So I have just orederd everthing i need for my B12 self administer journey.
My last B12 bloods were 420 this was taken 3 months after the loading jabs.
Even though I have clear neurological symptoms they still stopped them. I have been worried & so ill for so long & in a desperate state. Struggling at work & littetally house bound after work due to no energy confusion aniexty my eye sight has gotten worse & my hearing too tinitus everday now I already wear glasses & had hearing problems though. My hair is falling out & nails are brittle, hands & arms wake me from sleep with servere tingles pins & needles which is now painfull i have the the worst neck pain that gives me servere head aches its the part between my shoulder blades mainly to the right. My memory concentration is just terrible & now feeling depressed my appitie is going again and even trying to cook is a task my tongue is so painful this has started again in the last 2 weeks
My MRI came back normal & immune testing was normal too.
The ache has calmed down so wondered was that a side effect of the loading jabs?
Any advice is appreciated i really don't know what is best i feel so helpless at the minute but also glad I have taken the steps & bough my own B12
Thank you all x
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MissD1503
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Hi. We are si every other day as that is the guidelines for neurological problems. They state that this should continue until no further improvement in symptoms. My daughter has been doing this since September but with little improvement so we are having to do more blood tests to see what else could be causing her problems. I have cut down to once a week but am starting to slip back again so will increase to twice a week to see if that helps. It really is a bit of trial and error as we are all so different..what works for one person will not necessarily work for another. Good luck with si it really is nothing once you've done it a few times. Regards Catlover3
In UK, you have the right to ask for a referral although GP does not have to agree. I sometimes put requests for referrals into a letter to GP along with reasons why I thought they were necessary.
There's always a chance that the neuro might know more about B12 deficiency than your GP although even amongst neurologists B12 deficiency is not always as well understood as it could be by some.
If you're in UK, NICE clinical knowledge summary and the BSH Cobalamin guidelines specify that for a person who is symptomatic for b12 deficiency with neuro symptoms, GP should seek advice from a haematologist. Has your GP contacted a haematologist?
UK charity that offers free second opinions on medical diagnoses and medical treatment. I think they use a network of specialists across the UK.
Sources of support (UK)
PAS can offer support and info about PA.
If your Intrinsic Factor Antibody test was negative or normal range, I think they can point you to info about Antibody Negative PA. Membership costs £20 for a year. There may be a PAS support group close to you if you're in UK. Support groups may be useful sources of B12 info and shared experiences.
Where do get the self injection stuff from? I Nottingham it is impossible to get B12 extended loading due to policy of the Integrated Care Board which controls GP activities. I would appreciate your advice on this. Thanks
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