Had my b12 tested in july, due to ongoing symptoms not related to my hashis ( optimal levels ) it came back at 138 pmol and the prescribing committee for my area plus nice guidelines state below 148pmol treatment should be given. Ive been offered oral b12 for 8 weeks then a re test. Dont know the dose im getting till i pick up px tomorrow. Is this going to work ?
Is this normal ?: Had my b12 tested in... - Pernicious Anaemi...
Is this normal ?
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Calypsoplus
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It depends if you've git an absorbtion problem.If you eat plenty of b12 rich food and already have an autoimmune condition they should test fir intrinsic factor antybodys.
Was your fokate iron ferritin vit D tested?
Look at your local trestneng guidelines
Of neurological symptoms injections are usually started
B12 tablets work for those that don't esg enough or absorb but need topping uo age slowed with age?
Most doctors will at least give thd loading doses .
I was prescribed 3x 50mg .they dud nothing. Thsg wax inbetween injections though in an attempt to have fewer injections
If yoh use the search tool
Loads on this.
Bnf guidelines
PAS information.
Tracey Witty
So if the test was in July have you had the 8 week course of tablets?
That isn't clear
No i pick up prescription tomorrow. I eat plenty of foods that contain b12, they didnt test vit D,folate and iron i think are ok. It was a phone appointment with a nurse practitioner, i quoted the nice guidlines and the PAS info, plus the prescribing committee for my area but nope ! Because the lab didnt flag up a low result, she said they wont test ifab. So if i take these tablets and my b12 rises, i dont have an absorption issue , ?
Your lab uses a different measurement to what I'm familiar with .It shoukd show the range in brackets on the result form.
Folate is normally rested at the same time.
I woukd get a copy so you can see what they have tested.
If b12 is below range the lab normally flag it up ??
Before treatment I woukd discuss your concerns with a doctor.
The best time to test the intrinsic factor is before treatment.
Thrn if positive you have PA .
If negative you may still have it but no antibodies on the day.
So picking up 40-60% of thoses with PA.
No gold standard /infinitive test
Your main thing is treating snd going by your symptoms.
The delay is bad.
Yes if you can absorb it will show on your bloods.
Hopefully you csn then use it .
.
Some have high levels in their blood but b12 is not getting to cell level so it's not relieving any symlyons and they get more ill.
Homocysteine can be tested snd Mma
And gastric levels in those cases
Was that your first ever b12 test?
If you've another earlier one you csn see if its dropping.
It's so complicated as the tests are not good. We all operate at different serum b12 levels too.
Symptoms are the most important thing.
Ruling out anything else too.
If you look through older posts
First of all get your results though .
July a long time ago if suffering and not retesting if thats whst they do??
Really don't know eat they are 'playing at
You have symptoms
You say it's below range.
You eat a diet rich with b12
Do its likely its an abdorbtion issue.
Or and writecin listing your diet.
Symotons .
Concerns about delay in treatment ext
Letters are put on your medical record.
A doctor should respond.
B12 range is 115 - 1000, my serum iron was 14 ( 5- 31 ) ferritin 110 ug/l , folate 6.3 , ive never had b12 tested before, so no comparison. Im worried about my legs/ feet when i walk or cycle my legs feel like theyre not there, a numbing, burning sensation in my toes, but when i stop its like painful pins and needles ! My fingers fizz all the time, i canr even put my knickers on without face planting the floor lol, i have to sit on bed. The fatigue is crippling and im so breathless. Ive told her all this this morning. Feeling defeated x
If she hadn't answers you need to be referred to the neurologist. Folate seems in the low side .
Csn you see snother doctor?
Or write in.
Hi,
Some B12 links that may be helpful....
I suggest taking a few days to read through them and maybe have a supportive friend or family member to help you if brain fog is bad.
There may be some details in the links that could be upsetting.
Link about "What to do next" if B12 deficiency suspected or newly diagnosed
b12deficiency.info/what-to-...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Symptoms of B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
If you suspect PA or have a PA diagnosis, worth joining and talking to PAS who can offer support and pass on useful info.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has lots of useful leaflets/articles that some forum members pass on to GPs.
pernicious-anaemia-society....
