Appraisal of the 2024 NICE guidelines

door bhrw | mei 30, 2025 | B12 | 0 Reacties

Understanding the 2024 NICE Guidelines on Vitamin B12 Deficiency and Pernicious Anaemia

In 2024, the UK’s National Institute for Health and Care Excellence (NICE) published its final set of guidelines regarding vitamin B12 deficiency. They are a significant step forward, as they have clearly outlined some crucial steps in diagnosis and treatment. However, they also 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 wildly 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 by far 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 absolutely distinct entities. 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 will create confusion, not only for patients but also for healthcare providers. It might also overlook the fact that PA can occur independently of full-blown AIG. Therefore, 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 are vague and vary from person to person. Some people may not show typical digestive symptoms, which can mislead doctors. Current testing methods have also serious limitations. The testing of serum B12 may yield different results, depending on the specific assay used. Derived biomarkers, such as methylmalonic acid and homocysteine, are not very reliable markers. As an example, 30-50% of people with biochemically detected B12 deficiency were found to have normal serum MMA. Furthermore, 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. Undergoing a upper gastrointestinal endoscopy is a burdensome procedure for many. Surveys show that most PA patients in the UK are not given such a gastroscopy (an internal examination of the stomach), which -in contrast- is a standard diagnostic tool in other countries.

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 many are able to self-administer B12 at home, allowing optimal treatment while reducing the burden on 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.

In short, the 2024 NICE guidelines represent progress but don’t fully address the complex reality of pernicious anaemia. Replacing its name may oversimplify a multifaceted condition and hinder proper diagnosis and care. The authors stress the importance of clearer diagnostic pathways, more personalized treatment, and ongoing medical education. They call for a more patient-centered approach that reflects both the science and the lived experiences of those with PA.

Find the full paper at: https://www.nature.com/articles/s41430-025-01583-4