Advice notice for Endocrinologists about Desmopressin supply (25th July 2024)

Desmopressin 4ug/ml for injection (Ferring) is going to be out of stock until October 2024.  A statement from the Department of Health and Social Care (DHSC) is about to be distributed that itemises the replacement options, including ordering unlicensed supplies. Endocrinologists are strongly advised to liaise with their Trust Pharmacies and act on the DHSC notification.

There are three main areas in endocrinology that this will affect:

1. Following pituitary surgery and in some patients on neurosurgical units following trauma/skull base infection – patients receiving small repeated doses (e.g. 0.25ug i.v./s.c.).
2. Use during Inferior Petrosal Sinus Sampling (IPSS) for investigation of ACTH-dependent Cushing’s syndrome (10ug i.v.).
3. Limited occasional use as a peripheral test for discriminating between non-neoplastic hypercortisolaemia and Cushing’s disease (10ug i.v.).

Cushing’s pathway

The shortage of this strength of desmopressin, and the global lack of Corticotrophin-Releasing hormone (CRH), further heightens the need for enhanced pathways for patients with suspected ACTH-dependent Cushing’s syndrome. Delays in diagnosis and onward referral continues to cause patient harm. The Society recommends that, as soon as there is suspicion for this diagnosis, that a referral on to the regional centre is made, especially if clinically or biochemically severe. As a minimum, early advice should be sought, ideally by attending the weekly regional MDT remotely / in person or by email to the lead clinician, rather than performing repeated diagnostic investigations since all peripheral tests for differential diagnosis lack accuracy and are unreliable.

Professor John Newell Price, Professor of Endocrinology and Honorary Consultant Endocrinologist
Professor Kristien Boelaert, Professor of Endocrinology and Consultant Endocrinologist, Chair Clinical Committee Society for Endocrinology
Professor John Wass, Professor of Endocrinology and Consultant Endocrinologist, GIRFT Endocrinology Clinical Lead
Professor Neil Gittoes Consultant & Honorary Professor of Endocrinology and National Clinical Lead Specialised Endocrinology, NHSEI