Hello everyone,
I apologise in advance as this post will be quite long but I want to give as much info as possible about my situation.
I have an autoimmune disease and take immune suppressing medication for it. Consequently I have regular blood tests, looking at, among other things, my WCC. Over the past few years my WCC has been in general decline and my neutrophil count has regularly dipped to 1.6. It recovers, but it doesn't recover as much each time. The level only went back up to 2 last time before dropping again to 1.6. My rheumatologist has said if the level goes down to 1.2 I will have to stop the immune suppressing drugs, which I really do not want to do.
I researched on the web to see if there was anything I could do to boost my neutrophil level and B12 came up as a possible solution. I could not, however, find anything to say whether this would work if the low neutrophils were drug induced.
In December 2018 I had tested as B12 deficient (result 157pg/mL, range given as 180-914pg/mL) and I was given 6 loading injections over 2 weeks then 12 weekly injections for a year. I was told I was "not that low" but I was experiencing numbness and pins and needles at night in my little and ring fingers on both hands going up to my elbows, extreme fatigue etc. so the GP agreed to inject. She ordered the intrinsic factor test but the nurse messed up and did not take enough samples so I ended up having that test on 9/JAN/2019. My last B12 injection had been 7/JAN/2019 which was one of the loading doses. The result of the test was 3u/mL.
In Feb 2020 my B12 was tested again and the result was 534pg/mL (normal range now 145-914) and I was told not to continue with injections as I did not have PA.
Which brings us to the current time. After reading that B12 may help my neutrophil level I remembered that my neutrophils had been low when my B12 was found to be low so I visited my GP to discuss. Amazingly I got a female GP who treated me like an intelligent woman and not like I was suffering with hysteria. She decided to test my B12 and folate to see what my levels were.
The latest tests results were 189pg/mL (range still 145-914) so within "normal" limits - but it means in 2.5 years I have lost over 90% of the B12 I had received from the injections. This makes me wonder if I have been absorbing anything at all from my diet as I read that the body stores B12 for between 2-4 years. At this rate I will be back down the pre-injection level before 3 years have passed.
I am not vegetarian or vegan. I discovered I am lactose intolerant about 18 months ago, so I do not have milk, but I use Oatly (which is fortified with B12). I do have small amounts of cheese which is naturally low lactose and I also add fortified nutritional yeast to dishes. I eat eggs, red meat and poultry, so I feel that my diet should provide at least some if not all my B12 requirements.
So, all this has made me question a few things:
Are the low neutrophils actually drug induced - could they be linked to a B12 absorption problem?
Did I have a false negative IF result - especially as the blood was taken 2 days after an injection (possibly just over 48 hours between the two but my patient record does not record the time!)
I DO have gastro problems that have been brushed off for years. In the end I paid to see a gastro privately who thankfully agreed to take me on his NHS list. The first test he ordered was B12, B9 and Vitamin D. This test was taken a week before the GP test but I do not have the results yet. The GP test showed my folate was 15ng/mL. I already take 1000iu of Vitamin D daily as I have latent TB and have to ensure I keep my vitamin D level up. So, it may be I am not absorbing the B12 because of a gastro problem but I am not convinced that PA has been conclusively ruled out.
I have a lot of the symptoms listed on the PAS website (I think about half of the symptoms listed) including a number of the neurological symptoms.
Should I be pushing for another IFAB test? Should I ask for a different test or to see a specialist? Any advice is greatly appreciated and thank you for reading to the end!