MMA and homocysteine tests

[expatkerry]

Hello everyone, I had the usual loading dose injections for my PA last October (after getting sicker on just monthly injections) and continued self injecting every other day from the beginning of december. At this point my gastroenterologist agreed it could be functional B12 deficiency and decided to give me an MMA test (which would probably have been more useful last October!). It came back at 0.40 which is the highest value in the reference range and my MCV was still at 99; other blood work was creeping back up to normal. I've since read that 0.40 is still high so I suppose that reading was significant, however I didn't take too much notice of it. In March my MCV went down to 93 and other blood work was also looking good; the pains in my legs were almost gone and I wasn't breathless any more, so I decided to see if I could cope with less injections. I went to twice a week then once a week. End of April I was out of breath, in pain, sleepless and quite frankly a little bit crazy with over anxiousness. Of course I started injecting once a day and ten days later the breathlessness went. My folates are massively high at 791 and I posted here to ask why, I was told it could be folate deficiency with the folate unable to be synthesized into a useable form. My GP gave me a Homocysteine test (i wasn't offered another MMA test) which depressingly has come back normal at 6.13, (normal ref range less than 10). Is this possible after just 10 days of injecting ? or am I left with no proof again because the test was peformed too late? I have an appt with my gastroenterologist in June and I'm afraid she will dismiss me as a nutter (I've been here before). I feel the need for my condition to be recognised, I don't know if anyone can relate to that. Also does anyone know how reliable MMA and homocysteine are? is it possible I am only deficient in B12 showing high MMA, normal Homocystiene?

[expatkerry]

Sorry I wasn't precise: the MMA test was done in January after 3.5 months of treatment

[Hanneke12]

stichtingb12tekort.nl/weten... - 0.4 is high!

[Hanneke12 in reply to Hanneke12]

And even if your test results seem fine, if you have symptoms that improve with B12 injections, treatment should be continued.

I had to fight for that as well...

[Cherylclaire Forum Support]

My serum tests for MMA (after B12 injections started) have been consistently raised at anywhere between 350 - 400 nmol/L (range: 0-280 nmol/L) - but homocysteine normal, I think around 7.

I was diagnosed by my GP firstly as having B12 deficiency, then later because still symptomatic, she had MMA tested by central London lab - and due to it being raised, her diagnosis of Functional B12 deficiency was confirmed by the lab as long as renal tests were fine. She had already checked this. GP told me that raised MMA was unusual: she'd only had one other case 10 years previously - which was also found to be Functional B12 deficiency. A patient she continues to treat.

However, haematologists later said MMA readings were considered "mildly raised", then tested my homocysteine which was normal, and did not think Functional B12 deficiency was my problem. But they also said that B12 was toxic, carcinogenic, and highly addictive, which meant any B12 deficiency testing would likely be quite biased given their absurd warnings.

I also find that injecting every other day (and take daily multivitamins and minerals tablet and my prescribed D3) means that I am (usually) able to manage my symptoms, and seeing very gradual improvement. If I stop, that stops too.

I have given up with trying to get consensus on my condition, and will continue to treat myself as above. Hoping for answers from Inherited Metabolic Diseases consultant next month, - but no longer expecting miracles.

I still believe Functional B12 deficiency to be the best fit, and treat it like Talbot and Turner said in their research: with frequent injections. Seems to work.

[expatkerry]

Thanks for your replies. My MMA was nowhere near as high as yours Cheryl Claire so this leaves me wondering (and worrying) about what the hell is wrong. I think I can safely assume that my MMA reading would have been much higher if it had been done before treatment which does seem to fit.