Hello everyone. I wrote a couple of weeks ago about visiting the dentist and finding out that she knew about Pernicious anaemia. She is recently qualified and it was part of her dental exam, and she was questioned about it. I was stunned because she was only the second person I had found since 2015, My Gp's, neurologist and haemotologist hadn't known about it so like most of you I self medicate and inject EOD .
You asked if the dentist would be able to prescribe B12 so I asked her................Sadly no, but, she said she would refer anyone with symptoms, tongue, lips, gums etc to the oral dental hospital where they could, or she could be in contact with a gp practice. Sorry, how wonderful it would have been to have someone knowledgeable and willing to help. I see her in a couple of weeks so can ask anything else., she is very interested and helpful. Take care everyone , best wishes to you all.
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purpleabc
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How wonderful that she's willing to be proactive in helping her patients.
Obvious signs of B12 deficiency in my mouth were missed by several dentists eg
1) Sore spots in corners of mouth ( I think this was angular chellitis)
2) Splits in tongue
I was told this was fissured tongue, related to geographic tongue...it has partly healed over years of B12 treatment but I'm left with permanent splits.
3) Loss of tongue cells
I could see individual tongue cells (papillae) come away.
4) Indentations like bite marks around edge of tongue...like a pie crust
Think this is called crenated tongue or scalloped tongue.
5) Gums that bled for years although I was careful with tooth brushing/cleaning
I wish I'd had an on the ball dentist like you and even better one that was willing to contact GP.
I saw my dentist again yesterday and she was asking about the forum...nice eh. I told her that you had mentioned about possibly becoming a guest and writing a blog for PAS. She was very interested. Said she had a friend who would be very good as she has worked in dental hospitals. I will copy your message and give her some details of how to contact them. If you have any info you think I need to tell her I would be grateful. I'm not very clever but will do my best. It would be good if she was aware of the difficulties we have getting the actual injections and the lack of knowledge by a lot of GP's l know. She was aware of the difficulty getting diagnosed !!
Good news that it is now part of student dentists' curriculum !
I would imagine piecrust-edged enlarged tongue, burning tongue, red smooth tongue, bleeding gums and/or cracked, sore and bleeding corners of the mouth (angular cheilitis) are all difficult to ignore if you are a dentist.
[Or, for that matter, a GP in a face-to-face appointment.]
Even if these symptoms are not specific to B12 deficiency alone, if present they would surely be suggestive of a vitamin deficiency. With B12 at the top of the list of possibilities.
Sadly, NHS dentists are hard to find in many areas now, private dentists expensive, and increasing numbers of people are going abroad for cheaper private treatment. Or not going at all.
I recall a forum member (I think it was deniseinmilden ) telling how she lost a number of teeth due to nerves deteriorating - but that it took a while before the dentist realised that this was her problem - and nothing to do with continuing poor diet/hygiene.
One of the private dentists near me will do monthly shots for £35 (when I last enquired) . They said it was one of their most popular treatments and had a staff member dedicated to doing it.
I can imagine the reply if we did get a letter to give them being "Yes but your system is flooded with B12 !" That really upset me every time. That and the superior look on their face. They weren't supposed to check B12 once injections were in place, waste of time and money, it was supposed to be flooded..........sorry, just off on a rant .
A very lovely oral medicine consultant once told me that he was concerned about my "sky-high" B12 being immeasurable, so it could possibly be accumulating. I was, up to that point, quite happy about it myself ! I could see his point, though I was reluctant to reduce my frequency.
A few years later, he told me, in front of his students, that he had completely changed his mind after discussing this with colleagues - and said that my body needed the frequency to function properly, and that tablets would not work for me !
Lucky I didn't reduce my frequency, then, much as I liked the man.
I find that I'm mainly able to function if I get about two injections a week. If not, then not. It also takes a while to get back on track if injections are late/missed. Illness, stress or physical/mental over-exertion can require a temporary increase - but not always; sometimes I can ride through it.
Good quality sleep certainly helps - but very relieved that I do not still need 14/15 hours of it !
Trust your own judgement. Trust your dentist. Don't accept less of a life.
What level was your b12 before it was ‘unmeasurable’? I limit myself to one injection a month, as my results active and serum were off the scale, due to anxiety about the issue. I really need more than monthly and don’t know what to do about it. Other than to avoid being tested.
I am not sure about Cherylclaire's B12 level but mine measured over 2000, that was their marker to stop counting I think. Doesn't matter how high it is if you have PA, you are unable to use it all . It needs to be flooded so you can get what little you are able to absorb. I have no medical knowledge but self inject EOD, any less and l am sliding backwards into lethargy and brain fog. I had neurological problems which have disappeared with the EOD injections. I am very lucky. Ignore the numbers and listen to and watch your symptoms.
So sorry you are suffering like this. It is possible to talk to someone from the Pernicious Anaemia society, they would be able to help with what to do to get more help. There are so many helpful leaflets, even help writing to your gp. Or better still ,change gp !Mind you, I did that and it didn't help at all, they were ignorant as well. PAS will be of help I am sure, sorry I am not able to be of more help.
My level was 196 ng/L - luckily the normal range started at 197 ng/L. In my area, the normal range finished at 771 ng/L. When measured after injections started, my level was over 2000 (yes, as purpleabc says, this is where it becomes immeasurable).
Two months later, it was 860 ng/L - still over the top of the range. That was in 2016. Since then, it has been measured only twice - in 2020, again in 2024. Why, I can't remember, and pointless as it is always over 2000 ng/L.
I was given 6 months of 2 injections a week, then in 2017, I started self-injecting every other day (EOD) and 2 years later was able to reduce back to the previous regime. If I continue to self inject twice a week (and I intend to), I doubt that I will see any more improvements. This is now about symptom management as much as is possible. I'd like to be able to say that I'm near-perfect, but I'm not always. I'm mainly doing as well as I can, and at least have a better understanding now of what I need and when. Less doesn't work for me, and causes a backslide that takes a while to correct.
None of us are the same, and none of us stay the same, day after day - so it is important to recognise gains, symptoms, deterioration - small slow changes sometimes - and be aware of when you're not improving so much as just accepting less of a life. I have altered my pace considerably, but that in itself was not a bad thing. Energy is a precious resource to spend a bit more wisely now, that's all. Not giving up on me, not giving up what makes me happy either - and giving back is never a waste !
The Pernicious Anaemia Society welcomes anyone with B12 deficiency - they recognise how many of us remain undiagnosed, and do not expect you to have a PA diagnosis to be a member.......
I wonder if my dentist needs to be invited to write a blog for PAS ? I will see her on the 9th and give her the details that Sleepybunny left links to at the top of our messages. I want to make it easy for her because she is one of the very few who are trying to help us.
I have asked her already !!! She actually instigated the conversation, asking about the forum. She wants to help and has a friend who is is a dentist working in a dental hospital, probably with more information than she has. She is very interested and I am sure will write or her friend will. I just wondered if she needs an invitation first from PAS
I contacted Pas with the info about my dentist and they were amazing and quick, they have contacted her and invited her to write a blog so we will have to wait and see now. Thanks for all the help.
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