I recently had my b12 tested with doctor and result was ‘normal’. I did a home test as I am concerned with symptoms I am having. The result was
‘‘normal at 93 pmol/L’
From my research I am thinking that this is low? Could anyone help with what this result means.
About 15 years ago I received b12 injections as levels were concerning but they were stopped after a few months.
Many thanks
I'll bet a big pile of cash that your home test was for 'Active' B12.
B12 in the blood is carried around bound to one of two proteins - HC or TC. The ratio is normally about 4:1
TC-B12 is the only type that can enter the cells, so it is called 'Active' B12.
The normal blood test measures both types. The 'Active' test only measures TC-B12, so it gives results about 5 times lower than the normal test.
93 pmol/L is well into the normal range for an Active test.
Thanks for this. Does this mean there is no need for further tests?
I have a lot of symptoms so feel very confused.
It is possible, but uncommon, to have a functional B12 deficiency. There is plenty if B12 in the blood, but not enough gets into the cells. You can test for this by looking at two chemicals used up in reactions mediated by B12 - methylmalonic acid and homocysteine.
Tests for hCys are complex and need to be done very soon after the blood is taken. So they tend to be done only in hospitals with a decent path lab. MMA testing is easier, so you're more likely to be able to get a GP to agree.
MMA testing can also be done privately - medichecks.com/products/met...
K would get a copy of the surgery blood test results and if possible anh other s of b12 in your past. For your record.
Were your folate results okay.
Iron vit d ect
Youd symptoms have a causes its the doctors job to find it.
Was your thyroid tested ?
I actually have an underactibe thyroid. They have recently reduced medication. I was talking folate tablets until October. Since then I have had tingling mouth and hands. Optician diagnosed dry eye and my now eyelids are flickering. The doctor think reducing thyroxine might help but I’d like someone to check thoroughly. Just unsure of which specialist to see.
Hi,
Some links about B12 deficiency that might be of interest...
I've assumed you're in UK. Some info may not apply if you're elsewhere.
Link about "What to do next" if B12 deficiency suspected or newly diagnosed.
b12deficiency.info/what-to-...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
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.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.
Point 5 also mentions functional B12 deficiency.
Point 1 is about under treatment of b12 deficiency with neuro symptoms present.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Above link has useful diagnostic flowcharts.
BMJ B12 article
Emphasises the need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
Guidelines below suggest anyone who has unexplained B12, folate or iron deficiency should be tested for coeliac disease.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Local Guidelines
Each CCG/Health Board/NHS Hospital Trust will have their own local guidelines on treatment and diagnosis of B12 deficiency.
I suggest you track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links.
I hope you are not in the area discussed in the blog post below.
b12deficiency.info/blog/202...
Vital to get adequate treatment. Untreated or under treated B12 deficiency can lead to permanent neurological damage. See links below.
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....
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 link in this reply for up to date info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
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)
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
patients-association.org.uk...
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Article suggests ....
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.
3) Successful treatment should not be stopped
I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.
See links below.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
This is so helpful. Thank you very much
Hi,
"I actually have an underactibe thyroid. "
Is the underactive thyroid due to auto immune issues eg Hashimoto's disease?
Having an auto immune condition increases the chances of developing further auto immune conditions.
PA (Pernicious Anaemia) and Coeliac disease are two auto immune conditions that can lead to B12 deficiency.
If your symptoms are suggestive of B12 deficiency, I would expect your GP to test you for at least those two conditions.
Is there a family history of auto immune conditions?
Has your GP screened you for other auto immune conditions?
"About 15 years ago I received b12 injections as levels were concerning"
Have you got any test results from this time?
What did your doctor think was causing your low b12 results 15 years ago?
I'm wondering if you were tested for PA and/or coeliac disease in the past.
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 but sadly some doctors are unaware 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.
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
May be worth putting your thyroid results on Thyroid UK forum on HU.
Thyroid tests
thyroiduk.org/getting-a-dia...
BSH Cobalamin and Folate Guidelines (UK document)
b-s-h.org.uk/guidelines/gui...
If you're in UK, might be worth checking if your GP is aware of the above document. The document mentions Antibody Negative PA.
Link below is to a summary of the BSH document which makes it clear that if symptoms suggest B12 deficiency, patient should be treated with B12 to prevent neurological damage even if serum b12 is within normal range.
pernicious-anaemia-society....
If you're not in UK, might be helpful to say which country you are in so people can post links to info specific to your country.
Link below mentions support organisations in some other countries.
b12deficiency.info/very-use...
PAS has several support groups in UK. No face to face meetings during pandemic.
pernicious-anaemia-society....
B12 Awareness (US website)
US link about PA
rarediseases.org/rare-disea...
B12d.org (UK charity)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA and B12 deficiency
B12 Deficiency Info blog
Films about B12 deficiency
Hi,
When I was diagnosed with a m under active thyroid they also gave me b12 injections. At the time I was in my late teens and if I’m honest didn’t really worry too much/ question it. They gave me a course of b12 and then they stopped.
Four years ago I did feel that b12 symptoms were showing again and the GP put me on folate tablets. I did query why I had been given injections but no one ever seems to explain.
I am no longer taking folate tablets as my levels are now normal.
Recently, I had bloods checked. Doctor said they’d do a full blood picture. The result was raised TSH levels so thyroxine has been reduced. B12 ‘normal’.
I am considering paying privately to see an Endocrinologist to try and work out what is going on.
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
How does it feel to have too much B12?
seeing neurologist, advice on b12 injections welcomed…
