25 years on: the British Thyroid Foundation
Julia Priestley | Opinion
The British Thyroid Foundation (BTF) was launched in Harrogate at the 11th Joint Meeting of the British Endocrine Societies (the forerunner of the Society for Endocrinology BES conferences), back in March 1992. This November, the SfE BES conference will return to this Yorkshire town, as the BTF marks a quarter of a century of providing thyroid patients with reliable information and support to help them manage their diagnoses.
Over the years, the BTF has developed close partnerships with medical professionals to ensure that not only do patients receive information of the highest standard, but that the patient perspective is fed back to the clinicians who make the decisions that affect and improve patient care.
Patients access BTF support through a comprehensive range of patient literature, regional support groups, a network of volunteer telephone contacts, newsletters, patient films, information events and Facebook groups. The information is freely accessible to them (and medical professionals) on the BTF website, and hard copies of leaflets are sent out to hospitals and clinics who request them.
The BTF is also committed to supporting research, and each year presents the BTF Research Award of up to £20,000 for work in the thyroid field.
The charity always welcomes feedback and suggestions from patients, and their views and experiences often form the basis of new activities. We have a range of current projects.
The Hypothyroidism Care Strategy focuses particularly on communicating key messages to GPs. The Thyroid Eye Disease (TED) Project seeks to improve understanding, treatment and care for patients with TED (see the article by Mohd Shazli Draman, Anna Mitchell & Colin Dayan for details of our work with TEAMeD).
Members of the Thyroid Cancer Project have recently worked together to make submissions to the Welsh, Scottish and English organisations that appraise new medicines for the treatment of advanced thyroid cancer. This year they have also published a third edition of their popular booklet Thyroid Cancer: For Patients, By Patients.
The Children’s Project has also had a busy year. In May we hosted a second Children’s Conference which brought families together from across the UK. The event, in Westminster, gave parents and their children the opportunity to listen to leading medical experts, share their concerns and stories, and hear about the experiences of others. Below, you can read the words of Joe Straw, a young adult with congenital hypothyroidism who spoke at the conference.
Although much has been done to improve understanding of thyroid disorders over the last 25 years, not least to increase the availability of patient friendly information, the BTF still has a valuable role as a link between patients and the medical profession. Patient concerns haven’t changed and many people need somewhere to turn to after diagnosis. The BTF is an important and reliable resource that we hope will be here for years to come.
Julia Priestley, Development Officer, British Thyroid Foundation
One of the speakers at this year’s Children’s Conference was Joe Straw, an inspirational 22-year-old from Sheffield, who spoke about the sometimes painful journey he’d had growing up with congenital hypothyroidism (CH):
‘I was diagnosed with CH at birth. It was a very anxious time for my parents and close family, and they recall the lack of information that was available to them. However, my hypothyroidism was generally well controlled throughout my childhood. My parents made sure I took my levothyroxine each morning before breakfast and I was able to do the things I enjoyed, just like everybody else my age, and I progressed well at school.
‘When I was about 15 years old I was placed under the care of a GP and, unfortunately, the good care that I had received ended abruptly. I began feeling very unpleasant physical, psychological and emotional symptoms in my final year of school, including severe headaches, lethargy and anxiety. I stopped playing football and became very disinterested in life. Ultimately I failed my GCSEs and left school with no qualifications. Despite this, my GP failed to recognise that my now uncontrolled thyroid was the cause.
‘By 16 I was anxious, apathetic and depressed. I couldn’t hold down a job and my self-esteem hit rock bottom. At 17, I was prescribed antidepressants and the symptoms I’d experienced for such a long time progressed further. My behaviour became reckless and self-destructive and for 2–3 years I self-medicated in an effort to forget my symptoms and the feelings I had.
‘I requested a change of GP and this proved to be pivotal. Blood tests revealed that my T4 was nearly undetectable and my TSH had reached 100mU/l. I was referred urgently to Professor Tony Weetman at the Royal Hallamshire Hospital in Sheffield. He asserted, in no uncertain terms, that we must take immediate action to avoid potentially serious long term effects. My dose of levothyroxine was reduced and I made sure I took it properly. After another blood test, my dose was increased slightly, and I am delighted to say that I have been well ever since. The symptoms that had plagued me for 3 years are long gone and my TSH/T4 have been consistent for 4 years.
‘Having got my life back, I retook my exams and progressed to university to study. Alongside my studies and work I have been able to play sport again, even competing in boxing for 4 years! I live a very active life once again, and can now make up for lost time. I volunteer for the BTF and really value the opportunity to share my experiences of living with thyroid disease as a way of helping others.’