On the test site it stipulates to cease B supplements for 14 days before a MMA test, does anyone know if that would still give accurate results? Im sure I read somewhere that it needed to be 6 months, which would be an absolute nightmare to do with B12 deficient symptoms escalating and scupper my thyroid meds completely.
Any info would be greatly appreciated,its a very expensive test and with limited funds i dont want to mess it up.
Every best wish G
The result will be accurate. It will show your MMA status.
Whether you need to stop supplements or not depends on what you are trying to find out.
If you're trying to find out if you have a B12 deficiency without any supplements, then you need to stop those supplements for at least three months.
If you're trying to find out if you have a functional B12 deficiency, where there's lots in the blood, but it's not getting into the cells, then you shouldn't stop them at all.
So why are you having an MMA test?
Hello fbirder,
Thank you for taking the time to reply.
I want to do the MMA test, well its a last resort really. After more than a decade of life wrecking symptoms, alot of being written off, alot of self diagnosis, and finally endorsed by the NHS I am DIO2+, have Hashis and after alot of fighting am on NDT and T3. Meanwhile I still have many other uncorrected/unhelped symptoms,mostly relating to chronic gut pain/inflammation/ absorbtion problems, pins and needles,tinnitus, visual changes, yellowing skin (bilirubin etc all ok) toes curling under, fatigue, muscle weakness, facial nerve twitching/sensitivity,gallbladder problems, problems digesting protein, brain to leg weak signalling from time to time, gait sometimes odd......and so on and so on.
My mother had Chrons, PA and injections,her mother had PA misdiagnosed in the 1950.s as MS initially, and I am wondering if I have PA and been missed years ago due to taking B Complex for more than 20 years. Could this be why I dont get fully better.......
Endoscopy 10years ago revealed flat villi, low stomach acid.
Acumen test confirmed borderline achlorhydria, I have been on Betaine and Enzymes 4 years, HCL is now sufficient.
B12 blood test read high out of upper range, I have noticed when I reduce B supplements prior to thyroid blood test,the symptoms get worse, but also note that when I add higher dose of B12 sublingually back in after, I believe there is an improvement at first but I feel I need more, but cannot tolerate any more if that makes sense. There has been a notable difference taking B12 sublingually, with the supplement I get so far and end up with a burning tongue,when I add B Complex daily after awhile.
Ive got to the stage now wondering whether, this may have always been PA missed, and that has caused the thyroid problems.......
So do you mean that if I abstain for 2 weeks prior to MMA test it will give me a cellular uptake issue result one way or the other? I guess thats what I am thinking.
Any thoughts would be greatly appreciated,
every best wish G.
"B12 blood test read high out of upper range"
If your B12 was over the top of the range on oral supplements then you do not have PA.
So you are looking to see if you have a functional deficiency - where there is lots of B12 in the blood, but it's not getting into the cells. An MMA test would be useful, with no need to stop supplements for months. If the MMA is high then that is a good indicator of a functional deficiency as long as there are no kidney or liver problems, which can also cause MMA to increase.
Hi fbirder,
I dont think i understand the difference, whats a ' functional deficiency' ? I thought you can have elevated serum B12, sloshing around in the blood, but thats not necessarely into the cells which = PA ?? Have i got it all round the wrong way ?
G
No.
Pernicious Anaemia is an autoimmune disease. Your immune system destroys certain cells in your stomach. Those cells make a protein called Intrinsic Factor. The B12 molecule is too large to get from the gut to the blood without help. IF binds to the B12 and helps it get through the gut into the blood.
With PA you cannot absorb B12, so you have low levels in the blood, even if you take oral supplements.
If you have very high levels you can absorb oral B12, so you do not have PA. But it's still possible, albeit rare, to have the symptoms of a B12 deficiency because the B12 can't get from the blood to the right place in the cells. That's a functional deficiency.
Hi fbirder,
Got it now, thank you for clearing that up so well. Im having one of those der-cant-think-straight-days........of which i am sure are connected to the matter.
I will re read M Hooper books on a better day.
I cant rule it out..... just out of interest , how rare is a functional deficiency ? Something just doesnt seem to be right, having got my HCL in order, Vit D, Iron, Folates, Cortisol, Meds, Enzymes,this is the only thing I can think of ,based on Mother and Grandmother's diagnosis. Having had a decade of being told all my bloods were fine/in range, it still masked the DIO2+ fault which also means T4 cannot convert to T3 fully or efficiently into the cells.
