I did say that I would show what the lovely ENT consultant described as "clearly B12 deficiency" - and also said that I was doing absolutely the right thing by self-injecting every other day, that it would take time and that I must be persistent. He also agreed with me that salivary gland infection and saliva duct strictures would impact on haptocorrin production necessary to envelop and protect B12 in food (extrinsic factor)
Now that I've seen this on screen, I can only apologise : it's really not my best feature!
I can only hope this proves useful for someone.
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Cherylclaire
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Oh, wow - fantastic news from your ENT chappy! Good for you!
Nothing personal, of course, but it's probably a good thing that it's not your best feature!! 😬😁😁
Thank you very much sharing it though - there's gonna be more than just me going "yup - snap!"
Definitely keep going with your jabs - mine looks pretty much normal now.
However it only takes a tiny bit of overdoing it (like today) to make my tongue pimple or split around the edge and if my malabsorption has a worse spell so I don't get the nutrients I need to keep the B12 working properly it goes back to looking like yours quite easily.
Shame that other consultants are not as educated about B12 as he is. People you'd expect to have a clue like gastroenterologists, neurologists, haematologists etc. don't seem to even look at you. It's all blood tests, statistics and scare tactics.
I might have caved under the weight of opposition had I not met him. I trusted him, I am getting better finally, and so relieved. Still it's no picnic this.
This is no more about IBS that my receding hairline, cognitive malfunction or burning feet : Yes, 3 gastroenterologists CAN be wrong. Very.
They can apparently earn more from you a different way. Very cynical, I know.🥴 I apologise to all the many good, honest and well trained ones out there. I was lucky to have been referred to one of those. For ever grateful to my hubby for being insistent and finding her.
Hi there. I’ve not been following your story but am interested in what you have found (and what is the solution). Thanks in advance.
What I think I've found is that my GP is far more intelligent than many of the specialists she has sent me to. The trouble seems to be that having said that this has gone beyond her remit, she can now only act on their advice and their advice is cautionary regarding B12 treatment.
What the reports say is not, however, what they are telling me at the appointments. This is not true of all the consultants, but once you are told that B12 is "carcinogenic, toxic and highly addictive" by 2 haematologists ..... you start to get very disheartened - and apprehensive about the ensuing report. Which then warns your GP against giving more than the "advised" 1 injection every 2 months (a frequency that I already knew would only make me deteriorate) - which is then very confusing. Why give it to me at all, if they can find no convincing evidence to do so, given what they have told me ?
It just seems highly risk-averse. They haven't said no and they haven't said yes, and what they have told me personally has not been recorded.
My GP originally found that I was B12 deficient and also needed more ferritin and folate. Later it was found that I also had osteoporosis of the spine and needed D3. Then because I was getting a lot worse when on the 1 injection every 3 months, she tested both my serum B12 and MMA: >2000ng/L and 351 nmol/L respectively (which is "over what can be measured" and "raised" respectively) - and given that she'd done the liver tests etc. she diagnosed me with Functional B12 deficiency which was confirmed by the blood-test laboratory.
My MMA has now been tested to my knowledge 5 times by the haematologists and every time it is between 350-400 nmol/L (range 0-280)- which is raised not high, but is now being considered as possibly "my normal" . My GP however told me that raised MMA is rare - as is functional B12 deficiency - and that the reason she could give such a diagnosis is because 10 years previously, she had had another patient (just the one) who had B12 deficiency, was unresponsive to "normal" treatment frequency, and who had raised MMA - which was diagnosed as being functional B12 deficiency. We're the only 2 that she knows of. Impressive work.
I have been tested by many consultants - and otherwise have only been told that I don't have Coeliac disease ("100%") and that the gastroscopy report showed "flattened mucosal pattern at D1 and D2" and "patchy gastric metaplasia" .
I now self-treat as I have otherwise have to deteriorate again to prove the haematologists wrong. This would certainly cost me my job and in all likelihood my relationship too. I'm not prepared to do this. Talbot and Turner researched functional B12 deficiency and concluded that the treatment was "frequent injections"- hardly specific but enough for me to be sure that this is likely to be my only option. I'm self-injecting every other day and have been for nearly 2 years- with very gradual and slightly unpredictable progress, but the first time I have been able to say that since 2016.
I hope this is of some help.
I am due to get my DNA results next month from the Inherited Metabolic Diseases consultant after waiting well over a year: this may help me - but may be of more help to my sisters, whose children all have autism. I didn't have children myself.
I will let you know if anything useful comes of that. I have no more stones unturned now.
Thank you so much for sharing that. It seems we’ve all got our stories searching for answers. A bit like you I have been digging around for clues, research and trying to figure out my symptoms which seem quite different to the majority on here. Your own story sounds similarly particular to you, You have great tenacity.
Like you I am on my own SI regime. I’ve never had MMA tested; I don’t even know what it shows but I think I’ve become hypersensitive to all the symptoms my body displays. Feels like my brain is on overdrive so now I’m working on that!! I’m sure neural pathways have a lot to do with symptoms for which doctors can find no structural cause.
Thanks again for sharing your story and I hope you continue to improve.
