Well, I'm always saying "Don't feel tempted to stop self injecting, just to prove you will deteriorate."
Yet, here I am, having deliberately stopped the nipple cream - just so that I can show the consultant what happens with my angular cheilitis as soon as I stop. And guess what happened ? They phoned up and cancelled, the day before !
No, it gets worse - this photo is me, having been sent a second appointment date, doing exactly the same thing again. And guess what happened again ? I'm not even going to say it.
Luckily for me, the third appointment has been arranged for next Monday ...... I'll let you know !
Call me a living fool if you will, but here's my thinking:
The first consultant could not grow a culture of any kind, try as he might, then advised me to try the nipple cream: it worked straight away ! But still no reason. The burning tongue stayed. He passed me to a second consultant - who immediately said "Have you got a vitamin deficiency ?" and ordered a load of blood tests. Which came back fine, with a very high B12 level: as expected. He gave me copies of all test results.
This second one has never seen my angular cheilitis, as it has been almost managed away by the nipple cream. So I thought "This one will also call it a day soon. It might be the last chance for me to get any answers." So I stopped the cream applications and within 48 hrs, it returned exactly the same as it always was.
For over a decade.
So, just like all the B12 deficiency symptoms, it hasn't gone. It is, all of it, still there in my opinion. The burning tongue is a daily nuisance that hasn't gone. This in the photo ? It's not the worst thing.
Only when I laugh !
.....Or cough. Or sneeze. Or clean my teeth. Or eat an apple.
Roll on Monday. Nipple cream on standby.
Written by
Cherylclaire
Forum Support
To view profiles and participate in discussions please or .
Oh dear sounds very painful & very annoying they keep cancelling 😥 Here's hoping for monday!!! 🙏
I can't remember what you're doing folic acid wise? I also get what sounds like a.c. when i stop my daily high doses (up to 10mg), as well as mouth ulcers, but it's nowhere near as bad as yours. Wish I had some answers for you! The burning tongue must be even more frustrating. I won't joke about trying nipple cream ... 😜
And I know you've read all the things I can think of to suggest to get your B12 working properly.... more B vitamins, methylation, all the othermacro and micro nutrients, etc, etc. Diet, etc. Hanging by your toe nails from the nearest lamppost, etc... Although I bet you haven't tried dancing naked by a pond under a full moon... 😜😛😂! Saying that, I can't be sure if it works either! 😁
All I can say is well done for persevering and good luck on Monday. 🤞 x
Thanks Jade. I knew the LMAO part but I couldn’t figure out the ROTF part. I have bad hips so rolling on the floor is out of the question but thanks for starting my day LMAO you guys. Laughter is the best medicine. So sorry about the chelitis, CherylClaire. I have had it around the corners of my mouth, in response to toxic chemicals, and it was very painful. I self-treated. Did your doctor suggest nipple cream?
It worked on me straight away (48hrs) and as you can see, cannot afford to stop using it. So not a cure. Still a bit of a miracle.
I use it twice: once in the morning after cleaning my teeth, same at night. Makes it easy to remember.
I was told not to use anything else (as lip-balm or pots of cream etc can harbour germs) and to avoid cross-contamination by washing hands, using a bit of nipple cream off a teaspoon, and not to go in twice !
Expensive but worth a try and you don't use much so if you follow rules above, it lasts.
so sorry your going through this Cheryl will they not accept that photo as evidence or am I pi..ing in the wind as usual.
I hope you find that elusive star doctor on Monday there’s got to be one somewhere out there.
Think they started to get a bit alarmed at the photo production - "obsessive" a difficult label to alter to "desperate" - and would still now have had to deteriorate by nipple-cream avoidance to get these results on film, such is it's healing power !
If I really do get cancelled again, I will start back on the n-c - and send the consultant a photo album !
Im so sorry Cherylclaire. That has to hurt. I get stopping injections to remember how bad it can be. So sorry they cancelled twice. Maybe take a video so you don't have do it again. Can show the progression. At least make it worth the suffering. Good luck on Monday. 🦋💙🦋
I would truly never deliberately deteriorate by stopping or reducing B12 injections, however desperate I got !
