Seems I fluctuate

[Hercules1969]

After being told by my doctor that I couldn't possibly have neuro symptoms as I've only just gone low it seems I bounce about a bit. 192 in March. 337 in January. 217 a year ago. I am in a bit of a state. My arms and legs hurt so bad. Could barely walk today. I have had 6 loading doses too. As I have said elsewhere it might be something else (I am being tested for diabetes) but could b12 still be a factor?

[Gambit62 Administrator]

serum B12 isn't a particularly brilliant test for diagnosing B12 deficiency and will miss 25% of people who are B12 deficient. Neurological damage has been reported in people who are well into the normal range. The test looks at the amount of B12 in your blood so it can be quite useful for diagnosing an absorption problem - which would lead to lowering and then low levels. However, there is a lot more to B12 deficiency than the amount in your blood (and a lot more to it than macrocytic anaemia - a result of B12 deficiency rather than the causal mechanism behind most of the symptoms).

B12 is used in cells as a co-factor in a number of processes including the processes that reset neuro-transmitters, the processes that release energy, the processes that retain the insulating lining around cells. These processes can run more or less efficiently depending on variants in the particular genes involved in controlling these processes. Although variants that have a significant effect on the efficiency of processes tend to be quite rare they are probably a factor in why some people experience problems well into the normal range.

A drop from 337 in January to 192 in March is a significant drop and does very much imply that you have an absorption problem. Generally levels don't vary much because the body regulates levels in blood using some significant stores in the liver. This needs to be balanced against the general margin of error in the test itself - not quite sure what this is for serum B12 but if it was 20% then that would mean that you could have a level of 250 that would give results of between 200 and 300 if you repeated the test on the same sample a number of times.

Your GP needs to be aware that

a) neurological symptoms can be present well into the normal range

b) neurological symptoms can occur before any signs of macrocytosis show up in the blood work (25% of people first present without macrocytosis)

c) guidelines recommend treatment of neurological symptoms promptly and aggressively to prevent permanent damage

onlinelibrary.wiley.com/doi...

[Hercules1969 in reply to Gambit62]

Thank you. I am taking H&B sublingual B liquid. My doctor won't talk to me about this stuff any more. I am going to get a jab every 12 weeks from her. I have tried quoting this stuff and she blanks it. She accuses me of "clutching at straws". Maybe I am. I would prefer a B12 deficiency to some of the alternatives.

[Gambit62 Administrator in reply to Hercules1969]

so what is she doing about the other alternatives?

Those results are all quite significantly low results for someone who is on B12 shots - with shots your levels will be astronomic after the injection and then fall over time. PAS did a survery on where people found they started to feel poorly after injections and it came out as an average of 1000 (not sure if that was pmol/L or ng/L) - but there is a huge variation.

The current BCSH guidelines aren't to treat on the basis of B12 levels.

Suggest that you continue using the liquid - assuming it is only B12 you can up the levels - and see if that keeps you going between jabs - don't leave it when you have a jab.

[Hercules1969 in reply to Gambit62]

She has me on amitriptyline and a 4 month wait to see a neurologist. Also my glucose levels are up. I had HbAo1 test which I get the results of on Monday. Basically if they don't see anything off range in my bloods they don't want to talk to me. I go to the pain clinic at my local hospital but they are limited in their influence although they did tell my GP to put me on amitriptyline. I could disintegrate in the meantime. And if I do that'll be A&E's problem I guess.