I'm sure that a scientist could explain methylmalonic acid's (MMA's) function to you. All I know is that on B12's long and complex journey, it links up with MMA. MMA will build up if it is left waiting for that link - in other words, if you're short of B12, MMA will rise and keep on rising. So what should happen is that when you start getting the injections, your MMA levels will drop back down again.
Mine didn't drop into range, but isn't massively high- so is just called "raised".
I have been told that there is a possibility that 350-400 nmol/L could be my normal, but of course there is no way of knowing.
Unless I stop injecting and allow myself to deteriorate, just to see what happens to my MMA levels, which having worked hard for years to find a level which helps me avoid deterioration, I am of course unwilling to do.
I don't know at what point above range it would become sufficient evidence to specialists that your MMA is abnormal whoever you are.
The MMA test has been promoted as quite a reliable second indicator to confirm B12 deficiency. It is expensive however, and not usually available at local hospital laboratories.
Let me know if I can be of help, Hidden , or when you are ready to tell your story. We all can learn from each other's experiences.
Latest problem for me to work out is why I have an irregular heartbeat that is most erratic after eating and at night: this is new- either too little B12, too much B12 or another problem. Not expected after almost 2 years of alternate-day self-injection. Has been going on for 2 1/2 months now, so not too worried !
Waiting for my usual GP to return back from 2-week holiday- I know that might sound ridiculous but there is absolutely no point in my starting all over again with another GP: having to explain self-injecting, frequency, consultant reports etc etc.
I already know that, with no background information, another GP will automatically hear alarm bells re. frequency. I can't do all this again: deterioration just to prove validity. It's far too dangerous because of irreversibility.
IF I ever do it (many times I've been tempted, and mostly out of exasperation) - reduce frequency of injections I mean- I would want to have access to someone who knows how bad I have been, and how much I have improved, because all they really have to go by is your records and return of medically-recognised visible symptoms. Referral to consultants that I've already seen is wasting time I wouldn't have left.
I asked them to produce evidence for these claims. Obviously, there is none.
Unfortunately, I believe, alarmist comments such as these, unsupported by research, get repeated to GPs as "specialist advice" about B12 and it is this that gets our injections stopped.
If any of this were true, then after 2 years of alternate-day self-injection, I would probably not be all that well - to say the least. In fact, this has been the frequency required to stop me deteriorating... and lately, gradually improving. Why ? No-one seems to know, and most (luckily not including my GP)are disinterested in anything other than stopping me self-treating by proving it to be something else - almost anything - which tack has been failing for the last 4 years.
NOT getting adequate treatment was what was damaging me, and so I had no choice but to self-inject if I was going to find a frequency that would actually help me. As for the Metabolics consultant who told me that he was "aware of the euphoric sensation experienced by self-injecting B12"...????
If only they would listen to us, they would probably hear the "anecdotal" so many times, it would almost become "statistical" - in the absence of any "real" evidence.
Then they might get somewhere close to a true list of symptoms -and an idea of what life can really be like for people when misdiagnosed and/or under-treated for years.
Sheer weight of numbers must surely be making them doubtful by now.
It only takes one person, doesn't it? That is why I think this forum is so important.
Even though this consultation was in November 2017, this man's experienced opinion still keeps me going.
My osteoporosis of the spine was never as bad as yours, my numb legs are mainly outer shins only, and I didn't get problems with balance just dizziness, vertigo and nausea at worst. I consider myself very lucky.
No; good question. Do you know what, Mes814 ? I was so grateful I never asked him. Now that's dumb. Dumb gratitude maybe. Funny how you end up expecting a fight, isn't it ?
I am currently seeing an Oral Medicine consultant who said the same thing on seeing photos but also told me there was a lot of improvement since then (due to frequent injections) - so much so that he now wants me to cut back on them ! He did say that I should not have the central groove though, which is what I am left with now.
I think the indicators are a tongue that appears too big for mouth, red burning edges (sometimes piecrusted), white-coated top surface. It certainly doesn't look a well tongue, does it ? You get used to a new normal, and it gets so you hardly notice because you have far worse symptoms to contend with. I'd had it for so long, I hadn't noticed how much better is has got lately and it's not a symptom I'd bothered to record simply because for years there was no change.
Adult Inherited Metabolics Diseases consultant sent me to Oral Medicine, mainly because of angular cheilitis (split corners of mouth). He took a culture swab and I'm seeing him again in January.
Oh sweetie that looks really painful! Did your consultant also advise anti thrush medication as well as the B12?
Thank God the consultant recognised and acknowledged this as a deficiency symptom. Just watch out for secondary infection - take large doses of Vit C too.
Look online for Herbactive. (Alan Hopking) The 'Daily A-Z Powder' is an outstanding daily support for health in our situation. Catriona x
Thanks for the tips, CatrionaNason - and funnily enough, this was not painful at all, aside from the burning sides of tongue, which I know to be quite common in b12 deficiency.
I was quite glad in a strange way to have a visually identifiable symptom (for those who are experienced enough to recognise it) - requiring no further invasive investigation, testing, arguing or begging !
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