Vitamin B12: Can anyone help me with regards to... - Thyroid UK

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Vitamin B12

SpiritualT
SpiritualT

Can anyone help me with regards to the NICE guidelines in relation to Vitamin B12?

I've been experiencing some neurological symptoms over the last week. Started off with tingling in my hands which travelled to my arms. went to A&E the doctor did no bloods and said it was a migraine. Fast forward to three days later, the tingling also went to my feet, legs and bum. Went to A&E again told the doctor who this time took my bloods. By this time i had looked it up on the internet and it was pointing to either B12 deficiency or MS. At this point I am worried sick about MS. The doctor in A&E said my bloods were fine but he didnt do a B12 blood test because they dont do that in A&E! He wants me to go for a scan to rule out MS. When I got home I dug out my blood results from September and my Serum B12 was 281ng/L. Which ive now read is low but within range at my GP surgery.

Ive read somewhere that if I have neurological symptoms and my level is that low that within the NICE guidelines they have to treat me with B12 injections. Can anyone shed any light (sorry for the long post.

2 Replies
oldestnewest

really suggest that you post on the PAS forum in respect of B12 issues.

healthunlocked.com/pasoc

A single serum B12 result is rather difficult to interpret. It may be worth trying to get the serum B12 done to see if the levels have dropped significantly (>20%) as that would be good evidence that you have an absorption problem and need to be treated with injections.

Unfortunately there are a lot of things that can cause the symptoms you mention. B12 absorption problems and how to use them are generally not well understood by the medical profession. In the UK the real guidance on diagnosis and treatment comes from the BCSH (British Committee for Standards in Haematology). GPs can access through the BNF but the standards are also available here.

onlinelibrary.wiley.com/doi...

My B12 level was simular to yours but my GP was very clear that even though I had clear neurological symptoms that she could also see & I also have another condition that predisposes me to B12 defiviency they are not allowed to prescribe unless your level drops below the threshold. In my area that is 185. This despite the guidelines telling them not to wait. In countries like China if you drop under 500 they treat.

She referred me to neurology which took 6 months of a wait. In the meantime my symptoms worsened so I made the decision when supplements didnt work to self inject. My symptoms have improved dramatically & my GP was impressed but still said they couldnt prescribe!!. The neurologist has supported & recommended b12 injections & written to them -still waiting for my GP surgery to agree, though theyve now offered me a 2 monthly injection -not enough as Im on alternate days. So waiting for them to reconsider.

I understand this is a common problem within the NHS & B12.

Wishing you sucess. I would go on the PA Healthunlock & see what advice they can give you. Im also a member of the PA Society who have a helpline for members. Good luck!!

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