What can a do to help with a very sore tongue?

[Outinthesun]

I was diagnosed with anaemia a few years ago and have B12 injections every 10 weeks. My folate levels were also abnormal but I don’t take anything for this. The last couple of months my tongue has started to get so sore down one side. I guess it’s related to PA and wanted to see if you had any suggestions before i see my GP. Thank you

[ClareP5]

You should address all vitamin deficiencies including folate. Look up glossitis- not sure of spelling- some people get v sore tongue with B12 deficiency. If it’s that, you need more B12.

[Sleepybunny]

Hi,

Do you have any neurological symptoms?

If yes then BNF (British National Formulary) suggests B12 injections every 2 months.

BNF Hydroxycobalamin

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

See section for those with "neurological involvement" if neuro symptoms present.

I'm wondering if you are getting enough B12.

"My folate levels were also abnormal but I don’t take anything for this"

Do you mind me asking what the actual folate result was with reference range?

Folate deficiency can lead to a variety of symptoms including glossitis (sore, inflamed tongue).

What did your GP say about the abnormal folate result at the time?

What are your iron levels like?

[Outinthesun in reply to Sleepybunny]

Just looked and serum folate level 3.4ug/L{3.0 - 20.0} so low not abnormal. My mistake Thank you so much for all of this information, i shall go through it all asap

[Sleepybunny in reply to Outinthesun]

Your folate result is not far above the lower end of the range.

We're all different and it's possible to show signs of deficiency with a normal range result but sadly some GPs don't seem aware of this.

BSH Cobalamin and Folate Guidelines

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

Cobalamin is the scientific name for B12.

Do you eat a diet that has plenty of folate rich foods eg leafy green veg, beans and other pulses, fresh orange juice, breakfast cereals that are fortified with folate etc?

I suggest you ask your GP if you might benefit from taking a folate supplement.

Your local pharmacist might also be worth talking to.

I suggest you look at the symptoms lists I'll try to post below and see if you have symptoms consistent with B12 and folate deficiency.

[Sleepybunny in reply to Sleepybunny]

Link below mentions symptoms of B12 Deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

[Sleepybunny in reply to Sleepybunny]

Usually I'd post a lot more but there's a problems with links.

Suggest you have a thorough read of my detailed replies in other threads and also PAS website and B12 Deficiency Info website.

[Sleepybunny]

If you have a diagnosis of PA (Pernicious Anaemia) then worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring

[Sleepybunny]

Apologies for so many replies. For some reason I can only put one working link in each reply.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

[Sleepybunny]

Link below is to a thread where I left some detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles

healthunlocked.com/pasoc/po...

[Sleepybunny]

Another thread with some of my detailed replies

healthunlocked.com/pasoc/po...

[Sleepybunny]

and another..

healthunlocked.com/pasoc/po...

[Moggy1234]

Hi Outinthesun, I too have suffered with soreness down one side of my tongue for many years along with mouth ulcers. I have found recently that more frequent B12 injections has got rid of the soreness for a while. I am now trying out cyanocobalamin instead of hydroxocobalamin and the soreness has not returned with B12 injections at 2 weekly intervals. Hope this helps.

[Outinthesun in reply to Moggy1234]

Something to think about, many thanks 😊

[Moggy1234 in reply to Outinthesun]

You are welcome. I am not sure the change from hydrox to cyan is the reason why the soreness doesn't return so often more a case of trying out B12 injs at 2 weekly intervals rather than 3 or 4 weekly as I was doing with hydrox.

[Teebee66]

Hi, I've had a similar issue and my Doctor has prescribed 5mg of Folic acid for 1 month. Keeping your folic acid levels up is definitely related to your B12 level. They work in tandem to ensure your red cells are the correct size and healthy. Without this you can become very ill.

[Outinthesun in reply to Teebee66]

Thank you i shall speak to my doctor

[Kazania]

So sorry to hear about your tongue. I too have a very sore tongue and it sometimes is also painful to eat. My dentist says it’s geographic tongue, there is no cure for it apparently. I have not mentioned it to the GP - very difficult to get an appointment these days. I have had more help from people on this forum - I thank them all. Follow the links by others here, I’m going to check up on the folate question myself. Take care, I hope you find a solution.

