Is B12 261 pmol/L while doing SI OK?

[Katherine_dT]

I was diagnosed low B12 last year Jan (68 pmol/L; adequacy >221). Symptoms = tiredness, peripheral neuropathy. Started SI and over the year the symptoms got better (it took until around November to feel 100% myself again).

I tested again in Jan19 with result 261 pmol/L (adequacy >221), having last done SI 2 months before.

Is 261 low while self-injecting? If so, any suggestions as to what the reasons could be?

(I not vegetarian or vegan, not on the meds that can lower B12)

[clivealive Forum Support]

Hi Katherine_dT When you were diagnosed with B12 deficiency did you doctor not offer any treatment?

How are you feeling now? Have any of the symptoms returned?

If you feel the need to self inject you will not do any harm to yourself. You cannot overdose on B12 as any excess is excreted via your urine.

I am not a medically trained person.

[Katherine_dT]

clivealive My neurologist put me on a protocol (1wk daily SI, 1month weekly SI, 6months monthly SI) but I kept injecting more regularly (weekly, then 2-weekly, tapering down to monthly) as my peripheral neuropathy symptoms continued. That eventually stopped, after months of SI (Did this in line with the NICE guidelines.)

Then it came back. So I've kept injecting whenever my peripheral neuropathy comes back. I'm wondering, though, why I have to keep doing it. I guess I could have PA (though I tested negative for intrinsic factor - though we know that's not a v sensitive test).

I thought that when you are doing SI, your B12 results should be in the thousands - is that correct? Hence my wondering why mine was only 261 after my last SI. Do some people 'use up' B12 quickly? Or is that an expected result if you have B12 absorption issues, and it's been 2 months since last SI?

Hope I'm making sense! And thanks for this fantastic forum and your care and knowledge

[Gambit62 Administrator in reply to Katherine_dT]

2 months is actually quite a long time since injections

if you have a B12 absorption problem then you aren't able to rebuild B12 stores in an effective way so that means you are left with the amount in your blood. One of the jobs your kidney do is filter out excess B12 - on average this takes 1 month with cyanocobalamin and 2 months with hydroxocobalamin but that is an average and there is a lot of variation.

So, a level of 261 is what you would expect on average 2 months after an hydroxocobalamin shot. That doesn't mean you are okay at that level - some are, some aren't ... so going by symptoms is the right way to go in terms of treating the B12 absorption problem

[Katherine_dT in reply to Gambit62]

Thank you! That's really useful. I think I will inject B12 every month - my symptoms seem to return if SI >1 month. I don't know if I have an absorption issue, but it's likely. I'm in South Africa and my GP is happy to prescribe B12 for SI, so I'm just going to keep doing that!

Again a big thanks to the members of this group - you guys are so helpful and you help keep me sane (this B12 thing can leave one feeling like a bit of a crazy person).

[Gambit62 Administrator in reply to Katherine_dT]

yes, sounds as if monthly is the way to go - listen to the symptoms and save money on the blood tests - though worth getting thyroid checked once in a while as 40% chance of developing hashimotos (autoimmune thyroiditis) if you have PA