My blood tests came back normal - intrinsic factor normal,B12 levels normal. Private neuro recommended IM injections six years ago, again in November last year, never been introduced. I'm disabled, too sick to work, severe peripheral neuropathy, severe fatigue, muscle stiffness, pain etc. I have Hashimoto's, 100mcg thyroxine, everything else 'normal' (except low folate, deficient vit D, and very high cortisol - GP says he's not bothered by it) . Are my options now self administering without medical oversight, or can I have them done with private medical care? I'm feeling so hopeless ☹️
Normal IF test results: My blood... - Pernicious Anaemi...
Normal IF test results
Written by
MyrtleMac
To view profiles and participate in discussions please or .
Read more about...
21 Replies
•
Csn you get a referral to a specialist.Is your doctor doing all tests scans ect .
Second opinion. Perhaps?
Are you on b12 Injections?
I was prescribed IM injections six years ago by a neurologist, then I saw him again in November when he wrote again to my GP. They wouldn't administer, as I don't have low B12. I've had fluctuating ferritin, folate, iron, B12 and D since I got sick eight years ago. Neuro was treating my PN as a symptom of B12 deficiency irrespective of blood test, but GP wants evident deficiency. Because the neuro was private (though he works for the NHS too) they won't follow his lead. I've had MRIs, etc, for possible MS. I've been told the NP was idiopathic by other neurologist, while the private one suspects it's malabsorption related to Hashimoto's (ie, probably hidden pernicious anaemia).
They tried to stop my b12 prescription as neurosis advice 'out of date' Only in 2020.
They emskkedca random neurologist who's never met me for advice.
To my amazement he condoned present registration.
I think gps hyst covering their backs as no knowledge.
Ask agdin.
I've seen 3 neurologists NHS and private.
Keep pushing for what yoh need.
Your GP is an idiot. There is zero reason to keep monitoring serum levels once deficiency is established without a reason for poor absorption, the first time around..
You are going to read your own post a year from now & wonder why you did not give up on them sooner. And look after your own injections & injection schedule.
Hi,
You may be able to find a private GP who can give B12 injections for a cost.
Some on the forum resort to self injection and there are threads about this. To me it's a last resort but I had to after NHS refused treatment. It's a lot cheaper than getting them from a private GP.
I had 50 plus typical symptoms with many neurological problems, dementia symptoms and other body systems affected but apart from one below range B12 result (was only given 5 or 6 B12 injections then nothing), my serum b12 results were between 300 - 500 ng/L.
Unhappy with Treatment (UK info)?
How about writing a letter to GP and maybe copied to the neurologists?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link has letter templates covering a variety of situations linked to B12 deficiency.
Point 5 is about being symptomatic for B12 deficiency with an in range serum (total) B12 result. It also mentions Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops symptoms of B12 deficiency.
NHS link below mentions functional B12 deficiency
nhs.uk/conditions/vitamin-b...
NHS Complaints
patients-association.org.uk...
Care Opinion website
Local MP may be worth talking to.
Have you thought about joining and talking to PAS?
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....
Does your GP know it's possible to have Antibody Negative PA.
Some people with PA have negative test results on IFA test.
Perhaps you could show GP some info on Antibody Negative PA.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
Your private neurologist seems more clued up about B12 deficiency.
Does he know someone who can provide private B12 injections?
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-...
NICE guidance Suspected Neurological Conditions
NICE guidance - when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist
I'm sorry to hear that. Between my sister & myself, we've had about 6 negative IF results. My mother went and on her first try got a positive result. We've all been SI'ing for ages without any 'medical oversight' though my sister did find a functional doc that believed her despite negative test results, and now prescribes it for her, and my mother did finally also get b12 prescribed after her positive test. So that just leaves me going at it alone, but after 6 years of daily SI and getting my life back, i don't regret it for a single second (and neither do my mother & sister while they were SI'ing). Actually they both still SI daily but with a prescription, in the US.
