"A lack of understanding about Pernicious Anaemia"

My story began in 2021. I have hypothyroidism and started getting an allergic reaction to wheat that was getting worse. I also had various other symptoms including neurological symptoms, raised MCV, pins and needles, fatigues, pale skin, light-headedness when getting up, air hunger to name a few. Also importantly, previous history of low B12.

My GP initially referred me to the Dermatology Team at West Middlesex Hospital (WMH) who were great. They found that I had gastric anti parietal cell antibodies.  They recommended to my GP that I have further investigations, so far so good.

I did my research, also spoke to a pharmacist who advised I needed B12 checked and intrinsic factor blood test (IFAB). I got lucky at the GP appointment because the GP had a trainee with them, they googled IFAB then ordered the test. It seemed clear GP had no idea prior to googling what it was. My B12 was in range, IFAB positive.

I was started on loading doses but GP wanted gastro opinion. The gastro from WMH advised that my IFAB was only slightly positive. I did not have pernicious anaemia. The North West London CCG guidelines at that time said if IFAB positive that B12 injections for life needed. I wrote to both GP and gastro through PALS re IFAB result. The IFAB result was positive, the people who created the test determined whether a result was positive for PA and patient needed treatment. Despite my quoting the CCG guidelines, the Gastro disagreed. As my result was only slightly positive they wanted at least one more positive IFAB result despite my symptoms, my autoimmunity history, positive antibodies, gastric anti-parietal cells and the positive response to loading doses. I then wrote to head of gastro who repeated the same, my result was only slightly positive, its like saying you are only slightly pregnant. Although the treatment remained the same, the diagnosis has not been made, which to my mind is important.

There seems to be a lack of understanding with gastro team at WMH, GPs rely on them for advice so this is concerning. I live in a multicultural area with many vegetarians, B12 deficiency is likely rife in any case but if you need 2 IFAB positive results when CCG guidelines recommend 1 to get a diagnosis, I believe it is wrong. I can advocate for myself, but it troubles me deeply that others who cannot may not be getting the right treatment.

The IFAB is notorious for not always confirming when a person has PA. A positive test confirms PA, a negative test does not rule it out. The symptoms must be considered.