More than a third of people with Turner syndrome surveyed in a US registry do not believe they need estrogen replacement therapy, and one in five of those under 50 shares that view. The finding, published in an analysis of 169 participants in the UTHealth Houston and Turner Syndrome Society of the United States research registry, describes a problem of adherence and understanding that contradicts current clinical guidelines.
The physiology is clear: most people with Turner syndrome develop hypergonadotropic hypogonadism and need exogenous estrogen to induce puberty and to maintain it until roughly the age of natural menopause. Yet such long-term treatment depends on the person understanding it, tolerating it and sustaining it for decades. The survey, distributed between July and September 2024, set out to measure exactly that: patterns of use, perceived benefits and obstacles.
The mean age of participants was 39.3 years, with a standard deviation of 16.9 years. Eighty-six per cent had used estrogen at some point in their lives and 65% were still taking it when they responded. Among those who had stopped, one third were under 50 — far from the age at which hormone replacement might be considered optional. In addition, 27% of participants had interrupted treatment at least once in the previous ten years.
Side effects explain part of that interruption. One in five people taking estrogen at the time of the survey reported significant discomfort: breakthrough bleeding, anxiety, depression, mood swings, brain fog and difficulties with memory or learning. Declared reasons for not taking treatment included the perception that it offered no health benefit (16%), not being sexually active (19%), concern about cancer risk (5%) and limited awareness of its advantages (16%).
The study also portrays the mental health burden in this population: 47% reported some diagnosis in this area, with anxiety (80%) and depression (69%) the most frequent among those who mentioned them. The authors conclude that estrogen replacement remains an essential component of long-term care and that the barriers identified — adverse effects, mistaken beliefs about its necessity and lack of information — require individualised counseling, patient education and coordinated follow-up. Without that support, the risk is that treatment is abandoned precisely when it matters most for bone, cardiovascular and metabolic health.
Source: Patterns, Perceptions, and Gaps in Estrogen Replacement Therapies Among Adolescents and Adults with Turner Syndrome: Insights from the UTHealth Houston/Turner Syndrome Society of the United States Research Registry. Shihadeh F, Prakash SK, Rivera-Davila M, Riggs-Harpur K. Hormone Research in Pediatrics 2026:1-1. DOI: 10.1159/hrp/adaag027.
