Tingly tongue?: I was wondering if... - Pernicious Anaemi...

Pernicious Anaemia Society
19,210 members13,296 posts

Tingly tongue?

I was wondering if anyone has experienced a tingly, numb-feeling tongue as part of low B12 symptoms? I have been having tingly mouth and tongue, especially when eating. Sometimes it is almost painful. Trying to figure out if this is part of low B12 or some kind of weird allergy since I do have allergy problems as well. Thanks.

34 Replies
oldestnewest

If I eat hazelnuts I have what I would describe as a peppery tongue and throat (so I’ve stopped eating them now). That feeling happens almost immediately so it’s clear to me that it’s the hazelnuts causing it.

I haven’t experienced a tingly mouth or tongue.

Reply

Thank you for replying! It could very well be related to my allergies. Maybe since it's a high allergy season now where I live they are getting a bit worse.

Reply

If it’s an oral allergy,as mine is, it’s important you identify it and avoid the allergen!

Reply

Thanks - I have had allergy testing for foods as well as environmental allergens. Mine are mostly environmental - dust, mold, etc. I did have a slight reaction to a couple of foods, but they can only test for so many things at a time.

Reply

My initial diagnosis of the B12D came from red spots, large areas, missing the coating. Geographic tongue.

Now, whenever I get low on B12, or totally stressed, my tongue is the first indication with red patches forming fairly quickly. Getting my injection and regime of supplements sorts the tongue out in a few days.

Sometimes it is preceded by a metallic taste and very bad breath. So I figure that bacteria in the mouth get out of balance when I’m low on B12.

I’ve also had issues with different types of fillings creating an electrolyzing experiment in my mouth. Over the past several years, I’ve lost two teeth that had root canal & crowns.

Any recent changes to the water you regularly drink?

Are you taking folic acid to supplement the B12 ?

1 like
Reply

No, I’m not taking folic acid. Do you think this is a sign I’m deficient in that? I get red patches on my tongue too sometimes.

Reply

If you are on B12 injections, you should be taking folic acid and a daily multivitamin to support B12 in doing it’s job.

Reply

Hi, pvanderaa, Is it not OK to just make sure eating lots of folate - Veg and Fruit while supplementing B12 in one form or another ?

Reply

My understanding is that folate can mask a B12 deficiency. I’m not medically trained. This masking leads to later diagnosis of the deficiency which can lead to neurological damage.

The B12 has to get sorted first to the level and frequency to eliminate the deficiency and stop the nerve damage.

Then folic acid can be adjusted to a tolerable level (not more than 5 mg per day) to support the B12.

A daily multivitamin replaces the minerals, metals and other vitamins used up once metabolism gets going again.

2 likes
Reply

Sounds like the reaction I get if I try eating edamame beans by sucking them from the pod. Like I imagine eating stinging nettles must be like.

Reply

Yes, it’s a really odd sensation.

Reply

Hi

Yes i did and still do if my b12 drops to low.

It starts with the tip of my tongue with a burning sensation or tingling

It then goes on to a red beefy tongue that makes my mouth sore especially to eat. It also gives a very smooth appearance.

Luckily since my b12 injections were changed to two monthly from 3 and after another initial loading dose i haven't had it back. But will definitely go get another b12 injection earlier then the two monthly appointment if the tingling/burning returns.

Good luck and hope more regular b12 injections work for you too.

1 like
Reply

Hello annielou19, Stinging tongue like being in a bag of nettles is indicator I need my b12 injection. I have been getting weekly injections about 4 years now. At first 2 injections weekly. I tried recently to go 10 or 12 days and my tongue started up. Very distressing and of course worry that it would be permenant. After my injection it went back to normal. I dread to think what I would be like in a very short space of time without them. I hope you feel better soon. Kind regards potter5

1 like
Reply

My tongue is tingly and all around my lips but the dr says it’s not B12 as my last blood test in Feb was fine. But they stopped my B12 then so haven’t been on it for 4 months now so I think it’s back. Also had an iron infusion a month ago so think that’s disguising my blood results now. Even my teeth aches but dentist can’t find anything wrong

1 like
Reply

Yes, one of my symptoms before I was diagnosed was painful tooth! It felt like my tooth was going to fall out, totally fine after B12.

1 like
Reply

Hi Annielous19, I also experience a tingling/ burning sensation on my tongue and this seems to be my main noticeable symptom when I am needing my injection. I originally went to my GP when I noticed I had a strange looking pattern on my tongue, which I still have, and he diagnosed it as “geographic tongue”. He suggested no known cause but when I asked if it could be related to vitamin deficiency he agreed to do blood test and the rest is history!!