Thank you so much for advising me,i really do appreciate it,
Every best wish, G
Interested in the flat villi - did they give you a reason? Do you have Crohn's, Coeliac, food intolerance issues (corn, dairy). Hope the MMA test gives you useful information. Best wishes
Hi bookish,
This may or may not suprise you, that at the time the Endoscopice observed,said, and wrote, flat villi and biopsies in line with Coeliac/gluten sensitivity, no Chrons........and wait for it Gut Consultant said , "poppycock" take 28 days anti depressants !!
I asked and so did my GP what then caused the flat villi......10 years on no response/answer
I was 8 stone for 30years, ate the gluten for 3weeks for Coliac test (meant to be 6 weeks) filled up with water to 10 stone in those 3 weeks, it was horrendous, as the fluid is inside your head, body right into every cell like your a taught ballon pressin on you lungs , but hey diagnosis was 'poppycock".
Have been GF,DF,SF,CF many years, even tried grain free. Gluten is a complete no no.
Thank you for caring, very kind,
Every best wish to you too G
Well I'm sorry that they didn't have an answer but no, not surprised, just very glad that you know gluten doesn't suit you! I'm grain free, dairy free and much happier for it - doesn't suit me either. I have a long family history full of PA sufferers and B12 D sufferers all of whom need generous amounts of B12 to keep symptoms at bay. None currently with PA that we know of, so all on oral or sublingual. I have benefited considerably from a low dose of methylfolate (I take approx 450mcg daily, divided into 3 doses) as well as my B12. Thanks and good luck!
Hi bookish,
How does that go down with your consultant/Gp when they see high B12 asterisked on any blood tests ,do they jump up and down like they do with me? Im not sure what the worry is, the UK range is quite narrow compared to other countries, and i understood B12 is not toxic,gets eliminated if too much.
Do you find it tricky being grain free as well as GF? I find i crave complex carbs, as pulses have become intolerable too,its difficult to feel sustained.
Interesting you mention the methylfolate, I took a look at the Thorne one, have not tried it yet,waiting for this current gut flare to settle.
Thank you for your advice though,sometimes its a lonely old business, but will get there in the end.
Every best wish to you too, G
Hi, to be honest they don't test and never did unless pushed so it hasn't been a problem (yet). As a family, even with decent doses of B12 we don't seem to get really high. And even with the strong family history, my aunt's GP hasn't and won't check her B12. Dad worked it out for himself and we can all tell if he gets too low. Partner's mother's GP is currently jumping up and down about her high-ish B12 but she didn't tell her it was being tested and to come off her supplements (but knows that she has supplemented for years). My Neuro seems to understand and be ok that my adding the methylfolate eliminated some of the symptoms that I had gained prior to seeing him, which dietary folate and B12 supplementation alone hadn't. You might get on better with a different type of B12 perhaps. I use Metabolics liquids Methyltetrahydrofolate and Methylcobalamin now.
It can be a bit depressing but generally I feel so much better keeping things simple that I'm ok with it. I started off just normal GF and bought bread etc but soon realised that the cornstarch (and potato and rice, but corn worst) made me feel like I'd swallowed a live frog, so slowly worked my way through and decided grain free suited me best. For a while I used a bit of coconut flour but no longer use flours of any kind. I am sugar, caffeine, nightshade free and have a histamine issue to deal with so I cook everything fresh and avoid/balance histamine foods. I eat lots of veg, a good mix, plus fruit (probably more than I should), a little fish, plenty of eggs, have reintroduced some nuts, lots of extra virgin olive oil, some coconut oil, drink lots of ginger tea! Blood sugar isn't great so I eat a bit more often, a little protein and a bit of veg or fruit with fat, but try not to overeat. I had lost a considerable amount of weight during all the not knowing what was happening stage and have put most of it back on. Trying to get a balance on how much you need to take in isn't easy (to me) when you have changed diet so drastically. I do take amino acids which were especially important I think when I was really struggling to digest protein. I can't tolerate Betaine HCL or enzymes or some glandulars so digestion is still an issue ( I use lemon juice or lime, or ACV but it isn't enough really). Getting supplements that I could take and that didn't contain corn etc took a while.
You are so right about it being lonely but you meet some lovely people along the way!
