Hi all I was diagnosed with B12 deficiency 4 weeks ago and two weeks ago I had an injection and to be told I need to go for the second one in 12 weeks then all should be good does this sound right as looking at all the posts people have a batch and some are on it for life
Thanks J
Hi.
Are you in UK?
It's helpful to know which country a person is in as patterns of B12 treatment vary from country to country.
Has your doctor explained what they think is causing the B12 deficiency as the cause can affect the level of treatment given.
Have you has tests for PA (Pernicious Anaemia)?
Flowchart below outlines recommended UK diagnostic process for PA.
stichtingb12tekort.nl/weten...
UK b12 treatment info
1) BNF (British National Formulary) Chapter 9 Section 1.2
bnf.nice.org.uk/drug/hydrox...
cks.nice.org.uk/anaemia-b12...
In UK, people with B12 deficiency where there are neurological symptoms are supposed to get more intensive treatment.
2) BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Treatment info is about a quarter through above document.
Risk factors for PA (Pernicious Anaemia) and B12 deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper (UK author)
Martyn Hooper is 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 book about B12 deficiency with lots of case studies.
I am not medically trained just someone who has struggled to get a diagnosis.
Hi thanks for the reply I am in the UK and the GP has just said it was low and no more details just that the Injections 3 monthly are the only way forward
Thanks J
"the GP has just said it was low"
I'm surprised that GP apparently has not carried out tests for PA (Pernicious Anaemia).
Might be worth getting copies of recent blood tests to see if Intrinsic Factor Antibody (IFA) test was carried out. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative (called Antibody Negative Pernicious Anaemia).
I learnt to always get copies of all my blood test results after being told everything was normal and then finding abnormal/borderline results on the copies.
In relation to B12, I look at B12 , folate, ferritin and full blood count (FBC). There can be useful clues on FBC as to whether someoen has B12 deficiency, folate deficiency or iron deficiency.
b12deficiency.info/what-to-...
b12deficiency.info/b12-test...
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
patient.info/doctor/folate-...
If you get copies of serum B12 result, have a close look at any notes next to B12 result. As it was low, there may be a note from laboratory that carried out test for GP to consider ordering an IFA test.
Access to Results/Records
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/p...
nhs.uk/chq/Pages/2635.aspx?...
"two weeks ago I had an injection and to be told I need to go for the second one in 12 weeks then all should be good "
I think it's important to know what GP thinks is causing low B12. Some causes of B12 deficiency require lifelong B12 injections eg PA
Is GP proposing to give you just 2 injections in total?
Does he/she think it is diet?
If you eat plenty of B12 rich foods eg dairy, eggs, meat, fish, shellfish then a dietary cause becomes less likely and more likely that there is an absorption problem. Vegans and vegetarians are in a risk group for developing B12 deficiency.
Dietary deficiency is often treated with low dose oral cyanocobalamin ( a type of B12) tablets but GP may prescribe injections of hydroxycobalamin (another type of B12).
For a person with absorption problems eg PA, injections are the recommended treatment as far as I know.
UK B12 Treatment Info
The pattern of treatment you have been given seems to be different to what is in BNF and BSH Cobalamin and Folate Guidelines. See links below.
BNF (British national Formulary) Chapter 9 Section 1.2
bnf.nice.org.uk/drug/hydrox...
cks.nice.org.uk/anaemia-b12...
BSH Cobalamin and Folate Guidelines
Treatment info about a quarter through document. I'd recommend reading whole document. Some UK Gps may not be aware of this document.
b-s-h.org.uk/guidelines/gui...
It's vital to get correct level of treatment for B12 deficiency or further deterioration can occur including the possibility of permanent neurological problems.
Do you have any neurological symptoms eg tinnitus, pins and needles, tingling, balance issues, memory problems plus many other possible neuro symptoms?
See lists of B12 Deficiency Symptoms below
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
If yes to neurological symptoms.......
In UK, BNF/BSH guidelines recommend loading injections of B12 every other day for as long as symptoms continue to get better (this could mean loading injections for several weeks even months) then injections every two months.
I would suggest reading up about B12 and being as well-informed as possible. My experience in UK has been that some doctors are not as well-informed about B12 deficiency as they could be.
Unhappy with treatment?
Link about writing letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and treatment.
PAS (Pernicious Anaemia Society)
If you think PA is a possibility, it may be worth joining PAS.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left
B12 blogs
Martyn Hooper's blog about PA and B12 issues
There is also an interesting blog about B12 issues on "B12 deficiency Info" website.
B12 deficiency and injection frequency.
GP stopped B12 injections
B12 injections frequency
B12 injections stopped by GP.
b12 injection and digestion problems
