Thyroid eye disease patient information event 

5 September 2025

“It was reassuring to know that the tiredness, anxiety, bouts of and fluctuation in low self-esteem and mood swings are part of this disease.”

On 5 September 2025, we held an online event for people living with thyroid eye disease (TED). 150 patients, carers and healthcare professionals joined our meeting from 9.30am until 1.30pm.

We jointly hosted the meeting with representatives from the Thyroid Eye Disease Charitable Trust and The Thyroid Trust. 

Thank you to all the attendees and the excellent speakers who shared their expertise about all aspects of TED.

During the event there was a lively online chat which participants used to engage with each other and comment on the talks. 40 attendees asked a total of 97 questions most of which were answered live by the presenters. To see a transcript of the Q&As please follow the link below.

We were pleased to be joined by patients from all around the world, the majority were from the UK, but we also welcomed those from the USA, Ireland, Australia, Canada, Switzerland, Cyprus, France, Germany, Italy, Tunisia and South Africa.  Attendees have shared their feedback with us and told us that the content was relevant, useful and easy to understand.

“Wonderful variety of talks, interesting and engaging, on a good level for the audience.”

“I have had TED since 2019 and all of the information was extremely helpful.”

“I have minor TED but want to be prepared for it if it deteriorates.”

“What I have seen stuck a good balance between clinical terminology (so we can understand consultants and studies) and lay terminology that helps us understand and communicate with friends and family also.”

“I thought the meeting was definitely a way forward, we need to share all the information with medical professionals as we know most do not know or understand what we go through with this disease so we therefore find it very difficult to get help.”

“A well thought out programme. I attended as a clinician hoping for more information to share with my patients and got exactly that.”

Pre-webinar questionnaire

Before the meeting, we wanted to gauge a better understanding of participants' experiences. We invited them to complete an online survey describing their experience of care and treatment and the impact TED has on their day to day lives. The survey included the validated GO-QoL and EQ-5D questionnaires. 

The 83 responses confirmed the devastating impact TED can have on independence, social confidence, employment status, finances and relationships. The data will be used to inform clinicians that there remains a significant gap between the treatment and care that patients need and what they get. Only a minority of patients attend joint clinics in the UK and most struggle to get consistent and joined up medical care. There is an urgent need for improved and new treatment options and dedicated research that will lead to better outcomes. 

• 23% of patients report moderate to severe problems in mobility
• 35% report moderate to severe problems in carrying out their usual activities
• 41% report moderate, severe or extreme pain or discomfort
• 47% report they are moderately,  severely or extremely anxious or depressed
• 49% report that TED has impacted their employment status
• 36% report they had experienced financial difficulties as a result of TED
• 96% report that having TED influences their self-confidence (65% reported 'very much so' and 31% reported, 'yes, to some degree.')

View the EQ-5D survey results

 Watch the recordings

Part 1: Treatments and patient experiences 

Part 1b: Medical treatment of thyroid eye disease, Prof Simon Pearce

Part 2: New treatments and clinical trials

Part 3: Living better with TED

Further resources

Programme

Event Q&As

Medical Treatment of TED - slides

Thyroid Disease, Diet and the Gut Microbiome - slides

Are you what you eat? -  slides

         

We are grateful to Amgen Limited who supported this event. They were not involved in selecting the agenda, topics or speakers.