I am B12 deficient and ferritin deficient - diagnosed 2 years ago. I also have occipital neuralgia cause by upper spinal problems and I have a tethered spinal cord (a form of spine bifida). My Nan, mom, and 3 sisters all have the same B12 issues. I don't have PA apparently, but I also suffer with chronic diarrhoea and lost 20cm of my colon to acute diverticular disease in 2013 - so it's probably an absorption issue.
I suffer with neurological symptoms like mental fog, jumping nerves in my legs etc. Not to mention the continual pain from my neuralgia.
To get to the point of my post, I have been treated with initial loading dose and then hydroxocobalamin 1mg every 12 weeks. For a few weeks after the injection I notice an improvement in pain and some of my other symptoms. However, after reading posts on here and doing my own research I decided to visit my GP for further advice and to ask him to treat me as per the NICE guidelines for someone who is B12 deficient with neurological symptoms.
This is what he said:. He doesn't treat B12 unless it's under a 100 and as my level was 112 when I was diagnosed I shouldn't have any symptoms (a different doctor at the practice diagnosed me). He believes it is GPs over prescribing meds that causes people who are deficient to become dependent on higher levels of B12 so they can't manage without it!! Also, there is no point having a level over 1000 because it's no more beneficial than a higher level and the scale doesn't measure above 2000 anyway. I did manage to get him to agree to 6 weekly injections because I wasn't leaving until I got something more.
Apologies for the long post: my questions are,
1) could my occipital neuralgia be caused by B12 deficiency - does anyone else suffer with this?
2) is my GP right?
3) any advice or thoughts on my situation and what I could do next?
Many thanks in anticipation and again apologies for such a long first post; I am desperate for some input from people who know what's what and understand the complexity of this issue.