Vitamin B12 NICE Guideline Help!

Posted , 4 users are following.

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)

0 likes, 6 replies

6 Replies

  • Posted

    HELLO, my name is SUZANNE, I have had pernicious anemia for over 30 years, my low B 12 symptoms started with the tingling and then pain in muscles when picking up heavy things . Eventually my left eye was having grey outs . Thats where my eye would go grey for 90 seconds or more, maybe 50/60times a day. 281 is low enough ( here in US) to be treated. Our treatment is different than what you are able to recieve in the UK? I give my self injections once a week . MY endocrioligst watchs my levels , my level is best between 600/800. I also take vit D, Not everyone fits into the brackets of numbers.

    • Posted

      Thank you so much for replying SUZANNE. I'm going back to my GP tomorrow because im sure ive read somewhere that if im having neurological symptoms they need to start treating me. The range of level they used was 160.00 - 1000.00ng/L.

      My reading was 281ng/L and underneath it states that because my levels are over 260ng/L deficiency is highly unlikely, although ive read a book called 'Could it be B12' and that states different.

      Im worried sick i have MS because the Doctor said we need to see if its MS.

    • Posted

      I understand you a frightened, just take one step at a time. A level of 281 I would not be able to get out of bed. I realize UK treats a low B12 differently than here in the US? Can you buy b12 Tablets at the pharmacy ? if you can I would start taking them, if you have true pernicious anemia the tablets won't work , but hopefully you only have a one time low b12.

    • Posted

      Pernicious Anemia is a autoimmune disorder, usually inherited, it is the reason people have a low b12 . The internet is a great place to find out more about PA. The disorder involves the intestines and a loss of intrisict factor an enzeme in the intestines. A schillings test will diagnose it. Here in US that test is not always done . If after b12 is increased then drops again , thats enough. When I was diagnosed my b12 level was 117. I'm not a medical person , just trying to help you with your questions.

    • Posted

      Hello Suzanne57663,

      I've been reading up on some posts here and looking for some wisdom like you provided, so want to say thanks, first! I am also in the US. I am 34 years old and my mom has pernicious anemia and gets injections monthly (she was diagnosed 20 years ago in her 40's).

      I have pins and needles in my hands/feet/legs and headaches. I had some blood tests done and my B-12 was 282 and had low RBC as well 4.08. Headaches seem to come with the increased tingling. I also get vertigo/light headedness and seeming fatigue.

      I just started once daily oral B-12 - I will see after 1 month if this improves things, per doctor. Hoping it does! but wanted your take on this - does this seem like low B-12 to you from US standards?

      thanks so much!


Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.