In my opinion there's not much oversight a doctor can do anyway, as long as you're injecting as frequently as needed, tracking symptoms, and you get periodic endoscopies & blood tests.
All of us also had 'normal' b12 levels. Injections/SI saved us. I have zero doubt i'd be dead by now if i hadn't started on my own. Half my arm from fingertips to elbow was numb on both sides, not to mention the burning everywhere else &severe cognitive decline. Blood tests don't tell the whole story.
It's possible that some of your doctors have misconceptions (wrong ideas) about B12 deficiency.
Some links I post may have details that could be upsetting.
B12 Deficiency Misconceptions
B12 article from Mayo Clinic in US (aimed at researchers/health professionals)
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...
UK blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
BNF guidance on treatment has changed since this blog post was written.
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
There may be some useful quotes from these documents you could include in a letter to GP/neurologists.
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines
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 outline stwo patterns of treatment for B12 deficiency
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
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.
You mention low folate, are you receiving any treatment from GP for that?
Vital that in a person with B12 deficiency and folate deficiency, both deficiencies are treated.
Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems. B12 treatment would be started first in someone with both deficiencies.
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
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. Worth tracking down the local guidelines for your area of UK and comparing the info 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.
Read the blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines.
b12deficiency.info/gloucest...
More about symptoms
Do your GP and neurologists have a list of all your neuro symptoms?
See lists of symptoms below.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
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.
May be worth discussing in a letter to GP/neurologists that under treatment of B12 deficiency can lead to spinal cord damage, SACD.
Letters are harder to ignore in my opinion. Keep them short, polite and include evidence eg quotes, symptoms lists that back up what you say. Good to have a paper trail in case you need to make a formal complaint. Keep copies.
I'm not medically trained and I'm not saying you have SACD but I am saying that your GP and any specialists you see , should be aware that SACD, sub acute combined degeneration of the spinal cord is a potential consequence of B12 deficiency especially when under treated. Discussing SACD with them may make them take more notice of you.
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....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Maybe your GP would find the PAS article on SACD useful?
You would need to be a PAS member to access it.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
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, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
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.
I have PA missing intrinsic factor my new GP told me to but a bottle of iron tabs and B12. After many letters from my gastroenterology consultant he finally gives me one injection a month. It's not enough I buy the rest. Your message was very informative thsnk you
So sorry you are so wrongly treated. Please do try giving yourself jabs. It is so easy , really.There are many posts about this ,already given to you. I was helped so much by this forum.
Have been DIYing for a few yrs now.
Sooooo much better than I was.
Be brave, good luck.👍💉
Thank you, everyone. I'll read through the links over the next few days. My GP is sympathetic, so if I arm myself with info he might just agree a trial. My neuropathy is awful just now (always worse in very cold/very hot, humid weather) and nerve pain in shoulder has spread to my neck, so I'm feeling really depressed at the moment. I'm up for self injection if the GP won't/can't do a trial. I will try anything for relief. Many thanks again.
CherylclaireForum Support
It is probable that the neurologist came to the conclusion that you need B12 for peripheral neuropathy because he had ruled out everything else that it could be, to the best of his knowledge.
I'm wondering how "normal" your B12 levels have been. This judgement seems to depend a lot on where you live. Can you get a copy of your previous test results and range ?
I'm also wondering whether your methylmalonic acid (MMA) was ever tested. If B12 and MMA don't link together, they cannot reach the cells and tissues where they are needed.
So if there is a B12 deficiency, MMA can start to build up in bloodstream, waiting to make a link-up. This very quickly will resolve, and MMA levels return to normal, once B12 replete- so testing would normally be pointless after B12 injections start.
But it can also be the case that, despite plenty of B12 to form a link, the link just isn't able to be made due to some malfunction in the process - this is functional B12 deficiency. Might be worth knowing. Renal problems need to be ruled out (blood test) and small intestine bacterial overgrowth (SIBO) can also be a cause of high MMA levels. This could be eliminated as a possibility too, by a breath test.
