Optimum levels of b12: JUst going... - Pernicious Anaemi...

Pernicious Anaemia Society

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Optimum levels of b12

Sallyannl profile image

JUst going through optimum levels of B12, came across several websites that state in Japan and the rest of europe states that 500 to 1200 are the optimum levels. Anything below 500 is classed on borderline low.

In our area 180 and over is normal. ...... Normal for who ?

Even getting B12 Injections is impossible !!

21 Replies

It’s just crazy for anyone to make such definite hard and fast statements about “optimum “ levels of B12.! It’s SYMPTOMS that are the best yardstick . Some people with low levels of B12 feel fine and do not suffer with B12 deficiency . Some people with so-called” optimal” levels have B12 deficiency symptoms , and need treatment . Such hard and fast rules lead to much suffering and misdiagnosis . … Yes Pernicious Anaemia is often tricky to diagnose, because symptoms overlap with other conditions . Old-fashioned medical detective work is needed . ….. which seems to be a rarity nowadays , sadly . “Even getting B12 injections is impossible” . That’s why I had to resort to self-injecting B12 to keep well. When you are feeling very unwell with B12 deficiency ( I had aP.A. diagnosis from a positive IFAB test ) it’s just too difficult to argue with a doctor who doesn’t understand P.A. Self injecting is easy , chealnand so convenient . Anyone needing information, just speak up .

Sallyannl profile image
Sallyannl in reply to wedgewood

I assume that optimum level in this case refers to people abroad who b12 is tested and treated straight away if level is below 500, therefore not causing irreversible nerve damage. ONce nerve damage has occurred then that's another concern, and levels must be above and beyond recorded levels.

Apparently that is not true in Japan. It's come up before on the forum . Admins will comment I'm sure

A recent paper with contributions from Germany, Greece, and the UK, quotes their reference interval for B12 to be:

Vitamin B12 (pmol/L) 145–569 pmol/L

Which rather undermines the claim that 500 is always classed as borderline low. (Though numbers would be towards 50% higher if using pg/mL.)

Vitamin B12 Supplementation in Diabetic Neuropathy:

A 1-Year, Randomized, Double-Blind, Placebo-Controlled Trial

doi.org/10.3390/nu13020395

Sallyannl profile image
Sallyannl in reply to helvella

You can understand now all the conflicting reports/misunderstandings regarding b12.

Gambit62 profile image
Gambit62Administrator

Optimum is what is best for a given individual - and B12 serum levels are a very personal thing. It is important NOT to think that everyone needs levels over 500.

It is important to REALISE that symptoms are important in diagnosis.

The situation in Japan is that people will be treated if they are symptomatic and levels are below 500 - even then I don't think this is always the case in Japan and there are going to be people there who don't get the treatment they need.

In the UK best practice is to treat on the basis of symptoms if there is a discordance between test results and clinical presentation. However, this often doesn't happen because of the myriad of competing and inconsistent and well out of date local standards. I suspect this isn't unique to PA and B12 deficiency.

Normal range means 90-95% of people will be okay at that point but it doesn't mean that a given individual is okay because they are in that range - it also means that 5% will actually be okay outside the range, ie some people will be okay with serum B12 levels below the normal range which is why symptoms are so important. It would be good if labs explained more accurately what the significance of a result within the normal range is in terms of diagnosis and the difficulty of interpreting it after injections but that doesn't mean that GPs would actually stop to read the notes. It would be useful if GPs understood what the normal range is and what its significance is.

As ever, serum B12 is more useful for diagnosing an absorption problem where B12 is monitored over times - falling levels being the red flag showing an absorption problem.

Sallyannl profile image
Sallyannl in reply to Gambit62

Symptoms are what led me to my partners problems, originally they were 120 to 130, on b12 tablets they crept up to 300+ (4 to 5 years), but and it is the but now he wasn't just falling asleep, there were numerous symptoms, sciatica pins and needles, and total personality change. I would think it was more likely to do with the length of time he was low and age!Reading notes or having one (family doctor) who knew

More about you would certainly be advantageous.