[Outinthesun in reply to Kazania]

Thank you and you too

[Twaddletop in reply to Kazania]

I’m constantly being told I have geographic tongue but… I only ever had this problem in pregnancy. I’m now sixty six so that’s not a likely cause. I found using Corsydol toothpaste and mouthwash helps. If it still not clearing, ask your GP for Betamethazone tablets to dissolve in water. Those have done the trick for me when my mouth was full of blisters due to either gold injections or Methatrexate. Good luck x

[Kazania in reply to Twaddletop]

Thank you so much for your advice. 😃

[AER91]

I suffer from a tingly tongue which can at times feel very sore. I was referred through the NHS and finally diagnosed by a specialist around 9 years ago as “Burning Mouth Syndrome” for which I was prescribed amitriptyline. Amitriptyline did work but I was fairly certain it was related to my B12 deficiency so GP upped the frequency of my injections from 3 months to 2 months. It made a slight difference (one which I could live with) but I do still suffer with the tingles. Amitriptyline was great but I personally didn’t want to remain on them for a long duration.

[Outinthesun in reply to AER91]

I’m thinking i may need to go from 10 weeks to 8 weeks, thankyou

[helvella]

Some forms of sore tongue can occur due to low thyroid hormone levels - hypothyroidism. That causes the tongue to swell, which is then too large for the mouth. Terms like piecrust or scalloped tongue are used.

It is all very well guessing, don't we all do that?, but you really need proper testing to be sure.

You may wish to have a look at the Thyroid UK forum:

healthunlocked.com/thyroiduk

[Outinthesun in reply to helvella]

My tongue isn’t swollen just sore, lots for me to look at though

[Ghound]

Hi Outinthesun, Very good replies from everyone, as you can see there are many possible causes of your sore tongue. My tongue gets painful regularly due to B12 and iron deficiency. Your dentist would be an excellent professional to consult. Everyone associates dentists with teeth and forget that they are there to diagnose all conditions of the mouth, including all the soft tissues and jaws. They can spot signs of anaemia and B12 deficiency but can also rule out the conditions mentioned , such as geographic tongue, burning mouth syndrome, lichen planus etc . Hope you find an answer soon , best wishes !

[Outinthesun in reply to Ghound]

Great idea, thank you very much

[Cherylclaire Forum Support]

I am currently seeing (yes: face-to-face !) an oral medicine consultant who having worked miracles on my angular cheilitis (sore, splitting and bleeding corners of mouth) is now working on my daily burning tongue.

This he believes is due to primary Burning Mouth Syndrome (without cause) - although having looked it up, I found that secondary BMS (caused primarily by B12/ferritin/folate deficiency, autoimmune diseases, salivary gland disorders) fits perfectly for me.

He is unlikely to agree with me as my B12 is now "through the roof" due to frequent self-administered B12 injections. Also ferritin. folate and saliva glands at the best levels they have been since my problems began six years ago. A definite diagnosis for primary BMS would rely on ruling out all of the above secondary causes.

At the moment he is investigating why I can't breathe through my nose properly and believes mouth-breathing in the night may have caused dehydration- and so tongue problems. I can't honestly say that overnight dehydration fits my experience but trust him to do the necessary investigations. He has requested a nasendoscopy first.

I am even willing to accept that the daily burning tongue might end up being something I'm stuck with now, but an answer would be good. I will let you know the results.

Meanwhile have a search of Burning Mouth Syndrome or oral dysaesthesia. Responders are right about dentists: the most useful information I found was a slide presentation from a lecturer, aimed at dental students at the University of Mosul.

To get further, you will need to discuss this with your GP - there seem to be a few possibilities, folate being one. Please don't just leave it, even though it may not be the worst of your problems.

[Outinthesun in reply to Cherylclaire]

Thank you and good luck

[Sleepybunny]

Link to a HU thread I started a while ago about signs of B12 deficiency in the mouth (tongue symptoms are mentioned)

healthunlocked.com/pasoc/po...