I had a B12 deficiency 6 years ago and had 5 injections, I had my blood tested once after this and my levels had increased but I was never tested again.
I have been really down lately and my new partner suggest I ask for my blood to be checked by the GP. My results came back as 103!
How low is this? Should my GP be trying to find out why my body can't absorb B12 I'm PA negative!
Any advice is there a specialist on the country I'm happy to go private?
Many thanks
Hi Chris,
Are you in UK?
Should my GP be trying to find out why my body can't absorb B12 ?
I hope your GP will try to find out. Have they excluded diet as a possible cause? Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy and eggs?
Risk factors for PA and B12 deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Have you ever been tested for Coeliac disease?
coeliac.org.uk/coeliac-dise...
nice.org.uk/guidance/ng20/c...
This can lead to B12 deficiency because it can affect the gut and cause absorption problems.
"I'm PA negative!"
It is still possible to have PA even if IFA (Intrinsic Factor Antibody) test is negative or normal range. This is called Antibody Negative Pernicious Anaemia.
Antibody Negative Pernicious Anaemia is mentioned in next two links.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA test and it outlines when PA and Antibody Negative PA can be diagnosed in UK.
My results came back as 103!
Do you mean 103 ng/L? Do you have the reference range?
What treatment have you been offered?
Details of UK b12 treatment can be found in
1) BSH Cobalamin and Folate Guidelines (link above), about a quarter through guidelines.
2) BNF British National Formulary Chapter 9 Section 1.2
UK GPs will probably have a copy of BNF on their desk.
bnf.nice.org.uk/drug/hydrox...
cks.nice.org.uk/anaemia-b12...
B12 deficiency due to diet it sometimes treated with B12 tables but as far as I know b12 deficiency due to absorption problems is supposed to be treated with B12 jabs in UK.
My understanding is that in UK, people who are symptomatic for B12 deficiency without neurological symptoms should have 6 loading jabs over 2 weeks followed by a jab every 3 months.
My understanding is that people with B12 deficiency where there are neuro symptoms are supposed to have a loading jab every other day for as long as symptoms continue to get better then it's a jab every 2 months. If neuro symptoms are present, I think this more intensive regime is supposed to be followed whatever the cause of the B12 deficiency.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.
BMJ b12 article
Symptoms of B12 Deficiency
pernicious-anaemia-society.... see PAS Checklist on right of page
b12deficiency.info/signs-an...
Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, memory problems, balance issues?
In UK, people with B12 deficiency with neuro symptoms are supposed to have more intensive b12 treatment. See BSH Cobalamin and Folate Guidelines and BNF link for more info. Untreated or under treated B12 deficiency could lead to further deterioration including spinal problems.
Blood test results
I learnt to get copies of all my blood test results after being told everything was normal and then finding abnormal and borderline results on the copies. In relation to B12, I look particularly at B12, folate , ferritin and FBC, full blood count ( also known as Complete blood count in USA).
Links about blood tests
b12deficiency.info/what-to-...
b12deficiency.info/b12-test...
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
patient.info/doctor/folate-...
B12 blogs (UK)
Martyn Hooper's blog about PA and B12 issues
B12 Deficiency Info blog
Unhappy with aspects of treatment?
Link about writing letters to GP
b12deficiency.info/b12-writ...
Point 1 is about under treatment of b12 deficiency with neuro symptoms.
CAB
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
I am not medically trained.
Hi
I really appreciate the quick response to my post.
I'm very worried at the moment.
My Serum ferritin level is 104 NG/l (25-350)
Heaomoglobin level A1cbis 36 mmol/mol
My serum folate level is 4.7 NG/m
My diet is very good, I was teased for Ceolic disease 5 years ago and I was negative. My stools are alway lose and food doesn't seem to stay in me for very long, I wonder if this part of the problem?
I've noticed my eyesight has become worse over lay month, I have been very depressed and I have no reason to also my legs really hurt if I've been sat on the sofa too long, really hurts when I stand up and try and walk!
My memory has become very poor and I have no energy, I seem to have gone down fast in last 6 weeks.
I am normally very fit I do Judo for GB at Veterans levels but I'm as strong and as fit as guys in their early 20s.
My GP has started me on a course of 5 injections
If appreciate any thoughts on my condition..
Thanks
Chris
chrisAndrews hbA1c is actually a protein that acts as a good marker for diabetes - your result is okay.
reality is that your GP should have put you on maintenance doses after loading shots unless it was clear that your problem wasn't related to absorption. In the absence of proof of another cause - PA should be assumed as a negative result for IFA is a long way from proving that you don't have PA - though a positive is good evidence that you do have PA
Hi again,
It's helpful to know which country you are in as patterns of B12 treatment vary from country to country, different types of b12 are used in different countries.
"I was teased for Ceolic disease 5 years ago and I was negative"
If you're in UK, did GP do both recommended first line tests for Coeliac disease? My experience is that in UK, GPs don't always do the second test although it is recommended in NICE guidelines. it's important to do both tests as people with IgA deficiency will test negative on tTG IgA test and will need alternative tests for Coeliac disease.
1) tTG IgA test
2) Total Iga test
folate level is 4.7 NG/m
Your folate level seems quite low but it's difficult to judge without a reference range. Does GP think you need folate treatment?
Might be worth getting hold of copies of all your blood test results as ref range should be on that.
Access to medical records (England)
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/p...
nhs.uk/chq/Pages/2635.aspx?...
Your ferritin level seems reasonable.
Do you have results for a full blood count (FBC)? This can have useful clues as to whether iron deficiency, folate deficiency or B12 deficiency are possibilities.
"GP has started me on a course of 5 injections"
If you're in UK, the GP does not appear to be following BNF regime. See "Details of UK b12 treatment" in above post if you're in UK. It's vital that for people with b12 deficiency with neuro symptoms to get correct treatment regime.
PAS (Pernicious Anaemia Society)
If you suspect PA is a possibility, might be worth joining and talking to PAS. It is possible to still have PA even if IFA test is negative, PAS can point you to more info on this.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone
"My stools are alway lose and food doesn't seem to stay in me for very long"
Some people with b12 deficiency have low acidity in stomach. Symptoms of low and high stomach acidity produce similar symptoms.
drmyhill.co.uk/wiki/hypochl...
Have you ever had a test for H Pylori infection?
I am not medically trained.
Eaoz, what exactly did you mean by gut surgery? if it affects the ileum it is likely to be a permanent problem - did you mean a gut infection like h pylori?
B12 too high..
How low is this b12 level?
B12 defiency
B12 loading dose Questions
B12/hypothyroidism 
