This strategy is designed to support people in the UK diagnosed with, and treated, for hypothyroidism. It will focus on improving communication between hypothyroidism patients and their healthcare professionals, including GPs, endocrine specialists, nurses and pharmacists. In addition it will support the development of research to improve patient care.
There is currently a significant proportion of people who have been diagnosed with hypothyroidism and are being treated but who still report ill health. A large amount of information available on the internet and through other sources is either not based on scientific evidence or misinterprets existing evidence. Anecdotal information can be helpful to patients but it is not a substitute for systematic and robust scientific evidence. Patients have the right to be able to distinguish between fact and fiction.
It is important that doctors who specialise in thyroid disease better understand why such a large number of treated patients don't feel well and the best way of addressing the situation is through rigorous scientific research.
Unfortunately there are perceived barriers between patients and health professionals with regard to hypothyroidism and the BTF acknowledges the need for greater engagement. The BTF is in a uniquely advantageous position in being able to act as a catalyst as it has access to the best qualified experts in the UK and a long track record of collaboration with them.
What We've Done
- BTF partnered with Sense about Science to take part in an online clinic hosted by NHS Choices and TalkHealth in 2012. The record numbers of people who logged in to take part gave us access to large amount of data about the concerns that affect patients with hypothyroidism.
- During 2013-14 we ran a hypothyroidism awareness campaign with a specially created poster and leaflet which was displayed in more than 1,250 GP surgeries across the UK. We are grateful to healthcare communications company, IDS UK, who gave us this opportunity.
- With support from a GP with a special interest in thyroid we helped update a training module which was published in PULSE Learning. The module includes how to manage subclinical hypothyroidism and managing hypothyroidism in pregnancy.
- Patient Voices: four short films in which people talk about hypothyroidism and how it affects them. To see these films please click here.
- The patient information leaflets to support hypothyroid patients have recently been reviewed and updated and will shortly be available in hard copy format and on the BTF website.
- Representatives from the BTF met in 2014 with a group from pharmaceutical company, Amdipharm Mercury Company Limited (AMCo) to discuss patients' experiences of hypothyroidism and in particular the challenges some of them have with their medication.
- The BTF Research Award 2015 of £20,000 has been awarded to Dr Carla Moran, Consultant Endocrinologist at Addenbrooke's Hospital, Cambridge. Her research is into a rare form of hypothyroidism which is associated with near-normal thyroid function tests. To find out more about Dr Moran's study click here.
- The BTF is part of a study to investigate the Clinical And genetic determinants of Thyroid Hormone Replacement In geNeral practicE (CATHRINE). The study is supported by AMCo Ltd and will be run by investigators from the Universities of Sunderland, Newcastle and Cardiff. The project will explore patient and professional attitudes and perceptions of symptom control in hypothyroidism, genetic associations with thyroid control and the association of thyroid specific genetic abnormalities and psychological symptoms.
- BTF FAQ for the Management of Primary Hypothyroidism 2015 The BTF has produced a set of Questions and Answers which accompany the BTA Statement on the Management of Primary Hypothyroidism 2015