Enlarged sore tongue

[MissFG]

Any advice for an enlarged sore tongue. I just wondered if there’s any remedies anyone can suggest that could help? Thanks 👅

[helvella Administrator Thyroid UK]

Other than things like mouth ulcer treatments (many of which contain some sort of local anaesthetic) to provide temporary relief, the only answer I know of is adequate thyroid hormone treatment.

[Gambit62]

swollen sore tongue is also a symptom of B12 deficiency.

Have you had your B12 levels tested.

[Singoutloud]

Following on from gambits comment about testing B12. My tongue starts swelling again and getting sore a couple of weeks before my b12 injection is due.

[MissFG in reply to Singoutloud]

Thanks I’m having a b12 injection next week

[SlowDragon Administrator in reply to MissFG]

Do you take sublingual B12 daily between injections?

Which B complex are you taking?

[MissFG in reply to SlowDragon]

Yes I have been SlowDragon until recently when I ran out. I’ve not purchased anymore as I’ve been planning to get the injection just not had chance to go to the clinic. So my own fault I just didn’t expect it to drop so quickly in my system and affect me as my energy levels haven’t been too bad - usually a sign I’m low in B12.

[SlowDragon Administrator in reply to MissFG]

Just shows, that supplements help!

Do you have PA, or is low B12 due to thyroid?

What are your thyroid levels currently like?

[MissFG in reply to SlowDragon]

Low folate potassium and B12 when not supplementing. I’ve always assumed it was down to hashimotos.

I’m optimal on T3 only. I had room for a slight increase with last bloods but made me feel awful so took dose back down and feel ok again.

Supplementing makes a huge difference to my overall health and symptoms. It’s all about managing it all for me - T3, diet and supplements.

[SlowDragon Administrator in reply to MissFG]

Presumably you are strictly gluten free

Have you tried adding a bit of Levothyroxine back in?

I found B12 was particularly sensitive to low T4. But we are all different

[MissFG in reply to SlowDragon]

Yes strict GF.

My GP won’t give me Levothyroxine unless I come off self medicating T3 and I refuse to do that as I’ll be bed ridden again. I’ll just have to make sure I supplement least I know now it’s a sign I’m deficient

[SlowDragon Administrator in reply to MissFG]

It's apparently very easy to get Levothyroxine OTC in many countries

[MissFG in reply to SlowDragon]

I didn’t feel it benefited me when I was on it. As I increased my T3 dose I reduced Levothyroxine and then my Endo suggested as I thought to remove it completely.

I’d rather take b12 as I’d still need to supplement anyway, than reintroduce Levothyroxine. The reason I suggested getting it again on prescription was just so my GP would have to monitor / look after my thyroid health. He said his insurance wouldn’t allow him to give me levothyroxine whilst I self medicated. So I’m managing myself now.

[Angel_of_the_North in reply to MissFG]

So why not just pretend to agree with him and get the levo?

[MissFG in reply to Angel_of_the_North]

I did initially think this but it would be obvious by my blood test results - it was discussed in an earlier post of mine.

[Angel_of_the_North in reply to MissFG]

Only if they test free T3 and not necessarily even then.

[TaraJR]

Isn't it also a sign of being hypo, particularly if the tongue has scalloped edges? Are you on thyroid medication? And if so, are your levels good?

[MissFG in reply to TaraJR]

Yes I’m on t3 only and optimal

[sianbarn in reply to MissFG]

Just wondering how you found out about your potassium levels, which lab do you use? Thanks😃

[MissFG in reply to sianbarn]

My GP ran adrenal tests which includes potassium. Ask your GP they should run a test if you’ve concerns

[SilverAvocado]

Mine cleared up (mostly) as my dose got better on NDT. The only thing I can think of that might soothe it is slippery elm pastilles. I use these for acid reflux, dissolved in the mouth, but they actually claim to be for sore mouth and throat. As they're so good for the reflux I expect they'd be good for the mouth, too.

I get the pastilles from iHerb. But in the UK I more often see it as a powder in health food shops, intended to make up into a milky drink.

[MissFG in reply to SilverAvocado]

Thanks I’m going to take some B12 until my injection next week as I think that’s the cause. But I’ll keep an eye out for those pastilles

[rosserk]

I have Sjögren’s syndrome so I’ve always blamed my sore tongue on that. It never occurred to me it could be caused by hashimoto’s and was a hypo symptom.

My B12 was 190 on my last test, the top of the range is 160. I’m not supplementing so I’m not sure low B12 is contributing to the problems with my sore tongue. Have you been tested for Sjögren’s syndrome, how can you be sure your sore tongue is related to the thyroid issue and not another autoimmune disease?

Do you know if scalloped tongue is still present when optimally medicated? If that’s the case and the tongue scalloping rectifys but is still sore then in my case it’s more likely the soreness is related to Sjögren’s. 💐💐

[SilverAvocado in reply to rosserk]

I believe it's more the lack of thyroid hormone that causes the scalloped tongue, rather than the auto-immune side of Hashimotos. I've had it and I've had a thyroidectomy but not Hashimotos.

Although if B12 deficiency can cause it as well, I guess there can be a lot of causes.

[rosserk in reply to SilverAvocado]

It would be so much simpler if these symptoms didn’t have several causes 😭😭

[MissFG in reply to rosserk]

I’ve been tested for Sjögrens and don’t have it.

I’ve been off b12 supplements for a few weeks so now know this is the cause for me. I’ve starting taking B12 straight away last night and it’s already improving.

[rosserk in reply to MissFG]

That’s good I hope it continues to improve and I’m glad you’ve found the answer to your sore tongue.

Your post is making me question whether my sore tongue is caused by my thyroid and not Sjögren’s, or perhaps a combination of both? In my case though my b12 was over the range so I’m not lacking b12. I don’t know what the consequences are of too much b12 otherwise I’d try it and see if my sore tongue improves. At the moment it’s the worst symptom I have it’s so sore it wakes me at least two/ three times a night and I have to apply biotene constantly. I need to research b12 thanks for posting it’s given me something to explore 💐💐

[Singoutloud in reply to MissFG]

To be honest it took me just over 2 years to get to a point where I didn't need to supplement B12 daily. I get injections every 8 weeks, was self injecting twice a week and using 4 x 5000mcg sublinguals daily. Now I only supplement once or twice a week. Most symptoms return after 6 weeks though.

[SlowDragon Administrator in reply to rosserk]

Did you mean bottom of range be 160 (not top of range)

Usually B12 range is approx 180-680

But obviously ranges varying from lab to lab

[helvella Administrator Thyroid UK in reply to SlowDragon]

The ranges for Active B12 typically top out around 160.

[SlowDragon Administrator in reply to helvella]

Sorry didn't consider it was Active B12

[rosserk in reply to SlowDragon]

No the range is 25.10 - 165.00 mine was 190. The test was done by medichecks

[helvella Administrator Thyroid UK in reply to rosserk]

That is an Active B12 test rather than serum B12.

[rosserk in reply to helvella]

Ok I’m totally confused now lol. I thought since it was the one medichecks does it was the correct one for monitoring my thyroid. If it was low I would need to supplement.

[helvella Administrator Thyroid UK in reply to rosserk]

The Active B12 was intended to be a superior B12 test to the "traditional" serum B12 test. There is some evidence that it might be a better test but possibly not quite as wonderful as was initially thought/claimed.

Because the Active B12 test is not often available on the NHS, relatively few NHS GPs have experience of it.

190 is high for an Active B12 test result.