Autoimmune conditions are often seen in pairs (or more !) and Hashimoto's seems a common pairing to pernicious anaemia (PA), from what I've read. Family medical history might give more of a clue. A normal intrinsic factor antibody test (IFab) is not conclusive proof that you do not have PA, and medical guidelines state that it is possible to have PA (IFab neg). 40 - 60% of those with PA test negative. Martyn Hooper, founder of the Pernicious Anaemia Society, had three tests before he had a positive result. Because this is possible, a definitive PA diagnosis can be hard to get.
There isn't any reason for you to continue to deteriorate - suggest a trial of B12 to see if this would make a difference. It is not harmful and is inexpensive, so no reason for a GP to object, as nothing else has been found to be the cause of your symptoms. If your doctor needs persuading, probably best to quote from medical guidelines: NICE, BCSH (haematology) or BNF (British National Formulary) - which is the book they have on their desk usually (or is that a bit old-school now ? )
BNF suggested treatment for those with initial neurological deficit (you) :
"....patients presenting with neurological symptoms should receive 1000 ug intramuscularly (i.m. on alternative days until there is no further improvement."
Bear in mind, if negotiating a trial with your GP, that this is the advice given regarding frequency and that nerve damage takes a while to repair. Hopefully, this will allow you both to see improvements.
Worth keeping a daily record of symptoms.
Good luck
"Worth keeping a daily record of symptoms."
I agree with this suggestion. I would like to add the further suggestion that the record include any improvement, but also the limitations that remain.
Yes - very good point. Some give symptoms numbers out of ten for severity - guess that might be a quick way of showing no change, or a more positive very gradual change, plus any "blips".
Thank you, I'll take a note of that! My total B12 was 351 (range 145-569). My D was deficient (though I've been supplementing daily for years), and ferritin was low at 17.7 (range 13 - 150). Cortisol was too high 549 (range 166 - 507) but GP decided that wasn't high enough to bother about.
Mid to low 300s was also exactly where my b12 levels were for years. They'd go up on tablets and fall right back down when i'd stop. I was on 1000 mcg b12 tablets daily for years and still developed the numbness, neuropathy, and paresthesias. I wish there was better scientific understanding about this phenomenon, but there isn't, yet, unfortunately.
That's pretty much me - ton of neuro symptoms (diagnosed as possible MS for five years) but the peripheral neuropathy wasn't seen as part of that - multiple opinions, idiopathic, Hashimoto's, whatever. B12 connection was picked up by one neuro because, like you, my levels go up and down despite supplementation with an oral spray. Recommended treatment never tried. I might write to my NHS neuro one last time and ask him to prescribe IM injections - GP may listen. May not 😑
Worth a try! And worth citing relevant passages from the paper 'The Many Faces of Cobalamin Deficiency' i think sleepybunny gave you the link. Good luck 🙏
"ton of neuro symptoms (diagnosed as possible MS "
Misdiagnosis of B12 deficiency as other conditions
Not what you're looking for?
You may also like...
IF and celiac test results 'normal'
tests on the NHS for Intrinsic factor did you get details of test or just told normal?
I have two...
B12 deficiency symptoms but doc won't treat as test results normal
levels fall within normal range and the other tests were ok showing blood cels normal size etc,...
Could my son's \"normal blood test\" results be pernicious anemia?
is otherwise healthy but is unable to engage in normal activities even one's he would find...
Antibody test was normal...
said my B12 is very low but my antibody test was normal i am starting B12 jabs next week. does that...
new b12 results showing NORMAL
wrote to the group that my serum b12 was 365 and folate 2.5. feeling very poorly for years as i was...
B12 very high with normal blood results?. 
B12 test doctors and told normal
Normal B12 test - could I have a deficiency?
Active B12 test results
B12 and Folate test results
