About six weeks ago husband took a Medichecks MMA test. It was over range (positive)
In a way I was relieved by this because it meant that now we knew what we were dealing with and what to do about it. However, GP was clueless and referred us on to a specialist in Cambridge, who five weeks after the Medichecks MMA, ordered an NHS
IFa
Serum MMA
Both negative!
His last and most recent MCV about 3 months ago was high in the range
Now I know IFa is unreliable but what about MMA?
Have only just collected the lab reports after receiving a text saying all normal but what now?!! One positive and one negative MMA, plus an unreliable negative IFa will, I know, result in GP saying: nothing further to do
A bit of background:
He did the private MMA because his haematologist - who he sees for a separate condition - wasn’t concerned about low B12 and folate even though we told him husband had been supplementing for months and therefore of course the test would show improving levels. Nor was he concerned about ferritin levels that were so low they were only just with the reference
Since reading more and more on this site and elsewhere I’ve become increasingly suspicous of his symptoms. Mainly:
All night long twitching/jerking movements. Not just as he’s dropping off, which is something we’ve all done from time to time. This has been going on for 20+ years
Despite supplementing and getting serum B12 up to 600 or so, ref (211-911) he still has:
Strange jerking/twitching movements all night. He’s unaware of it but it disturbs my sleep and I imagine his too because he wakes unrefreshed and falls asleep on the sofa in the evenings
Breathlessness, which has improved since increasing iron supplements
Lacking in motivation and energy
The last two could be attributed to his very low ferritin - which was as low as it could be without being outside the ref range - but I’m suspicious that the nighttime twitching is neurological. We’re aware that his current respectable serum B12 levels are not a good indicator of the reality
Thyroid panel is also slightly deranged but we knew it would be so he’ll be seeing Dr Sarah Myhill in January for help with that
Grateful for any insight into what might be going on for him and also guidance on how to approach getting satisfactory advice/further investigations
Off the back of his Medichecks MMA I’ve been researching sc B12 and was going to order methyl and adeno but now I’m unsure. I think ultimately, even if doctor doesn’t want to investigate further, he’ll commence sc B12 but I’d rather have their support on this
Thank you
Cambridge consultant advised no B12 supplements a week prior to testing but husband hadn’t taken anything for several weeks for both positive and negative test
Written by
Noelnoel
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My ferritin goes down all the time am allowed infusions at 50, at 30 you are already empty. I also get muscle twitches when it's low even at 60 and terrible at 10. They happen all the time worse at night. Seek a second opinion, I would also do another private MMA and if that comes up positive would ague that the NHS one was incorrect. Errors do happen.
That’s really interesting to know. I hadn’t considered low ferritin could also be the cause of his twitches. Thank you
Are yours throughout the night or do they settle at some point? Do they stop after your infusion? So sorry to hear that you suffer with this. It must be debilitating to have them all the time
never been diagnosed as PA but think so. I had years of different symptoms, including not being able to feel my legs but it came and went and think I hovered in the grey zone.
MMA isn't specific to B12 deficiency and can be raised by other things, mainly kidney issues. If you have raised MMA and creatinine but the ratio between the two is in the normal range then that would point to B12 rather than kidney issues.
An MMA result just above the normal range would also be seen as inconclusive as it is expected to be well above range if B12 is the cause.
That doesn't mean that B12 isn't an issue. If you have a series of serum or active B12 tests showing a significant drop over time that would indicate a B12 absorption problem.
Unfortunately single serum B12 tests are very difficult to interpret and negative IFAB is a long way from ruling out PA as a cause of a B12 deficiency, but to be clear, it isn't a test for B12 deficiency.
Supplementation can affect serum B12 results for months so that may also be clouding the test results.
I'm not sure what the normal ratio is - it would be part of a kidney panel. I don't know what the ratio is and it might vary slightly from lab to lab anyway depending on how machines used for testing have been calibrated.
Negative IFAB doesn't rule out PA as the cause of a B12 deficiency because it isn't very sensitive so gives a very high number of false negatives.
IFAB is, indeed, a test for PA.
My guess would be that whoever advised you that a week would be enough time to refrain from supplementing B12 probably hadn't checked or misread the testing details. It seems to be something that comes up quite regularly with medichecks though.
Noelnoel If you have a Nuffield Hospital near you see if they offer Pathology Direct services. My local one will do MMA for £74 which includes the draw. They accepted my Medicheck report recommending an MMA as 'the referral'.
You also need to take on board our antibodies wax and wane hence as to why most tests are unreliable where autoimmune conditions are concerned. If Gps and consultants are being dificult it might be prudent to remind them of this ! It's a long road that we tred but I hope your hubby gets some answer's soon. 🤞
Hi Noelnoel I had an Active B12 with Medicheck which was low so they recommended I have an MMA. I shopped around and found my local Nuffield would do MMA for £74 all in instead of the Medicheck quote of £149 plus draw...
Right. Yes, it was an expensive test and I’m unsure why Dr Klein (the Cambridge specialist) repeated the test for my husband with an NHS one. It seems strange given that he recommended months ago that my son take the Medichecks one. If he doesn’t trust the test, why recommend it
Really grateful for the Nuffield recommendation. We may have to use it
The same thing happened to me. I first tested positive. However, I was told that because I was receiving B12 injections the test was probably inaccurate. (Labcorp claims it would not affect the results.) Last spring, after a few months without B12, I retested. Lo and behold, the results were negative. So, I’m lost and confused myself. Le sigh.
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