Swollen tongue worse since starting thyroxine. - Thyroid UK

Thyroid UK

137,154 members160,836 posts

Swollen tongue worse since starting thyroxine.

sparkly profile image
10 Replies

Hi, I'm newly diagnosed and have been on levothyroxine for seven weeks, increased to 100mg from 50mg after two weeks. Although the no energy and fatigue I have had for seven months, now seems to be lifting. I only feel 70% back to normal self. It is early days i know and are just happy to have some battery power back. Anyway, my main worry at the moment is my swollen scalloped tongue. It was swollen before starting on thyroxine, but now is worse. Some days worse than others, it makes me feel like I have lump in my throat and is uncomfortable to swallow. I have just had my first bloods done since starting thyroxine, but stupidly didn't ask for a copy. My Endo said ft4 was just above range and ft3 was now middle, didn't ask about tsh, it was only just above range when diagnosed. He was happy to keep me on 100mg and see me again in 3 months.

Do you think the tongue swelling more, is a side effect of the thyroxine? Non of my other symptoms I suffered with have yet improved. My underarm basal temp this month was 35.68. The make of thyroxine is actavis. X

Written by
sparkly profile image
sparkly
To view profiles and participate in discussions please or .
Read more about...
10 Replies

There's another thread going on about this here:

healthunlocked.com/!/#thyro...

shaws profile image
shawsAdministrator in reply to

Did you mention this problem to the Endocrinologist? Also, for your own records always get a copy of your blood tests complete with ranges. The Endo should send a copy to your GP so you can ask the surgery for a copy.

Going from 50mcg to 100mcg in 7 weeks is a little quick. Usually you go up by 25mcg about every 4/6 weeks after a blood test.

sparkly profile image
sparkly in reply to shaws

Thanks Shaws, yes did mention this, but said it was nothing to worry about. Being the sort of person I am, I did not question him further. I suppose I still feel uncertain about my diagnosis. Always being told I did not have a problem with my thyroid, as my tsh was always in range. I do wonder if going private bought me my diagnosis and if i'd have seen the same Endo on the NHS, the outcome might have been different. This doubt is all because we have it drummed into us that if your tsh is in normal range, then there's nothing wrong with you. NO, I am sure that my Endocrinologist is right, and I DO have a thyroid problem, even with a tsh that was just over range. I think what swung it for me was my slowed ankle reflexes. This could be important for other undiagnosed friends on here.

I feel relief now I'm on the books, it has been a long battle and a long journey ahead I know. I just hope I start to feel my old self, get my mojo back and at long last, lose a bit of weight!

tegz profile image
tegz

I thought enlarged tongue was part of HypoT symptom.

Before starting Levo I was biting my tongue rather too much.

Strange to find that after being on 25 Levo a few weeks my tongue still feels bloated and since starting daily iron -even moreso -though energy slighty better.

This shows the iron connection with HypoT and it's treatment equally-odd to say.

It's been said for many that getting the dose of Levo up will sort out problems like this- but my thoughts are ever wandering to the subject of RT3 which will go up if T4 not being used well by the body.

Maybe this tongue issue is a pointer to lack of T4 correct utilisation, as well as lack of supply in the first place?

sparkly profile image
sparkly in reply to tegz

Thanks tegz, I just know my tongue was swollen and scalloped before starting on thyroxine, but is a lot worse now. It was really bad the first morning after taking the tablet. So I do think it must be related, but does it mean I'm allergic or possibly on to much? X

tegz profile image
tegz in reply to sparkly

Possibly both - if you're allergic any amount will trigger a reaction. GPs have used the term allergic to me when they really mean 'not tolerated' in way that disengeniously throws the fault back to the patient -rather than better drugs co-effects and efficacy monitoring.

[Yellow card- Yeah!]

Allergies mean rashes and itching to me!

The upside is that ar least something is happening!

I'm on a low dose compared to you but tghe body is very sensitive to hormones esp. when short of them in the right form.[ie:Natural=Best, but just 'not there'...]

My opinion on this in general is that sometimes the synthetic version is not the best option - but often the only one.

I have noticed that I really did feel the addition of Statone [Iron ] the other day even if it did make my tongue seem worse. My energy is better - but the crashes bigger. It sure is a course to run...

galathea profile image
galathea

Myexodema, caused by excess fluid (mucin) is common in hypothyrodism. T can affect the tongue making it swell too. It may be that you are not on enough meds, r haven't been on them long enough to take away the signs of hypothyrodism

m.youtube.com/watch?v=oI9yu...

Glynisrose profile image
Glynisrose

Swelling of tongue or mouth is a symptom of under active thyroid and even though IF am now taking NDT after 7 years of levo treatment I still suffer occasionally.

Teecut4 profile image
Teecut4

I had a swollen tongue with activis levothyroxine. I was also on 100 mcg. I've been to see ENT specialist and am due to go to endocrinologist, I also became allergic to wheat, starch, nuts whilst on this drug. If you can try and get another make. There seems to be a forum where you get swollen scalloped tongue if you look up Activis

Teecut4 profile image
Teecut4

I had exactly the same problems with actavis, swollen tongue and scalloped also I had an allergy to starch and wheat

You may also like...

Swollen tongue with scalloped edges

a bit swollen tongue with scalloped edges. It feels swollen and bruised. Normally I didn't have...

Feel worse since starting levothyroxine - when will it get better?

much worse than I ever have. Still all the same symptoms, just much worse, to the point that I have...

Feel worse since starting Levothyroxine

actually feel worse. Painful joints, aching muscles generally feeling off not much energy. Just...

Swollen tongue, weakness, glands..

'crash' episode has included a constantly swollen & painful tongue, major gland swelling &...

Hi need advice on starting thyroxine again please

however I am now up to 50mcg thyroxine and 40 liothyronine and I ache . my legs especially . I have...