Hi all,
My B12 level was 97, I’ve had my loading dose last one was 19th August. I had my B12 tested again on 12th October and is 519.
They aren’t planning any further treatment but I feel like symptoms are staring to come back.
I was testing for PA but I don’t have it.
Thank you all
Hi Buttons14,
Welcome to the forum.
Here's some links that might be useful. Some of them may have details that could be upsetting.
I'm assuming you're in UK.
If you're not in UK, it would be helpful to know which country you are in as patterns of treatment for B12 deficiency vary between countries. Type of B12 used in treatment can also vary.
A negative result in PA tests does not exclude a PA diagnosis. It's possible to have Antibody Negative PA but some GPs may not be aware of this.
There are many causes of B12 deficiency and it's possible for people to have more than one cause at the same time.
Some links I post may have details that could be upsetting. I'm not medically trained.
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-...
Have you been tested for Coeliac disease?
NICE guidelines Coeliac Disease (UK document)
nice.org.uk/guidance/ng20/c...
If you've been tested in past and had a negative result, I suggest you check guidelines above to see if doctor followed recommended diagnostic process.....some don't.
It's possible for a person with coeliac disease to get a negative result if they were not eating enough gluten prior to blood being tested and also if they have IgA deficiency.
More info on Coeliac UK website.
PAS can offer support and pass on useful info.
PAS membership is separate to membership of this forum.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
I've also read that a pepsinogen test may be useful.
PAS website has lots of useful leaflets/articles and a page for health professionals that your GP may want to read.
Thank you, I’m in the uk. I’ll have a read.
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...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms present.
Point 5 is about being symptomatic for B12 deficiency with normal range serum (total) B12.
Do you have neuro symptoms?
I am surprised that with a B12 result of 97 and returning symptoms you have only had loading doses and no further treatment. That doesn't seem right to me.
Do you mean 97 ng/L for serum (total) B12?
NHS Complaints
patients-association.org.uk...
Care Opinion website
Patients can leave reviews (can be anonymous) and sometimes GP surgeries, hospitals etc respond.
Local MP/devolved representative can be worth talking to if struggling to get adequate treatment.
A few go to the Press/other media
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
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... (B12 Institute Netherlands)
UK B12 documents
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
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 link below outlines two patterns of treatment for B12 deficiency in UK.
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
If you have neurological symptoms, my understanding is that you should be on the second treatment pattern, for those with neurological involvement.
NICE CKS B12 deficiency and Folate deficiency
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 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.
Local B12 deficiency guidelines
If you're in UK, I urge you to find out what's in your local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board.
Read blog post below if you want to know why I suggest this.
b12deficiency.info/gloucest...
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper founded PAS (Pernicious Anaemia Society).
UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link in my 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.
Misconceptions
B12 deficiency is not always as well understood as it should be by health professionals.
B12 article from Mayo Clinic in US
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.
it’s the receptionist that gives the results, I had a serum test 97 now 519 just under 8 weeks after the last of my loading dose.
You should be able to access your test results/medical records.
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 placein case you need it in the future.
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...
It's vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage.
Neurological Consequences of B12 Deficiency
PAS news item
May not be PA, but there are many other reasons for B12 malabsorbtion, and if the deficiency is not diet related you should have regular maintenance injections.
These are the NICE guidelines, are you in the UK?
cks.nice.org.uk/topics/anae...
The doctor should not be stopping the injections just because your B12 serum levels have risen.
"Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required. "
Speak or write to your doctor informing him/her that your symptoms improved with the loading injections but are now returning. Highlight the guidelines where it mentions maintenance dose and that measuring B12 levels is not required.
Good luck!
Firstly welcome
your body is telling you what you need.
if you are on a mixed dietincludi g adequate b12 it must be an absorbtikn problem.
dietary causes can often be corrected quickly if your diet adjusted and you are absorbing what you eat.
No test can 100% confirm PA the most widely used IFAB test used picks up about 50% of cases
If yoh had a good response to b12 injections get back to the Gp.
ask what's else can be causing the symptoms and why stop treatment that is working.
