I still feel very ill after having the 3 monthly injections

[peteteds]

when I was diagnosed my b12 level was 89. Following the 6 injections over 2 weeks I felt so much better. The pains in my joints disappeared as did my tiredness and there was a great improvemnet in my neurological problems. 3/4 weeks before the first of my three monthly njections, all my symptoms returned. 3 weeks after my injection I felt better but started to feel ill again 3 weeks before my next injection. I had a blood test and my b12 was 400 which is obviously way above the bottom level. I feel dreadful again but know my doctor won't do anything because of my level. Can anyone give me some advice?

[Hidden]

Draw your doctors attention to the BNF guidelines, summarised here under dose:

evidence.nhs.uk/formulary/b...

Your doctor should be treating you as per PA with neuro involvement. An injection every other day until no further improvement, then 2 monthly. This is quite clear, and all doctors have a copy of the BNF on their desk.

A B12 of 400 after all that treatment is not high at all, the range and the test are flawed. Most people receiving adequate treatment have a level well over 1000 to feel well and for healing to take place. Also, treatment should not be dictated by blood tests anyway, but by symptoms. That is why the BNF allows for an injection every other day, it is neuro symptom led.

You know when your symptoms come back, and it sounds to me like 2 monthly jabs might work for you. Since you have neuro involvement this is a no brainer for your doctor, just quote the BNF to him.

Hampster

[peteteds in reply to Hidden]

You're a star! Went to the doctor today and she basically told me it is all in my mind! I don't think anyone has checked to see whether it is diet related or that I can't store it. Whats the difference between pernicious anaemia and just b12 deficiency?

[Hidden in reply to peteteds]

All in your mind? You could have tried slapping her - and then telling her that she just imagined it! Only kidding, violence isn't the answer, education is.

Print her off the Patient UK professional reference article, and highlight under the section headed "Management":

"It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level. It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels."

patient.co.uk/doctor/Pernic...

The article also explains PA, and gives some other possible reasons for B12 deficiency. Dietary deficiency is unlikely unless you have been a vegan for many years.

This is another snippet I like from the B12d.org website:

b12d.org/book/export/html/1787

Particularly the section headed "Improved Treatment". It just really highlights the fact that one size really does not fit all, treatment needs to be tailored to the individual.

H x

[nobodysdriving]

I've given up on my NHS GP and follow the advice of my private doctor, I inject as often as I feel I need it and for me it's daily 750mcg of methylcobalamin.

Very good advice above, keep trying if you have the energy to and I hope you get there

[Jane123 in reply to nobodysdriving]

jane 123

[LittleA in reply to nobodysdriving]

Where do you get your supplies from?