Hi everyone,
Struggling with my GP as most of you are. I have had 3 monthly B12 Injections for several years and cannot get any GP in my practice to increase them. I have been thinking of getting an active B12 test privately as the NHS only test total. Is this viable please - particularly if I leave it until just before my next jab is due. I know I shouldn't rely on the total B12 result as I have been having the injections but can the active B12 result be of any help please.
Not sure what you will achieve.
you can easily pay for an active b12 test.
Once on injections levels will be high and its not necessary to test.
alot if gps won't be interested on private test results.
it should go on your symptoms not numbers.
At least push for 2 monthly if you have neurological symptoms as GPS only have to look at Nice guidelines and not use their own clinical judgement.
Write and ask.
Letters sent not ignored in the same way and have to be scanned onyour notes .
Have folate vit d iron checked too.
When i look back and remember the hell i went through with my GP , because i coukd not manage on 3 monthly injections , I’m inclined to recommend self-injecting . i can recommend it because it is cheap ( about £1.50 everything included) easy and convenient . Yes , the thought may horrify you, as it did me at the time . . The ignorance of the medical profession regarding P.A is horrifying . I found , after trial and error that i needed to inject weekly to keep symptoms at bay . Now £1.50 a week to save my mental and physical health is incredibly cheap , Yes there was the terrible fear to be got over before i self-injected for the first time ! Now it’s second nature to me for the last 6 years . I will send you the information that you need , so that you can give it some thought . Best wishes
Please take a look at my responses on this post
Scientist, not medic.
In a word, 'No'.
It's not going to tell you anything that Serum B12 doesn't. If you're having regular injections of B12 then it's really not worth doing either test.
My deficiencies (B13 & others) were diagnosed by testing bioaktiv levels. I understand that indicates what your body can absorb vs. the total amount in the bloodstream. It helped me finally get the care I needed.
Thank you everyone who has taken the time and trouble to reply to my question. My problem is that I am not convinced of how much of my symptoms is related to B12 and which to hypothyroidism. My doctor did a cell tissue autoab screen test but it stated that as the parietal cell autoantibodies test was negative intrinsic factor antibodies test was not required. Perhaps my best option is to SI for several months to see if there is any relief for me.
Hi,
"cannot get any GP in my practice to increase them"
Do you have any neurological symptoms?
BNF link below has two patterns of treatment
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
You seem to have been put on a treatment pattern for those without neuro symptoms.
Both patterns allow for maintenance B12 injections to be given every 2 months.
Check symptoms lists below for other neuro symptoms.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Next link mentions symptoms of B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
Symptoms list (from B12 Institute netherlands)
b12-institute.nl/en/symptom...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
If yes to neuro symptoms, has your GP got a list of them?
Have you considered writing GP a letter expressing your concerns?
Should be some help in next link.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion. Keep copies of any letters sent or received.
Are you a PAS member?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Lots of useful info on their website.
Have a look at their leaflets and the page for health professionals.
pernicious-anaemia-society....
pernicious-anaemia-society....
Other UK B12 documents/articles
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines (main points from above document)
pernicious-anaemia-society....
NICE when to refer B12 deficient patient
cks.nice.org.uk/topics/anae...
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 (there are over 40 pages to wade through).
Have you seen the local B12 deficiency guidelines for your area?
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.
Symptoms Diary
Do you keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received? This could be useful evidence of improvement/deterioration in symptoms to show GP/specialist. If your symptoms return or worsen before next injection that could indicate you need more frequent injections.
Some forum members resort to treating themselves if GPs refuse treatment or treatment is inadequate.
I am not medically trained.
Links below are to forum threads where I left detailed replies with lots of B12 info eg causes of B12 deficiency, B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I hope you get the help you need.
What is test for 'active b12' 
Active B12 test results
Active B12 Tests in the United States
Active B12 Test Without Referral
Active B12 test from Medichecks