I’m a meat eater so not dietary. My GP is hopeless, you can never get an appointment. I’ll try on Monday, thank you.
Have you thought about writing a short, polite letter to GP. See letter writing link in one of my other replies.
My opinion is that letters are harder to ignore. Always keep copies of any letters/e-mails in case needed in the future.
You could write out a typical weekly diet, all food and drink to show GP. Highlight B12 rich food you have eaten eg meat, fish, shellfish, eggs, dairy, foods fortified with B12.
I suggest you ask them directly what they think has caused your low B12.
If they say it's your diet, you can then produce your diet sheet showing all the B12 rich food you have eaten.
You could then ask, could it be an absorption problem in the gut eg PA (Pernicious Anaemia) , Coeliac disease and there are many others including H pylori infection and internal parasites such as fish tapeworm.
If they think there might be an absorption problem in the gut, you could ask which ones they are going to test you for.
Sometimes GPs need a lot of nudging as there is a lot of ignorance about B12 deficiency among health professionals.
I have written some more detailed replies on other threads.
If you want me to, I'll include links to a couple of those threads. Just let me know.
More about misconceptions (wrong ideas) about B12 deficiency
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
UK blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Some UK forum members resort to treating themselves if NHS treatment is not enough for them or if NHS refuses treatment. There are forum threads about this. I see this as a last resort.
that would be great, thank you.
Hi again,
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books and 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...
Keep asking questions and I'm sure someone will be along to help you.
I usually suggest people are careful and protect their privacy. If you don't mind people knowing your ICB (Integrated Care Board) or Health Board, someone might be able to help you find the local B12 deficiency guidelines for your area.
When I read your story, I did wonder if you were in Gloucestershire which has a poor reputation on this forum as to how B12 deficiency is managed.
I’m in Cheshire, probably falls under Chester.
CCGs (Clinical Commissioning Groups) were replaced by ICBs (Integrated Care Boards) in England on July 1st 2022. If you can't find the local B12 deficiency guidelines for your ICB, try looking online for the previous CCGs guidelines.
List of ICBs - England
nhs.uk/nhs-services/find-yo...
I think your ICB is this one but you might want to check its map and boundaries.
I think these are your local B12 deficiency guidelines but check for yourself.
panmerseyapc.nhs.uk/media/2...
The review date is in 2023.
Local B12 deficiency guidelines are likely to change in 2023 due to new NICE (National Institute of Health and Care Excellence) guidelines on B12 deficiency and PA being published, probably Nov 2023.
I bang on about it but check them periodically as your GPs are likely to refer to these when diagnosing and treating B12 deficiency. Sometimes the local guidelines can change at short notice.
I breathed a sigh of relief to know you're not in Gloucestershire...their treatment algorithm puts most people on oral B12 tablets.
A bit about oral B12
Some people manage their PA and B12 deficiency from other causes with high dose oral tablets but some forum members including myself report that oral tablets are ineffective.
Low dose cyanocobalamin tablets (50mcg) are sometimes prescribed for mild dietary B12 deficiency. My understanding is that B12 deficiency with neuro symptoms should be treated with B12 injections even if the cause is dietary.
Referrals
Have you been referred to any specialists?
NICE guidance Suspected Neurological Conditions
NICE guidelines- when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist
cks.nice.org.uk/topics/anae...
Referrals are expensive and GPs may be reluctant to refer in cash strapped times.
If GP won't refer, you could ask them to write to a local haematologist/neurologist asking for advice on treatment.
I would warn you that even specialists such as haematologists and neurologists don't always understand B12 deficiency so seeing a specialist is no guarantee of better treatment.
Symptoms list
Has your GP got a list of all your symptoms especially any neuro symptoms and definitely any affecting your spinal area?
Symptoms diary
Some forum members keep a daily symptoms diary which tracks changes in symptoms over time and any treatment is given. Worth noting any relevant blood tests as well. A symptoms diary can be useful evidence of improvement or deterioration in symptoms to show GP/specialist. Maybe pick up to ten symptoms to track.