2 likes
Reply

My tingly numb tongue led to my pernicious anaemia with a positive intrinsic factor Antibody blood test result ten years ago and despite 12 weekly injections ever since I have never regained the sensation in my tongue. It’s coated white and tingles all the time along with the insides of my lips 😩

1 like
Reply

Yes I get tingly tongue and have it right now, my b12 is due. I also used to get it before I was first diagnosed 12yrs ago. I assume its low b12 but not sure.

2 likes
Reply

Yes annielou, I have tingling tongue, so bad that I call it burning mouth. My lips are bright red when I wake in the morning and tingle so do my gums and tongue. In 2011 I started with, I went to the GP and she said had seen other patients with but no treatment so I googled and everyone appeared to be saying B12 deficiency. I asked for a test and GP informed me over the phone my results were perfectly normal. But the burning mouth was horrendous so I took B12 anyway and it disappeared after a few weeks. I then stopped taking B12 because the GP had said my B12 was fine and that no matter what you think, their statements pervade your mindset: I don't need. I kept getting the burning mouth back, a couple of times a year and taking B12 and it would go and I then gradually started to learn more and more. I learned amongst many things that you could have a copy of any test results from your GP practice. My B12 had not been normal at all , very bottom of the range at 191 and by then the guidelines had been raised and 191 was considered abnormal low. I also learned from Dr Daniel Amen's book and interviews that B12 normal blood level ranges varied from country to country, also normal ranges are just that normal, average of the population and not optimum or healthy. Japan's normal range for instance is 500 - 1300 and the Japanese have the lowest rates of heart disease and dementia/alzheimers (brain and heart function being affected by low B12) Dr Amen being a mainstream trained psychiatrist now functional nutritional psychiatrist. He states that when it comes to B12 you always want to be on the top table. Despite this info I still didn't take B12 or B vits continually and in Jan 2017 I was hit with Burning Mouth, peripherral neuropathy, skin rash, blurred vision , ringing in ears and dizziness all that continue to this day. I now take high dose 5000mcg liposomal B12 per day and am trying to build up my serum B12 to over 2000, which is what some folks on here and the B12 charity say it needs to be around before the damage caused by deficiency can start to heal x

2 likes
Reply

Thank you - I had been taking B12 tablets every day, but hadn't kept up with it lately. This could be my symptoms starting to return.

Reply

Quite Possibly , as with me. But I think there is more to it than just B12 and methylation - our whole body is one system. However an NHS test I have taken is homocysteine blood levels. If your B12 /methylation pathway is working well then you will have a reasonably low homocysteine blood level. If B12 is getting into your cells and functioning (it can't do anything just hanging around in your blood) B12 converts homocysteine back into methionine and so consequently reduces homocysteine levels detected in your blood. It is important to know your homocysteine levels and check that they are not too high but mainly that they are low enough. Medical science is aware that a highish homocysteine is a path leading to dementia and alzheimers so to proactively work at reducing high homocysteine levels can only benefit health. One way to reduce is to take B12 and other B vitamins along with other supplements - telling and interesting . See Food for the brain website. Google food for the brain homocysteine to bring up the applicable pages. They have a homocysteine level of 6 - 7 as healthy/optimum Ignore the NHS average normal levels. When I first had my homocysteine level test it was 9.7 (if memory serves) NOT good. I managed to get my B12 level up to 1170 with supplementing 5000mcg per day and my homocysteine level fell to 8 - not great still but so much better than nearly 10. My burning mouth had not gone but was more intermittent during the day. I carried on supplementing B12 for further 6 months and so will have gone way above 1170 and then stopped to see what would happen ready for my annual blood tests in 6 months time. Because of difficulty getting test results (requested through a hospital consultant and so more awkward to get a print out or for anyone to tell you your results other than the consultant who requested !) I went 6 months no B12, then started supplementing but then stopped as couldn't get my result, so all in all it was 9 months with a little supplementation. I got my GP to request a test and B12 had fallen to nearly 500 from probably around 2000. And my homocysteine was back at 9.8 and my burning mouth was back/ still is with a vengeance. So now taking B12, 5000mcg (Amrita website, Seeking Health brand) again since my test results end March 2019. So somethings going on.

One thing to note re homocysteine test - I think best fasting /early morning. Is an NHS test, I know, I have had many. If you decide to have you need to get your GP to request on the computer. Go to your nearest hospital blood dept/phlebotamy (no appointment needed) check before hand that the hospital can test for homocysteine in their labs. We have 2 hospitals in our city - one can one can't. Your blood needs to go straight to the lab within half hour to an hour of drawing for an accurate result so can do without a trip around the city from pick up at GP surgery. Just mention to the nurse taking in the hospital, to remind her.

