What is the minimum level for Active B12?
Does the usually quoted 150-200 odd, normally used in the UK NHS, refer to Total B12, or Active B12?
I am waiting the results of a private Active B12 test from Medichecks and would like to know how to interpret it.
You get a range with your online report from medichecks Ernest and this will tell you what level your at .
As far as I know nhs just tests your serum level not your active level.
I’m sure someone more experience will be able to give you more advice.
If the online gp thinks you need further tests ie an MMA test done they usually tell you in your report.
I believe the Medicheck Active B12 normal range is 25 to 165 pmol/L, with an intermediate range of 25 to 50 pmol/L. If you fall in the intermediate range then I think they offer an MMA test.
Because only about 20% of the B12 in your blood is 'Active' B12 the range will be lower than for the NHS tests (which are, by default, serum B12).
Thanks. Just after I posted I found another post which talked about St Thomas doing the active test test and using 25 to 70 for active B12 as the intermediate range where an MMA test is advisable.
The more I look at this topic (after being refused my normal 3-monthly B12 injection (about 4 weeks ago) the more I think that the whole medical profession is hopelessly confused and/or woefully ignorant about it.
And I may have been under-treated for the last 5 years or so, as I show many of the mental and physical symptoms listed on this site, of low B12/High MMA. I have never been informed about these other possible symptoms by my GP.
When I was first diagnosed about 15 years ago, there was nowhere near the amount of information available as there is now, and since I am now 70, I am much more likely to have lower B12 levels than when I was diagnosed.
The fact that two labs use two different ranges does not indicate confusion or ignorance. Different labs will use different machines with different assay methods. Read this, from Hull and East Yorkshire NHS Trust. It explains how they reached their ranges for the serum B12 test done in their labs. hey.nhs.uk/wp/wp-content/up...
Have you thought about abandoning all the testing and to take your treatment into your own hands by self injecting?
Sorry, the "topic" I meant was the whole topic of B12 deficiency and its treatment, not just values of acceptable test results.
The difference in values is hardly statistically significant, particularly with the possible complication of recent treatment, and the inaccuracy of the test. To be really significant, I should have no treatment for a period of 6 months at least, I would suggest, to get anywhere near a "true" reading, and then this would not improve the accuracy of the test itself anyway.
The confusion and ignorance I was commenting on was things like statements that a years supply of B12 is available from the liver, until recently in a published guidance document, and the fact that the difference between a poor diet and poor absorbance of B12 still seems to be a mystery to some GPs, etc, etc , etc.
Just look at the complaints on these posts on how ignorant many GPs are, and how they seem to refuse to be educated by well-informed and widely read lay persons.
And the intended switch to high-dose daily B12 tablets rather than regular injections appears to be wholly driven by financial considerations, and some papers actually boast about the fact!
That is not to say all posts are necessarily completely sensible. I find it very difficult to believe that anyone should really need to regularly inject every day, or every other day or even once a week. It really does look like the operation of a placebo effect to me, but then I have never really suffered as much as other people seem to.
So what do I know...
My active B12 came out at 140 by the way... so I may have to pay for my own MMA test for complete peace of mind.
If you've not suffered from the effects on the body of extremely low b12 over a prolonged period you really should hold back from making comments about a placebo effect. At the moment I cannot go longer than weekly injections without symptoms starting to return, I don't know why and would dearly love it to be otherwise but I do know it isn't a placebo effect.
See comment by Cherylclaire - this seems to be different from "traditional" PA caused by lack of intrinsic factor. healthunlocked.com/pasoc/po...
I had my B12 active levels checked only last week with medicheck and I fell into the normal range which was
37.5 to 187.5
So I'm guessing anything lower than 37.5 then you may have to seek further medical advice etc.
Hope this helps.
Yes, mine was 40 and no comment was made.
The recommended NHS treatment for a B12 deficiency caused by an inherited metabolic functional problem transferring B12 in blood to cellular level is 2 injections weekly.
This has nothing to do with placebos. It is an acknowledged treatment frequency.