If you have neurological symptoms and your GP is reluctant to continue treatment, you may want to mention that inadequate treatment increases the risk of developing SACD, sub acute combined degeneration of the spinal cord.
I'm not saying you have SACD, I'm not a health professional but I am saying that your GPs and any specialists should be aware that SACD is a potential consequence of B12 deficiency.
Mentioning SACD to them may make them pay more attention to you.
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Folate/Iron/Vitamin D
Do you have recent results for folate, ferritin (or other iron tests) and Vitamin D?
Forum members often report deficiencies in these as well as B12 deficiency.
Thyroid
It's quite common on this forum for members to also have thyroid issues.
I suggest you put any thyroid results on Thyroid UK forum on HU.
In UK GPs often only test TSH whioch won't give a full picture of thyroid function.
There are other thyroid tests besides TSH which a GP or specialist can order.
thyroiduk.org/thyroid-funct...
I had lots of different blood tests, I've been to the doctors this afternoon to pick up a print out of my results. I had LFT, HBA1CD, FBC, TFT, GFREPI, UE, CRP, B12, FSH, IFA & Folate which was 5.7. everything came back within range except my B12
I did tell them my symptoms, whether or not they noted them all I'm not sure.
If you put your symptoms into a letter to GP that should ensure that there is a list of them in your medical file.
If you don't know if they noted your symptoms, you could access your medical records to see what they wrote after that appointment/conversation.
It's useful to check what's in your records periodically as GPs can make mistakes.
They have a legal duty to correct factual mistakes eg wrong name, wrong address in your medical records.
They do not have to change a diagnosis or comment just because a patient disagrees with it. Patients can ask for a note to be inserted in to the records if they disagree with something and can give reasons why they disagree. I suggest putting this type of request into a short letter to GP/practice manager and keep a copy.
See links about accessing medical records in one of my other replies.
Are you registered for online access to your records with your GP surgery?
If not, look on your GP website for "Online Access/Patient Access or EMIS Access".
If you have time, may be worth typing out the results for your FBC (Full Blood Count).
There can be useful clues on FBC as to whether there is an issue with B12, folate and iron.
Have you got a result for ferritin or any other iron tests?
Link about iron tests
labtestsonline.org.uk/tests...
B12 deficiency (and folate deficiency) can lead to enlarged red blood cells (macrocytosis).
Iron deficiency can lead to small red blood cells (microcytosis).
If a person has B12 deficiency (and/or folate deficiency) with iron deficiency then the red blood cells may appear to be normal size on FBC (Full Blood Count) because the effects of the iron deficiency can mask the effects of the B12 deficiency (or folate deficiency).
Link about macrocytosis
patient.info/allergies-bloo...
Link about FBC (Full Blood Count)
labtestsonline.org.uk/tests...
Link about blood film (aimed at health professionals)
patient.info/doctor/periphe...
This might be helpful in a person with B12 (or folate ) deficiency with iron deficiency.
Although your folate result appears to be within range, it doesn't look very far up the range. Have you asked your GP if you would benefit from taking a folate supplement?
A typical folate range in UK would be >4 ng/L meaning above 4ng/L and your result was below 6ng/L.
Local pharmacist may also be worth talking to.
Take care not to include any details that might identify you when posting results.
Threads from HU can appear on NHS and other websites.
If you want to change your thread to a more private setting where only visitors to this forum can see it
1) Go to original post, click More then click Edit
2) Scroll down post to Share, click Community Only then click Post.
What was your IFA result?
Does your GP know it's possible to have PA with a negative result in IFA test?
There is info about Antibody Negative PA in BSH Cobalamin and Folate guidelines and in Martyn Hooper's book "What you need to know about Pernicious Anaemia and Vitamin B12 deficiency".
I suggest that if you have the time and energy you read through your local B12 deficiency guidelines before your next appointment. I've put the link here again.
Have they given you a prescription or any advice on B12 supplements?
They should at least have suggested B12 supplementation on a higher level than the usual daily requirement and then offered to test your B12 again in three months time.