I once read the results of an experiment where this was done - not to prove anything to a GP in desperation, but as research:
"Experimental vitamin B 12 deficiency in a human subject" [on 7th Space interactive in 2016]
One B12-deficient brave soul (possibly with a functional defect) started the experiment in a replete condition, then depleted himself by witholding treatment, having a B12-poor diet, until "significant metabolic disturbances" were observed.
Gulp.
Serum B12, "live" B12 (HoloTC), MMA and homocysteine were all measured weekly.
It took 728 days (2 years) for the serum B12 to reach minimum range level of 171 pmol/L from a comfortable 606 pmol/L !
Day 742: HoloTC reached the minimum level in range for the first time.
Day 609: homocysteine reached it's range's upper limit.
Day 386: MMA exceeded it's upper range limit, peaked four times- reaching a maximum peak of 0.9 on day 658.
So the first lone indication that could've been noted was over 1 year from the start of this experiment. Except it would not have been normally since few people get MMA tests, especially from a primary care request, and unlikely to be picked up immediately. Also unlikely to be acted upon, since upper limits for this test vary greatly and range is huge (usually about 0 nmol/L - 280 nmol/L).
How many GPs would still be looking at any of these indicators one year, two years down the line ?
Nothing recorded here about how this poor guy was feeling by then. That bothers me.
I read about this experiment too. I would never go that long. I need find out how often I need to inject, so I have been seeing how long before I need one. I can't imagine going more than a week without an injection. I've gone 2 days and on day 3, I inject, not wanting my brain to confused. That's what I feel first. My brain and talking. I get tongue tied and brain tired. But if I needed a doctor to see how I get, I would do it. Only for a couple weeks, not 2 years. That is very brave. Too bad no one in the medical seems to have learned from his sacrifice.
I can imagine that somewhere there is a photographic/video record of this man's deterioration, too. It would make sense to maintain records of some type of visual monitoring along with those four weekly tests.
Lucky if you get a good consultant - but does need to be the first one.
I saw three gastroenterologists :
The first one listened to me encouragingly, told me to see my GP for another injection when symptoms returned and not wait for the three months. Seemed supportive for the 15 minutes and had a student (?) taking notes. But then wrote a report telling my GP that I had IBS which had not even been mentioned. No tests.
Not satisfied, my GP sent me to another one.
The second one allowed me five minutes, told me that he had nothing to add because I didn't have a stomach ache. Wrote telling my GP that I had IBS. No tests.
Not satisfied, my GP sent me to another one.
The third one gave me plenty of time. She ordered tests, made a plan which included camera up, camera down. I saw her twice. The second time she was running late, covering a colleague as well as her own patients. She told me I definitely did not have cancer or Coeliac disease (which had been suggested by tests), might have SIBO (ordered antibiotics trial) -but thought likely IBS. She did not understand why I was upset about this.
More devastating if you trust the consultant and finally feel you may get an answer, isn't it ?
When I reminded her of other symptoms which would not cover this, she suggested Fodmap diet (which I'd done already with a dietitian), neurology (which I'd done too) - then a psychiatrist. I said no - not unless they can make my hair grow back, stop my gums bleeding, my mouth from splitting etc etc etc.
So it's either IBS -or I've got mental health problems ? My GP did not believe that I had IBS. Neither did my dietitian.
A real shame that the final item on her plan, the small intestine MRI, never happened. This one might have given me something since it has never been done. I did write to her and got a reply - but mostly just copies of blood test results, not answers to the questions I'd asked nor the MRI.
Sorry your neurologist was rubbish. I saw one and remember being really shocked when he said that he didn't know much about B12 deficiency. Now I appreciate the honesty. He also gave me time, was friendly and ordered tests: electric nerve tests and brain MRI.
Wish you'd been as lucky. He would have been interested and involved. You would have liked him.
