my blood results are within normal range but I continue with symptoms like sudden and extreme fatigue, muscle weakness , low mood and

[doityourself]

shooting pains. Do I need to top up my B12 independently as doctor will not and symptoms start 6 weeks after my injection. If so are patches effective? I don't think I could self inject.

[Hidden]

Blood results are irrelevant once on B12 treatment, it's symptoms that matter. You could try showing your doctor the Patient UK professional reference article:

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

"Management[1]

For patients with no neurological involvement, treatment is with six injections of hydroxocobalamin, 1 mg in 1 mL at intervals of between 2-4 days.

Subsequently, 1 mg is usually given at intervals of three months. There is as yet no evidence-based guidance as to the optimum regime but the National Institute for Health and Clinical Excellence (NICE) is considering releasing guidance in due course. It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[24] 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.

For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every 2 months for life.[1]"

So, your serum B12 level is not telling your doctor anything about how much B12 is getting to the cells. Also note the comment about there being no optimum regime - i.e. 3 monthly is just a guideline, it's not meant to be set in stone for everyone. Tell your doctor that based on your symptoms you need your injection once a month, and there's nothing in the guidelines to stop him prescribing that. In fact, if you have any neuro symptoms you should be having it every other day.

I'm not a fan of the NICE guidelines, too much focus on the presence of anaemia, but this is what they say about symptoms returning before the next injection:

cks.nice.org.uk/anaemia-b12...

"Some experts acknowledge that there is a small group of patients who report a recurrence of their symptoms earlier than 3 monthly.

CKS could find no guidelines or evidence on the management of this group.

Feedback from expert reviewers differs with regard to whether or not more frequent intramuscular injections of hydroxocobalamin 1 mg are required, and if they are, what regimen to suggest.

In the absence of evidence and expert consensus, CKS suggest seeking specialist advice in this situation."

They basically don't know what to do with us, and it's most certainly not a "small group of patients". I believe that the most common enquiry the PAS office receives is "how do I get more frequent injections?"

Sorry, rambling on. Go here for info and links:

b12deficiency.info

I believe some people get relief from the patches, I've never tried them. My default position is to try and get more frequent injections from your doc. If going it alone, you may find this link useful:

pernicious-anaemia-society....

Hampster

[doityourself]

hampster1. thanks very much for that full and thorough reply, no you were not rambling. I shall check out the links you supplied and go back to doctor armed with the information. They know very little really. I only got diagnosed because of another illness I just could not recover from and then it took a young, enthusiastic trainee G.P to send for the right tests! Many thanks again and be well.

[johnbarriesmith]

Every one is different I have to run my B-12 levels at a min of 1000 , but I have Polyglandular Auto Immune problems , I now have to inject every two weeks but the NHS is refusing prescriptions so have to add more costs by using the on line Dr Service , the Royal Colleges have a lot to answer for with their Cartels .

[doityourself in reply to johnbarriesmith]

thanks John, Going back to GP but not holding out much hope. Think I'm going to have to come to terms with the self injecting option. Royal Colleges etc!!! Don't get me started!

[Erainy in reply to johnbarriesmith]

Don't forget, some doctors, charity (typically cancer related research), scientists don't want you to get better. It's better you stay sick so that they can profit from treatments & prescriptions. This will become more prevalent once NHS is privatised within the next 5 years.

[johnbarriesmith]

I completely agree , I have had a chest infection for 43 weeks 4 courses ok antibiotics the last one double dose , they tell me i am quite well , yet my blood sugars have never been this unpredictable in the 53yrs of my diabetes . One GP recommended I have counselling and cognetive training to help me live with it , but having been there in 2006 I was able to rebuff his argument .. I have yet again had to bear the cost of a private 2nd opinion on the 26th nov .

[suki65]

do you or have you taken statins ? i had muscle weakness after taking statins my b12s where 364 but after taking b12s 1000ug every day for 2 months my levels are now 587and i feel so much bettter .a great book to read could it be b12 an eye opener