Following a spell in hospital pneumonia - something was found in my stomach. Intrinsic factor positive but B12 450 Folate 6.2. On coming home IF was retested and came back negative. Tomorrow I have an endoscopy as the suggestion is auto immune gastric atrophy.
In short might it still mean I can have B12 injections ? as I have many neurological symptoms, family history, thyroid problems etc... even though levels are normal??? Help needed in this minefield of the unknown!!! Thanks in advance xx
Hi,
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
The IFA test is not always reliable. I believe Martyn Hooper, chair of PAS had negative results on IFA test more than once before testing positive.
"the suggestion is auto immune gastric atrophy. "
Another name for PA is Autoimmune Metaplastic Atrophic Gastritis.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
There are currently 15 groups in UK.
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 Deficiency Info website
Other B12 info that may be of interest.....
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...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
If short of time to read things, I suggest at least reading BSH document.
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
BNF Children
bnfc.nice.org.uk/drug/hydro...
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA (Pernicious Anaemia)
B12 Deficiency Info blog
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
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 does not show updated BNF info.
"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Also plan to read ""Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD.
May be copies of above books available from local library service.
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-...
Iron Studies
labtestsonline.org.uk/tests...
Have you been tested for Coeliac Disease?
If you were tested in past, were both recommended tests done?
1) tTG IgA
2) Total IgA
Did GP also tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?
NICE guidelines Coeliac Disease (UK document)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Tested for H Pylori infection?
patient.info/digestive-heal...
There are other causes of b12 deficiency eg
exposure to nitrous oxide
gov.uk/drug-safety-update/n...
fish tapeworm infection plus others.
See links to b12 websites for more possible causes.
Best piece of advice I ever got...
was to always get copies of all my blood test results.
Sometimes people are told everything is normal/no action despite some blood results being abnormal or borderline.
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/h...
Some UK surgeries have online access to a summary of results etc. Details will be on GP surgery website.
Vital to get adequate treatment if B12 deficient as under treatment can lead to further deterioration including permanent neurological damage.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
"I have many neurological symptoms"
Have you been referred to
1) A neurologist?
2) A haematologist? See NICE CKS link up page.
In UK, people with B12 deficiency with neuro symptoms are supposed to get more intensive treatment.
UK recommended treatment for B12 deficiency without neuro symptoms is..
6 B12 loading jabs followed by a jab every 2 or 3 months
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 then a jab every 2 months.
Unfortunately, some UK Gps and specialists seem unaware that the treatment for those with neuro symptoms is more intensive. Many on this forum struggle to get the recommended level of treatment and even the recommended level is not enough for some.
Doctors in UK can find info on treatment in BNF book Chapter 9 Section 1.2
BNF info is also online.
I know from personal experience that it is possible to have severe B12 deficiency with an in range B12 result.
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....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Endoscopy
B12 is absorbed in the part of the gut called the terminal ileum. Damage to the terminal ileum will affect B12 absorption. Worth asking specialist if endoscopy will look at terminal ileum. Typical gastroscopy and colonoscopy will not examine terminal ileum.
Link about endoscopy
Warnings....
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
nhs.uk/common-health-questi...
3) In UK, some areas are using local guidelines for treatment of B12 deficiency. Some of these local guidelines are out of date and do not match what is in national guidelines.
I suggest tracking down local guidelines for your area of UK and comparing them with national guidelines.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of b12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range b12 result.
Link above has lots of useful b12 info plus letter templates people can base own letters on.
I feel putting queries about treatment/diagnosis and referral requests is more effective in a polite, brief as possible letter to GP/specialist. In UK, letters to GP are supposed to be filed with medical notes so less likely to be ignored in my opinion.
Letters could contain symptoms list, test results, personal and family medical history, extracts from UK medical documents etc
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Have heard mixed reviews about above charity.
MPs
If you feel that you are not getting recommended level of treatment, may be worth speaking to local MP.
Help for GPs
1) PAS website has section for health professionals
pernicious-anaemia-society....
2) PAS website has section with useful leaflets which some on forum pass to GPs eg "An Update for Medical Professionals: Diagnosis and Treatment"
pernicious-anaemia-society....
You would need to be a PAS member to access these leaflets.
I am not medically trained. More B12 info in pinned posts.
I hope everything goes okay with your endoscopy. I hope you have someone supportive who can go with you to appointments.
Thank you so much! I will get reading!!
if you have neurological symptoms then you should definitely be on B12 injections.
The IFAB test is extremely insensitive so it gives false negatives about 50% of the time . However, it rarely gives false positives - so your GP should really be acting on the basis of the positive you originally had in the hospital, rather than withdrawing them on the basis of an inconclusive result from a second result.
PA is actually an auto-immune gastritis that attacks the mechanism you use to absorb B12 from your food. This leads to a particular form of anaemia, which may explain some symptoms but doesn't explain all. B12 is used in your cells for a lot of different processes - the one that produces healthy red cell is just one of these many processes. The mechanisms that cause neuropathy are not related to this particular process.
Serum B12 is a very difficult test to interpret - there is a huge normal range ... and its logically flawed to assume that means a particular individual is okay because their results are in that range. What happens with B12 is that people have a natural point that is right for them and they maintain serum B12 at that level by drawing on the stores in their liver.
If you have an absorption problem however, those stores don't get replenished and, because the mechanism for releasing them relies upon the same mechanism you use to absorb B12, that doesn't work efficiently either and levels will start to fall. That means that serum B12 is a good test for spotting a B12 absorption if you are monitoring for a downward trend over time - so you need at least 2 tests (prior to first injection) to identify an absorption problem.
Whilst the vast majority of people are okay at '450' you were probably one of the people whose B12 naturally sat at a higher point.
Testing serum B12 after loading shots is problematic as the loading shot introduces at least one factor that means the normal range doesn't apply - it raises your B12 levels well above the normal range for them to then fall over time. It also introduces a factor that seems to affect the efficiency with which B12 passes from blood to the cells where it is used, which can lead to a functional B12 deficiency in some patients. The standards produced by the British Council for Standards in Haematology does not recommend testing after treatment has started unless there is a reason to believe that the patient isn't following treatment.
This is a link to the BCSH standards
B12 and PA
B12 (348) with symptoms? Could it be?
B12 results fine, but symptoms persist. Could I still be deficient? 
Could b12 deficiency be my problem? 