Healing isn't linear, but we are making changes and seeing improvements so we will get better - not completely perhaps, but still better x
Hi bookish,
Wow so im not alone with the food issue,its other peoples remarks that upset me, because food is love is nuture.....thats what we like to do for and with others, and these days it tricky.
Yep im familiar with Metabolics so will take a look, thank you for that.
Every best wish to you, and have a lovely weekend, G
Hi Gilly, no you're definitely not alone. The comments I got when I started getting so thin were really hurtful, people saying I was on a fad diet and making myself ill, ignoring that I'd been increasingly ill for years (and gaining weight). It just made it noticeable for them. And such rubbish, I was losing weight because I could no longer digest much food and hadn't been getting nutrients for some time. The diet was and is therapeutic (supportive treatment for a disease or illness) not 'reduction' and now most of them acknowledge that I am hugely better than I was and that I was doing what needed to be done. My partner and I haven't been able to eat the same meal for 4 years but I still love to cook. Just now and then I really miss something and it is a bit repetitive for him because I don't try new recipes as I can't taste anything to see if it is ok. All done from old tried and trusted that I can judge by sight! Sitting around a family dinner table can be a trial so I try to avoid any but immediate gatherings where people don't know what's going on. As I'm multiple chemical sensitive and can't cope with perfumes, candles, air fresheners, cleaning products....it is easier to avoid sometimes. (A small upside to the pandemic? No, miss family like crazy!)
The sun is trying to come out, after snow at 1am, cheering to see some blue. Take care x
Oh bookish,
I think we must be joined at the hip, your mealtimes, experiences are so similar, now i dont feel quite so alone, especially the perfumes, chemicals and the corn ! Huh whats that about, the tiniest bit of corn that are always the fillers in our meds....but i just have to go with that one at the moment
Got to admit as i cant taste the meals for others after so many complaints its not seasoned enough i am guilty of tipping the chilli pot entirely into the mix! Voila and no complaints!!!
Blue skies out there, enjoy , and have a lovely weekend too G.
That made me laugh, thank you! I do think I'm sometimes a bit heavy handed with the chilli too!
As you mention the corn, have you discovered Micki Rose on PureHealth yet? She has a corn problem so her site and gluten free book (superb!)have a lot for those of us that are what she calls TGF (truly gluten free). She produced a list of supplements that are corn free, or as far as possible, and I only use stuff off the list. purehealthclinic.co.uk/?s=corn There are corn free sites online as well that have been helpful. I don't take any meds but when I needed to try an aspirin I did find something suitable after looking. Mine is not allergy, but this is a really useful site and also talks of mast cell activation, methylation and glutathione deficiency (which is commonly linked to chemical sensitivity) cornallergygirl.com
Keep smiling x
Thanks Bookish, no i dont know Micki, so i will definetely take a look. I quite like Gluten Free Goddess especially the Goddess bit!! ha ha
Mine isnt a true allergy with corn etc but bizarre sensations, dizzy, rash, gut gripes etc, the chemical thing is as simple as breathing in workmens bitumen fumes, cellulose etc and boom,chest rash,nausea, whizzy head, but not true allergies.....but fast reactions. I just think well good little old body warning me its not happy with something and to take care.....otherwise it would be very depressing.
Take good care and many thanks, G
Hi, I like the look of the GF Goddess, thanks, although I don't feel terribly Goddess like at the moment! Something to work on....
Your reactions sound a lot like mine and interesting that you mention bitumen as I think now that that was my first chemical reaction - age 18, everyone said I'd got hay fever although never had it before or since. They were re-roofing a bit of flat school roof right outside the art block where we were sitting for hours (in blazing sun with windows open) doing A level art exams.
Datis Kharrazian has some thoughts on intolerances chemical and food (drknews.com/food-sensitivit... and his books are pretty useful. I've had the thyroid one for a long time but got the (superb in my opinion) brain one recently and am still working my way through (it is quite big!). I think you are spot on that the reactions are to prevent us blindly absorbing more and get us out of the environment. One step at a time x
Hi Goddess !,
Yes his books are good, not seen the brain one so will take look, thank you.
It is interesting these chemical reactions coming in at either stressful times,exams, puberty,bereavement, burn out, after vaccines, after anti b's ,pesticides etc.
I am convinced it is all down to our gut health/flora,permeability, whether that has been weakened along our way in life, time will tell. Probiotics,fermented foods , all the recent (10years) data seems to be a way out or forward.
Take good care, G.