Going from dr to dr doesn't help ....

My GP in India who had a special interest in B12 deficiency (and bearing in mind it was Southern India where the majority are vegan so she saw a lot of it), told me that she had found that keeping levels around 1200 - 1400 were optimum levels. I'm so grateful that she guided me through that first couple of years when my initial level was 129 and I could barely get out of bed. She literally gave me back my life.

Yes, I was treated initially by an indian doctor in the UK ,And thankfully when I had injects stopped I wrote to the surgery putting them in contact with him, they then reinstated my injections to monthly. So I am eternally grateful to him.

Thank goodness for these knowledgeable Doctors. She gave me back my life.

MoKayD profile image
MoKayD in reply to karenhath009

That's interesting. My doctor says he likes to see his PA patients keep their blood levels above 1000.

If b12 is not toxic - can we presume its ok to err on the side of caution and not worry about the higher level if we know its not going to harm?

Sallyannl profile image
Sallyannl in reply to Luac

Personally I think the many that make comments on here self inject, many not monthly or weekly but even every other day. They are still alive going around there business and enjoying life, if it was toxic would they still be alive !It's a personal thing, If injecting keeps them healthy and fit why not.

Luac profile image
Luac in reply to Sallyannl

I also SI and have no worry about overdoing it. I did every two days for six months without negatives and we know about that 50 year long study following frequent supplementers.

Midnight_Voice profile image
Midnight_Voice in reply to Luac

If B12 was toxic, then they would hardly give massive amounts of it to someone presenting with cyanide poisoning; but that’s what they do, as the B12 binds to the cyanide (hence cyanocobalamin) to neutralise it.

So B12 is not just not toxic, it’s literally a lifesaver.

As it is, perhaps more than just figuratively, for those who SI

Luac profile image
Luac in reply to Midnight_Voice

Absolutely, the difference it makes to my life is night and day. B12 deficiency is a terrible thing. I worry too much about those who suffer it unnecessarily 😞

Sadly my gp has stopped my injections as my b12 levels were 900. In his view i am not B12 deficient . I have a blood test next week to check levels again but fear if B12 is above 200 he will not let me have them.

Luac profile image
Luac in reply to Natterjack2

Hey Nattrrjack2, that cant be the case in the UK and goes against NHS guidelines.

It is worth reaching out to your practice managers to request they review their b12 deficiency and pernicious anemia practice in light of fairly recent changes in NHS/NICE guidelines.

I had to do that, they agreed in writing that treatment would not be based on blood tests and that I should get injections every two months for rest of life.

It was all very amicable, but it was difficult before then. I was informed by an alarmed doctor that excess b12 is toxic, treatment was stopped and six months later it was worse. I was told that my symptoms 'werent neurological enough' to be referred to a neurologist as per the guidelines. I had pins and needles in both hands every day, Im a music teacher so you can see how that was problematic. (I havent pressed on seeing a neurologist, the tingling is gone with the b12 injections and ive not heard positive experiences re neurologists here, but I imagine if you did have positive experiences youd be less likely to be posting here!)

I have had b12 injections for 14 years and feeling v frustrated. He just will not budge despute me saying i had been diagnised with pernicious anaemia in 2008

Have you any proof of diagnoses, letter from the NHS etc.

Write to the practice manager.

If all else fails consider self injecting, once you get use to it, it is a life changer, no more hassle arguing your case, and quite cheap. I just bought 100 ampoules for £66.14 including postage, then you need syringe and needles.

Around £1.50 all together per injection. ( less than petrol to get to the surgery!)

Please try to remember that we are a multi-national group and normal to abnormal numbers can be misleading to others unless you also supply the reference normal ranges of the lab and country. In the USA, "normal" serum level is generally between 190 and 950 picograms per milliliter (pg/mL). My hematologist still periodically checks my serum level, knowing that I take daily injections. It is always >2000. He knows the results are meaningless but does it for documentation. So please try to remember to post your lab reference ranges. It helps keep things in proper perspective for everyone regardless of what part of the world we live in.

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