I've been back and forward to the Gp for a good few years complaining of fatigue and brain fog. I occasionally got little electric tingles down my spine at night too. In June he diagnosed me with chronic fatigue syndrome after the most basic of tests. In July I started to get problems with sunlight and bright lights and a burning sensation on my right thigh. In August after going for a brisk walk I took to bed for nearly three weeks and each time I stood up my heart rate went from 50 to 120 and I had to lay down (a tilt table test said no pots).
I got counselling and they said I was trying too hard to find a reason for my symptoms and that I should ask my GP about antidepressants for anxiety and maybe try to accept my situation.
I have ringing in my ears and tingling feet, restless legs, pins and needles in my hands when I hold my phone. I ache all over. I lay in bed and forget where my arms are. My sleep quality is terrible and I wake far too early.
A brain MRI was 'normal'.
I visited the Gp to discuss anxiety and he just handed me a prescription for antidepressants (I'm not on them) I then asked him if I could have my most recent b12 results as i'd stuck my symptoms in a checker and that popped up.
His response saddened me. He simply said "no", take these (antidepressants) and come back in a month.
I was concerned so I paid for a private test and my results came back as low b12 153 pg/ml.
I returned to the Gp and asked him for their b12 results to be told they'd not tested them since 2012 (four years earlier) and they were 'normal'. I asked to see the results and it turned out they'd done two tests. One came back as 146 ng/l but repeated 4 days later and it came back as normal.
He did a test that day and it came back as 314 ng/l. They won't treat me at that level but no one can explain why I had really now serum b12 then 'normal' b12 (both times) four days later four years apart. (*updated after checking over my Ebay records and having a flash back I remember taking sublingual b12 after being recalled to the surgery by the receptionist in 2012 to get my b12 test repeated. I only recently threw the bottle away because they'd expired and there was only a week or so worth used.)
I also need to know why they'd ignore the low readings over the 'normal ones with so many symptoms that suggest b12. (*updated I guess I know now but wish someone had mentioned supplementing or told me how low they actually were and that a week of supplements is useless).
I've seen three different gp's all of whom just say I'm stressed (i agree I'm stressed now but I'm sure it's b12 related). One told me to eat more fruit and veg. The first congratulated me on the loss of 2 1/2 stone in ten weeks (I'm not trying).
My intrinsic factor and pa antibodies are ok.
My routine bloods are 'normal' ( at the top of normal) except mean cell haemoglobin which was above range.
I've been taking sublingual methylb12 2000ug and a multi vitamin plus d3 for a month now and do have more energy (still low but more). The neurological symptoms are still very present. Gp says not a chance of b12 trial and quoted a case where a GP was struck off for prescribing b12 for fatigue.
I had hpylori five years ago, treatment but no follow up so I've just done a private stool antigen test but it was negative.
I was negative for celiac antibodies too but I get bad guts and constipation when I eat wheat. I haven't been good with dairy for years and was vegetarian in my 20's (I'm 45) and am not a big meat eater now. Being dairy intolerant I dont eat fortified cereals.
I feel like I'm losing the plot. If I'd known in 2012 that I had a deficiency I would have added it to my diet before all this got worse.
I feel let down. Could this be b12?
Here are my bloods from back in 2012 and from 2016 (two in the space of a week but one low and one ok for b12).