Hi - I recently had a series of tests at St Thomas' hospital which I paid privately for, including the MMA test (Methylmalonic Acid). My result was 138 nmol/L (range 0-360). I am on a Facebook group for B12 deficiency and also Vitamin D deficiency, both of which I have (Vitamin D corrected with self-medication following the Facebook protocol). I trust the Facebook group I am on as the administrators do seem very knowledgeable. They tell me though that I have the wrong MMA test even though St Thomas' is a famous hospital. It is measured as you will see above in nmol/l at St Thomas'. This lady on Facebook is American and her MMA test is measure in umol/L (Range 0.00-0.40 umol/L). I tried to convert this to umol/L which comes out at 0.138 umol/L. The lady says she had already discussed this with her haematologist about 2 years ago and says that you cannot convert it to the same unit of measurement that she is referring to, it just doesn't work and so therefore I have been given the wrong test! My question is have I had the correct test? She is adamant it is wrong. Thanks for any help with this.
Correct MMA test??: Hi - I recently had... - Pernicious Anaemi...
Correct MMA test??
She is talking out of her bottom.
1000 nanamoles is 1 micromole.
So your level of 138 nmol/L is exactly the same as 0.138 umol/L.
Thank you! I know she will still say you can't convert it that way. I am still not sure though if my level was ok or not for MMA. It is a fairly big range. She reckons it should be less than .30 umol/L. My folate was 11.2 ug/L in a range of 3.1-20.5 (she says folate to be optimal should be greater than 20), and my ferritin was 62 ug/L in a range 22-275 and she says ferritin for a female should be between 80 and 90. Trouble is, everywhere you look on the internet has different answers, plus the doctor will say something different too! Very hard to work your way through the maze to health. I am on monthly injections for my B12 (I am lucky my doctor allows this) but usually a week before the jab is due I start to feel sick and spend two days in the loo on and off all day, plus I start tripping over pavements with my left foot and get a sore mouth and ragged tongue (in fact I get that most of the time). My voice gets a bit croaky and I get a lump in my throat and often feel like I want to scream. I have neuropathy in my feet and part way up my legs. i believe my B12 went undiagnosed for years - diagnosed 9 years ago. I don't think I was treated properly to start with because I didn't know what I do now. I had neuropathy then but wasn't treated with injections 'till no further improvement', plus I was put on 3 monthly injections and I think it should have been 2. I was in a mental health unit over 20 years ago and they found I was extremely anaemic and I needed injections to correct it. I now believe this was all caused by B12 deficiency. I was hospitalised for 4 months in the unit and had therapy, and 3 months the following year. I made a complete recovery mentally but what I don't understand about that time is if my mental state could have been cause by B12 deficiency why did I get better? Was it because the anaemia was corrected. Sorry, going a bit off topic here. I had tingling in my feet then in hospital, so that could have been the start of deficiency I suppose. I saw a lovely doctor recently who isn't my own one, but even he thought I could 'overdose' on B 12 if I had more than I am having now. I am seriously considering self-injection, but in the meantime I keep monitoring my symptoms.
your MMA is in range - if you were B12 deficient at the cell level then the expectation would be that it would be much higher than the normal range.
as per fbirder - the american lady you have been talking to is totally incorrect that you can't translate and the numbers you are quoting are consistent with the test that she is quoting - just that there is a small difference on the top of the range - which could be down to the calibration of the machinery that is being used.
It does sound as if you actually need injections at least every 3 weeks rather than x1 per month.
The remarks about overdosing on B12 are, unfortunately, non-sense, if only for the reason that immediately after an injection your B12 levels will be off the scale and then they will fall over time so you would be overdosing when you had the injection. The treatment for cyanide poisoning is 5000x the amount of B12 (as hydroxocobalamin) you are given in a shot, administered intravenously over 15 minutes with a repeat half an hour later if needed. The down side is the risk of triggering hypertension by introducing the amount of fluid that is necessary to administer that amount of B12.
B12 deficiency will cause psychiatric problems but unfortunately there is no way of knowing for sure. If the type of anaemia they found was macrocytic then that would point to either B12 or folate deficiency but the most common form of anaemia is microcytic caused by iron deficiency.
Thank you. I have read a lot and unfortunately so many doctors are ignorant of B12 facts. I am a bit scared of self-injection although my friend has had to learn owing to her diabetes. I am nearly 70 by the way and just want to feel I have energy most of the time instead of only occasionally. I have had insomnia for over 30 years and I would just like to get normal sleep more often than I do. I will go back on Facebook sometime and give the facts about the MMA test! Thanks for your input.
