Hi, I’m new on here and hoped for some advice. I’ve had low levels of vitamin B12 for years and I’m really struggling to get my GP to help. Each time my blood is tested it comes back low (latest result 148 ref range 200- 883). My GP then always tests my parietal cells and intrinsic factor which always come back as normal. Then I’m given a short dose of oral supplements and sent away. Each time it’s always me that requests follow up testing and we go through the same cycle. The latest is after taking 50ug/ day for 80 days back in May my levels are still low. My GP has prescribed more oral tablets- surely 50ug/ day for 80 days should have increased my levels if I’m absorbing it? I’m not vegan and eat a varied diet- I don’t understand how I can be deficient due to my diet. Can anyone help?!
B12 deficiency : Hi, I’m new on here... - Pernicious Anaemi...
B12 deficiency
I think you need to draw your GPs attention to the limitations of the IF and PCA antibodies as diagnostic tools, and to the fact that PA isn't the only possible absorption problem that will lead to a B12 deficiency.
The IFA test is not very sensitive and gives false negatives 40-60% of the time - whether its 40 or 60% depends on the exact test method ... so basically using it to rule out PA as a cause of a B12 deficiency isn't good diagnostic technique. There isn't a good test for PA which is why the BCSH (British Committee for Standards in Haematology) refers to 'IFA negative PA' in its standards for the diagnosis and treatment of cobalamin and folate deficiencies'. Assuming you are UK based your GP can access the guidelines through the BNF. They also give a protocol for diagnosing and treating that would definitely put your case into the category of needing life-long injections.
You can also access the standards here.
Your low B12 and the fact that it's consistently dropping despite supplementation could very well indicate an absorption problem but intrinsic factor test is notoriously inaccurate. Therefore, symptoms are paramount, especially neurological symptoms, which need to be treated as BNF (GP will have a copy) without delay with Hydroxocobalamin, 'every other day until no further improvement', to prevent permanent damage.
Two experts in the field, Sally Pacholok, "Could it Be B12?" and Dr Joseph Chandy, have been studying vitamin B deficiency for years and describe how under diagnosis of B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ he says. It should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. But two problems can affect this.'
‘As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’
‘Second, those with pernicious anaemia (*known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’
You could try writing to your GP with latest BMJ research document summary (full document behind a paywall) below and make another appointment, taking someone close with you for extra support:
Bottom of page 2:
"What are the clinical features of vitamin B12 deficiency?
The clinical manifestations of vitamin B12 deficiency (fig 2⇓),3 5-7 9 13 represent the effects of depletion on multiple systems and vary greatly in severity. The clinical manifestations are heterogeneous but can also be different depending on the degree and duration of deficiency.
Mild deficiency manifests as fatigue and anaemia, with indices suggesting B12 deficiency but an absence of neurological features.
Moderate deficiency may include an obvious macrocytic anaemia with, for example, glossitis and some mild or subtle neurological features, such as distal sensory impairment.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features, and risk of cardiomyopathy. However, it is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay.4 13 "
b12deficiency.info/b12-writ...
pernicious-anaemia-society....
The Dutch links on the r/h side of this forum explain more about testing, B12 misconceptions and the importance of early and adequate treatment. it might also be a good idea to join the PAS - they have leaflets for professionals and may be of support in getting the correct treatment.
Many of us on the forum self inject if you eventually decide this is the best course.
stichtingb12tekort.nl/weten...
Good luck for better treatment Ljscott
Thanks very much to both of you for replying. I’ve been having weird off and on symptoms for about 5 years- tiredness and shortness of breath and chest pain which was diagnosed as asthma but never really confirmed by spirometry and reliever inhalers don’t help. Occasional dizziness and heart palpitations- sent to ENT and cardiology- no findings. Increasing anxiety and being crabbit (Scottish word for angry!) without any real cause. I also get weird muscle twitching in my arms that I’ve not reported to my GP as I didn’t see the connection until I started reading this forum today. My GP did send me to haematology when we first discovered the low B12 but no IFA reaction and they said my contraceptive pill was causing a false low level and advised not to treat. Do you know if this is a thing? Back then I wasn’t having any major symptoms apart from my hair falling out which was what sent me to get bloods done in the first place. I kind of put all my symptoms down to stress (despite not feeling actively stressed about anything other than feeling rubbish). I’ve got a phone appointment with my GP tomorrow so I’ll mention all these things. Thanks for the advice.
the pill can interfere with B12 absorption but I've not heard of it as giving a false low. Interpreting levels in patients that are pregnant where you can get false lows but that is completely different.
