An Online Survey of Hypothyroid Patients Demonstrates Prominent Dissatisfaction

Peterson, Sarah J.; Cappola, Anne R.; Castro, M. Regina; Dayan, Colin; Farwell, Alan P.; Hennessey, James V.; Kopp, Peter; Ross, Douglas S.; Samuels, Mary H.; Sawka, Anna M.; Taylor, Peter N.; Jonklaas, Jacqueline; Bianco, Antonio C.

doi:10.1089/thy.2017.0681

Cited by 184 publications

(173 citation statements)

References 48 publications

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“…In this study, we observed that, among forum participants, 81% perceived as moderate-to-major the effectiveness of DTE therapy. In this regard, our results are similar to previous survey-based studies reporting higher median satisfaction; lower reports of problems with weight management, fatigue, mood, or memory [8]; and an overall positive drug effect in individuals treated with DTE, compared to those taking LT4 or LT4 + LT3 [26]. To the extent of our knowledge, there is only one double-blinded, randomized clinical trial (RCT) evaluating the effectiveness of DTE compared with LT4 in a sample of 70 patients with hypothyroidism [27].…”

Section: Discussionsupporting

confidence: 90%

“…Nevertheless, there is a concern that, despite the use of LT4 at doses to reach adequate biochemical response, patients often have persistent signs and symptoms of hypothyroidism and low satisfaction with their treatment [6,8]. In this study, we observed that, among forum participants, 81% perceived as moderate-to-major the effectiveness of DTE therapy.…”

Section: Discussionmentioning

confidence: 71%

“…Although it is not approved by the Food and Drug Administration (FDA), one of the most commonly used non-LT4 formulations for the treatment of hypothyroidism is desiccated thyroid extract (DTE) (e.g., nature thyroid, thyroid USP, and Armour thyroid), preparations made from desiccated pig thyroid glands. 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]. It is unclear why many patients prefer the use of DTE over LT4 as a thyroid hormone replacement formulation.…”

Section: Introductionmentioning

confidence: 99%

“…A previous survey conducted among patients with hypothyroidism identified an overall high dissatisfaction rate (10-points Likert scale) with therapy for hypothyroidism (5 [Interquartile range (IQR) = 3-8]); however, when stratified by treatment modality, patients taking DTE showed less treatment dissatisfaction (7 [IQR = 4-8]) compared to the individuals treated with LT4 (5 [IQR = 3-7]) [8]. Although this study showed that higher treatment satisfaction with 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].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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.

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Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 71%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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“…Die 2014 publizierten Leitlinien der American Thyroid Association (ATA) [19] weisen außerdem auf das Fehlen von Langzeitstudien einer Therapie der Hypothyreose mit DTE hin. 2018 ist eine qualitativ anfechtbare Studie zu dem Thema erschienen [29]: es handelt Die andere -viel größere -Studie [31] befragte hypothyreote Patienten, an die sie überdie MitgliederderAmericanThyroid Association herankam, mittels über das Internet ausgesandter umfangreicher Fragebögen nach ihrer Lebensqualität sowie abschließend auch nach der Zufriedenheit mit ihren betreuenden Ärzten. Die Patienten standen entweder unter einer Monotherapie mit L-T4 (n = 6949), oder einer T4/T3-Kombinationstherapie (n = 978) oder einer Therapie mit DTE (n = 3239).…”

Section: Introductionunclassified

Rolle der bioidenten Schilddrüsenhormone in der Behandlung der Hypothyreose: Ein Update

Weissel

2019

J. Klin. Endokrinol. Stoffw.

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The role of beliefs about the impact of illness on fertility and close relationships for psychopathological symptoms in women treated for hypothyroidism

Wytrychiewicz

Pankowski

Janowski³

et al. 2020

J Clin Psychol

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Objective As demonstrated in a pilot study, hypothyroidism has a highly stressful impact on some areas of functioning. This study aims to evaluate the connection between illness‐related beliefs (IRBs) and the impact of hypothyroidism on fertility and close relationships, which were the strongest stressors, and the level of depressive, anxiety, and anger symptoms. Methods Two hundred and thirteen women being treated for hypothyroidism took part in an online survey and completed the modified Hospital Anxiety and Depression Scale, Hypothyroidism Symptoms Severity rating scales, and a measure of IRBs. Other relevant clinical data were also collected. Result Mean levels of thyroid‐stimulating hormone indicated that the women were euthyroid. Four groups of participants were identified based on IRBs. The group holding a strong IRB about the negative impact of illness only on close relationships scored significantly higher on depressive symptoms than women in the other groups. The group holding strong IRBs about the negative impact of illness on both close relationships and fertility scored significantly higher on anxiety symptoms than the women in the other groups. Regression analysis showed that IRBs about the negative impact of hypothyroidism predicted anxiety, depressive, and anger symptoms. Conclusions Negative IRBs about the impact of illness on fertility and close relationships contribute to increased levels of emotional distress symptoms in women being treated for hypothyroidism.

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An Online Survey of Hypothyroid Patients Demonstrates Prominent Dissatisfaction

Cited by 184 publications

References 48 publications

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

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

Rolle der bioidenten Schilddrüsenhormone in der Behandlung der Hypothyreose: Ein Update

The role of beliefs about the impact of illness on fertility and close relationships for psychopathological symptoms in women treated for hypothyroidism

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