Sore tongue and lips - B12

[Menora]

I am being driven mad by this condition as I don’t know what is causing it or how to cure it!

both corners of my mouth are cracked sore and peeling, and patches all over my tongue which are also very sore and visibly red. It hurts to eat and some foods make it much worse. Toothpaste is so irritating now.

I have had this for months. I went to a pharmacist who said ok let’s try cold sore cream (didn’t work).

I then went to another pharmacist who said you need your B12 levels done by your GP and to try thrush medication. I rang the GP and they wouldn’t see me, in person or over video or do my B12 and gave me the Nystan. This did not work.

I went to a different pharmacist on Friday who gave me another antibacterial cream and said you need your B12 levels looked at - cream isn’t working either.

I don’t know what to say to the GP that I haven’t already said or asked for. 2 pharmacists have told me to have my B12 done but my GP surgery are from the dark ages!

Is this a symptom of low B12?

I do suffer with a lot of stomach problems, I had an upper endo last year which was fine visually and on biopsy but I still have reflux. I have slow gut motility, IBS. I get a lot of headaches and bruise easily. I have very heavy periods and been badly anaemic before and feel like I am always in a bit of a fog but I don’t know enough about B12.

This weekend I slept for 14 hours Friday night, falling asleep at 8.30pm! Last night I was drowsy and tired at 8.30pm and I woke up at 8am. I am late for work every day and or have a headache

Does anyone have advice what I could say to the dismissive GP?

Yes, those are symptoms.
Could the pharmacy email your GP so it’s in writing? Hard to ignore then because if it was diagnosed later it would have to be recorded as a significant event.
Alternatively, write to the practice manager saying 2 pharmacists have requested you be tested and you they please arrange for this to be done?
You can buy tests-not sure how accurate they are and you shouldn’t have to, but don’t take any over the counter vitamins until you’ve been tested either way, it will affect the results. I hope you can get tested soon.

www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/diagnosis/

www.boots.com/medichecks-vitamin-b12-blood-test-10256008

www.spirehealthcare.com/treatments/blood-tests/iron-vitamin-and-mineral-level-tests/

I have B12 deficiency and all those symptoms.
I would suggest you look up the neurological symptoms of B12 deficiency and see if you have any of those. If you do I think you will find your GP would be more inclined to test you.
It might be a good idea to throw one or two into the mix

I do have nerve sensations but I put this down to previous nerve damage in my back.

I have what I call my slow leg which is very stiff when I first get up and I have some sensations of nerve problems in that

My biggest other issue is headaches. I have always had migraines but I feel like I constantly have a headache. I had a weird migraine last week where I had vertigo for about 30 seconds before I developed the headache. I also have very tight neck muscles which doesn’t help. I’ve woken up with a headache today

Balance, dizziness, vertigo, coordination, ringing in ears, pins and needles, tingle in my neck, fuzzy head, weakness, exhaustion - I could go on but they are all symptoms I have experienced. I am not surprised you have a headache!
I would be asking for an appointment and saying all these symptoms you have are concerning you greatly and affecting your ability to function and go about your day as you normally would.
If neurological symptoms are ignored the damage can be irreversible. Your GP knows this.
It is terrible that you are not being tested.
Is there another GP you can speak to?
In the meanwhile look after yourself

I honestly think they think I am making it up. I’ve unfortunately had quite a lot of asthma, gynae and stomach issues and I think they have me down as ‘anxious’

Can you send an email to your practice, asking them to confirm that despite your symptoms of xyz that two separate GPs (name them) don’t believe that you need a blood test to check iron, b12 etc

If they have to put it in writing they won’t be so quick to dismiss you. Similarly taking someone else along to the appointment. I’ve also been dismissed for symptoms “unlikely to be B12 deficiency”. Turned out to be...surprise..b12 deficiency.

Agree, put your symptoms in writing to the GP practice.

Beans are a very good source of Vitamin B12 and I've used these as a quick fix in the past when the corners of the mouth have been cracked. Baked beans will do. Good luck with it all.

I'm a dentist and this is common. But likewise there could be other causes too.
I don't think it would do any harm to buy some otc B12 supplements. You can get these in Holland and Barret or Boots

What could other causes be? I’ve had nystan for thrush. I’ve also had 2 types of cold sore cream

It could be a sign of being immunocompromised, again many reasons for this, some scary, some reasonable, such as auto immune diseases/diabetes/cancer etc.
It could be persistent oral thrush requiring stronger medication.
It could be an allergy. It could be eczema, it could be stress related, it could be a gastrointestinal problem, it could be a reaction to medication or a result of a habit. It could be hormonal. It could be a deficiency such as B12. The list goes on. You do need to chase this up with your GP. Perhaps push for a referral to oral medicine, and get blood tests/allergy testing.

I could have written your post myself and I have a B12 deficiency. It was discovered because I had bad stomach problems that they couldn’t get to the bottom of until a consultant noticed my B12 was down. B12 resolved the stomach problems over night, altho for all the other symptoms it brings I still need them regularly and it doesn’t appear to stop the sore lips, mouth corners or tongue issues much.

