I stopped taking any of the B vits. a week ago . Thinking I must do this for several weeks before taking the test. But it occured to me that as it's a urine test, do I have to wait long before doing the test?My routine B12 blood tests come back normal or very high. I have read that B12 can be high in blood but not getting into the cells.
I am eager to do the test as I feel very unwell.
Thank you for any comments.
I’m so sorry you feel so unwell . I’m in same position as you B12 always elevated . I had mma test done and it was within range from memory .
This B12 thing always niggles away at me but when I spoke to haematologist he was very blunt and said if you tested a lot of people with connective tissue disease most would have elevated B12.horrid arrogant little man .. (that’s my rant over ) 🤦♀️.
Have you ever been tested for instrinsic factor ? I haven’t but I’ve read about it before x
sorry my mma was blood not urine . I didn’t know they did a urine test for it ?
Hello, I’m afraid I don’t have advice for you, but I have functional B12 deficiency (where it struggles to get into the cells) and have had MMA tests. I had one MMA blood test approx 2.5 months after a B12 injection, and that came back raised (at the same level I had tested at the previous year, when not on injections) then 6 months later I had a further MMA test 2 weeks after a B12 injection, and that came back slightly raised (but it was only half as raised as the previous one had been). My B12 levels were ‘sky high’ both times - because of the injections. I’m afraid I don’t know what this means, in terms of how long you should wait, but i suppose if you want to know how high your MMA goes, then waiting 2.5 months might be an idea..
if you have already bought a test kit (if that is how it works), check if there is a time limit, beyond which they won’t process it, if you decide to wait 
GGood thinking.
I had in all six MMA tests.
The first was requested by my GP, concerned because my B12 injections for B12 deficiency did not appear to be halting my deterioration. Although many GPs are unaware of methylmalonic acid tests (MMA) and what they might indicate, my GP had had a patient with a similar problem ten years previously. Also not easy to get from primary care - my GP finally got accepted for the test on asking the third hospital on her list.
The result was that MMA was raised, and with renal problems ruled out as cause, i was diagnosed with functional B12 deficiency, confirmed by the testing laboratory. This resulted in an increase of B12 injections to 2 a week (nurses unable to provide EOD injections).
My GP told me that raised MMA was rare. I do not think that the nurses had ever been asked to administer B12 this frequently before - and some were concerned. It made a visible difference, however, and so the GP was happy to continue treatment at this level. Despite this, the next four MMA tests, taken by haematologist, were still raised. SIBO ruled out as cause by fasting series of breath tests.
The final MMA test was by Adult Inherited Metabolic Diseases and was finally found to be within range. This was three years later, and by then I was self injecting every other day.
I don't think that I ever had a urine MMA test.
Although my GP said that her previous patient did not require more than one every two months, I did point out that she could have been secretly self-injecting. I decided to tell her the day after my first injection - as I did not want her to talk me out of it. She was fine about it. I think she had used professional judgement based on observation and discussion (and medical advice maybe ?) - and could see the benefits. All else had been ruled out by this stage.
It is quite likely, then, that prior to my first loading B12 injection in 2016, my MMA would have been sky-high, at least since 2015, when I first went to the GP. It is also likely that, had I been older, the raised MMA would have been easily written off as "my normal" - and I would never have been sent to the Metabolics consultants.
If you have functional B12 deficiency, you are likely to need more injections than usually given, in order to ensure that sufficient B12 reaches cell/tissue level. Although nothing in my DNA was found to explain my problems, the consultants said that if they had found a genetic cause, they would have advised, in reporting back to GP, for two injections a week for life.
This is why I have continued to self inject at this frequency. Mainly, it works for me in keeping symptoms controlled.
Frequent injections: there cannot have been any other reason for my MMA to have eventually dropped.
My B12 was, after B12 injections started, always over 2000 ng/L - the limit of measurable did amount. So ordinarily accumulating MMA would have linked up in bloodstream with this introduced B12 - and move on to cell/tissue level. MMA would have been expected to reduce to normal levels during loading.
So I understand why you would prefer to stop taking B12 before getting MMA test. Please do not risk nerve damage though, which can be difficult or impossible to repair.
Thank you so much for sharing your harrowing story. I hope you are now enjoying some good quality of life. Thank you for your advice and concern
Harrowing story .... well, maybe -or we could look at this a different way:
GP: I had a GP who recognised in me something she hadn't encountered for a decade. She knew to get an MMA test and although she was refused by two laboratories, managed to get a result that confirmed her suspicions and so could give me an early diagnosis that most GPs would never have achieved. She ensured that I got a frequency of treatment that had no precedent at her practice. She continued this, based on her professional observations, for six months. When she could no longer help me, she sent me to every specialist or consultant that she could find to get answers, to get other conditions eliminated. For six years. Lucky from the start.
