This is a very long piece about my experience. It has a good ending.
This goes back a few years
I was feeling tired and extremely fatigued and had done so for some 6 months. Simple tasks like loading a tumble dryer meant I had to go to bed.
I went to my GP and saw a locum. She ordered a full range blood test and everything came back normal. Except it was not. The lab had failed to flag that the serum B12 was at 173 in a range of 190 to 905. I went back and saw a different GP who ordered the test again. This time the serum B12 was 146. 2 days before that last test, I had consumed the equivalent of 1 kg of seafood in the form of crab, mussels, etc (I have always loved fish and this was nothing all that unusual). He was not all that concerned and explained that the range is only a guide and said there was nothing to be concerned about. Tests for PA and a few others things came back negative. I was gradually becoming more unwell, vision was severely disturbed and on a trip to London, I developed tunnel vision and an inability to process information to the extent that at times I was unable to move, because there was too much information to process.
I contacted the PAS and was stumbling about quite a lot with all of the information available. I spoke with Martyn who managed to help me significantly. I went back to my GP, as suggested by Martyn. This was yet another GP, she agreed to put me on loading doses – hoorah. Yet, at 3pm the same day she telephoned me to say she had spoken with an ‘eminent’ gastroenterologist who told her that men almost never get PA and that I don’t have a B12 deficient and she should not treat me, I asked that she call the PAS but she stated that it was against hospital procedure. I was still unable to function properly despite now taking oral spray from Holland & Barratt – I felt better but it was clearly not enough. I arranged to go back to the GP, this time with my parents in tow and my mother who was a healthcare professional sat in. The only progress we made was a BUPA referral to a neurologist. By the time I got to see the neurologist, I had moved on to sublingual at 6000 microgrammes per day taken 3 times a day and had been taking them for 6 weeks. My neuro symptoms had cleared and unsurprisingly there was not much in the way of neuro symptoms to look at. She said that vitamin D deficiency was very fashionable, whilst I was sat there with a ‘healthy’ summer tan. She chose to perform a brain MRI (all clear) and refer me to a haematologist and it was some time before I got there to the hospital in London. He confirmed B12 deficiency but again could find no cause. He recommended loading doses but no follow-on doses. He said I should have the loading doses once per week for 6 weeks (strange) He suggested to my GP that that would give me sufficient B12 in my liver for 2-3 years and if there were ongoing problems to conduct an active B12 test. My GP knew nothing of this and wasn’t even sure if it was available. Things were looking up because the GP that dealt with this letter was someone I knew I could trust – he spends 1 day a week in palliative care at the local hospice and had treated me in the past for chronic pain with morphine, after all else failed, so he knew I don’t swing the lead when I only need one bottle of morphine a year.
Fate stepped in. Shortly thereafter, I had to go back to my GP. During this period of time something had been happening that I had never thought o associate with the condition. 4 years previously, I became very ill and developed repetitive infections, this after a long run of chest infections and pleurisy, it was decided to remove my tonsils (this was shortly after my appendix had to be removed). I had developed a foot infection which was anaerobic, almost on the heal bone and not responsive to antibiotics. Unable to identify the infection and being almost on the bone, I had to go on a rapid succession of very strong antibiotics, this triggered a C Diff infection and then a course of Metronidazole. Put simply, I had no gut biome left. I was highly vulnerable to another C Diff infection and was recommended to consume large quantities of live yoghourt. I developed a yeast infection which was treated successfully and continued with live yoghourt. Over time an underlying IBS situation was developing.
This was the point of fate stepping in. The IBS was unresponsive to the usual treatment that had always worked and I was developing serious diarrhoea. My GP referred me to a gastroenterologist in London on my BUPA requesting that he also consider the history of B12 deficiency.
Tests were conducted for Crohns and SIBO which took some time to complete. He concluded that my condition was the result of a compromised gut biome, but there was little research to back up such a diagnosis but it was all that was available to him. He prescribed a course of Symprove probiotic. He write to my GP confirming B12 deficiency and an ongoing 2 monthly course of B12 shots.
Before I could order, let alone start the course of Symprove, I had collapsed at Victoria station in London and found myself in St Thomas’. It was nothing serious, vagus type 2 and global transient amnesia, but I was kept in overnight. Fate stepped in again. I was referred by the gastroenterologist to a cardiac specialist in London because he was concerned that there could be something more malign going on. I underwent numerous heart tests and scans, including breathing test and then a brain MRI. All came back clear. The MRI was the last test just in case the underlying B12 was a result of a pituitary tumour that had grown. A year earlier the previous neurologist had also undertaken a brain MRI without any issues shown, but the neurologist needed to be sure because although even rapidly growing tumours rarely develop from nothing in 12 months to symptoms there was no knowing if the previous neurologist had missed something. He confirmed that the B12 course should continue and confirmed that I had clear evidence, through symptomology, of neuro damage from B12 deficiency.
Well, that is it. I was now on a course of Symprove which I have now been on for around 10 months. I continued with daily sublingual, now at 2000 microgrammes each morning, to control visual disturbance and mouth sores. Every now and then I forget my sublingual and by around 11am the visual disturbance retuned together with mouth sores. Throughout the last 12 months however, I have noticed that I can go further before the visual disturbance cuts in. 1 months ago an underlying yeast infection was suspected and treated. Since then, I have been able to go more than 2 days without visual disturbance. I quickly take this when remembered so haven’t yet gone any longer.
What does this mean?
I think it would be presumptive, in the light of a recent PAS report on the gut biome to assume that this research is directly in line with my experience. However, correcting the gut biome and removing a yeast infection appears to have had a very significant impact on what previously was a need to take doily sublingual’s.
As a foot note. The gastroenterologist who told my GP that men almost never got PA resigned 2 weeks after I telephoned the Chief Executive office outlining that I was going to make a complaint against him and the reasons for doing so. Since discovering he had resigned, I actually never got around to making the complaint.
Throughout all of this, I have been director of regulatory compliance at my firm and have now moved on to setting up 2 new firms. I think this is testament to the huge progress that has been made in my recovery.
GP stopped my injections and referred me to the neurologist. How long before I can have another B12 test?
Is B12 196 normal?
Need Help For My GP…
Follow up from my GP appointment 
