Hi guys
Total newbie here- diagnosed this week with b12 level 164 & folate below 2.
2 questions..,
First- is it worth trying to change diet to eat more b12 foods- eggs & cheese in my case as im not much of a meat eater- as it seems that nothing can help the fact that my stomach lining wont absorb b12 naturally?
Second- ive been given folic acid tablets too by my doc but ive seen conflicting comments on here about that- saying it should NOT be taken??
Any advice happily received!
a) have you been diagnosed as B12 deficient or with a B12 absorption problem?
b) what treatment are you receiving for the B12 deficiency - 50mcg cyanocobalamin or injections.
If you have an absorption problem (seems likely even if you aren't a great meat eater and if you have digestion problems) then changing your diet isn't going to help - you'd need to be eating huge amounts of cheese/eggs to stand any chance of counteracting the absorption problem - about 100x the normal amount.
If you are B12 deficient then its best to get your B12 levels up before starting the folic acid. It is extremely rare - and I do mean extremely rare - but supplementing high dose folic acid before correcting a B12 deficiency has resulted in irreversible neurological problems in some individuals.
Thanks Gambit
Ive been told probably absorption issues- so what you say makes sense.
And ive been given b12 injections- 1 a week for 4 weeks then 1 a month for 3 mths then told prob qtrly for life?
And 5 mg of folic acid- plus 150 mg ranitidine twice daily ( i think this one bacause ive been literally vomiting daily for the last month - gastritis? - which prompted the blood test which found the b12 levels low)
Look also at newly developed gluten and/or dairy intolerance. Cheese would make matters worse.
Have they tested your stomach acid? Is it too alkaline? This can cause the same heartburn symptoms as too acidic.
Have you been tested for heliobacter pylori infection?
Have they done an endoscopy to see if anything more sinister like cancer is going on.
The treatment regime that you have been put on is not the standard one and there is a chance that this means that your Dr is one of the very few who has a true idea of and understanding about this condition. (Or it means they don't have even the first clue which is frequently the case)!.
I'm not convinced that the standard protocol is the best way to correct a deficiency and, if given the chance to have my treatment again I would choose to try your protocol, so I suggest that you go with what they are suggesting for now and closely monitor plus record your symptoms. If you don't get any improvement then please come back to us and we can help you get more frequent treatment.
I do strongly suggest you ask to have your potassium and magnesium checked as these are needed for the B12 and folate to work properly and they will have been lost as you were being sick.
It would be good to get your iron levels checked at the same time for the same reason and because if you have an absorbtion problem, especially if it stems from low stomach acid, you are likely to have problems absorbing iron, even if your diet is resplendent with it.
So long as you have had a B12 jab and will have more it will be OK to take the 5mg folic acid. If you think your Dr may be one of the clueless ones (as opposed to one who truly knows what they are doing) you could always have half a folic acid tablet a day or one every other day until you have had another jab or two. Once you have plenty of B12 in your system it is important that you have plenty of folate to make it work properly.
If the vomiting is due to nausea and dizziness (vertigo symptoms) then it might be due to your low B12 and folate levels, particularly the latter, and therefore once you get these up you should feel better soon.
I hope so! Let us know how you get on.
Good luck with everything.
Hi,
Some b12 links that may be of interest.
Some info may be specific to UK.
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".
Another one I plan to read is
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
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 even if their B12 level is within range.
BNF (British National Formulary)
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...
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 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
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
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...
Were you tested for PA (Pernicious Anaemia)?
For Coeliac disease?
NICE guidelines Coeliac Disease (UK document)
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?
gov.uk/drug-safety-update/n...
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi/smoked salmon etc?
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-...
Iron Studies
labtestsonline.org.uk/tests...
Referrals
Do you have any neurological symptoms eg tingling, pins and needles, tinnitus, numbness, memory problems, balance issues, migraine, clumsiness, muscle twitches etc?
If yes, have you been referred to a neurologist and haematologist?
Referred to gastro enterologist if gut symptoms present?
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...
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.
Best piece of advice I got was to always get copies of all blood test results.
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
I am not medically trained. There is more B12 info in pinned posts on this forum.
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
seeing neurologist, advice on b12 injections welcomed…
Has anyone had insomnia from B12 injections?
