Random question...my bloods came back today and B12 was 182 so just out if range and GP said to repeat test in month. I have been craving marmite so have had at least 5 teaspoons in last 2 weeks! Would this be enough to raise my levels before my next test ?Thank you in advance
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No I wouldn't have thought so .If food raises your b12 and reduces symptoms this is your answer and a good thing.
If you have lots of b12 in your diet I.e not a vegan.
Have been on the same diet with 'in range ' b12 serum levels.
It's more likely to be an absorbtion problem.
If you look at the many lists of causes of low b12 and don't fit them.
I.e any medications
Vegan diet
Surgery
Have coeliac disease ect
The main thing is your symptoms though.
Doctors should act on symptoms after eliminating obvious other causes .
Was your folate level okay.
Vit D
Iron
If folate low b12 must be treated first.
Thank you for your swift reply I am on vit D ,have a poor functioning thyroid they think is due to my pituitary. My diet is the best its been for years thanks to slimming world but i have the minimal of wheat based produts.My iron was 127 they didn't test for folate, that has been requested on test next month.
Hi,
I don't think the marmite will have much affect.
My doctors lacked knowledge about B12 deficiency. I hope you have a kind GP and really recommend reading about B12 deficiency in case you meet doctors and other health professionals who don't understand it.
It's vital that B12 deficiency is treated adequately. Inadequate or delayed treatment increases the risk of developing permanent neurological symptoms.
If you have severe B12 deficiency symptoms, including neurological and psychiatric symptoms then I am surprised that your GP is waiting a month to retest rather than starting treatment now.
If you have time, take a few days to look through info below as there may be something useful.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
Testing for PA
pernicious-anaemia-society....
Local B12 deficiency guidelines
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board then compare that with BNF/NICE CKS and BSH links.
List of ICBs in England
nhs.uk/nhs-services/find-yo...
If you can't find local guidelines online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
See blog post below if you want to know why I suggest doing this.
b12deficiency.info/gloucest...
Some UK B12 documents
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (detailed/aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BNF Hydroxocobalamin (aimed at health professionals)
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency ( easy to read/aimed at health professionals)
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in Nov 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Thank you there's plenty to look at ,it feels the same as having thyroid issues-a bit of knowledge helps to get proper treatment!
Those funny food cravings do clinch it , much like in pregnancy we often crave the strange foods because our brains remember them as containing the nutrients we are low in.Marmite alone wouldn't be enough. It would be a good plan to increase foods in your diet each containing Vitamin B 12 , Folates and B vitamins in general. Increasing Vitamin D will also help your thyroid. You may not know but low or Deficient vitamin B 12 or Folates can be a cause of poor thyroid function or make it harder to keep a balance in your thyroid health issues when on medication because it reduces how well you absorb medications .
It would be worth starting a B12 and a Folate supplement daily before the next test too. Take your B 12 separately, after a snack or meal with little or no Vitamin C and lots of water. You can take your Folate and Vitamin D at the same time as a daily combined vitamin and mineral supplement, after the fattiest meal of the day with some Vitamin C. Increasing to having the recommended water intake each day also helps improve the metabolism of nutrients and improves thyroid function.
The reason it's worth starting this plan now , and keeping a food diary is to see if you can improve your B12 and Folate levels with diet and oral supplements alone.
If you are still low or Deficient after your next blood test, your diary and use of supplements is proof to show the GP that you cannot improve the level with oral B12 alone and they should put you on the B12 injection programme. If you do this now you won't find you go back get another low reading and then the GP says you need to try oral supplements first because you will have already done it , as this delays things unnecessarily.
Try including a variety of these in your daily diet , eggs , dairy products , lean beef , lean meat and fish , dark green leafy vegetables, mushrooms , pulses like chick peas and soya , , yeast extract ( there's your favourite Marmite!) nuts , particularly Almonds , blueberries , they can all work well in maintaining your weight and improving your general health too. I hope you are just having a temporary blip but if you are still low , need more advice or about to start injections do post again , we are here for you . Take care , Bee
Wow thank you there's some really useful information there!
The amount of B12 in Marmite might be just enough to help general dietary intake, but it is pretty small. 1.9 micrograms in a portion.
