B12

[Belalf]

I recently had the MMA Urine test done and it came back normal. My B12 serum was at 264 pmol/L, i have lots of neurological symptoms. Does the normal mma test mean that there is no possibility that my symptoms are coming from a b12 issue?

[Gambit62 Administrator]

It means that it is extremely unlikely that your symptoms are related to B12.

Symptoms of B12 overlap with a huge number of other conditions. Have you seen a neurologist or are you waiting to see one?

[thinkin]

I hope you have seen a doctor about this. Don't do it on your own unless everyone has given up on you. Keep mithering. Be that awkward patient, sometimes you just have to. Make sure your vitamin D and thiamine are OK too. B vitamins don't work in isolation that's why they are a complex. If all else fails make sure you get referred to a Prof of neurology at a good teaching hospital. I read that levels of vitamin D and B12 have to be above 500 if you have neurological issues (FND Hope website).

If you have a sulfite intolerance/allergy then the actual levels of B12 are irrelevant. This is because they are being used to do the job of sulfite reductase enzyme that people with this lack. It also uses the bioactive B6 too this all impacts on thiamine availability. It can get worse at any point in your life. Perhaps look up the symptoms. I have it, I hope you don't, it takes a lot to keep me well.

It's common in asthmatics (10%) and not uncommon in the general population (1%). Usually people with this are rubbish at drinking alcohol, especially white wine and beer, commonly causing stomach upsets and vomiting. You may have gastritis, hay fever, latex allergy, and more. Even allergies to some drugs turn out to be an allergy to this very common preservative. There are websites out there (and many telling you that it doesn't exist when it clearly does - usually the wine industry). Not everything is on one page, but checking a few the picture begins to grow.

It may not be due to this, but it's a common enough problem to at least check it out. Remember to print out anything if it's relevant as doctors don't seem to know about it. I've only met one GP who knew that I'd have to inject B12 everyday - not that she'd prescribe it on the NHS. Not even my respiratory specialist knew, which is worrying.

I never thought I'd be one of those people taking supplements everyday, but life has a way of surprising you I suppose. I can get a bee in my bonnet about it, but it did leave me in a wheelchair, struggling with everyday living, it cost me my job, in fact my career. So if I could spare just one person a lot of heartache then it will be worth it.

Don't, whatever you do, let anyone tell you it's all in your head. xx

[Belalf]

Hi what a lovely post to read. Thank you. Yes most people have given up on me and im embarrased to even discuss the way im.feeling with my partner, family and GP, i feel like a stuck record on repeat thats getting no where. I was sent to a counciler, put on anti depressants. I kept going in having panic attacks but that was only because I was terrified of the things that were going on with my body. I have seen an ear nose and throat specialist as it began with constant dizziness, then he sent me to a Neurologist ( only because I pushed and pushed, going in and out crying to him and begging, i thought i had a brain tumer) however i had a brain MRI and a brain CT scan which came back fine i had an mri on my inner ear which was also fine. Neurologist had a quick look into my eyes asked me to do a few things and put it down to stress AGAIN! it wasn't up until January i went back to the gp and he done more bloods to find my vitamin d levels were only 37 nmol i felt so bad by this point, had to drop out of college, my eyes couldn't focus, sensitive to light, extreme fatigue, aching all over my body. I felt like i was dying. I have been following the vitamin d protocol on Facebook for around 6 weeks my fatigue has got better and aches and pains have reduced. So I feel the vitamin d has played a great role in some of what I've went through. Do you know if low vitamin d can prevent b12 and other vitamins working properly. I have always had excema and hayfever, i do drink alcohol every so often seem to get more drunk than my friends do never really thought much of it! Thanks again for your reply x

[Hidden in reply to Belalf]

Have you been tested for intestinal impermeability (leaky gut)? You can get it done privately. Not recognised on the NHS but it’s an area of gastroenterology that’s being much researched. It’s easy to test for - just use a good quality lab. Some of your symptoms could point to this hence my suggestion.

[thinkin in reply to Belalf]

It's not a cheap or easy fix, but there are a variety of ways people find to treat it. Mine is really bad so I have to throw everything at it. Organic, sulfite free, daily B12 injections, and enough supplements to make me rattle.

Low vitamin D levels are dangerous no wonder you are feeling so lousy. Being over weight is also an issue with vitamin d as it gets taken out of your blood stream and stored in your fat (an issue I have). Getting enough sun is only relevant in the Northern hemisphere during the summer months, without sun protection, at midday for minutes depending on your skin type and medication - can be tricky. There are lights you can buy if you are flush, but not the daylight bulbs. It has to be a certain bandwidth of blue light - good for eczema too.

I found that my GP would not retest my blood again after the prescribed course and I have to take a sublingual spray as I soon started to have problems again. They say 1500% RDA but you only absorb 1% through your gums so don't think it's a ridiculously high dose. I just had to play around with it until I found the right dose for symptom control. I recently tried an oil based dropper but I soon felt like I'd slept in the tumble drier. Sprays are more concentrated as I evidently don't absorb through my gut.

Perhaps take a look at the FND Hope UK website (Functional Neurological Disorder). There are a great deal of problems that can be caused by signalling problems in the brain. They tend to simplify it down to "A software problem rather than a hardware one." There are too many doctors putting things down to stress - especially in women. The "It's all in your head" brigade are legion unfortunately. I like to tell them actually it stemmed from my liver.

Even if it's not FND the neurologists who specialise know what it is and what it isn't. My consultant is Prof Mark Edwards at St Georges, London. He's the go to guy, but his waiting list is enormous. There are a few consultants about the country - listed on the FND Hope UK website. Even the most informed consultant these days sends people away with the website for FND Hope and neurosymptoms.org. The site also offers patient advocacy. They have a barrister on their books so plenty of clout.

Over 30% of neurology referrals have FND so even though you haven't heard of it, it's very common. It also doesn't mean there's nothing else wrong with you, often there are other underlying problems, though they don't always find a cause. B12, vitamin D and thiamine deficiency are common risk factors.

I could go on forever, but there's quite evidently something wrong with you. I hope you find answers soon. xx

[Sleepybunny]

Hi,

It is still possible to have B12 deficiency symptoms with a normal range MMA.

Were you taking B12 supplements prior to your blood being tested as it's likely this would have affected your MMA results?

Taking antibiotics prior to test could also have affected the result.

B12 article from Mayo Clinic

ncbi.nlm.nih.gov/pmc/articl...

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

Article about Methylmalonic acid (MMA)

stichtingb12tekort.nl/weten...

Are you symptomatic for B12 deficiency?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Is there a history of auto immune conditions in your family?

PA (Pernicious Anaemia) and Coeliac disease are both auto immune conditions that can lead to B12 deficiency.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

B12d.org has online support meetings during pandemic.

b12d.org/event

A UK B12 document

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

Bottom right of flowchart suggests that doctors should continue treatment if symptoms have improved even if secondary tests such as MMA are normal range.

Useful B12 book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

Book's BNF info is out of date; see BNF link below.

BNF

bnf.nice.org.uk/drug/hydrox...

I wrote a very detailed reply on another forum thread with links to lots more B12 info eg

symptoms lists

causes of b12 deficiency

info about tests for PA

B12 books

B12 websites

UK B12 documents and articles

writing letters to GP about B12 deficiency

other B12 info which you might find helpful

healthunlocked.com/pasoc/po...

Forum members in UK are reporting problems getting B12 treatment during pandemic.

I am not medically trained.