My GP has agreed to refer me onto a haematologist but I need to identify one who understands the serum chemistry of B12 - could anyone make a recommendation? I am prepared to travel anywhere in the UK for the right treatment, as I could waste more time and resources with the wrong specialist and get nowhere than I expend on travel to the right one. I live in northern England but can travel anywhere.
SHORT SUMMARY OF THE BACKGROUND:
I suffered a wide range of symptoms back in 2010 which my GP could not ascribe to anything. As I am a PhD scientist, it comes naturally to me to research things on the web and I self-diagnosed as B12 deficient. I do try to be dispassionate about things but could not help becoming excited at reading about brain fogs, which I recognised so clearly but hadn't even complained to my GP about, as I thought it was just premature ageing and slightly embarrassing for a person who had been considered intellectually very sharp! Also, on subsequent discussion with my parents, I discovered that 2 grandparents and 1 great grandparent had pernicious anaemia.
In 2010, my B12 serum level was at the low end of the reference range but within range, so my GP said he couldn't prescribe any treatment. I self administered methylcobalamin sublingually (1000 mcg daily) which worked very well indeed. I have no doubt that the methylcobalamin addressed my symptoms. It even addressed symptoms that I had not identified as symptoms. I hope that makes sense - I had deteriorated subtly in so many ways that I didn't even realise.
I had a follow up test in 2012, out of scientific curiosity as much as anything else. I find it very poor scientific practice to self-administer a substance and not monitor the level in the bloodstream. This test showed a B12 serum level above the measurement range of the test. I reduced my B12 intake to 2-3 doses per week and my level dropped to the high end of the reference range after 3-4 months.
I had another B12 test in August 2014 which again showed the level to be above the measurement range of the test. At this point, the GP instructed me to take no further B12 supplements. I was happy to do this until I felt any effect.
In April this year, I asked for a re-test as my health was bad but in different ways to those experienced in 2010. The one symptom that is shared between now and 2010 is ringing in my ears, which is constant. The B12 level was again over the measurement limit. The current GP seems quite panicy about it, as there is lots of literature about elevated B12 being related to cancer or liver disease etc. We have done basic tests which appear to preclude these.
I have held off from taking any B12 as I would like to have a full range of meaningful tests run at this point to fully understand "What the hell is going on", as D Trump might say. However, trying to get this current GP to rationally discuss tests for MMA or homocysteine is impossible. I have persuaded him that as he feels out of his depth, I should be referred to a haematologist. He has written twice to the local haematology consultant but I have the feeling they know less than I do based upon the replies. This is why I would like to know of any consultants that understand B12 and pernicious anaemia in depth. As a scientist, I'd love to understand what is happening in my blood - my instinct tells me it is some form of immune reaction and that I cannot get adequate B12 despite the high serum levels. There is also a slight chance I have a serious condition such as cancer or liver or kidney damage.
I have 2 job interviews coming up in the next few weeks for intellectually demanding, senior jobs. I fluffed in a recent interview for another role and partially blame this on brain fog. I may be tempted to load up with B12 before these interviews and ruin my scientific study of blood serum levels in a person who has not taken supplements for nearly 2 years!
I will use a pseudonym as it could be very difficult for me if an employer (or prospective one) thought I had brain fog, as I am employed for my brain power!