If you’re taking PPI’s such as Omeprazole that could also affect absorption of B12.

As said above it could also be a symptom of many problems, please push your GP to investigate further with a full bloods, I’m sure there is nothing sinister, but you shouldn’t have to live with it, it’s very sore and there could be a quick solution

Best of luck with it 💐

They are calling me today in a couple of hours so I just need to prepare.

Didn’t wake up with a headache today. Bowel issues I have just learned to live with. Clearly I am constipated as I only ‘go’ once a week, then often this is all in one go and can last for hours. I’ve tried taking laxatives before but they just cause me painful loose stools. It got so bad a few months ago I had a herniated pile.

The only medication I take is for asthma, I don’t even take the tranexamic acid for periods anymore as I don’t like the effect it has on the blood very much.

I restarted PPI about a week ago as my reflux got bad again, and I had a full box of lanzoprazole just in case (as it got better before)

I don’t think it’s thrush as I don’t have white or yellow patches in my mouth.

I’m not sure if I am diabetic or if I am allergic to anything (toothpaste?).

I can’t eat anything even remotely salty or spicy as it makes it a lot worse

It’s like the sides of my tongue are ridged and ulcerated and then the top is red and bumpy. The mouth corners seem to be kind of controlled with using a ton of Vaseline, they aren’t getting worse but it won’t heal up fully.

I did see there maybe could be another fungal treatment I could try maybe they will try that

I get a sore tongue from silent reflux (GERD). The acid comes up into my mouth when I'm asleep and makes my tongue sore and the inside corners of my mouth inflamed.

I also learned recently that the GERD was causing my asthma (acid getting into my windpipe.) Many people with asthma also have GERD.

I had an endoscopy earlier this year and didn’t get diagnosed with anything! Then I had a few months of no reflux and now it’s back again

Good luck with the call. There is clearly something wrong or you wouldn't have a sore tongue or any of the other symptoms.
I would have thought full bloods would be the first thing they would do. I totally empathise with the bowel problems.

Ok, so full bloods to be done including fasting. Unfortunately I have to wait a little while as all booked but I’ve had a sore mouth since March anyway. And she’s giving me some gel to put on my tongue

I didn’t say much apart from I have a sore tongue and mouth that won’t get better, no other signs of thrush in there and no idea what is causing it.

You could try some solvable paracetamol before eating. I find smothering my lips in Carmex lip balm all the time, especially before eating really helps

This might sound a bit bonkers, but it may be your toothpaste.

Certain toothpastes do exactly the same to my mouth.

I now use oral b mouthwash paste or sensodyne. No issues. Have no clue why either.

Worth a try to rule it out.

B12 is not routinely tested when they say “full bloods” make sure you specifically ask for it ahead and get a gp to add it into the form - it’s a bigger to get diagnosed.
My dad, gran & Aunt all have pernicious anaemia, I had all the symptoms and was really unwell for ages until someone took be seriously and listened to what I was saying about family history. It’s known as an “old persons” illness but I was in my 20’s so couldn’t possibly have it

No she did add all the B vitamins to the form she told me she would.

I don’t know if this is weird and I didn’t think of it before and add it on but I have a craving for minty things. I try to resist them because they sting my tongue a lot but I just really want to lick and suck mints and I love the Taste of the toothpaste . It’s not a new toothpaste though since this began I’ve used it for ages. I use Colgate but I might switch to an Oral B and see if that helps.

I’ve stopped myself buying mints or gum for the past month or so but I feel the urge more than maybe is normal. I only realised today when I went to the shop and walked past gum and stopped myself buying it because it hurts my tongue but all I wanted was the minty taste. I googled it when I got home and maybe there is some link to anaemia.

About 2 months ago (after this had already begun with the sore lips) I was working from home and during the day I ate all the hard mint coating off a whole packet of Extra gum. Just wanted the crunchy mint bit and spat out the gum. This made my tongue really bad obviously so I tried to stop doing it also this just felt extremely weird like a bizarre itch

As an update I had a blood test this morning and by 4pm the lab phoned my GP to say I had a HB of 78. The other results are not back yet so she’s not sure what they are going to have to treat or do but I have started oral iron today

Got asked a lot of questions about bowel problems and has really worried me. She thinks it’s my periods though to be honest

They gave me some fungal cream for my mouth and I used it for 2 days it got better. My tongue is less sore but still serrated round the edges

Any more results yet Menora? Hope you’re feeling better soon

Thank you. Ferritin of 2 but B12 is ok.
I’m just on the floor with this now and how has it got this bad

Have you had any investigations for IBD (Crohns or Ulcerative Colitis)? A HB level of 78 is very low & indicates bleeding somewhere. I have Crohns & my HB was 75 & my doctor insisted on a transfusion as iron tablets cause issues with my bowels. Please push for further tests, don’t let your GP fob you off with a diagnosis of IBS - that should only be diagnosed after every other possibility has been ruled out. I don’t mean to scare you but I do think you need to be referred for further tests.