Have you been tested for PA (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.
It is still possible to have PA with a negative result in IFA or PCA test.
Some GPs may not be aware that it is possible to have Antibody Negative PA.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.
Link above has letter templates that people can base their own letters to GP on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
Keep copies of any letters sent or received.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
See section in above link for those with "neurological involvement" if you have neuro symptoms.
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/anaemia-b12...
cks.nice.org.uk/topics/anae...
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.
It's worth knowing what you are up against locally as some UK local guidelines on b12 deficiency differ from BSH, BNF and NICE CKS guidance.
Link below discusses treatment/diagnosis of B12 deficiency in an area of UK that has a poor reputation on this forum for how B12 deficiency is dealt with.
b12deficiency.info/blog/202...
Dietary b12 deficiency is sometimes treated with low dose cyanocobalamin tablets (50 mcg).
My understanding of UK guidelines (see BSH Cobalamin and Folate guidelines) is that B12 deficiency with neuro symptoms should be treated with B12 injections even if the cause is dietary.
Have you been tested for coeliac disease?
UK guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Films and videos about B12 deficiency and PA
PAS conference 2019
pernicious-anaemia-society....
Films about B12 deficiency
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.
Thankyou for all this. Picked my px up its 50mcg of cyanocobalamin ?? Not much use i think. Ive messaged my ccg, they said all the info i need is on nhs website lol
"Ive messaged my ccg, they said all the info i need is on nhs website lol"
If you want to know the local guidelines for your area, I suggest submitting a FOI (Freedom of Information) request to CCG asking for a copy of the CCGs guidelines for management of B12 deficiency.
To submit a FOI request, got to CCG website and put FOI or Freedom of Information in search box which should take you to a page explaining how to submit a FOI request.
You mention that you have some info from the prescribing committee for your area which may be the local guidelines.
FOI requests
gov.uk/make-a-freedom-of-in...
"Picked my px up its 50mcg of cyanocobalamin"
50mcg cyanocobalamin tablets are recommended for dietary deficiency in UK.
See link below.
BNF Cyanocobalamin
bnf.nice.org.uk/drug/cyanoc...
I suspect your GP has assumed your deficiency was due to diet.
What was your diet like when original low b12 result found?
Were you eating plenty of B12 rich foods eg meat, fish, shellfish, dairy, eggs, foods fortified with B12?
If yes to B12 rich diet then less likely that low b12 result was due to diet and more likely to be an absorption problem in the gut or some other issue affecting B12 levels.
Have you considered writing out a typical week's diet, food and drink for GP so GP can see you're eating B12 rich foods?
I realise it's hard if your brain is foggy or you're really tired but try to work through the links and info in my other reply, maybe a bit every day over a week or so or get a supportive friend/family member to help you.
You mention various symptoms that would usually be considered as neurological.
when i walk or cycle my legs feel like theyre not there
a numbing, burning sensation
painful pins and needles
fingers fizz all the time
i canr even put my knickers on without face planting the floor lol, i have to sit on bed.
Has your GP got a list of all your symptoms especially every neuro symptom, including any affecting spinal area?
See symptoms lists in my other reply.
Have you been referred to
1) a neurologist?
2)a haematologist?
First sentence in link below indicates that GPs should seek urgent advice from a haematologist for a patient with B12 deficiency with neuro symptoms.
cks.nice.org.uk/topics/anae...
Has your GP either referred you to a haematologist or written to a haematologist asking for treatment advice.
3) a gastro enterologist if gut symptoms are present?
"Ive told her all this this morning. Feeling defeated"
I suggest putting any queries about treatment/diagnosis into a letter to GP and may be copied to practice manager as harder for them to ignore a letter.
See letter writing link in my other reply.
More about letters
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
If you have the time and energy I suggest you access your medical records and blood test results to see what has been done in the past and what comments were made.
Always check results
One thing I learned from difficult experiences was to always check results for myself after being told everything was normal/no action and then finding abnormal and borderline results on the copies.