I have little bumps all over my scalp like little acne or something. And I did get acne on my shoulder. They do itch so bad that i scratch them open and theyand take forever to heal. of course I pick at them because it's irritating because they hard and scaly. I did have one of the hard bumps biopsied the other day because my oncologist thought I had skin cancer but it ended up being this: Benign skin showing features of lichen simplex chronicus / prurigo nodularis with erosion, scar and focal squamous cyst.
itsays it's some form of eczema which I never had before. But I also have a dry scaly spot on my elbow that I never had before either
my shoulder has cleared up my scalp still gets tiny blisters or acne all over it. Does that sound similar??
so sorry for all this. I had angular cheilitis and burning mouth syndrome. Although the chellitis cleared up on B12, the burning mouth didn't until I self-treated with levothyroxine and then T3. I now get both prescribed. I was sent to consultants and given mouthwash by gp. Nothing worked . I've been on thyroid meds 2 years now.
Will ask for thyroid, folate and ferritin tests at the next appointment (Monday I hope) - just in case. Last time he tested these -all results good. but as you know, things can change without you noticing.
Okay - here's the bad news. My appointment today was cancelled by phone about an hour after I got the confirmation letter in the post. This is the third time.
To be fair on them, they did not ask me to deliberately deteriorate by stopping the nipple-cream use ! No, that was all me.
I think what I'm hoping is that approaching B12 deficiency symptoms specialism by specialism may not be the best option for us - but does give you access to more consultants, one of whom might suddenly say "I know exactly what this is" - and be right !
So me smothering the evidence in nipple-cream isn't helping them to get to that point.
I also realise that, by the time you are at this stage, you are likely to have to accept that no-one in the medical profession will join the dots in quite the way that we do ! In which case, for this particular complaint, it's back on the n-c.
If this is anything to do with B12 deficiency, and I believe it has everything to do with it, then why does it remain a problem six years (and countless injections) later ?
All of these persistant problems cannot be unrelated - too many coincidences timewise. None are accidents or emergencies - or anything like the nightmare symptoms of earlier years.
Well I can understand your need to demonstrate it to their faces! Even if you hadn't gone through all that, cancelling an appointment 3 times in a row is just... not nice.
I agree with everything you say about specialism by specialism in B12D.
I'm curious and maybe a bit confused now... I don't dispute it can be B12 related and in fact I agree - for me a.c. and mouth ulcers are primarily low folate and a small part is B12. If I skip folic acid for a few days, they come back pretty quickly. But are you trying to get more frequent B12 on prescription? Or restesting B12 related labs? Or simply trying a diagnosis, any diagnosis? I am a bit brainfogged today 😜
I want to know whether my GP's original diagnosis of functional B12 deficiency, which was confirmed by the testing lab, still stands despite later study of DNA not finding a cause. And, if it does, whether I will need two (self-) injections a week for life and whether I can still expect to gain improvements.
And whether the remaining symptoms are directly related.
The angular cheilitis is not bacterial - or at least they could not grow any cultures from it - but would be a constant (but as yet inexplicable) presence if not for the nipple-cream. I have had this condition for a couple of decades.
Have not, as far as I know, got low folate now although it's possible. It does not explain this completely, as my folate level has been good for a few years now and angular cheilitis still lurking.
Thank you for explaining! Yes it makes perfect sense.
As for folate, my levels are always >20 or >40 but if I skip a few days, it all comes back. It sometimes concerns me that I have to take so much, but needs musts.... my mental health also suffers greatly so that's the main reason I keep taking it.
I would not be comfortable about raising my folate that much. I only supplemented when I could see that it was dropping again, and it took a couple of years to for that to stop happening. But it did. Ferritin a similar story for me. GP wanted 60 ug/L but Oral Medicine consultant No 1 preferred 80, which was not easy to get to. My GP monitored both for me and advised me well.
Post-covid, none of that happening any more, but Oral Medicine consultant No 2 did test everything and gave me copy of all results. Seemed fine then. B12 injections I'm continuing at twice a week - so results always above range.
We are all different though. Something that seems to go unrecognised by many.
Have you been tested or treated for B2 - Riboflavin - deficiency?
I know it's a US info site and so may be difficult to use with UK Drs but I thought it might be worth a read if you haven't read it already. Interesting about the Riboflavin injections - a bit like B12 in the levels vs symptoms vs treatment actually required.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newbie--shifting symptoms?
I don't want to go down the rabbit hole again...
Loading dose jab make me feel very sleepy the next day.
New box of B12, did it make me feel ill
