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Endocrine Abstracts (2025) 109 P20 | DOI: 10.1530/endoabs.109.P20

SFEBES2025 Poster Presentations Adrenal and Cardiovascular (61 abstracts)

An analysis of symptom scoring in a large cohort of patients with phaeochromocytoma and paragangliomas

Hafsa Tahir 1 , Zen Lim 1 , Mechteld De Jong 2 , Afroze Abbas 2 & Rebecca Sagar 2


1School of Medicine, University of Leeds, Leeds, United Kingdom; 2Leeds Regional Adrenal Tumour Service, Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom


Background: Phaeochromocytomas and paragangliomas (PPGLs) often present incidentally and many patients are asymptomatic. Symptoms are often non-specific but can include palpitations, hyperhidrosis or headaches and are usually linked to catecholamine hypersecretion measured by plasma metanephrines. Patterns of secretion can vary based on underlying genetics and can be grouped according to defined clusters. Our study aimed to evaluate symptoms of patients with suspected PPGLs in a large UK cohort.

Methods: Retrospective data were collected on patients with probable PPGLs at Leeds Teaching Hospitals between 2018-2023. Data collected included demographics, symptom status, biochemistry, lesion characteristics and genetics.

Results: 99 patients (56.1% male) were included, mean age was 55±19 (SD) years. 43(43.4%) patients had at least 1 symptom, with the most common being palpitations in 39 (91.6%), hyperhidrosis in 27 (62.7%) and tachycardia in 25 (58.1%). Of symptomatic patients, 41(95.3%) had secretory lesions. Whilst both normetanephrine and metanephrine levels were higher in symptomatic patients compared with asymptomatic patients, these differences were non-significant. There were also no significant differences in lesion size between the two groups. Using a previously validated symptom scoring tool (Geroula et al) for PPGLs, a score ≥3 is suggestive of PPGl. 18 of the whole cohort (18.2%) had a score of ≥3. 45 lesions had cluster 1 characteristics, of these 25 (55.6%) were symptomatic. 46 lesions had cluster 2 characteristics and 16 (34.7%) of these were symptomatic. We found there was no clear difference in basic symptom score between cluster groups.

Conclusion: Our data suggest that the majority of patients with PPGLs may be asymptomatic, and many do not present with the hallmark symptoms of PPGl. We did not find any clear differences in symptoms between cluster 1 and cluster 2 lesions. Additionally, metanephrine levels and size of lesion did not correlate with symptom status nor scores.

Volume 109

Society for Endocrinology BES 2025

Harrogate, UK
10 Mar 2025 - 12 Mar 2025

Society for Endocrinology 

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