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Patients' Struggle with Thyroid Disease Management 'Overlooked'

A diagnosis of thyroid disease could be just the beginning of a lengthy journey for patients, according to new research, which suggested that even after treatment had commenced, the majority of people with the disease still experienced multiple symptoms.

An estimated 1 in 20 people in the UK have a thyroid problem, with women six times more likely to experience the condition than men.

"Thyroid patients are at greater risk of experiencing long-term sick leave and impairment of working ability," said University of Aberdeen researchers who compiled a survey exploring people's experience with the condition.

The survey, People's Experience with Thyroid Disease, formed part of a research study by the University's Centre for Labour Market Research (CeLMR), and used data from 1176 people aged 18-88 (average age 53 years) who were interviewed online between 6 March and 7 April 2023.

The research team worked with the British Thyroid Foundation, Thyroid UK, the Thyroid Trust, Thyroid Patients Advocacy UK, the Improve Thyroid Treatment Group and the charity Miscarriage Support (MISS) to circulate the survey across the UK, with the aim of investigating the implications of thyroid disease, before and after diagnosis and treatment, on patients' wellbeing and labour market engagement.

"Relatively little evidence exists about the impact of thyroid dysfunctions on the wellbeing and labour market outcomes of those affected," explained co-author Professor Catia Montagna from the CeLMR.

Symptoms Persisted Even With Treatment

Around 95% of the respondents were women, which was "consistent with the evidence of a high prevalence of the disease among women", the authors pointed out. Most respondents were based in England (82%), followed by people in Scotland (12%), Wales (3.4%), and Northern Ireland (2.6%). The majority of respondents had hypothyroidism (69%), and 24% had hyperthyroidism. The remaining 7% had other thyroid conditions.

The researchers discovered that it took an average of 4.5 years for a thyroid condition to be diagnosed, with this taking "considerably longer" for patients with hypothyroidism. For almost two thirds of respondents, it took multiple appointments and a worsening of the severity of symptoms before a diagnosis was made, reported the authors.

Even once treatment had started, a "staggering" 92% of patients still experienced multiple symptoms – most commonly tiredness and slowness (79%), cognitive deficits (64%), and muscle aches and weakness (62%).

Professor Alexandros Zangelidis, from the CeLMR, who co-authored the investigation, emphasised: "The evidence that emerges from this survey confirms that thyroid diseases have serious implications for the life of patients, with adverse and long-lasting consequences on their wellbeing and their ability to engage with and interact with social activities and work long after they get a diagnosis."

However, various aspects of everyday life did perk up for some after treatment commenced. Almost 1 in 2 (46%) people engaged in more physical activities, 1 in 3 (32%) had a more active social life, and 28% engaged more in active social/cultural/political activities. Almost half (47%) of respondents said that they enjoyed a "more rewarding personal and/or family life".

Employers Unsympathetic

Improvements across aspects of labour market engagement – such as employment prospects, career, and skill development opportunities – following treatment were "much more limited", results suggested. Only around 1 in 10 respondents reported a positive change, with around 60% stating there was no improvement. For almost a third of respondents, things "got worse".

Around three quarters (78%) of the respondents who were employed at the time of diagnosis told their employer they had a thyroid condition. Of concern was that for almost 1 in 4 (23%) who informed their employer, the employer did not appear to be sympathetic.

The gender of health professionals also seemed to matter. "Patients on average do not feel they are being heard by the medical profession and do not feel empowered during their medical journey," alerted Professor Montagna. 

Dissatisfaction with involvement and empowerment was greater for patients with hypothyroidism, highlighted the authors. Patients said they felt "more involved and empowered" when diagnosis was made by a female consultant. 

Change Needed

"This research makes it very clear that a more holistic approach is needed to inform relevant healthcare policy debates and initiatives," underlined Professor Montagna.

The researchers put forward a number of policy recommendations, including:

  • A review of the effectiveness of treatment
  • The creation of a UK-wide thyroid taskforce to investigate how people with these dysfunctions can be better supported
  • Increased awareness of healthcare professionals on women's health
  • The development of workplace and HR policies on organisational approaches to thyroid disease and the support employees can expect to receive

Director at The Thyroid Trust, Louise Sellar, said that thyroid patient voices had been "overlooked for too long" and that this "needs to change".

Julia Priestly from the British Thyroid Foundation, welcomed the study, and stressed that: "The emphasis is now on patient organisations, medical professionals, policy makers, and employers to work together to address these recommendations for helping people to live better with thyroid disease."

No funding was declared for the survey. The authors declared no conflicts in interest.