If you suffering from peripheral neuropathy linked to low b12, can it be in hands and feet and can it be variable week to week? Can it flare during a virus?
Just trying to rule things out. I don’t think I do have a b12 issue but thinking Gp May check (slowly going through various possible causes.)
Also, how long should I avoid b12 before a test or doesn’t that matter?
Yes, I have it in both hands and feet and it is quite variable and it does flare under any number of conditions for me (viruses included).
Others here are more qualified to answer the rest of your post than I am.
Best to you!
Thank you, so you sometimes find your hands are fine or not noticeable and then other times very bad? I’m noticing a link to possibly mild Raynauds too. I do have hypothyroidism which has been a bit under treated recently but that’s because the Gp wondered if the symptoms were due to being slightly over replaced with thyroxine.
I’m going to ask Gp to rule out b12 as an issue. My aunt does have pernicious anaemia though and I’m breastfeeding.
Most of my B12d/PA symptoms vary in intensity. I do know that there is a very strong overlap in symptoms between thyroid issues and B12d/PA and they often occur together (I have both Hashimoto's and PA). If you have any doubts, you would be wise to rule out any B12 issues rather than suffer long term neuropathic issues.
Hi,
Does your GP know that you have a relative with PA? Worth letting them and any specialists you see, know about that.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
There's a lot of information here so you might want to take a few days to read through it.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
If you suspect B12 deficiency, has GP tested for
Pernicious Anaemia?
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.
Coeliac Disease?
UK guidelines below suggest GPs should test anyone with unexplained B12, folate or iron deficiency or with a first degree relative with Coeliac, should be tested for Coeliac.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Exposure to nitrous oxide?
Did you have gas and air mix during labour? Gas and air mix contains nitrous oxide. Nitrous oxide can inactivate the B12 in the body and it can then take a while to build levels of B12 back up.
gov.uk/drug-safety-update/n...
Has GP asked questions about your diet?
If you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with b12 then any B12 deficiency is unlikely to be due to diet and it is more likely that there is an absorption problem in gut eg PA, Coeliac or other possibility.
A vegan or vegetarian diet may be a risk factor for developing B12 deficiency.
There are other possible causes of B12 deficiency eg fish tapeworm infection. See Risk Factors links.
If you're in UK, worth reading the following documents/articles. Cobalamin is the scientific name for B12.
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
BMJ B12 article
Emphasises need to treat patients who are symptomatic for B12 deficiency 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....
In a nutshell, in UK if patient has symptoms of B12 deficiency (with other reasons for symptoms excluded) they should be treated.
If PA is a possibility then worth joining and talking to PAS.
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....
Currently 13 PAS support groups in UK.
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
Does your aunt know about Pernicious Anaemia Society?
B12 Deficiency Info website
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
B12 Deficiency Info blog
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.
Blood Test Results
Have you got blood test results for B12, folate, ferritin or other iron tests and Full Blood Count (FBC) results? There can be useful clues on FBC as to whether B12, folate or iron deficiency are possibilities.
Best advice I ever got was to always get copies of all my blood test results.
There were occasions when I was told all my results were normal/no action needed and when I got copies I found abnormal and borderline results so these days I always get copies of my results.
Access to results/records (England)
nhs.uk/NHSEngland/thenhs/re...
Most UK GP surgeries have online access to a summary of results/records. Details about this should be on your GP surgery website. Look for Patient Access/Online Access/Emis Access.
Normal Range results
It is possible to have severe B12 deficiency with a B12 result that is well within range; it happened to me.
Some people have Functional B12 deficiency where there is plenty of B12 in the blood but it is not getting to where it is needed in the cells of the body.
Blood tests
b12deficiency.info/b12-test...
Results of blood tests used to diagnose B12 deficiency eg serum b12, MMA, Homocysteine and Active B12 (Holotranscobalamin) may be affected if patient has recently had a B12 injection or taken B12 supplements.
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...
It's important to get prompt, adequate treatment if patient has B12 deficiency. Untreated or under treated B12 deficiency may lead to permanent neurological damage including spinal problems.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
Referrals
I'm assuming from your posts that you have neuropathic symptoms.
Have you been referred to a neurologist?