That made me smile! I think I'll have to be Goddess 2 though (or possibly 42) as you got there first! I suppose that any of those 'triggers' are stresses, in the widest sense, on the body and could make us more vulnerable. Stress depletes B12 and no doubt other vits/minerals. Some link glutathione deficiencies to chemical sensitivities or a predisposition to them (just like some do with methylation.) Certainly had problems myself after all of those listed. You too xx
Hi Bookish,
Err not a Goddess more a relic ! You can add for me 20 years on your 42 ,so you still have plenty of time to bring back your 'inner goddess'
😉
Yes glutathione comes up alot in several of the books ive come across, and papers.......will take another look at that too.
Blue skies again tomorrow, enjoy, G xx
That gave me another chuckle, thank you! I just picked 42 as the ultimate answer to life, the universe.....and am actually not so far behind you, at 56! So we both have time.
Micki's gluten book quotes Mark Hyman as saying that about half of his patients have glutathione absent genes, not that that means anything on its own as you don't need the genetic weakness to be low in glutathione. Sulphurous veg, vit C, some selenium will help. I do that and take Kirkman's detox aid as it has glutathione support.
Warm and sunny - have a great day xx
Hi bookish,
Im rattling with supplement ! Good job we are fighters and hungry for information....
Sunshine aahh G x
Me too! Enjoy the warmth and top up that D xx
Even if you don't have PA, you could still have a functional deficiency. I don't have PA and need B12 injections very regularly to minimise B12 deficiency symptoms.
I would say it's worth checking your MMA and worth trying B12 injections if supplements are working but don't seem like enough.
Hi Velliangiriblue,
Thank you for your reply, very kind of you, im on the case,and planning the MMA test after I have been vaccinated.
Every best wish to you,G
Have a look at my reply this morning to Pinky3's post "Odd Results after supplements ?"I was diagnosed with functional B12 deficiency by my GP, confirmed by the blood test hospital lab. I had six MMA tests in all, all of them were NHS funded.
My GP has found raised MMA to be rare: only two cases in her twenty-odd years as a doctor. The first was ten years before me - which is how she knew to get MMA tested. It wasn't easy at primary care level, and she had to send request out to three hospitals before getting the test done.
Hi Cherylclaire,
Thank you for your reply, thats very kind. I will check your AM post if i can find it, yes it would be good to go via NHS as i checked the MMA test today ,one was £127 just for that and the other was £280 which included RBC WBC and many more related. Neither feature Homocysteine test anymore.
Its a considerable price for me, so thank you for letting me know there could be other
options.
Every best wish, G
Haematology tested homocysteine too, and it was "normal". They tested MMA four times in all, trying to work out what was going on. They also requested SIBO breath test to rule out this as a cause. Eventually led to the Adult Inherited Metabolic Diseases people, to check DNA for cause. By which time, when MMA checked, it had dropped within range. It took three years to do that. They still checked my DNA, but could not find a cause - apologetic and accepted there was a problem at least. Sometimes you don't get an answer, and I've reached the end of the road regarding investigations. Guess current research could come up with something - and DNA is stored for a few years.
Plenty of options - but it all needs a tenacious GP to start the ball rolling.
To look for post, try typing title into Search HU at top r/h column (magnifying glass).
Good luck, Gillybean1
PS - Also had "flattened mucosal pattern" (duodenum) and "patchy gastric metaplasia" -nothing more said about that once Coeliac disease ruled out.
Hi Cherylclaire,
You know i think it simply means they just dont know,,,yet......And thats ok just wish they would for the most part say that, Im glad you found they at least said 'there is an issue/something' its when they dont have the kindness/compassion/courage even to say 'we dont know' that really hacks me off.
Blue skies out there today, have a lovely lovely weekend, and thank you for taking the time to write, G
Hi Gillybean1,
I've not used this service before but Nutris.viapath (sorry I don't know how to do a link!) do a range of B12 blood tests that depending on which one you choose includes an MMA test.
The 'My B12 test' includes Total B12, Active B12 and MMA and costs £60 but you either have to go to London to get blood drawn at St Thomas's hospital (no extra charge) or arrange it yourself at your own cost; useful if you have any nurses in the family or a nurse friend that can take a sample for you.
The 'My B12+' includes Total B12, Active B12, Folate, MMA and Homocysteine. This one costs £105 and again you can get blood drawn at no extra charge if you go to London or arrange it yourself at your own cost.
