

Research

Guideline gaps
Featured article April-May 2025

The 2024 guidelines from the UK’s National Institute for Health and Care Excellence (NICE) regarding vitamin B12 deficiency are an important step forward but raise concerns—especially around the diagnosis and treatment of a condition called pernicious anaemia (PA). PA is the most common non-dietary cause of B12 deficiency and is often poorly understood and underdiagnosed.
PA is a serious, lifelong condition requiring regular vitamin B12 injections. However, many patients report that current treatment guidelines (one injection every 2–3 months) are not enough to manage their symptoms effectively.
Controversial Renaming
The 2024 NICE guidelines suggest replacing the term "pernicious anaemia" with "autoimmune gastritis" (AIG). The authors of this article argue that this change is problematic. While AIG and PA are related—AIG can lead to PA over time—they are not the same. PA is a later, more specific stage of the disease, defined by a true inability to absorb B12 due to intrinsic factor deficiency.
Renaming PA could create confusion for both patients and healthcare providers. It might also overlook the fact that PA can occur independently of full-blown AIG and that not everyone with AIG will develop PA. The authors advocate for keeping the name or at least adopting a clearer, more accurate term that reflects the autoimmune nature and B12-related consequences of the disease.
Challenges in Diagnosis
PA can be difficult to diagnose because its symptoms may be vague and vary from person to person. Some people may not show typical digestive symptoms, which can mislead doctors. Current testing methods also have limitations. The most commonly used test checks for antibodies against intrinsic factor, but this only detects PA in less than half of cases. Other tests like stomach biopsies or checking gastrin levels are underused, despite being helpful.
Surveys show that most PA patients in the UK are not given a gastroscopy (an internal examination of the stomach), which is a standard diagnostic tool in other countries. This is concerning, especially since PA and AIG are linked to a higher risk of stomach cancer and other complications.
Positive Developments in the Guidelines
Despite the concerns, the new guidelines do include promising changes. They recognize the importance of tailoring treatment to the individual—a shift from the one-size-fits-all model. Many patients feel better with more frequent injections, and some even self-administer B12 at home due to poor access or limited support from healthcare providers.
The guidelines also highlight the need for more research, including how to better support patients in managing their own care. This includes reviewing whether regular monitoring, such as for cancer risk, should be introduced for PA and AIG patients—something currently missing in UK practice but found in some European healthcare systems.
Source: https://www.nature.com/articles/s41430-025-01583-4