I have heard many Functional doctor's state that this test will be the norm in the near future to pick up on heart disease and brain function disease risk. Hope this helps x

1 like
Reply

Thank you! I have not had homocysteine test, only blood MMA, which was normal after a few months of supplements. I am actually in the US, but I think I would just need to ask my regular doctor for the homocysteine because they have blood draw onsite.

Reply

You are lucky - plenty of functional doctors (IFM Institute of Functional Medicine trained doctors, a big movement now in the US) they look for the root cause of the problem. :) x

1 like
Reply

B12 Tablets may skew any B12 testing to the a higher value to appear “normal” but not be sufficient to completely halt the B12 deficiency.

If you’ve been off tablets for a while, and symptoms are starting to return, get the B12 testing done first before you start supplements again. You may need to be on B12 injections. I’m not medically trained.

2 likes
Reply

I get sore tongue and also loss of taste which I believe are symptoms of low B12

1 like
Reply

One of my early symptoms was also loss of taste, and sense of smell.

Reply

Thank you all for your thoughts. I haven't been diagnosed with PA, but just B12 deficiency. Taking the 1,000 microgram sublingual tablets each day helped me to overcome my symptoms and anemia after a few months. But, I hadn't been keeping up with the tablets every day lately, and based on your replies it sounds like this could be a warning sign of symptoms returning. I'd better stick to the tablets!

Reply

Just to put things in perspective. I’m on weekly self injections, the max my GP will prescribe and take additional 4x 5000 mcg to fill in. Remember that B12 is water soluble and so doesn’t store in fat and you can’t overdose. You naturally get B12 only from meat, eggs and milk. As long as the recycling mechanism in your gut and hepatic loop is working, oral supplements may be sufficient. This is the situation for the vegetarian and vegan diets were the person chooses not to eat meat. They need to supplement with B12 to avoid nerve damage caused by any B12 deficiency. I’m not medically trained.

1 like
Reply

Just a few more things to add to your shopping list that can also cause B12 deficiency, stomach problems can cause absorbtion problems, also taking omeprazole on a long term basis or something similar is known to affect how the acid in your stomach works, also having a general anaesthetic can cause problems, the nitrous oxide gas affects the stomach, its only through this forum where and why I ended up with the various B12 issues, I've had numerous stomach problems, also a regular to having general anaesthetics due to a long term skin condition, and finally I'm on lifetime omeprazole, so I've run the gauntlet and ended up with all the classics of B12 issues, and recently the tingling tongue and ringing in the ears constantly, but trying to get the doctors to increase the injections is nigh on impossible, its so important to keep on top of this condition as it creeps up on you, I'm beyond the point where I have constant pins and needles and the burning is 24/7,so please persist in keeping your levels topped up, this condition is so underestimated by the NHS, so do as much as you can for yourself, good luck.

2 likes
Reply

The tip of my tongue and sometimes, the tip of my nose. Yes, imho, very connected to b12 deficiency.

1 like
Reply

My tongue, lips, side of my face tingle it drives me mad. It feel like all my teeth ache but Dentist says they look fine. I’m so dizzy too. Getting up out of bed the room swirls it’s awful. My tinnitus is noisier than usual too. I’m sure it’s B12 related but Dr won’t put me back on B12 even though Liverpool hospital requested them to put me on them in the first place. I don’t absorb B12 naturally after a major Whipples surgery. But after I’d been on them for 12 months the Doctor said my levels were now fine and took me off them. But if I couldn’t absorb B12 naturally then well why would I now. Had my last blood test February when they were ok but I had to have an iron infusion since then as results were low for iron. Dr, says they won’t do another B12 test for 6 months so that means August.

My memory is terrible. Always looking to my husband to say the words I can’t remember. I used to have a good memory. I want to buy some B12 but unsure about what strength to take. Any suggestions please

1 like
Reply

I understand what you mean about not being able to recall words - I have had that symptom at times as well. Were you on B12 injections before? I seem to be able to absorb some B12, because taking the sublingual tablets 1,000 mcg every day works for me to keep my level up. I had stopped taking my tablets as regularly recently and it seems I found out that it's best to keep at it or my symptoms will start to come back. Can you go back and have another talk with the doctor about your symptoms, or consult with another doctor?

Reply

I was on tablets

Reply

Got an appointment next week. Will ask for a course of B12 then if symptoms go we know what it is

1 like
Reply

You may also like...