Thyroid UK
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Could this strange swelling below bottom lip be a thyroid symptom?

Could this strange swelling below bottom lip be a thyroid symptom?

Hi everyone,

I did post about this symptom among other things a couple of months ago and Clutter kindly replied and was very helpful. However she had no experience of this particular symptom being down to hypothyroidism. I was just wondering if anyone else has any thoughts about this. I did find something similar online and it said it could be associated with thyroid dysfunction among other things. There are slight swellings beneath each nostril too. Had anyone else has anything like this?

Any help or advice would be much appreciated.

With thanks in advance

Best wishes to all

Caroline

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Oh how interesting, I have this too. I first noticed it about 4 years ago and haven't been able to find any reason for it searching online other than it just being a muscular swelling. I do hope someone else here knows what and why!

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Thank you so much, Framboise, for your quick response. Do you have a thyroid issue too? Maybe it is something to do with that. I was hoping that the optimal dose of Levo would make it go away but not so far. Still, I was only started on medication last September and my blood tests are not good yet. I've only had this symptom since last summer. Has yours changed at all over the four years? Mine seemed to appear overnight last August and has never changed at all. As you say, it would be great if someone could tell us what it is and hopefully how to get rid of it.

Bantam12 has put forward a possibility. I have heard of angioedema in connection with thyroid dysfunction but have never been sure how this manifests itself. Time for a bit more research i think! Thanks again for your reply. If I find out anything useful, I will post again!

All the best

Caroline

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Hi Caroline, I've been treated for hypothyroidism for 16 years but only noticed this swelling in the last few years, and my results and dose of NDT have been stable for most of that time. I did reduce for a while when one endo decided I didn't have a thyroid problem, but that didn't coincide with noticing this and since then I've increased my dose anyway. I'd thought mine was muscular rather than fluid but I'm seeing my GP about two other things next Friday so will ask about this. I hadn't bothered before because I just thought it was me and nothing to do with anything else.

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Actually I've just looked up images of angeoedema of the area under the bottom lip and all it shows is angeoedema of the bottom lip. Mine is the area underneath not the lip itself, as in your photo, so this gets more interesting...

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I have seen this swelling referred to as a "ledge" below the lip. Like you, I've seen photos of very swollen bottom lips being attributed to thyroid problems but not the kind of swelling you and I have. Oh well, I'll carry on looking and will let you know if I find out anything useful.

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Thanks Caroline, I hadn't realised it was called a ledge until I re-read the link I put below. I think the only other place I read about it was a plastic surgery website where they discussed removing them, but that's a bit too drastic for me!

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Me too!!

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I've found one reference to facial swelling and hypo which could be relevant to you and me.

bodyecology.com/articles/is...

See the section entitled "Edema".

This is not the one I saw with photos of "ledges" but seems to cover the same symptom.

The fact you've had hypo for so long and been stable for ages does sort of throw a spanner in the works tho. I would have expected yours to have gone or at least improved if low thyroid hormones had been the cause.I

Oh well i shall continue to look for the answer.

Best wishes

Caroline

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Thanks for the link, I don't think it's that in my case mainly because I was diagnosed by Dr Skinner who was very thorough in checking skin etc and if I'd had it then he'd definitely have noticed and mentioned it. He did say my tongue was swollen at the time and he used to examine the backs of my hands with a magnifying glass. All I can think is that I took low dose hydrocortisone for some years for my adrenals, which caused me to gain a lot of weight whereas I'd always been very thin before, and when I finally stopped the hc I lost all the weight plus more. My face in particular had filled out, but not puffy, just not as thin as before, and is now thin, so I wonder if it's left over from the hc side effects. I'd assumed it was muscular but perhaps not!

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Caroline888,

If your blood tests are not good yet you are not optimally dosed. What are your recent thyroid results and ranges?

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My last result was for TSH only as, as you know, that's all most labs will do once you are in range.

The result on 22/01/18:

TSH 3.0 mu/L [O.5 - 4.4] when initially tested this range was 0.3 - 5.5 but was reduced for the last test. I am now on 50 mcg Levo.

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Caroline888,

You were undermedicated to have TSH 3.0. If dose was increased to 50mcg after that test you should have a followup throid test 6-8 weeks later to check the increase was sufficient. Arrange the blood draw early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking.

