B12 and MMA

[D9d9]

Been taking high dose sublingual B12 since November. Will a blood test now for MMA be skewed results or will it show if I need injections?

[Gambit62 Administrator]

MMA is a secondary test for B12 deficiency - looking at a metabolite that will be raised if your cells don't have enough B12 to facilitate the process that breaks it down. MMA can be raised by other conditions - particularly kidney problems so you would need both MMA and a kidney panel. High dose oral can raise B12 levels and makes interpreting serum B12 difficult. If you had low B12 that has been corrected then its most likely that any problem with MMA will have been solved.In some people significantly raising serum B12 can affect the transfer between serum B12 and cells making it much less efficient which could leave you with raised MMA.

To be honest there probably isn't much point in doing MMA unless you have stopped high dose supplements for exactly the same amount of time that you would need to stop them to get a serum B12 base-line - ie at least 6-4 months.

[D9d9 in reply to Gambit62]

Thanks for the help

[Hamayeshguy in reply to Gambit62]

So it's not possible to test MMA and Hsy after injections?On 2013 I had sever B12 deficiency and after couple of injection my GP moved to other city and I couldn't convince other doctors to continue my b12 injection. I didn't have any symptoms in that time except I had too much stress. Then symptoms started to show up during these years first stomach muscles and was getting weak then my eyes getting weaker blur vision and double vision and then walking problem but this last one to some extent got much better. Losing muscles. But last November after I decided to a little bit exercise my other symptoms showed up like sever nausea sever dizziness sever gastrointestinal problems and shortness of breath ataxia tinnitus hand carpal tunneling. Several times I visited doctors hospital and no major problem found in my blood work but no one checked my b12. Many other test done. But by trial and error I found I feel better when I take B12 then I ask GP to inject B12 and after that doctor checked B12 folate iron and all were normal but I was feeling really bad and since doctor stopped my injection I switched to tablets it was a little helpful and for six months I was a little bit better but sleeping a lot and had so bad symptoms. Then decided to inject myself and after 16 injection I'm much better but I need to know how to check my MMA and Hsy or any other tests. In the meantime I tried to add more walking to my daily exercise but I was almost fainted and now have to visit cardiologist. This new symptom is so bad if I walk a little fast I feel getting fainted and just a little bit stress mentally completely make me fainted. I don't know what to do. Is it possible my blood circulation has problem or heart or blood vessels git narrowed in neck or something?

On November since my stomach muscles were so weak caused hernia in my belly button without lifting any heavy object.

I think my b12 was depleted because of long-term stress ( almost 13 years I have a stressful life).

My neurologist checked my nerves electrical conductivity but everything was ok. I also checked my eyes there was no other issues.

Please let me know How to find out my health problem. Currently I inject B12 subconsciously every five days and I feel much better but I need to go for other tests specially this fainting issue us so serious.

[Gambit62 Administrator in reply to Hamayeshguy]

Hamayeshguy You can do all the tests that you want but interpreting the results gets more difficult in some circumstances, eg after loading shots and you have to be prepared for the results to be inconclusive. Tests can be expensive and practically focusing on symptoms rather than tests may be more productive.Having said that the symptoms overlap with a number of other conditions and it is possible to have more than one condition and even likely if we are talking about autoimmune conditions so important not to fixate on one possible explanation

[Cherylclaire Forum Support]

I can only see a point if the B12 seems to be ineffective and symptoms worsening.

In that case (renal problems having been ruled out) a raised MMA test result could be an indication that functional B12 deficiency is the problem. Meaning that the B12 is not getting to cell level. It is quite rare. Normally, the B12 from loading doses would link up with high serum levels of MMA and bring down the level fairly rapidly (normal range: 0-280 nmol/L) -so the opportunity for finding a high or raised level will have been missed.

MMA tests can be hard to get: my GP requested this test three times before finding a major hospital that could do it.

Over the years, my MMA was tested 5 times and found to be raised every time (350-400 nmol/L). I was given a confirmed diagnosis of functional B12 deficiency although DNA experts could not find a cause for this. When they tested MMA again for the 6th time, three years after the original test requested by my GP, it had finally dropped into range for the first time. I can only assume that those three years of frequent b12 injections were responsible for that. Renal problems were ruled out early on by GP as the cause for raised MMA (blood test), small intestine bacterial overgrowth (SIBO) was also ruled out by breath test and trialled antibiotics course.

My GP still checks folate, ferritin, vitamin D, thyroid, FBC and liver function regularly- now once a year. My last test results were Nov. 2020 and were the best they had been for 6 years- since I first went to the GP with B12 deficiency symptoms. I also have vitamin D and Raloxifene on prescription for osteoporosis of the spine, and am still seeing an Oral Medicine consultant. All other possible alternatives have been ruled out along the way.

I continue to self inject every three days. Improvements were slow but symptoms now mainly manageable- not gone.

[D9d9 in reply to Cherylclaire]

Thank you for your reply.

[Cherylclaire Forum Support in reply to D9d9]

No worries. Try not to get disheartened.

Symptoms often get dismissed as "something else" which can lead to compartmentalised symptoms getting investigated by separate specialists. This search can seem endless and fruitless.

The truth is that B12 symptoms can for some be far more serious and widespread than is understood by many professionals, certainly life-changing- and so often remains undertreated. The search for "something else" stems from a disbelief that a simple vitamin deficiency can wreak such havoc; "surely something more severe" is perhaps a more accurate description of the thought processes behind referrals.

My thoughts were always either "What if they are right ? What if there's something else and it gets missed ?" or "Go along with all this till they run out of steam/ alternatives." Depending a lot on mood and confidence levels at the time. I was lucky to have a good GP who watched and listened and trialled- and sent me on to appropriate consultants.

Some of these knew far less than she did about B12 deficiency.

Are you on sublinguals because your B12 injections were stopped because of covid pandemic ? Are you self-diagnosing B12 deficiency and trialling sublinguals first ?

Have you got a good GP that can give you continuity -or is it whoever is available to call you back now ?

[D9d9 in reply to Cherylclaire]

I took sublinguals as I had lots of symptoms and felt unwell. The Drs wanted to put me on tablets but I was already taking a multi Vit with B12 so knew I needed something else. Little did I know that high dose skews blood test results once you start on them.

[D9d9 in reply to Cherylclaire]

My levels before were 209 and I had many symptoms...

[Cherylclaire Forum Support in reply to D9d9]

How are you feeling now ? Do you think the sublinguals have helped you -even if in a minor way ? You have given them a fair trial by now.

Perhaps you could persuade your GP to treat symptoms rather than go by blood test results ?

If you start with a comprehensive symptoms list, then monitor a selection daily - so make the choice to cover a range: most visible, most severe, most frequent, most life-changing etc. -and don't try to do it all. Track what happens with these few on a chart and see if there is any sort of pattern emerging. Some chart both frequency and severity. I chose just frequency -as I found it very difficult to give symptoms marks out of 10 every day ! Don't make it too complicated.

You may be able to demonstrate that trialling B12 injections, while monitoring their effect on your symptoms, would provide useful information as to whether this would be a more effective treatment route for you. Agreeing on a review date that would give time to see any improvement would be useful.

I hope you have had folate, ferritin, vitamin D checked as well. A thyroid check might be a good idea too. Any of these could also be affecting you or be responsible for some of your symptoms.

Don't set your hopes too high. This is not necessarily the miracle overnight cure that some people are expecting. It can take quite a while before any improvements are evident and in fact, some people report worsening symptoms before they start getting any results.