There's some research from this week that suggests the test for Active B12 (holotranscobalamin) might not be the answer we've been looking for - 7thspace.com/headlines/5244...
There was only one subject on the test, so it's by no means definitive, but they did find that the Active B12 test was no better that serum B12 or total homocysteine at tracking B12 deficiency. And the Methylmalonic acid (MMA) test was better than all of them
Not sure that that's entirely new - have been aware of it for over a year. Its part of the rational for the NHS not offering active B12 test.
It says it was published on 25 Feb.
Sounds like it was probably following up on suspicions though difficult to draw any conclusions from a population of just one ... though I have to say one very brave individual. I don't think I would be prepared to go without supplementing for an experiment like that.
One subject studied! Hardly credible research then surely
No problem with the research - just that it would be invalid to draw much by way of general conclusion from a sample of one. However, if they hypothesis you are testing is that active B12 can be used as a definitive guide to treating B12 absorption problems it's quite decisive in proving that that isn't the case.
Of course it's credible. It's not like I hey tried to hide that fact. Small studies are important because they're fairly easy, and relatively cheap. to do. Yet they can indicate areas that would benefit from larger studies.
And it's infinitely better than a study with zero subjects.
I've never had a low serum B12 test, and the one Active B12 test I had showed a high level too. (I also have good levels of folate.) And yet I had loads of vitamin B12 deficiency symptoms.
Eventually I started supplementing with methylcobalamin 5000mcg per day as an experiment. And surprise, surprise my B12 deficiency symptoms started disappearing quite quickly.
I don't know what kind of testing could have identified the problem I have with B12. Personally I suspect I have antibodies to something vital for metabolising B12. But I suspect I'll never know.
I recently reduced and then stopped my B12 for a few weeks. My symptoms started coming back again fairly quickly. I then went back on the B12 and the symptoms are now abating. So I'm convinced the first improvement I got was not a coincidence and my problem is definitely B12 related.
I would say that B12 testing is still in its infancy and has a very long way to go before it is reliable and identifies more of the problems that people can have.
Edit : Apologies. I had to edit this post several times to make it make sense!
Good morning humanbean . i wonder if i could ask what brand & where you get your methylcobalmin? from. i have been taking cyanocobalamin that after reading your post this morning and help from Mr google i find i am not taking the best B12.hope this post makes some sense , brain fog. thanking you. Dave
Five days a week I take this :
amazon.co.uk/Jarrow-Methylc...
The other two days a week I take this (also known as adenosylcobalamin, another form of B12) :
amazon.co.uk/Country-Life-G...
Seven days a week I take one of these which contains, amongst other things, methylfolate, which is needed to help the body make use of the B12 supplements :
amazon.co.uk/Thorne-Researc...
Be aware that people sometimes get symptoms that suggest the body detoxes in some way when it gets active forms of B12 if it hadn't previously been able to create methylcobalamin and adenosylcobalamin. I got severe spots mostly on my face and scalp, lots of very big mouth ulcers, and very severe eczema. It was distressing and painful but I persisted.
These problems weren't new to me but they were very, very much worse than I usually got them. This lasted for about 2 to 3 months and then faded away. I still have mouth ulcers but they are no worse than they were before I started. My skin is better than it has been for as long as I can remember.
The B Complex I take is a capsule that I just swallow. The methyl-B12 and the adenosyl-B12 are put in my mouth between teeth and cheek and are allowed to dissolve as slowly as I can manage. No sucking or chewing.
Have you ever had an MMA test? My reading lead me to believe that this is the second best test for B12 deficiency.
The best test is the one you, and I, have tried....
Do your symptoms improve with sufficient B12 supplementation?
If your question was for me, then no, I have never had an MMA test. It would never cross my doctor's mind that I might need one since my B12 has always been high (and, since supplementing, is now recorded as >2000).
I have been interested in getting an MMA test and a homocysteine test for quite a while, but they are very expensive. So I doubt if I will ever get one.
Many of the symptoms of B12 deficiency I had improved a lot with treatment. It is difficult to disentangle everything I've had wrong with me and what treatments have helped. I've also got thyroid and gluten problems. I'm self-treating my thyroid and have gone gluten-free even though I tested negative for coeliac disease.
One of the things I suffer from is ataxia (staggering when I walk). I went gluten-free as an experiment and discovered that it helped reduce, but not eliminate, the staggering. Supplementing B12 reduced the problem even further. I'm still left with ataxia that shows itself in narrow spaces, in the dark, and when I'm tired.
Hi HB,
Have you ever read up about proprioception?
healthunlocked.com/pasoc/po...
Link to old thread about proprioception. Proprioception difficulties can be found in people with B12 deficiency.
Have you ever been checked for sub acute combined degeneration of the spinal cord?
pernicious-anaemia-society....
if you are a PAS member, you can access an article about SCDSC in library section. Martyn Hooper, the chair of the PAS suffered SCDSC.
Wow. That thread about proprioception was like reading about myself.
1) Walking heel to toe. I can't do this very well with eyes open. With eyes closed I can't do it at all. I've known for years that I would never pass sobriety tests even though I drink nothing stronger than coffee.
2) I have to scan the ground ahead of me and watch my feet, otherwise there is a chance I could fall over.
3) I occasionally bump into door frames, bump into walls in narrow spaces, have problems going round corners.
4) If I stand with feet together and look forward I sometimes fall over.
5) I had a brain scan done four years ago which showed abnormalities. It was assumed at the time to be something I was born with that was of no consequence.
All the physical problems I have are much worse in the dark or when I'm tired. During daylight and when I'm not tired most people probably wouldn't notice I have a problem, because I can hide it to some extent.
How is Sub-Acute Combined Degeneration of the Cord tested?
I also suffer with Ataxia and its a big problem for me, I can't walk without a crutch and have a weakness down my right side so my right foot feels odd. I have got a lot better over the years but now seem to have stuck. I do exercises and yoga/palates which I was told would help but though I enjoy it, I'm still the one holding onto the chair for dear life. Going gluten free sounds a bit drastic but if it helps I would give it a go, though the doctor has ruled this out as a cause. I'm so tired all the time, falling over whenever I lean forward or stumbling about like I'm drunk so I'd be willing to try anything to see if it would make a difference.
I cover this in my latest book - What You Need to Know about Pernicious Anaemia and Vitamin B12 Deficiency. I interview the head of the laboratory who have been running the test for a few years.
Hi Martyn,
Yes, your book was the first time I'd read about the possible problems with the holotranscobalamin test. But this is the first published research I've seen about it.
Fbirder,
Thank you for posting this. Very interesting. To my mind it justs emphasises the need for GPs etc to diagnose on symptoms and not to rely on test results.
And so we're back on 'proving' we are ill yet again. Without a low cost, freely available accurate test, or lots of money to source and pay for our own tests (like MMA) and treatment, or an upgrade to GP knowledge and training, we're still stuck.
This is also covered by the BMJ research document FB, page 3 - "measurement of methylmalonic acid may be the most representative marker of metabolic vitamin B12 insufficiency".
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