Abstract
Background and objectives: It is unclear why many patients with hypothyroidism prefer the use of desiccated thyroid extract (DTE) as a thyroid hormone replacement formulation over levothyroxine (LT4) treatment, as recommended by clinical practice guidelines. We analyzed patient-reported information from patient online forums to better understand patient preferences for and attitudes toward the use of DTE to treat hypothyroidism. Materials and Methods: We conducted a mixed-methods study by evaluating the content of online posts from three popular hypothyroidism forums from patients currently taking DTE (n = 673). From these posts, we extracted descriptive information on patient demographics and clinical characteristics and qualitatively analyzed posts’ content to explore patient perceptions on DTE and other therapies further. Results: Nearly half (46%) of the patients reported that a clinician initially drove their interest in trying DTE. Patients described many reasons for switching from a previous therapeutic approach to DTE, including lack of improvement in hypothyroidism-related symptoms (58%) and the development of side effects (22%). The majority of patients described DTE as moderately to majorly effective overall (81%) and more effective than the previous therapy (77%). The most frequently described benefits associated with DTE use were an improvement in symptoms (56%) and a change in overall well-being (34%). One-fifth of patients described side effects related to the use of DTE. Qualitative analysis of posts’ content supported these findings and raised additional issues around the need for individualizing therapy approaches for hypothyroidism (e.g., a sense of each patient has different needs), as well as difficulties obtaining DTE (e.g., issues with pharmacy availability). Conclusions: Lack of individualized treatment and a feeling of not been listened to were recurrent themes among DTE users. A subset of patients may prefer DTE to LT4 for many reasons, including perceived better effectiveness and improved overall well-being, despite the risks associated with DTE.
Highlights
Hypothyroidism affects 0.5–2% [1,2,3] of the population in the United States and leads to multiple symptoms, including fatigue, weight gain, dry skin, constipation, poor memory, depression, and overall decreased quality of life
This study showed that higher treatment satisfaction with desiccated thyroid extract (DTE) therapy does exist among patients with hypothyroidism, there remains a limited understanding of factors that may be driving patients to choose DTE over LT4 treatment among patients with hypothyroidism, despite there being no evidence to support using DTE in preference to LT4 monotherapy in the treatment of hypothyroidism [4]
This study showed that patients with hypothyroidism using DTE frequently describe the lack of individualized treatments and a feeling of not been listened to as issues during their treatment
Summary
Hypothyroidism affects 0.5–2% [1,2,3] of the population in the United States and leads to multiple symptoms, including fatigue, weight gain, dry skin, constipation, poor memory, depression, and overall decreased quality of life. Despite the strong evidence regarding the effectiveness of LT4 for the treatment of hypothyroidism, some patients prefer other thyroid hormone replacement formulations. It is estimated that about 10–29% of patients with hypothyroidism use DTE as their primary thyroid hormone replacement medication in the US [7,8], despite concerns about the potential risk of thyrotoxicosis associated with DTE use [9,10]. Materials and Methods: We conducted a mixed-methods study by evaluating the content of online posts from three popular hypothyroidism forums from patients currently taking DTE (n = 673) From these posts, we extracted descriptive information on patient demographics and clinical characteristics and qualitatively analyzed posts’ content to explore patient perceptions on DTE and other therapies further. Qualitative analysis of posts’ content supported these findings and raised additional issues around the need for individualizing therapy approaches for hypothyroidism (e.g., a sense of each patient has different needs), as well as difficulties obtaining
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