What are normal B12 levels: Hi... - Pernicious Anaemi...

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What are normal B12 levels

Spellweaver1312 profile image
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Hi, wondered if someone can tell me if my B12 levels are normal at 216 and Folate 9.42 ? I have a whole variety of symptoms such as breathlessness, dizziness in fact I. Constantly walk as if I am drunk, vitiligo on my hands, thinning hair, really bad acid reflux, constant tiredness. I never feel as if I have slept at all as when I get up in the morning I'm tired agai, and a slow heart rate to name but a few

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Gambit62 profile image
Gambit62Administrator

Think its more important actually to be clear what normal means in the context of blood test results. Normal relates to statistically defined ranges - they are averages and that means there can be some pretty fundamental logical flaws if they are applied back to individuals without being put in a context that looks at how much the underlying population varies (generally measured by a concept called 'standard deviation'). If there is a lot of variation from individual to individual then applying the normal starts to become prone to errors of identifying someone who is okay as not okay and vice versa.

There is a lot of variation in relation to the serum B12 test which means that it will miss 25% of people who are B12 deficient but will also pick up 5% who aren't deficient if it is used as a single measure - so it needs to be part of range of indicators. Symptoms are very important as well.

Do you have the units/ranges that were used to measure your B12 - there are actually two different ways of measuring B12 concentration and they do have different ranges - on one you would be very close to the bottom - on the other your still quite low in the 'normal' range but you are a little way from the bottom. Basically that means that you stand a good chance of being in the 25% of those that the test will miss.

However, it's also true that symptoms of B12 - including those you list above overlap with a number of other conditions so looking at whether those (which would include thyroid and diabetes amongst other things) are present would also be part of investigating a diagnosis.

There are a few tests that can help to clarify if B12 is deficient - MMA and homocysteine levels will be raised but they will also be raised by other things so again, need to be taken in a context.

Sorry - that's a much longer answer than it should be - has been a long day :)

Hope it makes sense though.

Gambit62 profile image
Gambit62Administrator in reply to Gambit62

forgot to say - less variation with folate so unlikely that is a problem

Spellweaver1312 profile image
Spellweaver1312 in reply to Gambit62

Thank you for responding. I believe the unit used to measure my test was poml/L think that's correct. I had a thyroid function test and diabetes one last week, both came back normal

Gambit62 profile image
Gambit62Administrator in reply to Spellweaver1312

starting range for pmol/L is usually around 140, ng/L tends to start around 180-200 - so on that basis you are a way into the 'normal' range.

What has your GP said about the results - are they willing to look at B12 as a serious issue.

It may also be worth getting hold of your thyroid results and posting them on the TUK forum if not done already as they may have some comments.

healthunlocked.com/thyroiduk

diabetes is a pretty solid test so think we can at least cross that off the list :)

Spellweaver1312 profile image
Spellweaver1312 in reply to Gambit62

I got the thyroid ones done with medicheck so I can get them easily enough tomorrow. The GP has said he will consider retesting the B12 in three months but I will get one done through medicheck

Gambit62 profile image
Gambit62Administrator in reply to Spellweaver1312

if it is B12 you already seem to have neurological symptoms - the drunkenness when walking for one thing - don't think you should accept wait 3 months for another test but you probably need to write to your GP pointing them in the direction of the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which they can access through the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

BCSH = British Committee for Standards in Haematology.

Key facts:

a) Serum B12 is not a gold standard test. It will miss 25% of people who are B12 deficient (and catch 5% who aren't) if taken as a single measure.

b) symptoms are an important part of evaluating a B12 deficiency and, particularly where there are neurological symptoms, it is the symptoms that should take preference over the test results where there is a discordance

c) whilst macrocytosis (red blood cells enlarged and rounder than normal) is a common symptom of B12 deficiency it is not a defining characteristic and is not present in 25% of people presenting with B12 deficiency.

d) whilst PA is the most common cause of a B12 absorption problem there are many other possibilities. The test itself is problematic in that it will produce false negatives 40-60% of the time, so a negative result is a long way from providing persuasive evidence PA isn't the cause.

e) there is a risk of permanent neurological damage if B12 deficiency is left untreated for too long - hence the recommendations to treat on the basis of symptoms and not delay where there are neurological symptoms

f) there are two treatment regimes for treating absorption problems.

No neurological involvement = 3xweekly for two weeks followed by 3 monthly maintenance

Where there is neurological involvement the treatment regime is 3x weekly until there is no further improvement (review at 3 weeks) followed by 2 weekly loading doses.

Suggest that you also include a full list of your symptoms and details of how long you have had them - B12 deficiency can take years and even decades to manifest so you may have had some symptoms for a very long time without recognising this

pernicious-anaemia-society....

also point them towards the area on the PAS website that is aimed at health professionals and raising awareness of problems with current practice in diagnosing and treating PA and other B12 absorption problems

pernicious-anaemia-society....

suggest you write and then follow up with an appointment

Dewbuc profile image
Dewbuc in reply to Gambit62

This answer is absolutely spot on. With that B12 level and those symptoms you should be treated with im injections every other day until symptoms improve and then life time maintenance.

Occasionally symptoms may be irreversible, which is precisely why a therapeutic trial of B12 is, in my opinion, essential without delay. Of course any delay may well see symptoms deteriorate further.

A s a retired doctor and having seen my grandmother develop paralysis below the waist over a short time scale, I would not be prepared to wait for treatment to start.

clivealive profile image
clivealiveForum Support

Have you had your Vitamin D level checked Spellweaver1312 ?

Here are 8 signs and symptoms of vitamin D deficiency.

Getting Sick or Infected Often. ...

Fatigue and Tiredness. ...

Bone and Back Pain. ...

Depression. ...

Impaired Wound Healing. ...

Bone Loss. ...

Hair Loss. ...

Muscle Pain.

I can see you may have at least two of these

Spellweaver1312 profile image
Spellweaver1312 in reply to clivealive

Yes I did get my Vitamin D checked. It was 18 so the GP has given me tablets for it. Been taken them about 18 months but it's made no difference

Your Levels Are Low...With My Weekly B-12 Shots My Levels Are Now Approximately 1700...I Was In The Low 300's...I Have Been On Shots For Over A Year...I Was Extremely Ill...Had The Same Symptoms As You Plus More...I Had Mohs Surgery Due To My Levels Being Low...I Am Developing Symptoms Again...Have A Doctor Appointment In October & Was Told That I May Require Shots Twice A Week...I Was Diagnosed With Pernicious Anemia Which Is An Autoimmune Disease...I Also Have Osteoporosis...Fibro myalgia...Rheumatoid Arthritis...Usually When You Have One Autoimmune Disease You Have 3-4 More...Good luck

Spellweaver1312 profile image
Spellweaver1312 in reply to

Thank you all for responding. I have an appointment with my doctor for 3rd October couldn't get one before that and I have also sent off for another test with medicheck so I can be one step ahead for the doctor. :-)

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