Swollen sore tongue

[JBCADR]

I was just diagnosed on Thursday with b12 deficiency. I had a my first shot on Saturday and I’ve been supplementing in between. The supplements are doing nothing at all. Friday I noticed my tongue swelling but it went down a little after the shot on Saturday. Tonight it’s swelling up again and has sores. Is that normal? I’m freaking out that I have some scary cancer after googling. Please help! I’m also nervous to sleep. I haven’t slept in days because of all the symptoms. Also, did you all have muscle pain and back pain with it?

[DRunnerchick]

Sores on your tongue 👅 are a typical symptom of B12 deficiency. Have you been diagnosed/tested for pernicious anemia? Please don’t panic. You need sleep. I’ll help if I can.

DRUNNERCHICK

[JBCADR in reply to DRunnerchick]

She is still investigating why I’m deficient. I have to go to my GI doctor this week too. I am on PPI inhibitors so that’s probably a big part of why I can’t absorb.

[JBCADR in reply to DRunnerchick]

I’ve been struggling with numbness, shakiness and body aches. My hair is falling out. I’ve had shortness of breath and dizziness. I lay in bed at night and my legs or arms or body will twitch just as I am just about to fall asleep and it startles me awake. I’m just wanting to feel normal again!

[Cajswansea in reply to JBCADR]

This was me last night. Could not sleep even for one minute. I would drop off then shake myself awake almost immediately. It’s scary and lonely during the nights. I have similar symptoms to you with tingling, shakiness, twitches and fatigue. I haven’t been diagnosed yet, waiting on blood tests.

Hang in there, better days will come for both of us I am sure

[DRunnerchick]

All of those things can be symptoms of deficiency. It is good that your doctor is actively looking for the reason why you would be deficient. Be patient. It sounds like they are working on a thorough plan. Get some sleep so you are at your best for your appointment.

[JBCADR in reply to DRunnerchick]

Thank you! I will try. It’s been hard fall asleep and even harder to stay asleep. Praying my doctor will prescribe the shots! She only has me on supplements now. I went and paid out of pocket for one at a local spa yesterday. 😅

[Themabinogion in reply to JBCADR]

Hi JB. Before blood tests and a pernicious anaemia diagnosis, I had complained of a swollen tongue and other symptoms for a few years but the doctors didn’t know what it was. Because I went without treatments for a number of years, it is permanently swollen but does go down a little after b12 injections. You have to get treatment for it or you could end up with other irritable things going on with your body that keep nagging at you every days. It is called ‘beef tongue’ and is one of the symptoms of pernicious anaemia. Don’t lose any sleep over it though, it’s just an irritant So get it checked out by your GP. Keep safe

[DRunnerchick]

Right, if they can prove you don’t have intrinsic factor (I.e. you aren’t converting it and need injections) then you will have the diagnosis of PA. Sometimes crohns patient have issues because of previous resections etc. I’m not a doctor 👩‍⚕️ so I can only generalize, and PPIs have an affect as well. Some people do better with sublingual tablets but even they won’t work if there’s another problem. It sounds as if your team is working to get to the bottom of it and get you into a healthier state. Hang in there! 💕🍀💐😘✨

D🏃🏽‍♀️

[Coxeymcqueen]

Hello,

I get tongue sores - they were a sign that I needed a jab but now that I’m on weekly injections I very rarely get them. They’re unpleasant but will get better with treatment.

You can get a gel that helps - things it’s called Iglu.

Good luck - I self inject and if that is a route you want to go down there are a lot of people on this forum that can help you.

[Sunshine1932]

If it helps you at all before I found out I was B12 deficient my tongue was always swollen and yes it freaked me out also.

As soon as I started with injections it got better but not over night.

Try your best to relax and stay away from google and just let your intuition guide you.

Eat a good balanced diet and keep hydrated

Best of luck

[Freezeframe]

A sore tongue was my first and only symptom. I tried to attach a picture of my tongue to this post but for some reason wasn’t able to do so. I wanted to show you that my tongue was way worse than yours. It took about 10 Months for my tongue to settle down. Hang in there it will feel better

[Freezeframe in reply to Freezeframe]

Taking out dairy and gluten helped a lot !!!!

[thinkin]

There are knock on effects from B12 deficiency. Thiamine gets depleted which is the cause of the neurological symptoms. Taking B vitamins in their bioactive forms B6 as P5P, thiamine as allithiamine (or thiamine with fresh, raw garlic mixed food), you can take methylate folic acid 5-MTHF, make sure you have enough, biotin may help with your hair loss. Perhaps start one at a time, start low and build up so you can tell the difference between what helps and what doesn't.

Also sulfites added to food and not put on labels also depletes B12, P5P and thiamine. Sulfite intolerance often causes GI symptoms. A low sulfite diet is hard to follow, but trying it for a week will soon help you see where the problem lies. There are many sites out there with a sulfite free-ish list of foods to avoid - they cannot be completely avoided. This is more likely if you have asthma or allergies as well, but affects 1% of the general population.

Things can take a while to settle back down again.

Take care xx

[JBCADR]

Yes! I took a benedryl that night I took this picture. It scared me to death!

[Freezeframe]

I still have difficulty swallowing and my speech has been affected.

[JBCADR]

I’ve had three shots and I can tell my tongue is less swollen now. But it starts swelling about 24 hours after my last shot. I’m in the Us

[Themabinogion]

No it didn’t restrict my breathing but when I sneezed I would bite deeply into my tongue. I couldn’t sleep properly because I could feel it between my back teeth. Before the doctor found that P.A. was the cause, I used to fall asleep wherever I was, a deep horrible sleep like death. I had the fog and used to tell people that I had a cloud over the left side of my head. I was teaching at that time and I would forget what I was explaining or doing and the kids would start laughing. Since having injections, I feel a million times better but still start to feel ill again after a week or two. Once you begin the treatment you need you will start to feel better. Keep safe

[JBCADR in reply to Themabinogion]

Thank you! I’m a teacher too and I was noticing that I’d say weird things and forget what I was doing this year. I’d cLl kids the wrong names. It all makes sense now! My brain was in a fog! I hope that it comes back because I feel like I’ve been like that for a while!

[Sunshine1932]

I dont think it was hard to breath but it was big enough to make me panic and in turn I would feel like I couldn't breath. I was constantly biting my tongue and it just felt way too big for my mouth. Very disturbing indeed.