Vitamin B12 confusion

That’s interesting because I have recently had the same advice! I have cut down to alternate days but I still don’t know why it is a problem and the DN was vague in the extreme. “That’s our guidelines”…

Potteron said:

I bought a HbA1c test from the shop on this site as I am in need of some motivation to get back on the low carb wagon after an indulgent Christmas. Did the test, posted off, a week later received the results for a Nutrition BloodTest with Drs notes . Not what I’d ordered or wanted !

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This sounds like something went wrong at their end.
I've looked it up and they sell both tests. If your test said it was an hba1c test it looks like you got the wrong results back, possibly someone elses results.

I'd contact the website to ask what went wrong here.
As for the B12, you can ask for it to be included in your next lab work, chances are your diabetes nurse/GP will be happy to do so.

Potteron said:

Yes, I've contacted them, I only paid for the £49 one and am a bit miffed that I've not had the results I actually wanted. Think they must have sent me the wrong test as looks as though the kit is the same just a different activation code .

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In that case they should send you the test again, what you paid is clear proof of what you ordered.

Nicola M said:

it would only be a concern if you weren’t taking a supplement of any kind and had high levels as this could indicate a potential issue.

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That makes sense! Thank you. Why couldn’t my DN have said that?!

There are two tests. One is active b12 (holotranscobalamin) which shows how much usable vitamin you have in your blood. The other much more common one is serum total b12 (colbalamin) which counts both the useable active amount and the unusable inactive part. The ranges and the units for these are quite different in most labs. The nhs currently only use total serum but the new guidelines coming in the next couple of months do include the use of active levels.https://www.nice.org.uk/guidance/GID-NG10176/documents/draft-guideline.

Food intake of B12 is water soluble and many organisations do not have an upper limit and state that excess is peed out, although others suggest very high levels MAY be associated with undesirable conditions (not necessarily caused by it).

As your levels are at the top of the range with just a multi vitamin I’d consider taking just those vitamins you actually need rather than a blanket tablet. The amount in there is likely to be small though. Do check anything else you consume though because a fair few “health” foods and drinks have b12 added. Personally I’d cut those but otherwise just ask for a repeat test later in the year. Or at least when you are 4months clear of any known supplements as it takes that long for them to clear your system

Over the past couple of years I’ve been using Thriva for other blood tests but have also been getting both my Active and Total B12 measured - so that I have a reference for when I finally get around to educating myself about it (feel free to impart any wisdom).

Anyway, Thriva use the healthy ranges of:
B12 (Active) 37.5 - 188pmol/L
B12 (Total) 258 - 569pmol/L

I’ve just had mine tested and the NHS use 145-194 as the normal range. My result was 146 and they have advised ‘insignificant, no action required’
I asked for the test due to symptoms so I shall start a supplement as I’d rather not be as low as that.

Well, just to confuse matters, had my latest draw of HBA1c blood checks.

My NHS B12 came back as 544.
So range used is the 180-900 standard as @Nicola M posts.

As for being High in active form, no idea, I never get that result.

However, while I had concerns & issue regarding mine at dx 235.so took supplements..(up to 335).

I too had a sabbatical,( enforced sadly ), so no lchf for close on 2 years ..and my B12 is now mid range, which suggests to me that at 60+ I'm getting enough b12 from my non lchf & Metformin free diet, to not need the supplements at moment, which was reassuring ...and likely you are currently doing the same.

So if it was me, if & when you go back on the lchf wagon & begin (?) taking Metformin, I'd suggest doing as @Antje77 says

Get b12 added to your HBA1c tests.
I asked and it gets added to each now, no problem. But it isn't unless you ask. (Which I think is wrong, given how Metformin is a known quantity in lowering b12 fir some )

And your post has taught me something new, as well...which is nice.

Every day's a school day on here

Good luck getting to the bottom of it @Potteron .

Potteron said:

Well, this thread has just confirmed to me that there needs to be a standardised measurement for all these tests, even within the active or serum B12 there seem to be many different units used. You'd think they didn't want us to take an interest in our own health

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Do you mean the ranges or units used to expressed results?

In terms of ranges, the machines used in labs to analyse blood need to be calibrated from time to time. On recalibration, sometimes the expressed ranges change. That isn’t because suddenly a different score is acceptable, but because calibration against a control substance show the machine to be reading a bit higher or lower than ideal.

