I have these strange and rather painful sensations in my toes and they don't seem to go away. My control is good and no HPC seems interested in looking into the reason I have these sensations. I have booked an appointment in the week after next with a locum, nothing else to be had.
I noticed that on the test I had in September my B12 had dropped to the lowest ever while, still well within range and MCV had gone up, still within range too but higher than it has ever been before. Hb at the top of the range as always.
My questions are, those of you who need to supplement with vitamin B12, do you recognise the funny feet feelings?
What other symptoms did/do you have?
What treatment has worked for you?
How long did it take before you noticed any improvement?
Hi.
It’s possible that you may have more than one condition interacting, rather than a single problem that a silver bullet would fix. It would really be worth getting a referral to a specialist endocrinologist and/or neurologist, to see what strikes them. If you can’t get a referral then think of going private, just for a diagnostic consultation (they aren’t very expensive when you consider the broader picture – obviously a course of private treatment is extortionately expensive, but it is the diagnosis that is the key thing, and you will usually get more time and attention out of a private meeting and certainly have the meeting more quickly).
As regards B12, some of your symptoms would fit B12 deficiency, but of course they also fit many other conditions, and as others have said your B12 numbers look pretty good. In answer to your question, B12 deficiency affects people very differently. My reading was ridiculously low – 72 – but the only symptom I was aware of was a non-peripheral patch of my body that had been permanently numb for years (as it wasn’t peripheral the diabetes doctors weren’t interested – usual problem that specialists only focus on one thing). The telling evidence was the NCV (nerve conduction velocity) test, which showed my nerve conduction was very weak indeed.
Of course, with B12 shots my B12 is back to normal, but the issue is always how much damage was done before treatment (in my case, nerve damage is assumed to have been significant). Similarly, this is one of those issues that doesn’t get discussed enough with diabetics, I think: we may have good control and good hba1c NOW, which is always a good thing, but we will vary enormously in how much damage has been done before diagnosis, and that will affect our long-term health and our response to treatment.
I would urge you to try to talk to more than one specialist – so often these issues are interrelated. It has taken years for me to finally have a specialist (in this case a heart surgeon) say that my condition needs to be approached holistically, and that cardiologist, endocrinologist and neurologist actually need to meet together to sort out what is going on, and how far autonomic neuropathy from the B12 deficiency has messed up how my other organs are behaving (and who knows, maybe even work out why my body stopped absorbing B12, which they still can’t fathom). My diabetes doctor isn’t keen, though, so this may mean another private meeting. Good luck!