(And make sure you check properly any Marmite-like spreads. There is no guarantee they have any!)
You can buy a pot of B12 capsules/tablets, containing 50 to 1000 micrograms in each one, for a price not much more than one pot of Marmite.
Marmite nutritional information
Hi,
One potential problem with taking B12 supplements without a firm diagnosis of B12 deficiency is that it might nudge serum(total) B12 into the normal range and some GPs might say serum B12 is now normal, no problem, no deficiency.
See link in other reply about what to do next if B12 deficiency suspected.
Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result.
b12deficiency.info/your-ser...
The blog post above has some useful quotes from UK B12 documents that might be worth passing to GP if you're symptomatic and struggling to get treatment.
B12 Society (UK charity based in Scotland) has a pop up notice on home page warning people about supplementing prior to B12 tests.
UK guidelines (see BSH and NICE CKS links in my other reply) suggest that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.
Here's a quote from NICE CKS guidance on B12 deficiency and Folate deficiency
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12"
cks.nice.org.uk/topics/anae...
I suffered severe B12 deficiency symptoms with serum (total) B12 results as high as 500 ng/L. These included many neurological symptoms....I had pins and needles in my spine and had developed dementia type symptoms.
Do you have neurological symptoms?
If yes to neuro symptoms, I suggest trying to get your GP to start treatment now.
Severe B12 deficiency can lead to spinal cord being affected in some cases.
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
If you turn out to have both B12 deficiency and folate deficiency, I hope your GP is aware that treatment for B12 deficiency should be started first.
See Cautions section in next link.
BNF link about folic acid
bnf.nice.org.uk/drugs/folic...
Some wrong ideas that health professionals may have about B12 deficiency
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
B12 article from Mayo Clinic in US (
Aimed at researchers and health professional and one of the best articles on B12 deficiency I've come across.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Apologies for bombarding you with lots of information...I don't want anyone to suffer in the way I did due to GPs ignorance.
One thing I'd really urge you to do is to find out what's in the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board as GPs are likely to refer to these for help with diagnosis and treatment.
I suggest people are careful with their privacy but if you don't mind people knowing your ICB or Health Board then someone might be able to help you find your local guidelines.
Threads from HU can appear on other websites eg NHS website.
If you want to change your thread to a more private setting...
1) Go to original post, click More then click Edit.
2) Scroll down post until you get to Share, click Community Only then click Post.
If this has worked, next time you log in to website and check thread it should say private in webpage address.
If you think you need treatment now and your GP is unhelpful, consider putting queries about treatment into a short letter to GP and maybe copies to practice manager as well.
See letter writing link in my other reply.
See thread below about Patient Safety, has lots of useful links fort hose who've had or are having difficult health experiences.
What does your GP think is causing your low B12?
The cause may affect the treatment you are given.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
If your low B12 is not due to diet then I would expect your GP to at least test you for PA (Pernicious Anaemia) and Coeliac disease.
See Pernicious Anaemia Society website for more info about PA.
UK guidelines below suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
If you were tested in past and had a negative result in usual coeliac test, check guidelines below to see if GP followed recommended diagnostic process...some don't.
NICE CKS Coeliac disease
cks.nice.org.uk/topics/coel...
A person with coeliac disease can get a negative result in tTG IgA test for coeliac if they
1) have IgA deficiency
IgA is an immunoglobulin
2) were not eating enough gluten prior to blood being tested
See Coeliac UK website for more info
Good luck with getting answers.
Oops, here's that thread about Patient Safety
healthunlocked.com/pasoc/po...
Some UK forum members turn to treating themselves as a last resort if NHS treatment is not enough for them.
Some get B12 injections from private GPs or beauty salons, some try high dose oral or nasal B12 supplements and some turn to self injection (SI).
I wouldnt supplement yet. My B12 was well over range with supplements and so no injections prescribed but the supplements and over range B12 did nothing for me as I needed the injections which made a huge difference. I dont know why but this is common.
Thank you for that I feel its going to be a challenge to get treated just like with my thyroid!
Fingers crossed for you that you get the treatment you need but it can be a fight in some cases.