EmmaLouise1 said:

I’ve just had mine tested and the NHS use 145-194 as the normal range. My result was 146 and they have advised ‘insignificant, no action required’
I asked for the test due to symptoms so I shall start a supplement as I’d rather not be as low as that.

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Not all nhs labs use the same lab reference range. (NOT NORMAL but often mislabelled as such) Mine has a lower limit of 160 and no upper limit.

They use different machines with different calibrations which is why you need to look at your results for your reference range. Also note the limits are about avoiding serious harm or death. They often don’t account for less obvious or slower side effects of “less than optimal” levels which are vastly different to “not dying” levels.

At 146ng/L you are definitely in need of more. In most areas you’d be on injections to bring it up. And you also need to work out why it’s so low to try and address the root cause. Is it a vegan diet perhaps or medications such as metformin or acid reducing PPI? Or could it be pernicious anemia or other malabsorption issue that oral tablets will mask but not solve? Depending on why it’s low what the best long term solution is.

Long term low b12 can cause permanent neurological damage so please push back and address it somehow.

Current nhs guidance https://cks.nice.org.uk/topics/anaemia-b12-folate-deficiency/
new guidance coming in the next couple of months https://www.nice.org.uk/guidance/GID-NG10176/documents/draft-guideline.

I use Medichecks for all my private tests, and I've tested twice as being "greater than" 150pmol/L for active B12 - which of course could mean 151, or 2000; I'd really like to know the exact figure, if anyone knows of someone offering a test that isn't capped like that...?

I've been on 2g of Metformin for 3 or 4 years, and I've never taken a B12 supplement. I've had serum B12 checked by the GP, and they say it was 'normal', but I forgot to ask for the exact figure.

When I initially asked the GP if they would test my B12 because I had the private test for active B12 come back 'high', he said, "What's active B12...?".

LonelyFatGuy said:

I use Medichecks for all my private tests, and I've tested twice as being "greater than" 150pmol/L for active B12 - which of course could mean 151, or 2000; I'd really like to know the exact figure, if anyone knows of someone offering a test that isn't capped like that...?

I've been on 2g of Metformin for 3 or 4 years, and I've never taken a B12 supplement. I've had serum B12 checked by the GP, and they say it was 'normal', but I forgot to ask for the exact figure.

When I initially asked the GP if they would test my B12 because I had the private test for active B12 come back 'high', he said, "What's active B12...?".

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Im waiting on a Randox test panel that I added active b12 too. I’ll update their range when I get it.

I’m fighting to get the nhs surgery I use to take my low b12, and others, more seriously. I’ve had progress and success with one dr and low ferritin so far. When I was arguing my case using the incoming guidance both the gp and haematology who she got advice from had no knowledge of active b12 interpretation - which is a bit scary since they need to use it in a couple of months time and haematology are supposed to be the experts.

LonelyFatGuy said:

I use Medichecks for all my private tests, and I've tested twice as being "greater than" 150pmol/L for active B12 - which of course could mean 151, or 2000; I'd really like to know the exact figure, if anyone knows of someone offering a test that isn't capped like that...?

I've been on 2g of Metformin for 3 or 4 years, and I've never taken a B12 supplement. I've had serum B12 checked by the GP, and they say it was 'normal', but I forgot to ask for the exact figure.

When I initially asked the GP if they would test my B12 because I had the private test for active B12 come back 'high', he said, "What's active B12...?".

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I know some aren't, but if you're one of the lucky ones, you can get your go results on line.

I like knowing my bloods
My B12 came back as ok
When I found out it was 225, and close to the lower limit I took action.

Luckily mine improved
As @HSSS points out low B12 can have a serious impact on our health..and long term as well.

Something best avoided if at all possible.

I was lucky I think to come across sally pacholok film & info.

Here she is in a audio interview.
Particular note at 13 / 25 & 26 mins for information re ranges and symptoms it can be confused with and some it can cause .

Lady interviewing for those skipping forward, thought she was either having a stroke or was going down the road to motor neurones disease .
Yep, it was B12.

Worth a watch for any concerned for themselves or family/friends showing symptoms.

The film makes the issues much clearer, imho



And for more info.