Is this a goitre?: Been on levo for 17 years... - Thyroid UK

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Is this a goitre?

Aquapuss profile image
13 Replies

Been on levo for 17 years, felt under medicated for most of that time however new GP raised my levo due to ongoing symptoms to 150mcg 3x week, 125mcg 4x week back in January 2020. Before this I was on 125mcg daily for many years. Had bloods done this week, TSH 0.76, which is lower than previous levels which were between 1-2. She didn’t measure T3, T4 or antibodies though ( antibodies have always been low when measured before)

Felt fine at blood test, feel extra meds have helped but also maybe need 150mcg daily rather than split dose. Later that night developed sore throat, dry painful cough. Got covid tested yesterday, result this morning was negative. I woke with v swollen neck after poor sleep. Is this a goitre? Feels less like a sore throat now, hoarse voice though and swallowing more difficult, also very fatigued since it started. Can anyone advise please?

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13 Replies
Lora7again profile image
Lora7again

It does look like a swollen thyroid ... have you ever had a ultrasound? Just to add my neck looked like that at the very beginning and I have multinodular goiter. At the moment it doesn't look too bad because I am feeling well.

Aquapuss profile image
Aquapuss in reply toLora7again

Thank you for replying. Have managed to send my photos to doctor just now ( econsult thing didn’t work) so waiting for her to call me back. Come to think of it I think I have had this before? But just put it down to sore throat! Is that possible for goitre to come and go? Do you still have visible goitre? Was it caused by underactive thyroid? Glad you feel well now

Lora7again profile image
Lora7again in reply toAquapuss

I have a multinodular goitre which can cause me symptoms and I actually had a thyroid storm last year because of it. Just to add that is a rare occurrence and doesn't always happen. At the moment it is not as swollen as it once was and I feel ok and you can hardly see it. I have had it for 12 years and it won't go away but it can sometimes not feel as swollen or give me symptoms. Some people will have difficulties like Panda321 but some goitres never become very big or impact on your breathing. When I was first told I had a goitre I googled it and all these horrible pictures came up with people with enormous necks and bulging eyes. These are extreme cases and not everyone ends up with having that but it can happen if it is not monitored by having regular ultrasounds etc. I have had 3 ultrasounds and at my last one I was told that I did not have Hashi's so I probably have Graves' which my Endocrinologist told me I had 10 years ago.

Aquapuss profile image
Aquapuss in reply toLora7again

Yes I’ve seen the scary pictures too! Thyroid storm is scarier still, how awful for you. I never had anything dramatic happen thyroid wise, just the usual doctors saying my tests were in range for years while gaining weight, and having low energy dry skin, hair loss etc ( which has all improved on the higher dose since Jan) Was hoping she would offer ultrasound as it seems odd I’ve never had one. Don’t think I’m Hashimoto either, antibodies have always been negative which puzzles me as nearly all of the hypo people have hashi. Don’t know much about Graves? Is that overactive and affects eyes?

Lora7again profile image
Lora7again in reply toAquapuss

It can affect the eyes but mine haven't been yet so I have been lucky.

Aquapuss profile image
Aquapuss in reply toLora7again

Oh good, hopefully it won’t be a problem for you.

Aquapuss profile image
Aquapuss in reply toLora7again

Doc says its De Quervain’s thyroiditis- fancy name for a lumpy neck!

Lora7again profile image
Lora7again in reply toAquapuss

Are they a GP? Most GP's know nothing about thyroid disease so I would ask for a ultrasound and to see someone who knows about this. My own GP has admitted he doesn't know anything about thyroid disease so at least he is being honest.

Aquapuss profile image
Aquapuss in reply toLora7again

Yes a GP, not my usual one ( the one who increased levo ) My experience of GPs on anything thyroid related has not been good. Its all about the TSH for them, but in fairness I think that’s all they are taught. Latest GP has been the best so far as she was willing to try increased levo when I had been asking for years! I asked the one I spoke to yesterday about getting an ultrasound, she said to try ibuprofen and if goitre still causing issues in two weeks could consider referral. Her view was it wouldn’t make any difference to my treatment so not necessary. I would quite like to know what’s going on under my skin though- do I have any thyroid left? Are there nodules or anything worse?

Lora7again profile image
Lora7again in reply toAquapuss

I would press for a ultrasound if I was you. The reason I have one is to check that none of the nodules have increased in size which could be a sign of something more sinister. Luckily mine haven't got any bigger so far. You might find your goitre decreases once you are getting the right amount of Levothyroxine. Mine is not too swollen looking at the moment because I am in remission.

Aquapuss profile image
Aquapuss in reply toLora7again

I am finding this very weird, neck swelling went down and sore throat disappeared over weekend, great ...BUT I then developed raging pain in upper jaw, gum infection exact same place as where I had one at Xmas. Gum swollen, been on ibuprofen trying to take pain away waiting for dentists to open and guess what? Goitre back just like photo from a few days ago! Are they connected?

You need to get it checked out. Your symptoms could indicate a goitre. You need to beware of breathing difficulty as you will be susceptible to pneumonia; I got it 3 times with my goitre before an ENT consultant got me straight into hospital. As a tracheotomy kit was placed next to my bed, this condition really could be described as rather serious!

Fatigue is certainly another indication that there's something seriously wrong. With me I was certainly VERY fatigued but I was not taking any medication at that time.

Aquapuss profile image
Aquapuss in reply to

Thanks Panda321, just had doctor confirm it on phone. Its goitre, she thinks caused by viral infection triggering thyroiditis. Has suggested ibuprofen then if it doesn’t go down in couple of weeks, to get ultrasound scan.

Pneumonia sounds v serious, do you know cause of your goitre? Has it gone away? Its confusing that over and underactive thyroid can cause it

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