Personally, I would just ignore the Facepoop group. I’ve looked at quite a few on there and most do seem populated by people who don’t know what they’re talking about.
If you do go back and she says I’m wrong tell her I’m a chemist with a first class degree. And I say you can convert units. It’s like converting km to m.
I've just had one reply from the group and someone says that "according to the Pernious anemia society, the only hospital that does the correct algorithm for the active b12 test is in Wales, not St Thomas" - is that right, does anyone know?
Did they really use the word algorithm?
I repeat what I said earlier, ignore the Facebook group.
They did use 'algorithm'. Even if they did and it is the incorrect word to use, do you know if the Pernicious Anaemia Society recommends the Active B12 test at a place (I assume hospital) in Wales.
I am pretty sure that the PAS do not recommend any particular lab. As for St Thomas’ not doing it correctly. If that were the case I doubt that the PAS would have invited Dr Dominic Harrington to give a talk on the Active B12 test at their conference. What with him being the Scientific Director of Viapath at St Thomas’ hospital.
pernicious-anaemia-society....
Like I said. Talking out of her bottom.
She gave me the link at the end of this post.
She explained it to me this way, so not sure what to make of it:
Converting two different measurements is simple if you’re talking about a supplement or medication.
But it’s not the same if you’re converting lab results every different lab test has a different multiplying factor.
My hematologist has said there is not a converting factor to use! And this website proves that I spent four hours last night trying to find a way to convert it and it doesn’t exist!
Just because you’re talking about nmol it doesn’t automatically convert the same to umol unless you know which lab test you’re running to be able to know which multiplying factor is involved.
Now click on this link and you can scroll down clear to the bottom and see the different multiplying factors for each lab results or lab test.
Methylmalonic acid is not listed it is not convertible.
AMA Manual of Style
Conversion calculator
amamanualofstyle.com/page/s...
Sorry, it’s obvious that there’s some misunderstanding here.
That table of conversion factors just converts from older units to the newer ones. For most of them the older units are given as a certain mass (mg, ng, pg, etc.) in a certain volume (mL, L, etc.). The new units are in moles in one litre. The ones that don’t fit that are enzymes, which always have weird units.
So what is a mole? It’s a certain number of molecules. Just like you can have a dozen (12) molecules, or a score (20) of molecules, or a gross (144) of molecules, you can have a mole of molecules. But a mole is a lot bigger than a dozen, or even a gross. A mole of molecules is 602,000,000,000,000,000,000,000.
One pmol is one-billionth of a mole and 100 pmol is one ten-millionth of a mole. So, when you say that your B12 levels is 100 pmol/L it means you have 60,200,000,000,000,000,000 molecules of B12 in each litre. As with all SI units you can easily convert by multiplying/dividing by 1000.
The number chosen to be called a mole was picked so that 12 grams of carbon contains a mole of carbon atoms. If you know the molecular weight of something you can easily calculate how much of that thing you need for one mole.
The molecular weight of methylmalonic acid is 118 g/mol. So 118 g of MMA contains a mole of MMA molecules.
Now you can convert between old units and new units.
If you get an old lab report that says you have an MMA level of 35.4 ng/mL you know that 35.4 ng is the same as 0.3 nmoles (divide by the molecular weight - 118). So your level is 0.3 nmol/mL. But you need it in litres, not millilitres, so you multiply by 1000 to get 0.3 umol/L
I used to do this sort of thing all day, every day, in my job.
Well, that's a very complete answer!
Just to clarify...
B12 deficiency can cause psychiatric problems.
B12 deficiency will cause psychiatric problems if it is left untreated.
Psychiatric problems won't necessarily be among the symptoms that have developed when a deficiency is identified and if it is treated of course then the symptoms of deficiency won't develop further.
B12 deficiency/PA can be present with microcytic anaemia
Yes, you can have microcytic anaemia if you have a B12 deficiency if you are iron deficient.
More common is to present what looks like normal-sized red cells, because the Mean Cell Volume is normal. Only when they look at the Red cell Distribution Width RDW) can they tell that a normal MCV isn’t because all the cells are normal-sized, but because there’s a mixture of bigguns and littluns.
By the time anaemia is diagnosed, microcytic or macrocytic, a huge percentage of people already have neurological/psychological symptoms, etc. and some will be permanent because of delayed treatment or misdiagnosis.
So, personally, Mountainnice, I would self inject every other day. This is what I've been doing for over a year. I had what I thought were mild neurological symptoms, then found to have Microcytic anaemia - later, severe fatigue, tinnitus, numb and tingling fingers and toes after two bad viruses.
