Hi, I am new here and having a hard time with my GP with my B12 and want to have my own health in my own hands since my symptoms are worse and I don't believe my results are at a normal range for me.
I am looking to inject myself B12, Where do I start?
Where do you get the B12 from ? and where do you get all the things from to inject?
Thank you
Hi,
I hope you get the treatment you need.
"having a hard time with my GP with my B12"
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
It might be worth having one more go at getting B12 treatment from GP.
If you're UK based have a look at following documents. It's possible that your GP may not have read some of these.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
BNF Children
bnfc.nice.org.uk/drug/hydro...
NICE CKS
cks.nice.org.uk/anaemia-b12...
Unhappy with Treatment (UK info)?
If your GP has not really listened to you before, it may be more effective to write a letter to them. In UK, my understanding is that letters to GP are supposed to be filed with medical notes so in my opinion are less likely to be ignored than info passed on verbally or on photocopies.
Letters could contain symptoms, test results, relevant personal and family history, extracts from UK B12 documents etc.
It's possible that writing a letter may irritate some GPs.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.
Link has lots of useful B12 info and letter templates that people can base their own letters to GP on.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
One I plan to read soon is ""Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
If there's any chance you might have PA (Pernicious Anaemia) then it's probably worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS has a helpline for PAS members to ring.
PAS support groups in UK
pernicious-anaemia-society....
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
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.
Both these tests can be unreliable.
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.
B12 Deficiency Info website
B12 Awareness
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
If you have signs of B12 deficiency, do you have any idea what might be the cause?
Some causes of B12 deficiency may be reversible.
Have you been tested for PA (Pernicious Anaemia)?
Diet?
Do you eat plenty of B12 rich food eg meat, fish, eggs , dairy, shellfish, foods fortified with B12?
Tested for Coeliac?
UK guidelines suggest anyone with unexplained B12. folate or iron deficiency should be tested for Coeliac disease.
If you were tested for Coeliac, did GP
1) Do both recommended tests tTG IgA and Total IgA?
2) Advise you to eat plenty of gluten in more than one meal per day for several weeks before the blood tests?
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Exposure to Nitrous Oxide?
gov.uk/drug-safety-update/n...
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi, smoked salmon?
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Do you have any neuro symptoms eg tingling, pins and needles, migraine, twitching muscles, numbness, limb weakness, memory problems, balance issues, restless legs syndrome plus others?
If yes, it's vital to get adequate treatment to avoid risk of permanent neurological damage.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Referrals
1) If neuro symptoms present, have you been referred to a neurologist?
2) NICE CKS link (up page) indicates that GPs should seek advice from a haematologist if patient has B12 deficiency with neuro symptoms.
3) If gut symptoms present, have you been referred to a gastro enterologist? Gastro specialist can hopefully spot signs of gut damage from PA, Coeliac, H Pylori etc
Sadly there can be ignorance about B12 deficiency among some GPs and specialists so be well prepared for any appointments.
Sometimes the route to diagnosis of B12 deficiency comes via other health professionals.
One forum member's B12 deficiency was spotted by his dentist. Do you have mouth ulcers, swollen sore tongue etc?
Other health professionals who may be useful are
Optometrist (B12 deficiency can affect optic nerve)
Audiologist (B12 deficiency can lead to hearing loss and tinnitus)
Podiatrist ( B12 deficiency can lead to neuropathic symptoms and podiatrists are trained to look out for neuropathy in feet)
Help for your GP
1) PAS website has section for health professionals. It is free for health professionals to join PAS as associate members.
pernicious-anaemia-society....
2) PAS website has a library section with useful leaflets/articles eg
" An Update for Medical Professionals: Diagnosis and Treatment "
You would need to be a PAS member to access them.
3) If you're a PAS member you may be able to arrange for your GP to speak to Martyn Hooper, chair of PAS.
I did eventually resort to self treatment when I had exhausted all chances of NHS treatment.
I am not medically trained. More B12 info in pinned posts on this forum.
Hi, thank you for replying. I have b12 injections already and if I don’t have them then my b12 is low. I used to have it every 2 months which really helped me and my symptoms and chronic pain was so much better. I’m now on 2 and a half months instead but my gp won’t put me back on just the 2 months.
I have written to my gp surgery and the practice manager and they will only prescribe the 2 and half months and 2 months at the doctors discretion, so basically if my gp is in a bad mood they turn round and say no.
So they are ignoring my letter, makes my long term pain condition worse and how my quality of life is suffering.
I can’t absorb much of vitamins due to having radio and chemotherapy when I was a child and all this is being ignored so my only option seems to be self injection.
Thank you for all the information,
I'm sorry to read that it is such a battle for you. It seems so unfair that some people have no option but to self treat.
I will answer your question !
We self-injectors mainly get our B12 Hydroxocobalamin ampoules from onlinr
I will answer your question . I started this before , then something weird happened ! We self injectors mainly get our B12 Hydroxocobalamin ampoules from German online pharmacies . I self inject after having terrible unsuccessful tussles with my GP, who would only allow me 1 every 3 months inspite of many symptoms returning very soon after injection.
versandapo.de is a good site , but is in German , so you need a translation app. Or use Google Chrome .At the moment they sell a pack of 10 ampoules for €8.49 or 10 packs (100 ampoules ) for €52.89
They charge €9.00 courier , no matter how many you buy . Takes 4 days to U.K.
Bodfeld-Apotheke.de is another pharmacy , but some people are having difficulties with the site .
mycare.de is another one, but the courier charges are high .the site is in English as well as other languages .
amazon.de can be obtained in English . Several pharmacies supply them , but many do not send to U.K.
It’s always a good idea to register with the pharmacies . Payment can be made by PayPal .
Search for Rotexmedica vitamin B12 Depot . Do put “Depot “ because this indicates Hydroxocobalamin not Cynocobalamin which they also sell .
Needles ,syringes , swabs and a yellow sharps disposal bin can be obtained from — medicare.co.uk
You need 2ml syringes ,withdrawing needles 1 1/2 “ x 21G and injection needles 1” x 25 G , if you intend to inject I.M. . I don’t know about sub-cutaneous .
I would also watch some utube videos about self-injecting . Some are very poor , some very good .
I hope this helps a bit . I know what it’s like to have symptoms returning , but not being believed by your GP . It is very depressing to put it mildly . Very best wishes .
Thank you so much for the information, this very helpful 
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