Knowledge gaps about the diagnosis and treatment of hypothyroidism

Where do people with an underactive thyroid (hypothyroidism) get information from about their condition, and how accurate is it?

These were questions explored in an international patient survey led by thyroid specialists, a patient representative from Thyroid Federation International, and Picker researchers. The results offer a fascinating, and sometimes concerning, glimpse into how people understand their condition; and the role that online sources and personal experience play in shaping that understanding. The results are now published in Frontiers in Endocrinology¹.

What the team found

Nearly 3,500 people treated for hypothyroidism, from 68 countries, took part in the survey. One striking result was that half of all respondents falsely believed that symptoms are enough to diagnose hypothyroidism, even when the thyroid blood tests were normal.

The team also found that

• Use of internet and social media and dissatisfaction with treatment were associated with misinformation.
• Dissatisfaction with treatment linked to inaccurate beliefs about diagnosis and management.

Why this matters

These results provide insights that suggest misinformation could be contributing to poor treatment experiences and potentially inappropriate clinical decisions.   

Lead author, Dr Petros Perros explains:

“What makes this topic particularly relevant is that up to 30% of people treated with thyroid hormones do not have a diagnosis of hypothyroidism. It is notable that some online influencers believe that hypothyroidism can be diagnosed based entirely on symptoms and that thyroid blood tests cannot be trusted. This is a false assertion, not supported by scientific evidence. Furthermore, mis-attributing symptoms to an underactive thyroid, guarantees patient dissatisfaction and can delay or, worse, miss important alternative diagnoses.”

The study highlights a need for people with hypothyroidism to have easy access to accurate and scientifically sound information about hypothyroidism; the authors conclude

“Knowledge gaps about the significance of symptoms in relation to the diagnosis and treatment of hypothyroidism may be important in driving overdiagnosis and overtreatment”.

References

• ¹ Perros P, Poots A, Nagy EV, Papini E, Hay H, Abad-Madroñero A, Tallett A, Lakwijk P, Hegedüs L.  Knowledge gaps about the diagnosis and treatment of hypothyroidism: an international patient survey. Frontiers in Endocrinology 16: 1663497.