Incidental discovery of neglected 11β-hydroxylase deficiency causing 46,XX disorder of sex development in a 35-year-old adult: A radiologically driven diagnosis
11β-hydroxylase deficiency (11β-OHD) is the second most common form of congenital adrenal hyperplasia (CAH), characterized by androgen excess, mineralocorticoid-driven hypertension, and hypokalemia. We report a 35-year-old individual with a 46,XX karyotype, registered and raised male since birth, in whom a disorder of sexual development (DSD) had remained unrecognized. Abdominal MRI performed for nonspecific abdominal pain revealed bilateral giant adrenal myelolipomas on macronodular adrenal hyperplasia and a retro-vesical uterus-like structure. On examination, external genitalia showed complete masculinization (Prader stage 5); dedicated pelvic MRI further demonstrated a markedly enlarged uterus with diffuse adenomyosis, in a patient who had never menstruated. Hormonal findings were consistent with classical 11β-OHD (DOC ∼140× the upper limit of normal, ACTH 12× normal, elevated adrenal androgens, suppressed gonadotropins, and absent AMH); CYP11B1 genetic testing, which would provide molecular confirmation, was not available. Glucocorticoid replacement normalized potassium and improved blood pressure, with ongoing multidisciplinary follow-up. This case highlights the radiological phenotype of neglected CAH in adulthood and the role of imaging in characterizing complex DSD when clinical signs alone are insufficient to reach a diagnostic conclusion.
Authors
- Nizar El Bouardi
- Amal Akammar (ORCID: https://orcid.org/0000-0002-0575-2047)
- Salma Abouchiba
- Hajar Ouazzani
- Nahla Ennejjari
- Meryem Boubbou
- Ismail Chaouche
- Mustapha Maâroufi
- Meriem Haloua
- Moulay Youssef Alaoui Lamrani
- Badr Alami
Institutions
- Sidi Mohamed Ben Abdellah University (MA)
Publication Details
- Journal
- Radiology Case Reports
- Published
- 2026-08-27
- DOI
- https://doi.org/10.1016/j.radcr.2026.07.094
- Primary Topic
- Sexual Differentiation and Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00