I have been having b12 for over 10 years, every 6 weeks. Suffered with terrible mouth ulcers, was 6 stone, v tired, aching joints, mobility issues etc etc .Having the B12 changed my life . I was never officially diagnosed with PA but in the last year have been diagnosed with UC ( Ulcerative colitis). I have moved Drs ( Sept 21) and they challenge me every time I go to move to 12 weekly. I moved it out to 8 but am feeling really tired and starting to get mouth ulcers again. Last week I went for my jab and got really harassed by the nurse and ended up in tears. I am not sure I can go thought this every time I need my jab so am thinking about buying my own and injecting myself. Please can anyone give me some guidance on where to buy, what to buy and what needles are best . Thank you H 
Buying B12 injections: I have been... - Pernicious Anaemi...
Buying B12 injections
Have you had your folate level checked?
I'm sorry you battle like so many of us.
Nurses have little or no knowledge of b12 issues
Gps vary .
The nurse should simply do your injection as prescribed.
Write in to your Gp.
Letters harder to ignore.
I've had akot of opposition from gps and nurses.
Although I do presenty have 2 weekly b12 injections on an NHs prescription I bought my own for security when covid hit the country and we were in lockdown.
If you look through recent posts wedgeeood has posted a long one on where you can buy b12
Try and stick to tyoe you know.
It can be given subcutaneously or intramusculary
You obviously need y weekly or even more frequently.
It's not s competition is it to see hod long hours csn go.
With a 'prize' from the nurse fir complying to 2-3 monthly.
The main thing is bring as ell as you cdn on whatever frequency.
PAs may help.
Tracey witty has loads of information. .
Sleepybunny post loafs of links too.
Doctors cdn pescribe 'off licence ' and do all of the time in the 'patients best interestes '
My folate was fine but apparently my iron was low so they have put me on iron. The B12 was apparently off the scale hence why they say I should move to 12 weeks and have regular blood tests . I just want to be well I cant go back to feeling how I did before the injections Its too much and I dont have the fight anymore .............
Yrs that happens alot.The medics go by numbers not symptoms.
The whole point of b12 injections is to keep the levels high!!.
Once on injections testing levels is a waste of money.
It's in their guidelines
PAS can advise GPS
Hooe fully once you've had your b12 tiur fight will return.
I know how difficult it is .
Good your fokate was fine.
My daughter gets ulcers as a sign if it's dropping.
Increasing your iron levels will help enormously.
I'm on a low dose maintenence of iron since on injections.
My folate also okay.
However j fo have akot if gokate rich foods and a low dose in a multuvit 3x a week.
My iron wasn't even 'flagged as low.
I had to question ir with gp when compared bloods from before.
Everyone operates at different levels.
My ferritin at 29 gave me symptoms ' extras' my daughters was 9 abd still not 'flagged' ???
They look at the whole iron picture but even so . If symptoms are there shoukd be acted upon.
Keep strong
You know your body
I'm sorry, that must be so frustrating. It's not right!
See wedgewood's replies on these posts:
Here's a fairly comprehensive recent one healthunlocked.com/pasoc/po...
For needles see this post, i think most in the UK use medisave. You need to decide if you want to do IM or subcut. healthunlocked.com/pasoc/po...
Hope that helps, good luck !
You are so brilliant - I've often thought it would be good to link to a particular post or reply but never tied my brain cell down long enough to work it out! 😁 Now I've seen how you've done it I will do the same in future! 😃
Thanks for finding the best links. 😎
Lol thanks Denise 😊😘 my trick is to click on the profile and then go to that person's replies. Eg healthunlocked.com/user/wed... then in fact i try to link to the reply itself but i had to open up a few to find the right posts, so i got lazy and just copied the main post url... but if you go from the 'replies' page you can link directly to that person's reply. 😁 Easy to do with wedgewood & sleepybunny's posts cause they are always comprehensive & thorough, bless them for their efforts!!
Thank you!
Yes, I know, they're wonderful aren't they!
Thank you
wedgewood and
Sleepybunny
♥️♥️♥️♥️
Sorry to read your post, Nobody should have to be reduced to tears and suffer. You are making the right move in getting your own supplies of B12 and going down the S.I. route. I would love to get into the mind set of these Doctors and Nurses. I just don't understand how they are prepared to let someone suffer when they are supposed to give a standard of care. Surely it is more beneficial to have patients healthy and leading a normal life, than having them on a cocktail of drugs that do no good what's so ever. Hope you feel better soon, low Iron levels do take a while to kick in.
Hi,
So sorry to read about what your experiencing.
I can understand why you are considering self treatment.
wedgewood has posted some helpful info on the forum about getting supplies so you might want to look at her forum posts.
May be worth one more attempt to get GPs/nurses to treat you adequately.
No-one should come out crying after an appointment...it happened to me after many appointments.
NICE guidelines - Patients' experience of healthcare
Adults
Also worth checking out the values and mission statements on your CCG (Clinical Commissioning Group) or Health Board website. They should say something about how patients should be treated.
May also be mission and values statements on your GP surgery website.
PAS membership is separate to membership of this forum.
People do not need a confirmed PA diagnosis to join PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has useful leaflets/articles and a page for health professionals that your GP may find interesting.
pernicious-anaemia-society....
pernicious-anaemia-society....
PAS has some support groups in UK.
Not sure if face to face meetings are being held again yet.
pernicious-anaemia-society....
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link has letter templates covering a variety of situations linked to B12 deficiency.
NHS Complaints
patients-association.org.uk...
Care Opinion website
Local MP or devolved representative may be worth talking to if struggling to get adequate treatment.
A few people got to the Press/other media
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
NHS Complaints Advocacy
voiceability.org/about-advo...
pohwer.net/nhs-complaints-a...
advocacyproject.org.uk/what...
There are other advocacy groups in UK besides these.
Search online for "NHS Complaints Advocacy".
Parliamentary and Health Service Ombudsman - England
There are ombudsmen in Wales, Scotland and NI.
If a GP says they cannot prescribe your B12 injections more often, try to get them to explain why.
Knowing the reason why can help you to argue against them.
If they say "It's against the guidelines" ask them which guidelines and get the exact title so you can track them down and check for yourself.
GPs are allowed to prescribe off licence if they feel it is in the patient's best interests
Links about Prescribing medicines/drugs off licence
gov.uk/drug-safety-update/o...
gmc-uk.org/ethical-guidance...
Misconceptions
Your GPs may have some misconceptions (wrong ideas) about B12 deficiency.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
UK blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
BNF (UK) treatment guidance has changed since above blog post was written.
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
May be some useful quotes you could use in a letter to GP in documents below
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF link below outlines two patterns of treatment for B12 deficiency
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local B12 deficiency guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
Read blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines.
b12deficiency.info/gloucest...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
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