Pernicious anemia is a blood condition where the body can’t absorb vitamin B12 properly because of an autoimmune problem. Researchers surveyed over 1,100 patients with this condition to understand their experiences with diagnosis and treatment. They found that many people wait years before getting diagnosed, and doctors use different treatment approaches that don’t always follow standard guidelines. This study helps identify gaps in how doctors currently handle this condition and sets the stage for better diagnostic tools and treatment plans in the future.

The Quick Take

  • What they studied: How long it takes patients to get diagnosed with pernicious anemia, what tests doctors use, and how patients are being treated for this vitamin B12 deficiency condition
  • Who participated: 1,191 members of the Pernicious Anaemia Society who completed an online survey; mostly women (81%), mostly from the UK (84%), ranging in age from 23 to 93 years old
  • Key finding: About 37% of patients waited 3 or more years to get diagnosed with pernicious anemia, and more than half of patients were receiving B12 injections in ways that didn’t match official medical guidelines
  • What it means for you: If you suspect you have pernicious anemia, these findings suggest the healthcare system may need improvement in recognizing and treating it. This research could help doctors develop better diagnostic tests and clearer treatment guidelines, though changes won’t happen immediately

The Research Details

Researchers created an online survey with 21 questions and sent it to 3,482 members of the Pernicious Anaemia Society between April and September 2022. The survey asked about basic information like age and location, when and how people were diagnosed, other health conditions they had, family history of similar diseases, and what treatments they were receiving. A total of 1,191 people completed the survey. This type of study is called a cross-sectional survey because it captures information from a group of people at one point in time, like taking a snapshot of their experiences.

By directly asking patients about their experiences, researchers can identify real-world problems that might not show up in medical records or doctor’s offices. This patient-centered approach helps identify gaps in diagnosis and treatment that doctors might not notice on their own. The information gathered creates a foundation for designing better diagnostic tests and treatment guidelines that actually work for patients.

This study has good strengths: it surveyed a large number of people (1,191), and the participants were specifically people with pernicious anemia who are engaged enough to join a patient support organization. However, the results may not represent all people with pernicious anemia, since survey respondents tend to be more educated and engaged than the general population. The study relied on people’s memories and self-reporting, which can sometimes be less accurate than medical records. Additionally, most participants were from the UK and female, so the findings may not apply equally to all groups.

What the Results Show

The survey revealed significant delays in diagnosis: 37% of patients waited 3 or more years before being diagnosed with pernicious anemia. This is concerning because untreated B12 deficiency can cause serious nerve damage and other health problems. Doctors diagnosed most patients using blood tests that measured B12 levels (50% of cases), tests for intrinsic factor antibodies (38% of cases), or tests for parietal cell antibodies (15% of cases). These different diagnostic approaches suggest there isn’t a standard way doctors are identifying the condition. The study also found that treatment approaches varied widely: some patients received B12 injections daily, while others received them only every 3 months. Most concerning, 52% of patients were receiving injections at frequencies that didn’t match official medical guidelines, suggesting confusion about the best treatment approach.

Nearly half of the survey participants (approximately 45-50%) had one or more other autoimmune diseases in addition to pernicious anemia, such as thyroid disease or rheumatoid arthritis. This suggests that pernicious anemia often occurs alongside other autoimmune conditions. One-third of participants reported having at least 2 family members (up to 7 in some cases) with pernicious anemia or other autoimmune diseases, indicating a strong genetic component to this condition. The majority of participants (84%) were from the UK and 81% were female, which may reflect either actual disease patterns or differences in who joins patient support organizations.

This study aligns with previous research showing that pernicious anemia is often diagnosed late and that patients frequently have other autoimmune conditions. The finding that treatment approaches vary widely confirms what many patient advocacy groups have reported anecdotally. This research provides concrete data supporting what patients and some doctors have suspected: that current diagnostic and treatment guidelines need improvement and standardization.

The study only surveyed people who were members of the Pernicious Anaemia Society, so it may not represent people with pernicious anemia who aren’t part of this organization. Survey respondents tend to be more educated and engaged than the general population. The survey relied on people remembering when they were diagnosed and what tests were used, which can be inaccurate. The study was conducted primarily in the UK with mostly female participants, so results may not apply equally to other countries or to men. Finally, this was a snapshot at one point in time, so it doesn’t show how things change over time.

The Bottom Line

If you suspect you have pernicious anemia (symptoms include fatigue, weakness, numbness in hands or feet, or difficulty concentrating), ask your doctor for B12 blood tests and antibody tests. Don’t accept a diagnosis without proper testing. If you’re diagnosed with pernicious anemia, work with your doctor to establish a clear B12 injection schedule and stick to it consistently. If your current treatment isn’t working well, consider asking for a second opinion or consulting a specialist. These recommendations are based on patient experiences documented in this research, though individual treatment should always be personalized by your healthcare provider.

This research matters most for people who have pernicious anemia or suspect they might have it, and for their family members (since the condition runs in families). It’s also important for primary care doctors and specialists who diagnose and treat this condition. Healthcare administrators and policymakers should care about this research because it identifies gaps in current care that could be improved. If you have other autoimmune conditions, you should be aware that pernicious anemia is more common in people like you.

If you’re newly diagnosed, you should start feeling better within days to weeks of beginning B12 treatment, though complete recovery of nerve damage can take months. Establishing the right treatment schedule may take several months of adjustment. Improvements in diagnosis and treatment guidelines based on this research will likely take 2-5 years to develop and implement in clinical practice.

Want to Apply This Research?

  • Track your B12 injection dates and times, along with energy levels (1-10 scale), brain fog (1-10 scale), and any numbness or tingling symptoms. Record this weekly to identify patterns between injection timing and how you feel
  • Set phone reminders for your B12 injection appointments and log them immediately after receiving treatment. Use the app to note any symptoms that improve or worsen after injections to share with your doctor
  • Create a monthly summary showing your symptom trends and injection schedule. Share this data with your healthcare provider to help optimize your treatment plan and ensure you’re following evidence-based guidelines

This research describes patient experiences with pernicious anemia diagnosis and treatment but does not provide medical advice. Pernicious anemia is a serious medical condition that requires professional diagnosis and treatment. If you experience symptoms like persistent fatigue, weakness, numbness, or cognitive changes, consult your healthcare provider for proper testing and evaluation. Do not start, stop, or change any B12 treatment without medical supervision. This article is for informational purposes only and should not replace professional medical advice, diagnosis, or treatment.