Hi I am trying to figure out if I have a b12 problem still despite the 12 weekly b12 injections I get at the Gp surgery in the UK. My original intrinsic factor around 4 years ago was negative however does this mean I don’t have PA? My b12 levels before injections were quite low hence why Gp started me on the injections to see if they’d help my exhaustion at that point. Since the past month and a half I’ve had tingling in my lower feet and sometimes like I’m walking on a sponge sensation and burning in my feet and burning in my lower legs - both lower legs below the knees. Also after my last 12 weekly injection which I had in May, the burning seemed to be worse in the lower legs and feet and really bad for a little while. I’m just wondering if I’m getting enough B12 as I don’t think I am possibly. I need to get to the bottom of it as I don’t want to see Neurology for other things if my sensation issues are with B12 after all. My GP is re-testing my b12 next week and Intrinsic factor again as I’ve had these leg and feet sensations and they want to find out what’s going on. Any advice at all to help me with the GP and getting the right info from them?
Help with B12 and PA diagnosis? In UK - Pernicious Anaemi...
Help with B12 and PA diagnosis? In UK
You need more injections.
Have you asked for a higher frequency? 2 months from 3 months?
No I haven’t asked yet but I will do next time I see my Gp got an appointment booked for 6th July. Hopefully she agrees to that and see if it can help me. Do you know what the burning legs after the injection could mean? I also had the burning legs and feet on and off before the injections but it seemed to get bad a day or two after the last injection then now it’s just occasional
Difficult to say for certain about the burning legs, but we could speculate on a few things...
1. Reversing out syndrome
When people first get treatment it can often reawaken dormant nerves that have been damaged or unable to function. Dr Chandy (a famous B12 person!) postulates this is the body's way of healing through what he calls 'reversing out', where the symptoms you had leading up to deficiency start to regress in the reverse order they arrived. Can also be called 'worse before better'. Usually, it means you need to keep taking supplements and keep them high until your body is done with everything it needs to do. So this could take some time, sometimes up to 2 years.
Do you take any supporting supplements?
2. PA
You mentioned a Negative IFAB test, but this is known to not always be accurate. Did the Dr investigate any other causes for your B12 deficiency if this was neg? Could it be related to any intestinal or stomach-related issues?
If you do have an absorption problem, it could be that you need to keep your levels higher more frequently. If you're not absorbing, then when your level dip it could be quite a subtle effect. Then when you have your shot, it could be waking up the healing...so to speak.
Overall, it sounds like you have a supportive Dr and it's worth getting the retest and talking to them about increasing frequency of treatment.
It's pointless doing b12 levels once on injections as whole point is keeping levels high .Saying that my mums gp did a b12 on my mum.
I'd cancelled it on hef behalf but district nurses didn't get the message
I'd requested 2 monthly for her.
Astonishing b12 was only 310 ( 200 -900) mine eax above 2000
So she now has 2 monthly.
Easy for gp to prescribe as in bnf guidelines
Hope extra b12 injections can help you.
You cannot get reversing out syndrome from three or two monthly injections. It’s pure nonsense/fantasy as b12 only stays active for 24 hours, although levels will show high in your blood. Even weekly injections will not lead to reversing out, your burning sensation is further damage. As per NICE guidelines you have neurological damage thus need at least every other day injections until the neurological damage stops which could be at least two years due to small nerve fibres taking this long to regrow.
The number of people I know who have PA or b12 d and have been having three or two monthly injections for years but still suffer is like nearly 100%. I try to explain to them all the time about what they should do and I get the same blank expression. And I always ask have they got better following doctors advice? They always say no they are getting worse. Yet they are still unable to connect the dots.
No idea why I bother. The last two years have shown people blindly follow these so called doctors and politicians who have zero interest in helping you.
Hi PhilThat’s interesting though there’s no way my Gp would give me alternative day injections so does that mean I’d have to self inject? I don’t even actually still know if I have PA either yet as my first doctor was useless and didn’t help at all, my I intrinsic factor was negative around 5 years ago and they palmed me off. My B12 was low so got started on injections loading doses then 3 monthly. What else can I do?
You need three to five I.F tests negative before you can really rule out PA. Too be honest I would assume PA and research what is the best way to treat it. As you may as well go out and take medical advice from a tree than talk to doctors in the UK. They have all been taught incorrect theories are arrogant and just want bonuses from big pharma for prescribing us drugs that just make us even more sick. If you do some proper research you will see the damage all medicine does (destroying enzymes in our body for one) Yes, I would self inject. I am the last person my family thought would S.I but it’s easy once you have done a few of them. I remember two years ago this week when I was away in kernow and my friend was injecting me as I was scared 😂 I look back now and laugh as I can inject whilst talking away to people or even in an online meeting.
Be aware of other supplements and reversing out. This will not be an easy journey I call daily injections the SAS approach.
I would also look into diet and what you put in your body.
Obviously, all this is my opinion due to many hours of research. I am not a doctor just someone who cares about healing people.
If you do have pernicious anaemia, you will always have it. There is no cure, just control. PA stops you utilising B12 from your food, which is why you need injections for life. Testing positive for Intrinsic Factor antibodies (IFab test) is not a test for PA. If you have Intrinsic Factor antibodies, you do have PA - but having PA is not reliant on the presence of these antibodies. There is a chance that you might develop antibodies later, so this test may pick up antibodies at a later date if anyone cares to retest for this. You might of course have no Intrinsic Factor for antibodies to attack in the first place !
You can be PA(IFab neg) - I suspect most people with a diagnosis like this have had to have an awful lot of other B12 deficiency causes ruled out first though !