I've taken this info from their site so I'm assuming that you can still get blood taken at St Thomas's even though Covid restrictions are in place?
As I said I've not used this service before but other forum members may have and could possibly offer feedback?
Take care.
Wow bless you Hedgeree, thats so kind of you to help me with this, a much much better price, I will look into that this afternoon.
Every best wish and take care too, G.
Hi Gillybean1,
No problem. I'd been having a search around on the internet for MMA tests and it coincided with your post so thought it would be good to let you know.
As I said I've not used their service before but worthwhile exploring. ☺
Hi Hedgeree,
Ok great, if i do theirs i will let you know how it goes, Many thanks again
Best wishes G
The MMA test is a marker for indicating some B12 is reaching some cells in the body. However, it's sensitivity for indicating whether or not patients symptoms are related to a B12 deficiency has never been properly evaluated. Like all of the commonly available laboratory tests for assessing the absorption and utilisation of B12, it does not seem to correlate well with patients symptoms in all cases. The classic example is those patients who develop deficiency symptoms after bariatric (stomach) surgery. Their elevated MMA results can be 'rectified' with small amounts of B12, BUT in many cases their deficiency symptoms are not rectified at this level. In other words, this test should not be used to conclude that all patients are receiving or absorbing sufficient B12 to alleviate deficiency symptoms. My husband believes that there is some unknown process that limits absorption into the Central Nervous System. Some researchers in the USA say that this is evident in patients older than 55yrs. On the other hand ,why would bariatric surgery cause such a problem to become evident? In conclusion, an abnormally elevated MMA test result can indicate that insufficient B12 is being absorbed into the body, but a negative result doesn't necessarily mean that you are getting enough B12 to help deficiency symptoms . Sadly many doctors are not sufficiently aware that the sensitivity of this marker test is untested.
Hi Retteacher,Thank you for taking the time to comment,i understand then that its not that straight forward,and i guess i am just wanting to tick something else of the list, If its a positive then it will go on my notes ,longterm much easier and be assisted with injections, if not then i will have to self medicate to see if it helps, after 10years + of seeking solutions, having been written off countless times, bed ridden to better able, im blowed if im going to give up now, i think im getteing cantakerous (spell check!) in my old age!
I understand too what your husband means,if he means based on the gut being our 2nd brain, i noted back in 2002 at a lecture,even then there was healthy talk of the guts ability to survive /function without our brain (no info on how long) but that together the two systems comminicate continually,,vegas nerve etc.
I suppose bariatric surgery must compromise some communication pathways too, if the brain signals received to smell, taste, individual food - enzymes, then if you have reduced the size of the stomach bag or inhibited it, then those signals to suppy HCL,IF,Enzymes are not going to be switched on. If HCL ,B12, IF is reliant on the gut bag walls/cells, then if 3/4 of it has been removed,that will be a massive problem to the rest of the body function.
I have this fairy vocal discussion with my stepson, who has been on hard core PPI omeprazole for 7 years, prescribed in his early 20's for a touch of self induced heartburn, from not eating all day but living off black coffe from waking till 8pm at night then eating.
My point to him that why would you want to strip 75% of your stomach acid out ,when you need to absorb to sustain your health and vigour, within 3 years i could see thinning hair, increase in picking up virus's, black sunken eyes, 5years in some memory and cognitive changes............ i have said from the get go for him to keep an eye on his D, B12, Iron, so goodness only knows what bariatric surgery does longterm, i guess again in those circumstances its a balance decision.
Many thanks to you, and every best wish, lovely blue skies out there, G
Just to clarify- taking b12 will decrease mma so you need the 3 month washout period just the same as testing B12. As here google.co.uk/url?sa=t&sourc...
And to add - as Retteacher said the testing picture with mma and homocycsteine is by no means clear - so tbh you might be best just going from what clears your symptoms. There are different types of methyl b12 and .And make sure the co factors are there. So a few different things to try if you go the empirical route - unless you've mentioned this already - the text in this thread is so dense I might have missed it.....
Hi jox1,
Oh my, its not straightforward at all,,,im not sure what to do for the best now, limited funds need to be used wisely... there seems to be a difference of opinion on here.
Thank you very much for the link though, i can see what you mean to just go for what clears the symptoms, i guess after so many years of searching to get well, and finding out i had a mother and grandmother with PA, i thought i may have been missed due to years of B Complex and i thought MMA might be worth doing regardless.....
Thank you for taking the time to respond, every best wish ,G
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