Untreated or under treated B12 deficiency can lead to permanent neurological damage.
Is your GP aware that B12 deficiency ( and folate deficiency) can lead in some cases to damage to spinal cord, SACD, sub acute combined degeneration of the spinal cord?
I am not saying you have this, I am not medically trained.
I'm saying the GP should be aware that SACD is a potential consequence of B12 deficiency. Mentioning any concerns about SACD to GP may concentrate their minds.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Sadly B12 deficiency is not as well understood by some GPs and specialist doctors as it should be....I often say in my replies to do some B12 homework in case your doctor hasn't done theirs.
Some GPs find it difficult to cope with assertive patients who ask questions and challenge decisions so be prepared for GP/patient relationship to come under strain.
Some UK forum members resort to self treatment (which I feel is a last resort ) if NHS treatment is not enough for them or they are refused treatment.
Time is of the essence in treating B12 deficiency.
If GP won't test you for PA then it's possible to get tests done privately.
If you think you may have PA, consider joining PAS who may be able to suggest info you can pass onto your GP.
PAS membership
pernicious-anaemia-society....
Good luck.
Thankyou, i have read through most of the links you gave, i also did lots of research when first diagnosed with hashis, had to battle to get properly treated, i know its the most common co existing autoimmune disease and will include in the letter i am writing to the practice manager. My diet is b12 rich, and im not going to take the cyanocobalamin as i know if my b12 rises even slightly, they will write me off, i will also include my list of symptoms, that at first i thought were thyroid related, such as a swollen tongue and awful tinnitus , i wont be brow beaten by them and helping me get my facts straight first is very much appreciated. What a fabulous supportive bunch you are . 😉
You might want to consider keeping a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received.
It could be useful evidence of improvement or deterioration in symptoms to show GP or specialists.
Scientist, not medic.
If your level rises on oral treatment then it's being absorbed somehow. It doesn't however tell you whether you have an absorption problem when you're taking a milligram per day, as some patients with PA can absorb B12 when presented in huge amounts.
When guidelines quote levels at which treatment will be given, I suspect there is little consideration of the precision of the test. The general principle of 'treat the patient, not the numbers' still applies.
Good luck.
Thankyou, ive been given 50mcg cyanocobalamin, dont know wether to take them or not 🤔
Hi again,
Here's a list of neurological symptoms that can be associated with B12 deficiency.
I had all of these apart from strange gait plus some that I haven't listed.
Memory issues
Forgetfulness
Brainfog,
Confusion
Numbness
Tingling
Pins and needles
Electric shock sensations
Insect crawling sensations (formication)
Burning sensations
Sensations of water trickling down my spine
Eyelid flickering
Muscle twitches
Muscle fasciculations,
Difficulty getting words out when talking (nominal aphasia)
Mental blanks during conversations
Limb weakness
Tinnitus
Clumsiness
Dropping things
Bumping into things
Dizziness
Vertigo
Restless legs syndrome (RLS)
Periodic limb movements
Migraine
Proprioception problems
Proprioception sense is awareness of where the body is in space. Think it is also called position sense.
There are many other neuro symptoms that can be associated with b12 deficiency.
If you see a neurologist, ask them to check your proprioception sense.
Tests below should only be carried out by a doctor at medical premises due to risk of loss of balance, never at home.
Two neuro tests that can help test proprioception are ....
1) Romberg test
2) Walking heel to toe with eyes closed
If no tests are carried out where patient's eyes are closed, it might mean proprioception has not been fully tested.
Balance issues when it's dark, eyes are closed or view of surroundings is blocked could indicate possible proprioception issues.
For example I used to fall off the pavement if someone walked directly towards me and blocked my view.
"ongoing symptoms not related to my hashis"
You already have one auto- immune condition (hashis - Hashimoto's).
Having an auto immune condition increases the chances of developing further auto-immune conditions therefore I would have expected your GP to consider the possibility of auto-immune conditions that can lead to B12 deficiency such as PA (Pernicious Anaemia) and Coeliac disease.
Might also be worth putting any thyroid results on the Thyroid UK forum on HU.
It's a very active and supportive forum.
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