One set of GPs gave me a set of 5 or 6 loading injections for a below range serum B12 result then nothing else because my serum b12 had gone into the normal range. This was despite me having over 50 typical symptoms including many neurological symptoms.
To my mind knowledge is power although in my case despite years of trying to get treatment, in the end I was left with no option other than to treat myself.
I'd add that if your GPs are really unhelpful then worth considering a move to another GP practice although this is no guarantee of better treatment. I stayed far too long with one GP surgery.
nhs.uk/nhs-services/gps/how...
Does your GP have a list of all your symptoms especially any neurological symptoms and definitely include any that affect your spinal area?
I used PAS list below and added any symptoms not on list at the bottom.
pernicious-anaemia-society....
I wish I could say it was easy to get treatment and I hope in your case it is ... but many on this forum have struggled so worth considering what to do if you can't get adequate treatment.
There have been forum members who suffered SACD, sub acute combined degeneration of the spinal cord from delayed diagnosis and treatment.
If neuro symptoms present (see Symptoms lists in other reply)...
Have you been referred to a neurologist or any other specialists.
It can be expensive for Gps to refer patients to specialists so in cash strapped times patients may need to be assertive to get referrals. Seeing a specialist is no guarantee of better treatment.
NICE guidance Suspected Neurological Conditions
NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist
cks.nice.org.uk/topics/anae...
Above link also describes treatment for B12 deficiency in UK.
I used to put referral requests into a short letter to GP along with a list of reasons why I needed referral. I also used to include helpful quotes from UK health documents. See NICE CKS and BSH links.
IF GP still won't refer then consider asking them to write a letter to local haematologist or neurologist asking for advice on treatment. Consider going privately if that's an option...seeing a private specialist can be very expensive and does not guarantee a better understanding of B12 deficiency.
If neuro symptoms present and GPs won't refer or give adequate treatment, may be worth discussing the risk of SACD if treatment is delayed or mention this in a letter to them. See Point 1 in letter writing link below.
b12deficiency.info/writing-...
My feeling is letters are harder to ignore than info passed on verbally. Keep copies of any letters in case there is a need for a formal complaint in future.
GP/patient relationship
If you need to be assertive it can put strain on GP/patient relationship.
If things do become difficult, see thread about Patient Safety.
No haven't been to the Gp with my symptoms though I did mention to my endocrinology consultant that I have been feeling shattered in the afternoons ,I had a low cortisol blood result after this too which was repeated but I've heard nothing from the hospital since. Just fallen again walking the dog and frequently have bouts of vertigo, hands have altered sensation but put that down to carpal tunnel needing doing again. Always have mouth ulcers have had for decades but ive noticed tinnitus more acutely recently. I asked for my B12 to be checked at a recent MOT bloods as read thyroid disease can drop it but not sure if it's autoimmune as they think it's secondary thyroid as looks like my pituitary is selective at which bits it tells to work!!
You mention several neurological symptoms so please think about pushing for a neurological referral.
vertigo
altered sensations
tinnitus
Here's a few more but there are many others
tingling
pins and needles
electric shock sensations
burning sensations
migraine
ataxia
muscle twitching
eyelid flickering
restless legs syndrome
periodic limb movements
brainfog
memory problems
difficulty getting the right word out (nominal aphasia)
dizziness
balance problems
clumsiness
dropping things
strange behaviour eg putting car keys in the fridge
unusual way of walking (unusual gait)
proprioception problems
I always find proprioception tricky to explain so worth looking it up yourself.
It's awareness of where your body is in space.
If your balance is worse when your eyes are closed, it's dark or your view of your surroundings is blocked then that's suggestive of possible proprioception issues.
For example, I used to fall off the pavement if someone walked directly towards me and I couldn't see ahead of me.
Going out to the garden at night was a nightmare as I used to wobble all over the place.
I used to misjudge where things were on shelves. I could go on but if this sort of thing is happening to you, get your doctors to check your proprioception.
If you're having falls I think you need an urgent referral to neurology (I'm not a health professional) and make sure you mention your low B12.
If you're over 65 then these guidelines below may be relevant.
NICE guidelines Falls in older people
I do think there is sometimes a lack of consideration for older people. Too many things can be put down to "getting older" when there may be something treatable going on.
