaker as it was the first meeting for several members of the group.
We then listened to Inge Harrison, one of the Endocrine Nurses at Addenbrooke's Hospital, describe her specialist role as a Thyroid Cancer nurse and also the work of the Endocrine Department more generally.
After a break for coffee and chat we took part in an interesting Q and A session with both speakers. Maggie gave some details of where to find suitable yoga classes and Inge answered some questions including several about thyroxine. General advice at the hospital which is given to patients is to stay on the same make of tablets. It was also noted that many makes contain lactose which many people were not aware of.
Our first information event was held at Newnham College, Cambridge on a sunny Saturday morning. We had an audience of over 30 people and were very pleased to welcome everyone to our new group.
Our first speaker was Dr Diana Wood, Consultant in Endocrinology Cambridge University who gave a comprehensive talk on Hypothyrodism. She included a basic scientific introduction to the thyroid gland and how it works along with the hypothalamus and pituitary gland. She also included a historical review of treatments for thyroid disorders. It was particularly interesting to hear about George Redmayne Murray's paper "The Life History of the First Case of Myxoedema Treated by Thyroid Extract" ( British Medical Journal 1920, 1: 359 – 360 ). A female patient, lived for 28 years on sheep thyroid extract and died in 1919, age 74, from heart failure. The unreliability of thyroid extract (from more than 870 sheep thyroid glands over the years!) was noted in the paper.
Dr Carla Moran, Senior Research Fellow Cambridge University and BTF Research Award holder 2010 then spoke about Hyperthyroidism. She gave an overview of the topic and included some useful pointers as to how to get the best out of your doctor.
- Take medication list with you
- If you can, have bloods done before the appointment in enough time so that the results will be with your doctor
- Come prepared – list your questions
- Feel free to ask questions
- Don't be afraid to tell us something you think we might not want to hear (!) e.g. if you have forgotten to take your tablets or have taken the wrong dose by mistake
- Ask for your own copy of letters sent to the G.P. if possible
- If possible see same doctor every visit
Our final speaker was Professor Krishna Chatterjee, Professor of Endocrinology Cambridge University on Thyroid Nodules. He first gave us some statistics. 50% of adults have thyroid nodules as shown by ultrasound or post-mortem examination. 90% of thyroid nodules are benign. Thyroid cancer is uncommon (there are only 1000 new cases per year) and has an excellent prognosis.
Therefore if we take the population of Cambridgeshire as 267,100 this means that 8500 people may be diagnosed in a year with thyroid nodules but only 2-5 of these cases will be diagnosed as thyroid cancer. He then went on to describe the treatments for this disorder.
Each doctor answered questions from the floor at the end of their talk and then the last part of the meeting consisted of the three doctors answering written questions from the audience. Everyone received most useful and thoughtful answers to their individual queries.
>We would like to thank Professor Chatterjee, Dr Wood and Dr Moran for taking time out of their busy schedules to give us such interesting and informative talks.
On a cold snowy day we shared our individual experiences of thyroid disorders over a cup of coffee in the Cambridge City Hotel. We also discussed the information from Professor Colin Dayan's talk on Psychological Well being and Thyroid Disorders given at the London meeting in February. Much of our time was involved with planning our first major information event in July at Newnham College with three speakers from Addenbrooke's Hospital.
The first meeting went well and those attending had lots of ideas for future meetings. Attendance was reduced due to bad weather but another planning meeting has been arranged for March.