The problem of unrecognized acromegaly: surgeries patients undergo prior to diagnosis of acromegaly

Purpose To reveal the variety of symptoms experienced by patients before acromegaly diagnosis and to emphasize unneeded surgeries that patients undergo related to acromegaly prior to diagnosis of the disease. Methods In total, 490 consecutive adult patients with acromegaly who were treated at our institution between 1998 and 2014 were included in this cross-sectional study, of which 313 could be contacted. Participants were questioned about their complaints at initial consultation and at the time of diagnosis, the first medical professional who they consulted, interval between onset and diagnosis, and surgeries they had undergone. Results This study included 313 participants, of whom 181 were women. The mean age was 48.8 +/- 12.0 years. Patients most frequently presented with acral growth of hands and feet (32.6 %) and headache (26.2 %). Internists were the medical specialists who were most frequently first consulted (29.4 %) then neurosurgeons (11.8 %). Acromegaly was generally diagnosed by endocrinologists (55 %), followed by neurosurgeons (23 %). The median elapsed period prior to diagnosis was 24 months, interquartile range 6.0-48.0 months. Some 45.7 % had undergone surgery; 35.2 % were related to acromegaly symptoms: head and throat surgery (12.8 %), nose surgery (9.3 %), thyroidectomy (6.4 %), carpal tunnel surgery (4.8 %). The delay period for patients who had an operation prior to acromegaly diagnosis was significantly longer than for those who had no operations (p < 0.001). Conclusions Acromegaly patients mostly present to internal medicine professionals. Surgeries related to acromegaly complications and symptoms before diagnosis cause a long delay period before diagnosis. Medical staff must be more aware of the clinical aspects of acromegaly.