Do you have a supportive friend or family member who can go with you to appointments or consider asking to record appointments so you have arecord of what's been said to you.
Some sources of support
PAS (Pernicious Anaemia Society) has some local support groups. You do not need a confirmed PA diagnosis to join PAS.
PAS membership
pernicious-anaemia-society....
PAS Contact Details
PAS support groups can be a good place to swap information.
pernicious-anaemia-society....
B12 Info website (formerly B12 Deficiency Info)mentions sources of support
B12d.org had meetings online for their members during pandemic, not sure if these still happen.
Contact B12d.org if interested.
"Always have mouth ulcers have had for decades "
Search forum threads here for "mouth ulcers" and you should find lots of posts.
If you have time and energy, search online for " b12 deficiency mouth symptoms".
Maybe talk to your dentist and tell them about your low b12 levels and ask if ulcers and low B12 connected. Maybe take pictures of mouth symptoms to show dentist and GP.
It's possible that dentist won't know that there is an association between mouth ulcers and B12 deficiency as understanding of B12 deficiency is sometimes lacking.
Do you have other mouth symptoms?
B12 deficiency can show as
a yellow tongue
splits in tongue
sore inflamed tongue (glossitis)
burning sensation in tongue
indentations around tongue that look like little bite marks
sore spots at corner of mouth (angular cheilitis)
bleeding gums
tooth loss
I had pins and needles in my teeth.
B12 deficiency can be misdiagnosed as other conditions
Wow thank you there's a few more like the twitching eye that lasts about a week and the general poor balance. I've kind if been so busy getting on with looking after everyone else that I've not really being paying attention to what's been going on. Thank you for all this helpful advice!
I think it's definitely time to look after yourself.
If you're menopausal or elderly, I think there is sometimes a tendency to put lots of symptoms down to that.
There is a window of opportunity to prevent permanent neurological damage if B12 deficiency present. It requires prompt and adequate treatment.
Folate deficiency may also lead to neurological damage if untreated or under treated although this is less common than for B12 deficiency as far as I know.
Good luck and I hope you keep the forum updated.
If you want to update the forum on what's happening it is sometimes better to start a new thread as responses on older threads can get missed.
Two 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).
UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link in other reply.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
The two books above may well be available from your local library service and it's possible to get second hand copies online.
There is also a paediatric version of above book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I also think these are worth reading
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies. I could recognise myself in some of the stories and got quite emotional.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD .
"there's a few more like the twitching eye that lasts about a week and the general poor balance"
Think about filming symptoms that come and go so you can show it to doctors as long as it's safe to do so. I had so many symptoms but some of them were not always there so I suspect that some of the doctors didn't believe me.
If you see a neurologist, make sure they check your proprioception sense.
The tests below should only be carried out by a doctor at medical centre due to the risk of injury from loss of balance.....
Two tests that can help to diagnose proprioception problems
1) a Romberg test
2) walking heel to toe with eyes closed
Videos of these and other neurological tests can be found on Youtube.
If neurologist doesn't carry out tests where patient's eyes are closed, it's possible that proprioception has been fully tested.
A person with proprioception problems may be able to walk heel to toe in a straight line with their eyes open but be unable to walk heel to toe in a straight line with their eyes closed.
"Just fallen again walking the dog and frequently have bouts of vertigo"
I found some interesting articles when I searched online for "B12 deficiency falls".
Update on todays bloods so now 191 (190-883) so satisfactory no action ,where do I go now do you think ??
Hi,
Have you considered writing a letter to your GP?
See link below.
b12deficiency.info/b12-writ...
You have had a below range B12 result.
Your current result is borderline.
You have symptoms that are consistent with B12 deficiency.
Is there a family history of b12 deficiency, PA or other auto immune diseases?
Have another look at my reply that starts with
"Hi,
One potential problem with taking B12 supplements "
Some UK forum members turn to treating themselves. There are forum threads about this.
If you have time, I think it's worth putting your update in a new post along with a link to this thread. Replies on older posts sometimes get missed. starting a new thread should mean more people see it.
Thank you will try to get an appointment to discuss but I've had the " it's not how you feel it's what the tests say " put down before ...
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