NICE CKS link (up page) suggests that GP should seek advice from a haematologist for patient with B12 deficiency with neuro symptoms.
If you have any gut issues, has GP referred you to a gastro enterologist?
Gastro specialist should be able to spot signs of gut damage due to PA, Coeliac, H pylori etc.
What does GP think has led to your symptoms of peripheral neuropathy?
Peripheral neuropathy and macrocytosis (enlarged red blood cells) are two of the signs GPs look for in a patient with suspected B12 deficiency. However it's possible to have B12 deficiency without either of these symptoms.
Local Guidelines
Some areas of UK are using local guidelines on the treatment of B12 deficiency that have not been updated for years. It can be very difficult to get a diagnosis of B12 deficiency in some parts of UK. May be worth tracking down guidelines for your part of UK and comparing them to 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 has letter templates that people can base their own letters on.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Warnings....
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments where B12 might be discussed.
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...
Help for GPs
1) PAS website has section for health professionals. It is free for them to join PAS as associate members.
pernicious-anaemia-society....
2) PAS website has section with useful leaflets/articles that some on forum pass on to GPs eg
"An Update for Medical Professionals: Diagnosis and Treatment "
Access to PAS members only.
pernicious-anaemia-society....
3) PAS members may be able to arrange for their GPs to talk to PAS, Would need to discuss with PAS first.
I am not medically trained. More B12 info in pinned posts on this forum.
Thanks for all of this; they’re testing b12 and a couple of other things including ferritin when I can get a blood test. They’ve tested me for coeliac more times than I can count; I don’t think that’s an issue. Had an elective section so no gas and air sadly! I do eat a very b12 rich diet and I’m returning to BReastfeeding vitamins which has it in.
My aunt never talks about it at all! I’ll mention it though.
I get results as Im used to following my thyroid results. Now online which is helpful.
My hands and feet have calmed down; I’m increasingly thinking it may be linked to when I’m fighting off a virus and my circulation. Somehow. I’m going to increase exercise now I’m feeling the benefits of extra thyroxine; I’ve been on too little for a few months now as we were testing to see if it was being on slightly too much! So went hypo.
They’ve tested me for coeliac more times than I can count"
Did they do both recommended tests?
1) tTG IgA
2) Total IgA
UK GPs sometimes forget to do the second test.
tTG IgA checks for antibodies to gluten.
Total IgA checks which patients have IgA deficiency. Patients with IgA deficiency need to have alternative tests for Coeliac.
Before you had Coeliac tests, did your GP tell you to eat plenty of gluten in more than one meal per day for several weeks?
One reason for a negative result in tTG IGA test in a patient who has Coeliac is that they were not eating enough gluten before test and therefore not enough antibodies were in blood to register a positive result.
Has GP also excluded other auto immune conditions that could lead to neuropathic symptoms eg diabetes and other possibilities?
Chances of developing PA are increased if a blood relative has it, so hopefully your GP will give you an Intrinsic Factor Antibody test. See link about IFA test in other post.
"My hands and feet have calmed down"
Glad to read that symptoms have improved.
if trying to identify a B12 absorption problem the usual window for stopping supplementation is 3-6 months. Particularly if you have been using high dose (1000mcg +) supplements. Lower dose supplements - 50mcg are unlikely to have any impact on the results
Ah ok I see. I don’t think I have an absorption issue; it was good a few years ago. Unless it can come on? If it’s low b12 I just need to boost it up. It doesn’t sound like b12 is likely to be my issue.
Thank you, I honestly don’t think coeliac is an issue and yes I’ve had frequent diabetes tests which is always really good.
The woman I saw yesterday was a tad dismissive so if I get another “attack” I’m going to go back to the original Gp. He did say that he had to tell me that in around 60 % of cases they don’t get to the bottom of it. I think I need an even keel of thyroid levels and exercise etc and then see how things are.
Hi just to update, my results are normal though I feel ferritin at 65 could be better:
B12 385 (145-569)
Folate 12.9 (3.9-26.8)
The b12 range seems lower than I’ve seen in other places? So not sure what to make of that.
Advice about diarrhoea symptoms please
Symptoms returning?
Query b12 amount & frequency
B12 treatment query
b12 neurological symptoms 
