Hi All,
I’m having B12 injections every three months as prescribed by my GP. I’m feeling very low and wonder if it’s safe to self inject more regularly and if so how would I go about that! I have an ileostomy which is causing B12 not to be absorbed! I’m in the UK. Thanks!
You could try asking your GP to let you have more regular injections . According to the latest guidelines , you should be able to get 2 monthly injections . Failing that ..............
Help for U.K. Pernicious Anaemia patients and others wanting to self-inject
B12 ( Hydroxocobalamin) ampoules can be obtained from some German online pharmacies . These pharmacies are strictly controlled by the German Health authorities.No prescription needed in Germany . Many members of this forum use these pharmacies , and they are very reliable .
Search for Rotexmedica vitaminB12 depot . Don’t forget “depot” because otherwise you could accidentally order B12 Cynocobalamin which Rotexmedica also produce. Cynocobalamin would work for you , but the NHS uses Hydroxocobalamin. Cyno is cheaper . These ampoules are 1mg x 1ml
bodfeld-apotheke.de. ( In German, but can be obtained in English from a drop-down list in the top right hand corner of the site )
versandapo.de ( In German only ,so you might need a translation app , or use Google Chrome )
These pharmacies use a courier to deliver , taking about 4-5 days . At the moment it costs €9,89 , no matter how many you order ( I order 100 at a time , and they have a use-by date of 2 1/2 years hence ) You can pay with PayPal , a card or Amazonpay .
I have registered with the above pharmacies . It makes it so much easier when you re-order .
amazon.de ( German Amazon, available in English ) The disadvantage here is that the several pharmacies who sell b12 ampoules through amazon.de , do not all deliver to the U.K. You need to trawl through till you find one that does . Some times the first one to appear will send to UK .
Needles, syringes , swabs and sharps disposal boxes can be obtained from medisave.co.uk . Always buy 100 of every item ( no, not the disposal boxes!)
I buy long withdrawing needles 21G x1 1/2 inches, because the extraction process blunts the needle on the glass ampoule .( ouch!)
I use a 25 G x 1 inch injecting needle .
Open the ampoule using the swab to avoid nasty cuts .The weakest place on the ampoule is marked with a spot on the neck.
If you have trouble with this, a device ,an ampoule opener , about £3.00, obtainable from amazon.co.uk
exchangesupplies.org also supply needles and syringes .
I use a 2 ml syringe although the ampoule is 1ml , to make sure I get every last precious drop of B12 , I pull out the plunger , and inject the air SLOWLY into the ampoule . Then when the plunger is pulled out for the second time, every last drop of B12 is in the syringe . Then put on the injection needle , and expel the air until a tiny droplet of B12 appears on the end of the needle . Now you are ready to inject into the middle outside third of your thigh ( vastus lateralis muscle ) , which is where the muscle is nearest the surface . If you are needle phobic there is help in the shape of a device called an auto-injector . Available from a Danish company unionmedico.com costing about £100.00. I don’t use one, but I’ve heard good reports .
You can find videos demonstrating Intra -muscular injections on utube Some are good , others poor . You can also inject sub-cutaneously , but I know nothing about this method .
If you are injecting B12 for the first time, you should have someone nearby, in case of anaphylactic shock . This is a very rare reaction , but I feel obliged to tell you . Do not worry about overdosing on B12– it’s water-soluble . It is not possible . That’s a proven fact
I have been self-injecting for 4years now , and I don’t turn a hair . But I cannot tell you how nervous I was the first time . I was shaking like a leaf .🌿. But it has changed my life. Best of luck 🍀, and very best wishes .
P.S. I hope that I’ve not omitted something important .
Hi wedge wood, thank you for such comprehensive information, very helpful! I saw my GP yesterday but he refused to change the B12 injection to two monthly, he was doing all sorts of other tests to find out what was causing my dizziness, exhaustion and unstable on my feet! I got my three monthly B12 injection on Monday and already I’m beginning to feel better! I’m going to keep a daily diary of how I’m feeling and when I start to get symptoms again, which I will, I will present him with the proof that three monthly is too long between! Thanks for your advice, keep well!
VitaminB injections are incredibly cheap , and cannot be overdosed . I find it so strange that they are not prescribed when the reason for the symptoms is not clear . They are totally harmless , and you know that they alleviate your symptoms for a certain period. That should be proof enough .
Inject once a month. Self inject. Get a set of 5 vials and inject more times.
I first had mine every 3 Months but it wasn’t enough so now I have them every 6 Weeks ask GP to check it out for you, it maybe you need them more frequently
Hi,
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
Do you have any neurological symptoms eg
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, migraine, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc?
Does your GP have a list of all your symptoms, especially any neurological ones?
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.
Link about PN
nhs.uk/conditions/periphera...
Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms
b12deficiency.info/b12-writ...
I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.
Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, referral requests, any other supportive evidence.
GPs can find treatment info in their BNF book Chapter 9 Section 1.2
You could draw your GPs attention to consequences of under treatment.
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.... See Page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Referrals
If neuro symptoms present, have you been referred to
1) a neurologist?
2) a haematologist?
NICE CKS link recommends that GPs seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If GP won't refer you, they could at least contact a local haematologist by letter and ask for advice.
Don't expect better treatment from a specialist, ignorance about B12 deficiency exists among specialists as well as GPs.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
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....
NICE CKS
cks.nice.org.uk/anaemia-b12...
I am not medically trained.
More B12 info in my replies on thread in next link.
healthunlocked.com/pasoc/po...
Hi Sleepbunny, thanks for all the great information, my GP has just refused to change my injections from three to two months so looks as if I’ll be going down the self injecting route! My feeling is that budgets have more to do with how we are treated than what we really need! Hey ho!
Vitamin B 12 ampoules are really cheap . There are other reasons for the reluctance . I’ll leave it at that .
Hi again,
"my GP has just refused to change injections from three monthly to two"
Have you tried writing to the GP?
If you have any neuro symptoms you should be on the following pattern of treatment...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
Even if you have no neurological symptoms, then the BNF allows for B12 jabs to be given every 2 months.
Your GP may not realise that BNF guidance changed a year or so ago. It used to say jabs every 3 months for those without neuro symptoms but it now says every 2 or 3 months for those without neuro symptoms.
BNF
bnf.nice.org.uk/drug/hydrox...
If you write a letter you could mention that GP can find the info in their BNF book Chapter 9 Section 1.2
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Have you considered joining PAS (Pernicious Anaemia Society)?
They can offer support and useful info to pass to GPs.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
There may be a support group close to you.
Hi, my GP has just refused to change injections from three monthly to two so I will be following Wedgewoods advice and self injecting as you do! Take care!
Hi, I would be very careful not to tell him that, it doesn’t sit well with me right enough not being honest with him but it’s almost a game we’re playing just to be able to feel well! I have been very involved with the NHS for the last two years, two emergency bowel ops within a week of each other and although I am so grateful to them for keeping me alive there were many errors made in my aftercare, hence here I am two years on still trying to get well so I’ve learned that I’ve got to do what’s right for me. The NHS budgets are such that doctors aren’t able to do their jobs properly with the financial restrictions on them! Quite sad really! Thanks for your input, take care!
Yes , absolutely right . How many people have been sentenced to permanent disabilities for that reason. ? It’s disgraceful ,scandalous . Even if mistakenly prescribed , no harm is done , no high costs incurred .
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