Fatigue, dizziness, difficulty breathing, anxiety and crabbit (like this word 🙂) are all neuro/psychiatric symptoms. I noticed I became more easily stressed until optimally treated.
Re. hair falling out, there is a film on B12 def. link above re. Dr Chandy treating a patient whose hair grew back after treatment with B12 injections. Mine also eventually thickened up again after treatment 🤗
Drugs that deplete B12:
pennstatehershey.adam.com/c...
FIngers crossed for tomorrow🤞
You almost certainly don’t have Pernicious Anaemia. Not because of your IF antibody test, but because of the Parietal Cell antibodies being negative.
However, that doesn’t mean you don’t have some other absorption problem. You should get your doc to follow this NHS protocol...
Hi,
Some b12 links for you
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member)
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Lots of useful B12 info in this link above.
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
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
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
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.
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....
B12 Deficiency Info website
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
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-...
Coeliac Disease
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done. Total IgA test shows which patients have IgA deficiency (an immunoglobulin). People with IgA deficiency cannot make the antibodies that tTG IgA test checks for and will need other tests for Coeliac disease.
NICE guidelines Coeliac Disease (2015 version) recommends that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease. Have you been tested?
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Have you been tested for H Pylori infection?
patient.info/health/dyspeps...
Tested for internal parasites eg fish tapeworm?
One sign of potential fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count result.
Any surgery involving nitrous oxide as anaesthesia/pain relief?
Nitrous Oxide
gov.uk/drug-safety-update/n...
Best piece of advice I got was to always get copies of all blood test results. Some forum members get copies of medical records.
Access to medical records (Scotland).
nhsinform.scot/care-support...
nhsinform.scot/publications...
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, available 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...
"got a phone appointment with my GP tomorrow so I’ll mention all these things"
My personal experience is that sometimes things said over phone or face to face get ignored. My preference is to put queries about treatment into short, polite letter to GP with symptoms, relevant family history, extracts from UK B12 documents etc. My understanding is that in UK letters to Gps are filed with medical records soa re a record of issues raised.
"GP then always tests my parietal cells and intrinsic factor which always come back as normal"
Some people with PA have negative/normal range test results on IFA test. See BSH guidelines link in documents list in this post.
Some people with PA have negative/normal range result on PCA test. See section on what test result means in this next link.
labtestsonline.org/tests/pa...
I think that there are a small number of people with PA who will test negative on both IFA and PCA tests.
I am not medically trained.
Success! My GP has prescribed injections starting with 3 times a week loading dose for 2 weeks and follow up injections every 3 months. Thanks so much everyone for your advice.
As mentioned in the Guidelines - with neurological symptoms - treatment should continue until symptoms cease to improve. Moving onto 3 monthly may not be adequate. Take a look at Polaris's reply above. Hope all goes well.
I would also check VitD as this too can be low along with B12.
Hi,
Glad to hear GP has started injections.
Agree with Marz 's comment about neuro symptoms.
UK recommended treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then jab every 2 months.
UK B12 treatment info in BSH, BNF, NICE CKS links
Do you have any neuro symptoms eg tingling, pins and needles, tremors, memory problems, tinnitus, balance issues and others?
Link about writing to GP about Under treatment of B12 deficiency with Neuro symptoms
b12deficiency.info/b12-writ...
"but no IFA reaction "
Is your GP aware that it is possible to have Antibody Negative PA?
See flowchart below which outlines when PA and Antibody Negative PA can be diagnosed in UK.
Lovely, but also try to find the cause of your B12 malabsorption. A list of causes is here onlinelibrary.wiley.com/doi...
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