Help at my wits end now.

[Liz061254]

How often can you have B12 injections from GP surgery as I find my 12 weekly one does nothing for me I’m a 64 yr old female with Pericious Anaemia and malabsorption problems due to surgeries .

[deniseinmilden]

Probably not often enough so worth considering self injecting.

[Gambit62 Administrator]

if you have neurologocial symptoms the BCSH protocol would be maintenance doses every 2 months. Some GPs will agree to more frequent maintenance doses and some will agree to allow people to have phials to allow them to self inject more frequently - however these are the exception rather than the rule.

The MHRA have licenced cobalamin to be used for injection with a frequency of 8 weeks. Many GPs mistakenly think this means that more frequent injections would be dangerous and so will refuse to inject more frequently. The reality is that this is the licence that has been requested by suppliers and although it is safe - is a long way from meaning that more frequent is a problem.

Many will also feel that they cannot do it more frequently than the 2 months specified in guidelines. However, NICE is on record as saying that guidelines and guidelines and GPs should really be using their professional judgement to determine frequency

[Liz061254 in reply to Gambit62]

I’m only getting my shot every 12 weeks but feel terrible way before my 12 eeek period is up I’m on iron supplement every day .

[Gambit62 Administrator in reply to Liz061254]

Have you spoken to your GP at all? If you have what was their response.

There are other options - such as trying supplementation (eg high dose oral/sublingual, nasal sprays or even skin patches) though that doesn't work for everyone. These can be sourced easily as vitamin supplements. It is also possible to obtain injectable B12 eg from on-line pharmacies in Germany where it isn't a prescription only medication.

[Liz061254 in reply to Gambit62]

No not yet as only joined the surgery 1 year ago after moving house to a new area but going to make an appointment as I can’t ignore this I’m a full time carer so need myself sorted out for both our sakes .

[Sleepybunny]

Hi,

"How often can you have B12 injections from GP surgery "

1) UK recommended treatment for non- dietary B12 deficiency without neuro symptoms is...

6 B12 loading jabs followed by a B12 jab every 3 months

2) UK recommended treatment for B12 deficiency WITH neuro symptoms (any cause of B12 deficiency) is...

A B12 loading jab every other day for as long as symptoms continue to improve then a B12 jab every 2 months

Do you have neuro symptoms now or did you have them at diagnosis?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

If yes to neuro symptoms then my understanding is that you should be on second treatment pattern. Sadly some UK GPs are unaware that B12 treatment for those with neuro symptoms is more intensive.

UK B12 treatment info

If you're in UK, I suggest reading all of the following.....

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

UK GPs will all have access to BNF. They will probably have a copy of BNF (a slim book) on their desk or bookshelf. B12 treatment info is in Chapter 9 Section 1.2 of BNF.

NICE CKS

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

Have you considered joining and talking to the Pernicious Anaemia Society?

They can offer support and info about PA. In some cases they can intervene directly on behalf of PAS members. Membership costs about £20 for a year's basic membership.

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left.

PAS office opening hours

pernicious-anaemia-society....

It's best to phone.

PAS support groups in UK

pernicious-anaemia-society....

There are stories on Martyn Hooper's blog about how PAS has supported PAS members.

martynhooper.com/2018/05/08...

martynhooper.com/2017/06/24...

B12 Deficiency Info blog

b12deficiency.info/blog/

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.

hdapatientcaretrust.com/

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 is up to date with UK b12 guidelines.

"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.

I am not medically trained.

Good luck with getting the treatment you need. Some forum members resort to self treatment if all else fails.

[Liz061254]

Thank you for all your info very informative. I do have lots of neuro symptoms as this has been ongoing for over 12 years I really need to get myself sorted out seriously this time.

[wedgewood]

I also have PA -Getting a diagnosis was very difficult , and I had to see a private doctor to get the tests. I sympathise with you on this , because I have been through the same . 3 monthly injections were useless to me and I was turned down for 2 monthly even though I was dizzy , confused , and my feet were numb ( ideopathic I was told ) . After several months of trying patches , sublingual lozenges and mouth and nose sprays and just getting worse , I decided to self-inject and it has changed my life . It always amazes me to read that some people benefit from patches , sub-lingual and sprays . You could try them , but they are not cheap . For me self-injection is the cheapest and most effective method for PA patients to get the B12 they need . If you buy in bulk 100ampoules need not cost more than €50.00 . Needles and syringes included , an injection will cost just over £1.00 . Injection takes 5 minutes from start to finish .( I’ve timed it!) You cannot overdose . My doctor said that B12 could be toxic , which is not true . I’ve been injecting once a week for almost 3 years , and am so pleased that I did . I’m sure that would be in a care-home by now if I hadn’t . I also take a folic acid tablet daily and eat well . Some PA patients do get extra injections , but many cannot . I wish you all the best in getting them . But it will be difficult. Also try patches etc . Good luck ! 🍀

[Liz061254]

Thank you think if I don’t get them from GP I’ll self inject as this needs sorting out as like you were I’m feeling really crap and it’s really getting me down .