Every other day injections are advised in medical guidance to GPs if the patient is presenting with neurological symptoms. Loss of sensation in lower limbs and feet seems the most common of these. This can become a permanent condition if not treated or undertreated. Or if addressed too late to rescue nerves. A GP should not need to wait for a neurologist to tell her/him this. In severe cases, demyelination of the spine can become an issue - which is the unwrapping and deterioration of the protective layer (myelin sheath) surrounding the spinal nerve bundle. Something a neurologist can detect with a spine MRI.
Have a look at guidelines that your GP should be following in your case:
NICE: the National Institute for health and Care Excellence
BCSH: the british Committee for Standards in Haematology
BNF: British National Formulary
The BNF advice is that every other day injections continue until there is no further improvement and suggest a review after three weeks of treatment. NOT that treatment should stop after three weeks. I believe that this review is only to check that this frequency is taking effect. Nerve repair can take a long time, depending on severity of damage done. Sometimes, not everything is retrieveable - but it would be a crying shame if stopping effective treatment too early was the cause.
After no more improvement can be had, a frequency of an injection every two months is advised.
Martyn Hooper, the founder of the Pernicious Anaemia Society, had three IFab tests before getting a positive result. He also has some permanent nerve damage.
I hope that you can get your GP to help you. If not, others in the same practice may be more helpful. A supportive GP is essential if you have a chronic condition.
Hi I was never officially diagnosed with PA. Around 4 years ago I was low on B12 it want below the nhs threshold so the intrinsic factor back
Then was negative and I was started on b12 injections after the loading doses. This is my issue because I didn’t have proper care and a useless GP at the time I’ve never been properly diagnosed with Pa so now I doubt I will get the every other day injections for the feet and leg symptoms. How can I get them if no official diagnosis as I am seeing my Gp again in a weeks time. I’m abit worried now as if she won’t do the injections every other day to see if it helps then I could potentially get more damage?
I should say that I don’t know if these feet and leg symptoms are actually coming from b12 issues but it is a possibility
Hi mistygrey,
Many of us have love stomach acid so low in other vitamins and mineral so it is recommended that a multivitamin, apple cider vinegar.
Hi,
I've only just spotted your thread as have not been on the forum for a week or so.
Apologies for a quick reply but about to go out.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
b12deficiency.info/what-to-...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
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 UK treatment info in book is out of date. See BNF hydroxycobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
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...
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE stands for The National Institute for Health and Care Excellence.
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 next year.
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
Each CCG (Clinical Commissioning Board)/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
If you want to know why I urge UK forum members to get hold of a copy of the local guidelines for their area, read the blog post below.
b12deficiency.info/gloucest...
Misconceptions (wrong ideas) about B12 deficiency
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.
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...
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 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 am not medically trained.
Hi,
Am I right that you're in Scotland?
Links below maybe of interest
A B12 charity based in Scotland
I have no experience of the above group.
NHS Scotland link about B12 deficiency and Folate deficiency
nhsinform.scot/illnesses-an...
Link to article about the review process for patients receiving B12 injections for a Scottish Health Board.
guidelinesinpractice.co.uk/...
Advice to GPs on when to test B12 - Scotland
hats.scot.nhs.uk/wp-content...
Accessing Health Records (Scotland)
nhsinform.scot/care-support...
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...
MP in Scotland who raised concerns about treatment of patients with PA
douglasross.org.uk/news/mor...
Health Boards in Scotland
NHS Highland Guidelines
See section on Testing Results/Interpretation/Management for treatment algorithm for B12 deficiency
tam.nhsh.scot/for-healthcar...
Due for review in Feb 2023.
NHS Lothian Guidelines
apps.nhslothian.scot/refhel...
NHS Lanarkshire
Review of patients on IM B12, includes treatment algorithm
nhslguidelines.scot.nhs.uk/...
Review due Oct 2023.
NHS Borders
I found a FOI (Freedom of Information) request for Borders Health Board that stated NHS Borders health board uses the BSH Cobalamin and Folate Guidelines.
This may have changed as not sure how old FOI request was.
NHS Greater Glasgow and Clyde B12 deficiency guideline
ggcmedicines.org.uk/blog/me...
A Scottish National Formulary (SNF) is in development
This will give recommendations on what drugs/medicines can be prescribed in Scotland and may affect what GPs can prescribe for B12 deficiency.
I believe at moment that the BNF (British National Formulary) is used in Scotland.
Petition to Scottish Parliament about B12 deficiency (covers period from 2011 - 2018)
parliament.scot/GettingInvo...
Click on underlined headings in link above for more info.
PAS Support Groups in Scotland
There was a PAS support group in South Scotland...think it needs a group co-ordinator at moment.
pernicious-anaemia-society....
There was also a Thyroid Support group in Kilmarnock which welcomed people with b12 deficiency. Not sure if this is still active.
healthunlocked.com/thyroidu...
CAB (Citizens Advice Bureau) Scotland - NHS Complaints
citizensadvice.org.uk/scotl...
PASS
Patient Advice and Support Service (Scotland)
careinfoscotland.scot/topic...
Local MP or MSP may be worth talking to if struggling to get adequate treatment.
Health is a devolved matter in Scotland.
List of MSPs in Scotland
parliament.scot/msps/curren...
List of MPs in Scotland
members.parliament.uk/regio...
Scottish Public Services Ombudsman
Hi Thanks for all the links I will read them all tonight carefully 
my recent folate test came back high, is that normal with b12 deficiency? As I thought it would be lower
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