So usually when test are done, NHS and BlueHorizon results for B12 are measured as serum B12.
Had last test by Monitor My Health, their result listed it as Active B12, the range 40pmol/L to 320pmol/L result >300pmol/L. Won't be using them again, my ADHD/autism head doesn't like the way they list results. No numerical ref ranges, and a "it's in range, it's fine " attitude, I did query it and their response was sort of , we don't provide numbers.
When I had it June 21 it was 354 ng/L serum b12 folate2.7ug/L. Started SI and supplements got 2000.0 ng/L serum B12 and 12.6 ug/L serum folate last year.
I have just got all befuddled and couldn't find my previous posts to try and check, so what are the ranges for both serum and active and within those ranges what are actually optimal levels.
Going to order with BlueHorizon again soon in another 4 to 6 weeks so can check everything again.
This doesn't really make any sense so much info so many rabbit holes to disappear down.
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Polo22
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was the 354 serum b12 result from a test that you had before any injections?
The 2000 is normal and not accurate.
Once you start injections, the serum b12 is no longer accurate because it is skewed by the injections. This testing serum b12 is pointless. You have to stop injections for 3 or more months before the levels will normalize and within that time if your body is simply not metabolizing b12 from the foods you eat (meat), then it's a waste of time to stop because your b12 stores will start depleating again.
The doctors don't understand b12 deficiency very well.
This article points out the common misunderstandings about b12 deficiency on the second page and then backs them up through documented clinical experience.
1- not treating a b12 deficiency can cause permanent damage.
2 - you can be within range and deficient
3 - frequent injections are needed until the symptoms go away. I inject daily and it's been 2 years. Every time I tried spacing out the injections my symptoms came back.
Thus don't let anyone convince you to space them out, or what I did was play their game but asked to be trained how to self inject (SI), then bought my own supplies and no longer have to argue with anyone about treatment.
I had a neurologist tell me he treats anything below 600 serum b12.
I started having symptoms at 600. I ended up at 190, and got told I was fine despite being practically bed ridden.. Thanks to the help on this forum I am doing so much better.
I don't have access to active b12 but others will chime I here I'm sure.
Hi yes the 354 result was before injections. My GP is most definitely very firmly in the , in range is normal gang. It was the usual story going backwards and forwards with lots of symptoms and being fobbed off with, it's your age, it's menopause, lose weight, etc etc. When I eventually threw my dummy out the pram and stamped my feet I got a lot of bloods checked. Found a few deficiencies , also have thyroid issue and can't get any appropriate tests or treatment from GP. Hence having repeated blood tests , more to keep track of vitamin and mineral levels, folate and thyroid. B12 tends to be included in most of the test packages even though I know it isn't relevant now. Would be lost without the knowledge and support on here and thyroid pages, so thank you
Usually the ranges are but Monitor my Health display the results on strange little coloured graphs, underneath which they give a numerical result value. No reference ranges, I did query this but they state they don't supply ranges, 😱
I did print them out, no ref ranges though. I did get result numbers just not their reference ranges, and was confused about the B12 result being listed as active, surely they'd have charged more if it was 🤫
Our anaemia tests do not have reference ranges. Instead, we have cut-off values below which a measure can be considered low. These cut-off values follow the recommendations of the British Society for Haematology.
Haemoglobin: below 120 g/L for females and below 130 g/L for males indicates anaemia
Ferritin: below 15 ug/L suggests iron deficiency
Transferrin Saturation: below 16% suggests iron deficiency
Folate: 3 ug/L or below suggests folate deficiency
Active vitamin B12: below 38 pmol/L suggests vitamin B12 deficiency
It took a lot of arguing and foot stamping to get tests done by GP. Then they didn't want to repeat tests as per NICE guidelines after folic acid, (not folate) vit D , iron etc. Even after pointing that out to them. So usually just get lot done on BlueHorizon. Lucky to get yearly thyroid bloods and of course even then the tests are pointless as T3 not included. They really have no idea do they 😢
I now think that, once you know you have a deficiency and/or PA, it is the symptoms that are the yardstick, regardless of numbers. I've reached the point where I no longer completely trust tests or number ranges. What tests can't do is tell me what the bio-chemistry of my particular body is doing. Only I know that from how I feel and what I'm able to do in my life.
I agree with other posts above - there is no point in testing B12 levels (active or serum) once you are having injections. The b12 serum tests cannot tell you what is happening with B12 at a cellular level in your body - they just show that you are having injections.
MMA and homocysteine tests can tell you whether your body is metabolising / using the B12 adequately - but these tests are expensive, and they can’t usually be requested by a GP. In my personal experience, the value of these tests is also somewhat limited, in pragmatic terms - despite being on B12 injections, I have persistently raised MMA levels (nearly twice the upper limit) - I was told this was in keeping with Functional B12 deficiency.
However, at a pragmatic level. this has made no difference to treatment received - GPs do not tend to understand what this is, so I have still faced the pressure of GPs wanting to reduce / stop injections. I was also told by a hospital consultant that this magnitude of raised MMA wasn’t considered a problem - but I disagree with this view, due to the experience of the symptoms that I have.
So what I am trying to say is that while it may feel important to try and seek tests that get to the bottom of things (regarding b12 levels or MMA etc), the bottom line is that we are always up against a medical system that does not recognise (or understand) these things, and will consequently always exert pressure to try and limit the treatment it offers for B12 deficiency (except in a very very few exceptional cases of GPs who understand that a greater frequency of treatment is needed).
I have realised that ultimately, until that point in the future when research and clinical practice has caught up with what we all know, understand and experience on a daily basis, then it is up to the individual to establish their own treatment needs (and frequency), when it comes to B12 deficiency. I am not a medical professional.
Yes at first was going to look into MMA and homocysteine, but GP won't and would be a waste now injecting. Tried to get them to look into high cortisol once and I swear I could hear his eyes rolling 🤭, should have seen his face when I asked to be referred to an NHS Endo
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(( Yr profile page is also accessed from here: healthunlocked.com/pasoc/po.... Hope that works OK, . . . but in any case the way in the 1st paragraph will )).
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