You will be adequately dosed when TSH is 0.5 - 1.0. If you are still symptomatic then it would be a good idea to order your own thyroid tests to check TSH, FT4 and FT3.

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Thanks Clutter. My dose was increased by 12.5 mcg after that result and that was the best i could get from him. I'm just hoping it will be enough because I don't fancy my chances of getting another increase unless I see another gp. And maybe not even then!

On a positive note, some of my symptoms have already improved a little and am not due for another test until mid March so perhaps 50 mcg might be enough. Well, here's hoping anyway.

I do intend to do private testing when I reach stalemate with the doctor, just so that I can post a proper set of results here and get good informed advice.

Thanks again for your support.

Caroline

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This is a link I had found, my lower lip area is just like the one shown here as Betsy's. The cause sounds slightly mad to me ;) however I do have digestive problems. Also looking back my under lip swelling became apparent after I lost a lot of weight which had been gained originally due to taking steroids: rebeccawood.com/health/swol...

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I think I've seen that! Didn't they suggest it was diverticulitis in that instance? I don't have that. My mother had it so I know the symptoms. All I saw was that it could be indicative of an underlying disease. The only diseases i saw specified were diverticulitis (and that is not something fatal as suggested on that site! - i think they are trying to scare us into buying something!) and thyroid disease. Leaky gut is also mentioned which I think is sometimes referred to with regard to thyroid problems.

When I find the link connecting it to hypothyroidism I'll post it.

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That's right they did say it was diverticulitis. Sounds too weird to me and I can't think the connection between the two would be. I'll be very interested to see the link with being hypo and also to se if my GP has seen it before.

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My doctor had no idea, first prescribing an antihistamine and then a hydrocortisone cream, neither of which did any good at all. Dentist had no idea either. Another gp who I’m seeing for my thyroid problem doesn’t even admit there’s anything amiss! He thinks it’s normal despite my telling him it’s not normal for me! Sometimes I despair!

Hope you’re well otherwise anyway.

Best wishes

Caroline

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Try putting "what does facial myxedema look like?" Into Google. Some interesting photos there!

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Some of those photos are scary, poor people!

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Yes I agree but, as I understand it, these are 'before' and 'after' pictures of people suffering from undiagnosed hypothyroidism and then treated successfully. The term 'myxedema' in this case refers to a 'dermatological manifestation' of undiagnosed hypothyroidism. At least that's what I understand from the text. At least two of these people have pronounced 'ledges' which improved with treatment.

I think it's interesting and I would be inclined to think it relevant to us except for the fact that you have been cared for properly by Dr. Skinner and your 'ledge' has persisted.

All this aside, I am glad you are stable now! I too am starting to feel the benefits of levothyroxine. I still have a way to go but there's now light at the end of the tunnel.

Thank you so much for sharing your views on this.

Best wishes

Caroline

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Angeoedema seems a fairly common problem with lips.

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Thank you so much, bantam12, for taking the time to reply. I will look further into angeoedema. I do know that the face can be affected by thyroid issues but thought it was a general puffiness. Mine is more localized to lip and nose! Thank you again for your suggestion.

Best wishes

Caroline

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Reading previous posts

Possibly due to fact you are (or have been) under medicated

Essential to get antibodies tested

Show this to GP perhaps if you need further increase

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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Thank you so much, SlowDragon, for your reply and for the link which looks really interesting. I will be looking at that in detail later and hoping it will convince my gp that a TSH of 3 is not ideal when on Levothyroxine!

As with most of the others posting on this site, I seem to have to fight my doctor all the way but at least he has agreed at last to testing for antibodies!!

Thanks again for your help and support, I am very grateful.

Best wishes

Caroline

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Yes took me 22 years to get correct treatment!

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I hope you are well now.

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Finally yes, since going Gluten free in 2016.

Typically lots of vitamin deficiencies as result

Confirmed as heterozygous DIO2 gene variation

Started T3 this spring - more on my profile

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Glad to hear that. I fully intend to go gluten free if my test shows antibodies. I already have one autoimmune disease so gluten free might help that too!

Hope you continue to do well.

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