Hi, I am new to the site and was diagnosed with B12 deficiency (level was 122mg) in March this year. Was told by GP I had the deficiency, another blood test was done to see if body absorbs it which took 6 weeks. One week later I woke up and could not stand, my legs just gave way. I am now walking with a rollator as a stick was not stable due to my ataxia. I also suffered severe headaches. My GP would only give me the initial 6 shots every other day for 2 weeks. Sent them an email re NICE guidelines re continuing injections until no improvement but they have refused. Seeing them at 10:30 today for reason. I am quite happy to purchase the injections of someone could kindly advise me what to buy and where from? I just need to try, as struggling, as help greatly appreciated. Thank you in advance
Help: Hi, I am new to the site and was... - Pernicious Anaemi...
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Hi,
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
Think PAS office is open this morning (Tues).
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Blog post about how PAS can support those seeking PA diagnosis.
martynhooper.com/2017/06/24...
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.
UK B12 documents
You could print these off and take them with you if in UK.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Has your GP followed this process?
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
BNF advice on B12 treatment has been changed recently. Your GP may not know.
pernicious-anaemia-society....
NICE CKS
cks.nice.org.uk/anaemia-b12...
UK local guidelines
Some parts of UK are using outdated local guidelines on B12 deficiency that do not reflect recent national guidelines.
Might be worth tracking down guidelines for your area of UK and comparing them with national guidelines. It might explain why your GP has only given you one set of loading doses.
I'll add more to this post as I think of it so keep checking back.
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...
"another blood test was done to see if body absorbs it which took 6 weeks"
Have you been tested for PA?
In UK this would be an Intrinsic factor antibody test (IFA). IFA test is not always reliable and it's still possible to have PA even if IFA result negative ( called Antibody Negative PA).
Some countries use a PCA (Parietal Cell Antibody) test but this is not recommended in UK as a diagnostic test for PA.
About 50% of people with PA will have a negative result in IFA test.
labtestsonline.org/tests/in...
About 10% of people with PA will have a negative result in PCA test.
labtestsonline.org/tests/pa...
Getting a diagnosis of PA can sadly take years even decades....so I strongly recommend seeking support from PAS if you suspect PA.
Have you been tested for Coeliac?
UK guidelines suggest testing anyone with unexplained B12, folate or iron deficiency for Coeliac. If you get tested, make sure GPs do both recommended tests below as often only the tTG IgA is done.
1) tTG IgA
2) Total IgA
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Coeliac disease can lead to ataxia in some cases.
coeliac.org.uk/coeliac-dise...
Coeliac disease can sometimes present purely with neurological symptoms rather than gut symptoms and can be very difficult to diagnose if this happens.
Ever tested for 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? One potential sign of fish tapeworm infection is a rise in eosinophils (type of white blood cell). Eosinophil results can be found on Full Blood Count results.
Giardia lamblia is another parasite that can lead to B12 deficiency.
Diet?
Do you eat plenty of B12 rich food eg fish, meat, shellfish, dairy, eggs, foods fortified with B12? A vegetarian or vegan diet can be a risk factor for developing B12 deficiency.
If yes to B12 rich diet then it becomes more likely that there is an absorption problem in gut eg PA, Coeliac, H Pylori plus other possibilities.
UK B12 Blogs
May be stories on these that are relevant to you.
Martyn Hooper's blog about PA
B12 Deficiency Info blog
More B12 websites
B12 Deficiency Info website
B12d.org runs support meetings near Durham, UK
B12 awareness (US website)
Stichting B12 Tekort (Dutch B12 website with English articles)
stichtingb12tekort.nl/weten...
Blood Results
Best advice I ever got was to always get copie sof all my blood test results. I was told more than once that everything was normal and it wasn't when I got the copies.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
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-...
Important to treat any co-existing B12 deficiency if receiving folate treatment. See Management section in above link.
Iron Studies
labtestsonline.org.uk/tests...
With neurological symptoms eg ataxia I do not understand why GP won't give you more than one set of loading doses. May be worth pointing out to them the potential consequences.
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
Have you been referred to
1) A neurologist?
There can be many causes of neuro symptoms including ataxia so important to get other possibilities ruled out.
2) A haematologist?
NICE CKS link suggests GPs should seek advice from a haematologist for those with B12 deficiency with neuro symptoms. Has your GP done this?
3) A gastro-enterologist if you have gut symptoms?
A gastro specialist hopefully would be able to spot any gut damage due to PA, Coeliac, H pylori etc.
If GP hasn't requested any referrals then you could always request a referral in a brief, polite letter to GP along with any evidence that supports request. GPs do not have to agree to a referral request though.
There is always the hope that a specialist will know more about B12 deficiency than GP but don't be surprised if they don't.There can be ignorance about B12 deficiency among some doctors and other health professionals so best to be well prepared for any appointments.
Do you have anyone supportive who can go with you to appointments that may be challenging? My feeling is that doctors are sometimes kinder if a witness is present.
"quite happy to purchase the injections of someone could kindly advise me what to buy and where from"
There are many posts on this forum from people who self inject. I think wedgewood has posted about this in the past.
More B12 info in pinned posts on this forum.
I am not medically trained.
Thank you for that information I will look into it later today .
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