Have they suggested a diet or referred you to a Nutritionist
If you can show that your deficiency was not diet related and were previously taking supplements but still had B12 deficiency you can argue to be kept on the three monthly injections.
lf they won't , and your symptoms are returning , and you aren't confident to self inject , or would prefer to have your diagnosis and treatment needs evident on your medical history , you could choose to return to the GP in a few months time and request for your B 12 to be retested . If your level is decreasing you have good evidence to firmly request being put on the standard treatment of a B 12 injection every three months for life , not just until levels have increased.
Realistically , if your diet was good , just because you have a normal B 12 blood result once doesn't mean you don't need to keep having regular injections , it just shows the injections are beginning to work. The Nice treatment guidelines actually specify that no more blood tests are required and three monthly injections should continue , even if you are B12 deficient and don't have PA. Blood tests are only required if your symptoms continue or get worse despite the injections.
You could request to be referred to a Haematologist to rule out other issues and have a Specialist request to your GP to maintain your treatment which they can't ignore.
they literally said its within range, no further action. I'm going to be ringing the doctors next week.
I would urge you to consider writing a letter with any concerns.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.
3) 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. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters/e-mails sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
This was my situation as well. Initial B12 was 157, had the loading doses then 3 monthly injections for a year. One month after final injection level was 534 and told I did not need injections anymore. 2.5 years later due to another condition my b12 was tested and it was 189. I've lost almost all of the b12 I had from the injections and the amount of time it's taken makes it possible I haven't absorbed anything from my diet (meat eater but lactose intolerant so no dairy but I had been eating dairy prior to my first low B12 test and I also had 1 b12 jab during that 2.5 year period). I've had 2 IFAB tests both negative and am currently taking an oral supplement. My b12 will be tested again at the end of this month to see if I've absorbed any of it. If not, it has been agreed to start injections and I will push for answers as to why I am not absorbing it with gp and also with gastro. I expect to get more sense out of the gastro...
Yes you're right, your doctor is useless. And let's add clueless to the mix. Because he or she is not educated about these points -
1)They actually don't know if you have PA because that test is not conclusive when negative. They can easily find that in their medical journals.
2) Even though you might have PA, it is irrelevant. You have an absorption problem that will not magically go away. One that you need regular shots for and one that they have given you no explanation for at this point. Since we know it is not diet, it is an ongoing issue that needs treatment. They can find that all over their medical journals.
3) They do not know not know that testing is meaningless after treatment begins. They can find that all over their medical journals.
I am going to be blunt. This is your life and your health. Give it one go with them. One. Get all your ducks in a row. And give it your best shot. Hard when you're ill & needing your shots, but give it your best.
Do it verbally and have a letter ready to be put in your file. Be firm that it needs to be put in your file.
Then stop. And look after yourself and your well-being. And strongly consider self-injecting right off,. if you get nowhere with the erroneous bull you are dealing with at this time. You will not regret looking after your health first.
All the best to you.
My favourite links -
stichtingb12tekort.nl/engli...
And about the testing
stichtingb12tekort.nl/engli...
And just in case they pull this little common scare tactic out of their hat -
thank you all for your reply’s, I will be writing a letter to my GP, I’m also going to call them and ask for a call back. I’ve been doing a little research and should add I’ve had issues with my stomach for at least 5 years, I did go to my GP at the time who took a stool sample which was fine, felt my stomach and took some bloods I have no idea what bloods were taken but they did say it showed I had inflammation.
I asked what the next step was and the response I got was we’ll feel your stomach again. I didn’t go back as feeling my stomach didn’t help the first time. I then went through a hard time in my life, moved 300 miles away but my stomach issues have never been resolved and still remain undiagnosed, I will be mentioning this to my doctor too. When doing research I also read that pcos (diagnosed with 15 years ago) can cause b12 deficiency if you’re insulin resistant which I’ve never been tested for. I’m going to keep at the doctors until I get some answers and treatment for b12.
SI help for a newbie 
Newbie with some hope and a couple of questions!
Potential newbie - desperately need advice 
PLEASE HELP WITH SUSPECTED B12 FUNCTIONAL DEFICIENCY