ENT consultant: Yes, I met some awful consultants along the way: arrogant, ignorant, dismissive. But just when I was beginning to think that I was on the wrong track completely with the frequent injections, I was sent to a senior ENT consultant because of a salivary duct complication. He commended my GP for her report (so it still matters enormously)- and he told me that yes, this was B12 deficiency, yes,salivary duct problem relevant. More importantly, he told me to continue EOD injections, to persist, that it would get better but that it would take a very long time. No tests were required for a confirmation - to him this was evident. Encouragement when I most needed it: lucky again.
Forum: Without the sound advice, the support, knowledge, links to research, help and kindness I have received from here, and still do, I would never have got this far. I have learnt so much from all of you, and feel very lucky to have this lifeline.
Yes, a good quality of life and plans for the future. Okay, I had to give up a career - but even that was after a year off sick, a phased return that never got beyond 2 days, which afforded me an opportunity to recognise my own limitations. The decision to stop working was in the end my own; I was accepted for voluntary redundancy during furlough. Lucky again.
A new chapter begins.....
Wonderful!
I have found a lab that does genetic testing for this. Do you think it is worth doing? It's expensive of course.
Everdean - I have never had to pay for any of the tests, appointments, monitoring and scans that I have had over these six years. Not even the genetic testing.
No, wait, I did once pay £60 once for a set of thyroid blood tests - but this was because the NHS did not provide the additional autoimmune tests I wanted. Two of my sisters have Grave's disease. I don't, luckily.
The genetic testing I had was at the end of my search for answers. By then, my MMA had finally dropped into normal range - probably washed through my system by a tidal wave of injected B12. Nothing abnormal was found in my DNA to explain the previous three years of raised MMA test results.
That could have been a devastating end to my search but it became just a little sad and disappointing because of the Adult Inherited Metabolic Diseases consultants.
They told me that they recognised how ill I was, they apologised for not being able to find an answer.... and they advised me to join the Pernicious Anaemia Society for support ! They knew of Martyn Hooper (the founder) and they were aware of the research trials he was involved in at that time. They keep your samples for a few years in case any research such as this gives a clue where else to look.
This is a relatively new avenue of healthcare. There is hope.
A good experienced committed GP can take you all the way to these people - but it will take time. You alone can decide whether it is worth the cost to get there now.
Whatever you decide, I wish you all the luck that I had - and more ! Let us know what happens next.
Thank you SO MUCH. I really appreciate your input Cherylclaire
Hello Everdean,I'm sorry you're feeling so unwell. I don't know if this will help. Back in December, my doctor's decided my positive intrinsic factor test was not acceptable because they had given me a B12 injection.
I was positively diagnosed with pernicious anemia but months later my doctors have been arguing whether or not I actually have pernicious anemia and not just B12D And really putting me through the ringer because of it. I don't really know why that matters so much to them, but for me after 38 years of being misdiagnosed, I needed real true answers. The treatment is the same either way, but I just needed the respect of my doctors once and for all. So I wanted to take another IFAB test. So I purposely stop taking any B12 for 20 days altogether, the first few days, I wasn't too bad. The second week I was getting severely depressed, very irritable, very out of breath. I was starting to get confused, and I just wasn't myself, what ever that is now. I put myself through that hell to try to prove that I had pernicious anemia. After 20 days of going without it I took the test and it came back undeterminable.
Luckily, that was enough for them. they decided that I do have pernicious anemia and it is now on my medical records as pernicious anemia and not just B12D. But I had to go through terrible symptoms and depression to get that. And even though it is on my record there are still a couple of doctors that don't believe it. I don't know what it matters to them whether I have advanced B12D or not the treatment is the same, but it's important to me after 38 years to get the respect I deserved.
It took me another couple of weeks of everyday injections to get back on track. A couple of times I even injected twice in a day.
When I did take the second IFAB test, given to me by my oncologist, not my GP, she informed me that I would have to go 6 months without B12 for it to be completely out of my system and maybe even a year. So the residual B12 left in your blood stays in there for quite a while even though your body isn't using any of it anymore. I don't know about in your urine but it stays in your blood a very long time and I'm not willing to go 6 months to a year without it to prove how sick I am, for any doctor for any reason ever again. 20 days was too long.
Sorry I really don't have better news. For me I decided I'm not going to my doctor anymore and putting myself through that kind of stress. I decided the B12 injections are helping me as much as they can and I'm just going to go with that.
The depression is hard enough without putting yourself through more stress because of doctors. If I never go to the doctor again it would be too soon.
Good luck with your test. If you do get a positive IFAB test that is like gold.
TThank t so much. What a nightmare the whole diagnosis thing is. II had no Idea. I know what you mean about drs. Thank you again and have a happy future
Any suggestions as to whether I need a B multivit with RDI or higher please ( if I get the go ahead for injections!)
Would blood tests 3months after last b12 injection be accurate?
Update on the GP visit
Stopping oral supplements before blood tests
B12 over 4000 with injections, any need to worry?
