Patient Experiences and Perceptions Associated with the Use of Desiccated Thyroid Extract

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.

Patient satisfaction and quality of life in hypothyroidism: An online survey by the british thyroid foundation

“…A quarter of patients (25.6%) expected all their symptoms to disappear following treatment with L‐T4 despite studies showing that 12%‐49% of non‐hypothyroid people within the community have chronic symptoms that overlap with those of hypothyroidism 45‐48 . In keeping with other surveys, 4‐6 use of DTE and L‐T3 containing treatments were associated with better self‐reported QOL, although this effect disappeared following multivariate analysis.…”

“…A minority of hypothyroid patients, mainly from North America, Western Europe and Australia, report dissatisfaction with levothyroxine (L‐T4) treatment and impaired quality of life (QOL) 1 . These patients complain of persistent symptoms, which they attribute to hypothyroidism, 1‐3 and often express a preference for L‐T4 combined with liothyronine (L‐T3) (L‐T4 + L‐T3), desiccated thyroid extract (DTE), or L‐T3 monotherapy, rather than to L‐T4 alone 4‐6 . Population studies have confirmed that between 5% and 30% of patients with a diagnosis of hypothyroidism treated with L‐T4 alone continue to have symptoms compared to controls even when the serum thyrotropin (TSH) is within the normal reference range 7‐9 .…”

Evidence-Based Use of Levothyroxine/Liothyronine Combinations in Treating Hypothyroidism: A Consensus Document

“…Thus, not only are many of the doses employed supraphysiological with respect to their LT3 content, but also this variation adds to the heterogeneity of the trials, and the possibility of salutatory effects of LT3. DTE might be attractive to participants, as there is considerable interest in DTE expressed by patients and patient advocacy groups, and DTE is preferred by many patients in uncontrolled studies (101,108). Inclusion of DTE would, however, add to cost, trial size, and complexity, and perhaps the need for additional safety monitoring because of the high T3/T4 ratio contained in the DTE.…”

Triiodothyronine alongside levothyroxine in the management of hypothyroidism?

“…59 Many patients with thyroid disorders are avid consumers of social media, and there is no doubt that exposure to these sources influences their perceptions of hypothyroid management, including the use of non-evidence-based approaches. 60,61 A feeling of not being listened to by physicians, and persistence of symptoms, have been identified as important drivers of the use of desiccated thyroid extract among social media users with hypothyroidism, although about half of this sample claimed to have derived their initial interest in this approach from their physician. 60 Self-adjustment of these medications by patients, driven by symptoms, is also common.…”

“…60,61 A feeling of not being listened to by physicians, and persistence of symptoms, have been identified as important drivers of the use of desiccated thyroid extract among social media users with hypothyroidism, although about half of this sample claimed to have derived their initial interest in this approach from their physician. 60 Self-adjustment of these medications by patients, driven by symptoms, is also common. 62 Given the interest in the use of T3 preparations within thyroid disease management from both physicians and patients, it is perhaps unsurprising that their use in routine practice is widespread and increasing.…”