Hi guys iv just finished my two week loading of b12 injections and already I’m starting to feel the benefit of it, I have a lot more energy however I’m still having problems with my hands so not sure if anyone knows how long this will take before they start to feel normal again.. ? I suffer from constant numbness and pins and needles..
Iv also just found out that my b12 levels at the time of testing was 71.. is this classed as low??
Thank you! Xx
Your pins and needles are a sign of peripheral neuropathy which is a neurological symptom of a B12 deficiency. Not surprising with such a low level of B12.
The British National Formulary says that people with neurological symptoms should have loading doses every other day until there is no further improvement in symptoms.
bnf.nice.org.uk/drug/hydrox...
So you should contact your GP asking that your loading doses should continue.
I would also ask for a referral to a neurologist.
Thank you for your reply you’ve been really helpful.. the doctor has currently booked me in for beginning of February for my next injection but I did feel that with my hands the way they are that this was to long ! 🤷♀️
You need way more injections.. And you need them much sooner than February. ❤️
Hi,
Apologies for a quick reply but have to go somewhere.
If you have a PA diagnosis or suspect PA, worth joining PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Have you been tested for PA?
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
If you have a PA diagnosis I recommend you get proof of the diagnosis eg a copy of test results, letter from specialist, copy of part of medical records etc. Some UK forum members with PA have had their injections stopped and when they queried this have been told there was no record of their PA diagnosis.
Diet
What's your diet like?
Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with b12?
If yes to a B12 rich diet then B12 deficiency is less likely to be due to diet and more likely to be due to an absorption problem in gut eg PA, coeliac disease, Crohn's disease etc.
B12 deficiency due to diet is sometimes treated with low dose cyanocobalamin tablets.
My understanding of BSH guidelines is that if the cause is diet and there are neuro symptoms present then patient should be on B12 injections.
Might be worth writing out a typical weekly diet, food and drink, for GP especially if they think your diet is causing B12 deficiency and you don't think it's your diet.
Have you been tested for coeliac disease?
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
More about causes of B12 deficiency in the link to another thread at bottom of this reply.
Link about "What to do next" if B12 deficiency suspected or newly diagnosed
b12deficiency.info/what-to-...
Don't let GPs get away with under treating you. See links below and the letter writing link further down.
I suggest reading them thoroughly before you next have contact with GP.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Above guidelines mention both PA and Antibody Negative PA (where patient has PA but tests are negative). Cobalamin is the scientific name for B12.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
The above link has two patterns of treatment.
For those without neuro symptoms, it recommends....
6 B12 loading injections over 2 weeks followed by a b12 injection every 2 - 3 months.
Many GPs don't realise that the BNF allows for follow up injections to be every 2 months if no neuro symptoms present as the BNF guidance changed a couple of years ago.
For those with neuro symptoms present, it recommends...
A B12 loading injection every other day for as long as symptoms continue to improve then a jab every 2 months
There is no set time limit for how long the every other day loading jabs can continue if neuro symptoms present. It could be weeks or even months.
I suspect that many GPs in UK don't realise there is a different treatment pattern for those with neuro symptoms.
If your GP queries this info then you could ask them to check their copy of the BNF book and look in Chapter 9 Section 1.2 at the section on patients with neurological involvement.
NICE CKS
cks.nice.org.uk/anaemia-b12...
Local Guidelines
The treatment situation is complicated by each CCG/Health Board/NHS Hospital Trust having their own local guidelines on treating/diagnosing B12 deficiency.
I recommend you track down the local guidelines for your area of UK and compare them with BSH, BNF, NICE CKS links. Some of the local guidelines have not been updated for years and some differ from what is in BSH guidelines.
I hope you are not in the area below which has a poor reputation for how it treats those with B12 deficiency.
b12deficiency.info/blog/202...
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 5 in above link is about writing letter to GP if under treated for B12 deficiency with neuro symptoms.
Vital to get recommended level of treatment or there is an increased risk of permanent neurological damage including problems with the spinal cord.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Useful B12 book
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link in this reply for up to date info.
My impression is that many UK forum members cannot cope with the level of treatment available from NHS. Some struggle to get any treatment from NHS.
Quite a few on here have resorted to self treatment. Personally I feel this is a last resort but some, including myself, feel they have no other option.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents, useful blood tests and a few hints about dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
I have written other very detailed replies on the forum that you might find helpful.
Oops, it wasn't a short reply after all....
I am not medically trained.
Hi again,
I suggest you make a list of every symptom you have, especially every neurological symptom, for GP/specialist.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Symptoms of Peripheral Neuropathy
nhs.uk/conditions/periphera...
Have you been referred to a neurologist?
If you see a neurologist, get them to check your Proprioception Sense which is awareness of where your body is in space. Think it's also called Position Sense.
If you have balance issues when it's dark, your eyes are closed or your view of surroundings is blocked, that is suggestive of proprioception problems. Proprioception problems can be associated with B12 deficiency.
Two tests that help to check proprioception are
1) Romberg test
2) Walking heel to toe with your eyes closed
Videos of these tests are available on Youtube. These tests should only be carried out by a doctor at medical premises due to risk of injury.
I stupidly did the second one at home and almost veered into a wall.
A haematologist?
NICE CKS link in other reply suggests that GPs should seek advice on treatment from a haematologist if patient with B12 deficiency has neuro symptoms.
If GP won't refer you to a haematologist you could ask them to write to local haematologist for advice on treating you.
A gastro enterologist if you have gut symptoms?
Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori infection etc.
Be warned that there is ignorance about B12 deficiency among some specialist doctors so be well prepared for any appointments eg do some B12 homework first.
Symptoms Diary
Do you keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received?
Can be useful evidence of improvement or deterioration in symptoms to show GP/specialists.
Folate and B12 levels
What are normal B12 levels
B12 levels on sublingual hydroxycobalamin.
Extremely low B12 level 
B12 frequency & levels
