Lived Experiences of People Living with a Thyroid Condition

Written by Sophie Getliff 
MSc Health Psychology student at the University Of Derby

My research looked into the lived experiences of people living with a thyroid condition. This report focuses on a small subsection of the data which focuses on young adults. 

This research aimed to gain a comprehensive understanding of the healthcare experiences of young individuals living with thyroid conditions. Hypothyroidism and hyperthyroidism are chronic health issues caused by the dysregulation of the thyroid gland, leading to either an underproduction (hypothyroidism) or overproduction (hyperthyroidism) of essential hormones, triiodothyronine (T3) and thyroxine (T4).

These hormonal imbalances result in various symptoms, such as severe fatigue, weight management difficulties, and depression. The number of people diagnosed with these conditions is gradually increasing in the UK. Therefore, it is crucial to understand how these conditions are managed and their impact on patients, particularly younger adults. In light of the rising incidence of thyroid disorders and risk factors for earlier onset, this study explores the diagnostic experiences and healthcare needs of younger adults aged 18-40.

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​The research employed a cross-sectional online questionnaire survey composed of eight open-ended questions focusing on different aspects of the participants' lives, including their healthcare experiences. Out of the 250 participants who completed the survey, data from 56 respondents who fell within the target demographic of younger adults aged 18-40 were analysed. The mean age of this sample was 32.3 years, with 52 biological females and 4 biological males. The ethnic composition of the sample included 73.2% white individuals and 26.8% from ethnically diverse backgrounds.

The data were analysed using reflective thematic analysis, which revealed three prominent themes: feelings of dismissal by healthcare providers, condition management, and the role of support. Many participants reported feeling dismissed by their primary healthcare services, describing experiences where they had to advocate for their diagnosis strongly. Even after receiving a diagnosis, participants often felt they were not provided with adequate information to understand and manage their condition effectively. This lack of support and information led to feelings of frustration and isolation, negatively impacting their physical and mental health.

Additionally, the participants highlighted issues with condition management, noting that insufficient guidance from healthcare providers resulted in poor management of their symptoms. The lack of effective communication and support from healthcare professionals contributed to these challenges, exacerbating frustration and isolation among the participants.

The role of support was another critical theme identified in the study. Participants expressed a need for more comprehensive support from their healthcare providers, as well as a desire for a more patient-centred approach to care. The absence of adequate support systems and resources left many feeling isolated and struggling to manage their conditions effectively.
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This study underscores the urgent need for improved education and support from healthcare services, emphasizing the importance of quality, patient-centred care. The findings suggest that to enhance the quality of care for young adults with thyroid conditions, there is a need to design evidence-based educational programs and performance improvement interventions. Such initiatives should aim to better inform healthcare practices and provide comprehensive support to this population. By addressing these gaps, healthcare providers can help reduce the feelings of dismissal and isolation experienced by young adults with thyroid conditions, ultimately improving their overall health and well-being.