Enlarged sore tongue: Any advice for an enlarged... - Thyroid UK

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Enlarged sore tongue

MissFG profile image
34 Replies

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

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MissFG profile image
MissFG
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34 Replies
helvella profile image
helvellaAdministrator

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 profile image
Gambit62

swollen sore tongue is also a symptom of B12 deficiency.

Have you had your B12 levels tested.

Singoutloud profile image
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 profile image
MissFG in reply toSingoutloud

Thanks I’m having a b12 injection next week

SlowDragon profile image
SlowDragonAdministrator in reply toMissFG

Do you take sublingual B12 daily between injections?

Which B complex are you taking?

MissFG profile image
MissFG in reply toSlowDragon

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 profile image
SlowDragonAdministrator in reply toMissFG

Just shows, that supplements help!

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

What are your thyroid levels currently like?

MissFG profile image
MissFG in reply toSlowDragon

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 profile image
SlowDragonAdministrator in reply toMissFG

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 profile image
MissFG in reply toSlowDragon

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 profile image
SlowDragonAdministrator in reply toMissFG

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

MissFG profile image
MissFG in reply toSlowDragon

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 profile image
Angel_of_the_North in reply toMissFG

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

MissFG profile image
MissFG in reply toAngel_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 profile image
Angel_of_the_North in reply toMissFG

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

TaraJR profile image
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 profile image
MissFG in reply toTaraJR

Yes I’m on t3 only and optimal

sianbarn profile image
sianbarn in reply toMissFG

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

MissFG profile image
MissFG in reply tosianbarn

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

SilverAvocado profile image
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 profile image
MissFG in reply toSilverAvocado

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 profile image
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 profile image
SilverAvocado in reply torosserk

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 profile image
rosserk in reply toSilverAvocado

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

MissFG profile image
MissFG in reply torosserk

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 profile image
rosserk in reply toMissFG

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 profile image
Singoutloud in reply toMissFG

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 profile image
SlowDragonAdministrator in reply torosserk

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 profile image
helvellaAdministrator in reply toSlowDragon

The ranges for Active B12 typically top out around 160.

SlowDragon profile image
SlowDragonAdministrator in reply tohelvella

Sorry didn't consider it was Active B12

rosserk profile image
rosserk in reply toSlowDragon

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

helvella profile image
helvellaAdministrator in reply torosserk

That is an Active B12 test rather than serum B12. :-)

rosserk profile image
rosserk in reply tohelvella

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 profile image
helvellaAdministrator in reply torosserk

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.

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