I don’t think microcytic anaemia has any connection to neurological damage.
My feet are already partially numb and the right one getting worse, I am finding it difficult to feel the accelerator with heel and front part of my foot.
The Dutch results on the R/H side of the forum has information on the importance of early and adequate treatment mountainnice and, if you can find the courage to self inject, it could make the difference between being able to continue to drive or not, and I'm afraid worse* I'm an oldie and, like many others on the forum, found it daunting at first, but it soon becomes second nature and I'm so glad I did 🤗
Lots of info and help on the forum....
stichtingb12tekort.nl/weten...
"MMA and homocysteine are considered more sensitive tests than serum B12. However, Solomon1 previously reported on patients with normal values of MMA, homocysteine and serum B12 who still had clinical symptoms of a B12 deficiency and responded favourably to treatment with vitamin B12. When patients show serious symptoms that relate to B12 deficiency, Hvas and Nexo2 , too, advise treatment regardless the test results. With patients having values (of serum B12 and MMA) in the grey area and complaints that could indicate a B12 deficiency, treatment should be started and, in case of clinical improvement, continued.
Subsequently, one could consider retesting homocysteine and MMA to see if they decrease.
* For diagnosing B12 deficiency there is no golden standard test and non-treatment because of normal values can have very serious consequences."
I also have Raynauds and I am now wondering if that is the numbness affecting my feet after speaking with the chiropodist this morning.
I'm not a medical expert mountainice but is it possible it could be both?
Not only does the latest BMJ research summary below state there is no reliable test, but the Dutch links on the r/h side of the forum state this too and the neurological symptoms you've already described mean it's highly likely that PA/B12 could be the cause, and should be treated with injections without delay to avoid permanent damage, especially as, over the age of 60, the risk of hydrochloric acid diminishing (needed to absorb vitamin B12) becomes greater.
More helpful links:
(GP should be able to access full document behind a pay wall)
(An excellent site for information and films etc.)
b12deficiency.info/signs-an...
stichtingb12tekort.nl/weten...
stichtingb12tekort.nl/our-e...
I am getting really stressed by all the information. I have read so much over the past few years and not much of it stays in my head. Plus I've got loads printed out. I have monthly injections now but probably need more. I've had a particularly bad day of diarrhoea this morning and left washed out. Just been sitting here all day researching info. Had my jab this afternoon - my husband took me. Nurse was very sympathetic and when I described returning symptoms plus I am getting more and more into a brain fog where some words are just out of reach and told her I have to arrange my life around returning symptoms, she said I should see the doctor if it is affecting the way I live, so I have to try and make an appt. 10 weeks wait atm to see doctor unless I go on a Wednesday to see what appts get released. I am particularly worried about increasingly forgetting names and words, even forgetting my grandchildren's names I do find the amount of information very stressful and I just want to cry because of it, might sound silly I know. I just don't know where to start first. This always happens after a particularly bad day and then I manage the rest of the time till my next bad bout. I have just followed a link and purchased an app to input symptoms, test results etc. Got as far as symptoms but now feel so overwhelmed. Also I read from one of the links about self injection and it looked horrific the things that can go wrong. I could ask to be taught by a nurse at the practice but would they consider it I wonder unless they agree with me self-injecting?
I do feel for you mountainice. Don't worry about trying to remember all the information - it is complex for anyone to take in and the stress just compounds the anxiety and makes it more difficult to concentrate.
I found these feelings of anxiety and being overwhelmed were the worst symptoms of B12 and this was one of the reasons I decided to self inject as I realised the stress of dealing with the surgery would just make things worse.
It's unbelievable how long people are having to wait just to get an appointment nowadays 😳. The nurse seemed very sympathetic - others on the forum have broached self injecting with their surgery and found them happy to co-operate with this, so no harm in asking
Self injection seems very daunting with various warnings making it even more so and can be very offputting. All I can say is that I nervously bumbled my way through the first (started with small needle and sub-cut) but then found it became surprisingly easy, with very little to go wrong as long as all is kept sterile. Lots of information on this on the forum.
I am so glad I took the plunge for the feeling of now being able to cope with life, less anxious, more in control and independent of my surgery. You won't regret it......
Regarding the conversion of one unit to another. There are several sites on the web to do it...
endmemo.com/sconvert/nmol_l...
Yes, that's how I did the conversion. I'll look at your link. Thanks.
Re Microcytic anaemia and B12 def.:
ncbi.nlm.nih.gov/pubmed/157...
Also Sally Pacholok's book, "Could it be B12?"
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