Has anyone any experience on myxodema - Thyroid UK

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Has anyone any experience on myxodema

Mannequin18 profile image
24 Replies

Hi all. If anyone has information on modems I would be very grateful.

I suspect I have it under my bottom lip, and on my nose.

I asked my GP about it 2years ago, and they said it was nothing.

Any help would be very welcome. Thank you.

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Mannequin18 profile image
Mannequin18
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24 Replies
Mannequin18 profile image
Mannequin18

That should read Myxodema, not modems.

helvella profile image
helvellaAdministrator in reply toMannequin18

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in reply toMannequin18

Lol, happens to us all! :-D

A friend was messaging how she used ginger to make a nice soft drink. She meant to say, "I mash up my ginger in a mortar and pestle", but put "I mash up my FINGER..."

Auntyp62 profile image
Auntyp62

You would get myxoedema everywhere. I had it 46 years ago and went into a coma. It is something you don’t just get a bit of and something you never forget. Have you thought you may have an allergy

Mannequin18 profile image
Mannequin18 in reply toAuntyp62

Thank you for your reply.

I read an article on the internet, and it showed pictures of raised lumps on the nose and mouth of someone who was undermedicated for hypothyroidism.

I have raised skin in those areas, and I don't want it to increase.

I don't think it is an allergy, because it does not itch.

I just wanted some info.

in reply toMannequin18

You can get various mainfestations of thyroid disease. Thyroid hormones are needed in every cell of your body so any part of you can be affected. Mixedema usually refers to some fluild retention. I have probital mixedema which is a swelling either side of my knees, it is an area that fliud sometime gathers in thyroid patients. It is also very common just below the eyes. Mixedema coma and madness are life threatening events. It is clear you have read something on the internet describing your issue as thyroid related. Would you be able to post a link? I have not heard of anything like it before but thyroid illness has so many manifestations.

Mannequin18 profile image
Mannequin18 in reply to

Hi, I will try and find the link. It was very scary.

Sus64 profile image
Sus64 in reply to

I have puffy knee swelling too. Does yours get better when your thyroid levels are optimal or what do you do about it? My chiro thought it was poor lymph drainage and tries to massage it away.

in reply toSus64

IT apparently goes away by itself 50% of the time. Best to optimise thyroid hormones. More common with hyperthyroid than hypo but can happen with both.

Sus64 profile image
Sus64 in reply to

ok, thanks

in reply to

I have huge bags under my eyes!

Mannequin18 profile image
Mannequin18

Hi, thank you for your reply. I'm hoping I haven't. It must start somewhere. I have small raised threads on my nose and under my bottom lip. They have been there for about a year. They haven't altered, and I don't want them to increase.

I came across some pics on the internet, and wondered how it started as the article said it was related to undereducated hypothyroidism.

And as this is a well informed site, I put the question out there to see other peoples experience.

Caroline888 profile image
Caroline888

Hi Mannequin18

I have a puffy swelling below my bottom lip which I have had since the summer of 2017 just prior to being diagnosed with hypothyroidism. I posted here at that time and received many replies. I also posted a photo. I think you have to click on my avatar to access all my earlier posts.

The most reassuring thing I can say is that mine is just the same now as it is in the photo I posted - it’s no worse.

I keep hoping that the correct dose of levo will eventually make it go away. However I’m fairly used to it now and don’t notice it so much. I’m pretty sure no one else does!

As in your case, one of the doctors at my surgery (who’d never seen me before) said he couldn’t see anything wrong.

Hope you are feeling well otherwise.

Best wishes

Caroline

Mannequin18 profile image
Mannequin18 in reply toCaroline888

Thank you so much for your reply.

Caroline888 profile image
Caroline888 in reply toMannequin18

If you have looked at the photo I posted a while ago, I’d be very interested to know if yours is similar. I also have two little puffy areas below my nostrils. I have encountered two other people on this forum who have similar swellings. I feel sure they are thyroid related.

Mannequin18 profile image
Mannequin18 in reply toCaroline888

Hi Caroline, yes I did look at your photo. It's difficult to see clearly.

Mine looks like small raised area of skin under the right side of my bottom lip. But my nose looks like a raised trail, like the pores are outward instead of inward, if that makes sense.

What I saw from your photo looked to me like a ridge. But of course they could be all the same thing, just showing different.

Caroline888 profile image
Caroline888 in reply toMannequin18

Thank you for your response. Your swelling sounds different from mine. I have seen mine referred to as a “ledge”. Still I guess they are both variations of the same thing.

Hope you get some appropriate treatment soon though I know it can be a long, hard battle with GPs who seem to know very little about hypothyroidism😟

All the best anyway

Caroline

KristinaCPH profile image
KristinaCPH

Yes, I did have myxodeama before i got treatment. But I can not relate to your descriptions. Could you possibly link to the photos you have seen?

Mannequin18 profile image
Mannequin18

I saw the photo on "the free dictionary.com" I tried to copy on here but was unable to do so.

Mannequin18 profile image
Mannequin18

Thank you for your reply. I am Hypothyroid on 150mg daily. I am not focussing specifically on any features, just a change in how my skin now looks. And I came across an article depicting changes in skin for Hypothiroid patients and thought any info is useful.

flo-jo100 profile image
flo-jo100

Hi,

I have had slight swelling above my left eyebrow and below my bottom lip since being diagnosed with Hashimotos. It’s still there hasn’t got worse if anything better.

Mannequin18 profile image
Mannequin18 in reply toflo-jo100

Sounds very similar. If you look at the thread I put on about the photo I came across, it might have some useful information.

Mannequin18 profile image
Mannequin18

Hi,thank you for your comments.

I have recently had blood taken but the practice that I go to at the moment, only test TSH. And mine was0.45. So was in range.

I never realized that different surgeries do different tests. You would think it was standard practice to test all that needed testing.

Previous doctors tested everything.

Mannequin18 profile image
Mannequin18

Thank you. I totally agree. I don't understand why doctors don't take it seriously.

There should be propper tests for everyone with any life changing illness.

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