As a patient-led organisation, BTF is often asked by medical and other professionals for help in researching thyroid disorders and patient experiences. All surveys are vetted by BTF and unless otherwise stated any information you give is confidential.

After completion, findings are often published in the research news section. 

Levothyroxine Replacement in the 21st Century

This survey is now closed - we needed 1000 responses, and we got them... and in record time! Thank you to everyone who participated in the survey - we're grateful for your input which will help to inform the development of treatment for hypothyroidism.

Although we have been limited to collecting 1000 responses to this online survey, we are still able to collect your comments on current treatments for hypothyroidism and use them for this project. If you would like to share your views please send them to info@btf-thyroid.org by 1 July 2019 using the subject heading 'Levothyroxine replacement survey'.

Hypothyroidism (underactive thyroid) affects many people worldwide and yet patients’ reported satisfaction levels with their treatment and care vary widely. If you or your child have been diagnosed with hypothyroidism please take part in our survey, which will take less than 5 minutes to complete. Your feedback is important - your views will help to inform future research and bring about improvements for patients. Thank you for participating.

Targeting antigen-specific plasma cells in severe Graves’ disease

Researchers in Newcastle are planning a new study which aims to identify new treatments for patients with severe Graves’ disease (GD). GD is the name for the condition in which your immune system attacks your thyroid gland and this causes overactivity. In its mild form, GD is conventionally treated with antithyroid tablets or radioactive iodine therapy, with satisfactory patient outcomes. However, around 25% of individuals with GD have severe GD, characterised by either rampant thyroid overactivity and debilitating symptoms which are resistant to conventional antithyroid tablets, goitre, thyroid eye disease or thyroid dermopathy. These symptoms may occur simultaneously in the same individual and usually predict that conventional treatment will not be successful and that there will be unsatisfactory treatment outcomes. 

The researchers would like your views about the study design in order to make it better for the patients who take part. To find out more about the project and how you can give feedback please complete each of the two short SurveyMonkey questionnaires you will find through these links:

https://www.surveymonkey.co.uk/r/V23YVVQ
https://www.surveymonkey.co.uk/r/VJLMS6F

Patients needed for Graves’ disease research study

Graves’ disease is one of the most common overt autoimmune disorders. Patients with Graves’ disease have autoantibodies known as TRAbs which have the ability to stimulate the TSH receptor on thyroid cells causing thyroid overactivity (hyperthyroidism).

Symptoms of hyperthyroidism include goitre, fatigue, heat intolerance, sweating, weight loss despite good appetite, shakiness, inappropriate anxiety, palpitations of the heart, shortness of breath, tetchiness and agitation, poor sleep, thirst, nausea and increased frequency of defaecation. The TRAbs present in patients with Graves’ disease can also cause eye problems in some patients.

Current therapy for Graves’ disease includes treatment with anti-thyroid drugs, destruction of the thyroid using radioiodine, or removing the thyroid through surgery (thyroidectomy). Some treatments like beta-blockers and calcium antagonists may be used to control some of the symptoms of hyperthyroidism.

Illingworth Research Group Ltd are coordinating a study to investigate a potential new drug K1‑70. K1-70 is a monoclonal antibody which is an inhibitor of TSH receptor stimulation by stimulating TRAbs, resulting in a decrease in the over-production of thyroid hormones. K1‑70 is being developed for the treatment of people who have Graves’ disease, thyroid cancer, and patients who would benefit from controlling thyroid stimulating hormone (TSH) receptor activity. See this page for more information.

The researchers require patients with Graves’ disease for this study. For more information, please contact:

  •  Volunteer Services team at the Medicines Evaluation Unit on 0800 655 6553 and quote study MEU 15/304
  •  Recruitment Team at the Royal Liverpool and Broadgreen Clinical Research Facility between 8.00am and 4.00pm on 0151 706 4863 and quote study CRU/5464 or text CRU/5464 to 07342065915.

Study of Graves' Disease in Young People

surveynewcastle

The clinical trial that is looking to see if the medicine Rituximab can improve outcomes in young people diagnosed with Graves’ disease (the RIG-D trial) finished recruiting participants in August 2018. We expect the results of this trail to be available towards the end of 2020. If you would like information regarding the background to the trial then contact Tim Cheetham by email at tim.cheetham@nuth.nhs.uk

Thyroid Receptor Dysfunction Research Project

We are looking for volunteers who have been diagnosed with thyroid receptor dysfunction to come along and take part in a research project at Moorfields Eye Hospital. This research is trying to identify the mechanism by which thyroid receptor dysfunction impacts on vision and in particular, people’s colour vision. This will be a key step towards finding treatments for this and similar genetic eye disorder.

If you are interested in taking part, you would need to be free to attend Moorfields for a short visit (about one hour) in the coming months. The test involves sitting at a computer and clicking either a left or right button when images appear on the screen. The test is completely non-invasive, we will not be giving you any medications, you will not have to wear any special glasses or eye patches to take the test. All travel costs will be reimbursed.

For more information or to find out how to take part please contact: Dr. Matteo Rizzi,m.rizzi@ucl.ac.uk, tel. 07835164303

TED Survey

When you were diagnosed with thyroid eye disease, what support was helpful to you? Was your GP able to help you? What was missing?

We're very interested to hear of your experience which will be helpful for the BTF's thyroid eye disease project as well as for a group of GPs to whom we are speaking, and will help to bring about improvements for future patients. Any information we share with the GPs will remain anonymous. Please email Janis Hickey at: teamed@btf-thyroid.org

Thank you for your help.