My own GP, on the advice of medical experts, restarted my loading injections and continued to ensure that I had 2 a week for 6 months, when I again deteriorated, and was sent to consultants as it had by then gone beyond the remit of primary care.
So there are some people who need more injections than others.
This had become so obvious to the Pernicious Anaemia Society that they have begun research into this subject. The trial tests proved a very clear difference exists between the groups - and hopefully the research will continue in the future.
If you regularly read posts here, one thing will become evident: we are not all the same, there is no specific B12 level at which we all become the same and there is no symptom blueprint. So why would a standard treatment frequency work well for all of us ?
If you are lucky enough to find that the usual NHS frequency of an injection every 2-3 months works for you, that does not mean that this applies to all of us.
Ok - This seems to be a different problem from "traditional" PA caused by lack of intrinsic factor, or absorption problems in the stomach (lack of parietal cells - is that right? - I seem to have read about it somewhere in the huge raft of stuff available via this site)
If what you have is an inherited metabolic functional problem that stops active serum B12 being used properly or somehow destroys it, that is a different matter. That was the difficulty I was having understanding the very frequent injection regime. I was not aware that such an affliction existed, and it seems the medical profession and indeed the PAS were relatively unaware of it until recently. Let's hope some more research is done soon, but I'm afraid it might be a case of don't hold your breath in the current governmental climate.
I was diagnosed so long ago, I didn't even have any loading injections, just 3 monthly from the word go. And a period about 15 years ago where I had a blood test only every 6 months to assess B12 levels. This lasted for about 18 months before injections were started again. But now I am well over senior citizen age, I expect that my condition has worsened considerably, but so gradually that I haven't noticed
The research being carried out by the PAS is currently only using subjects who have had a cast iron pernicious anaemia diagnosis (so hugely traditional ) - aside of course from the healthy control group.
Being unable to cope with a 2-3 month injection regime is widespread, not confined to those with functional problems, and a medical source has been acknowledged because of clear evidence in results during the trials.
Let's hope that this puts an end to talk of placebos eventually. Sheer weight of numbers alone would make that theory highly unlikely. Why do you suppose the PAS would want this research done otherwise ?
Showgem is right- your B12 deficiency, whatever the cause, will present differently to another's: this does not mean that there exists a "real" B12 deficiency. This is true of all conditions. This one has the potential to affect every cell in your body - which is why presenting symptoms can range from hair loss to inability to walk to cognitive impairment. This is not what GPs learn in training - which is why it is difficult to get a diagnosis. It also demonstrates the unlikelihood of a useful single treatment regime.
Some here have a PA diagnosis, some are waiting to get a diagnosis (some will have to wait for over 10 years), some have given up with the endless round of tests and consultants eliminating all else, and some will have an unsupportive GP who will not bother to get a diagnosis for the deficiency. Just another vitamin after all. These are probably the same GPs who believe as you do (did?) - that if you need more than the NHS frequency, you are imagining this need.
There is no reason that I can think of for blood testing for B12 after treatment has started other than to ensure that the injections are working and the B12 level is very high, should there be any doubt.
My GP did this at the start of 2016, when my symptoms got very much worse when having to wait 3 months after the loading injections. She got B12, renal tests and MMA tested - B12 over measurable amount (2000+ ng/L), MMA was raised, renal tests fine. This was when she diagnosed functional B12 deficiency, confirmed by the lab.
Otherwise, guidelines for GPs advise against testing serum B12 levels after starting treatment.
Allowing someone to deteriorate by withholding treatment -in order to ensure that they still have an incurable lifelong condition ? The reason for the guidelines being issued, I'm guessing.
My GP has never tested mine again since- but keeps a check on folate, ferritin, vitamin D, thyroid- all of which can be affected. It took a couple of years for folate and ferritin to increase and stabilise at more useful levels, vitamin D3 is on prescription because osteoporosis of the spine was found. Thyroid struggled for a bit, but okay.
I'm not holding my breath. I'm self-injecting every third day, because my symptoms get worse if I don't and I need to be well enough to keep working. I first went to the GP five years ago and have yet to have a symptom-free day.
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