Thyroid carcinoma: I had TT nearly 2 yrs ago . No... - Thyroid UK

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Thyroid carcinoma

Gcart profile image
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I had TT nearly 2 yrs ago . No previous testing or any thoughts I had any thyroid issues. Anyway I am reading sometimes about thyroid nodules when suspicious can be left as they cause no problems. !!

Anyway this is my experience . Prior to doctor diagnosing it .FNA ,ultra sound the lump I had pointed out on my neck still remains . So that wasnt the problem .

But, I had thought my symptoms were due to another illness I have , and getting older ☹️ however whilst replacement is not perfect I have lost so many awful 💀symptoms and certainly am much better. Can at least function better.

Wonder what anyone thinks ,because

Is what is being said another example where our complaints of symptoms are not being heard.

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Gcart
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6 Replies
MMAndrea52 profile image
MMAndrea52

Hi i had TT last Tuesday, felt really bad on 125mcg levy. Terrible anxiety, tho i believe we’re made worse by caffiene i drank 3/4 hours later. Yesterday I cut down to 100mcg and no caffiene, same today. And both days have felt great. More energy , no anxiety. Iv slept every night anyway so that’s another good score, and Im eating and going the toilet. So fingers x I will be joining you, as another success n happy ending after TT and on levythroxine. That is what you take isn’t it? And how much are u on?

Clutter profile image
Clutter

GCart,

I'd had typical symptoms of hyperthyroidism and GP agreed it was likely as mother and sister had Graves. When results came back they were positive for Hashimoto's but levels were unequivocally euthyroid. GP and thyroid surgeon insisted euthyroid Hashi's didn't cause symptoms but there was no further investigation into symptoms which were very debilitating. I had a large thyroid removed which turned out to be malignant. Had completion thyroidectomy 3 months later and symptoms improved almost immediately. So, either Hashimoto's does cause the symptoms I experienced or despite my pre-thyroidectomy euthyroid results the Liothyronine I was prescribed the morning after thyroidectomy was beneficial. I'm inclined to believe the former having read up on it subsequently.

Gcart profile image
Gcart in reply to Clutter

Yes before TT at night I was like a furnace, had palpatations several t9mes a day which left me collapsed . Would not go out without husband because he would help in that situation.

Couldn’t sleep although very tired but wired. Weight loss to name some of the symptoms at that time. However when being counselled for surgery was told my thyroid bloods were normal!

What does it say about these blood tests they do, !?

I have since tried to tell my consultant where I go for another problem about the improvement but nobody listens . I thought that the docs could learn 9smething from my experience.

Fat chance 😏

Clutter profile image
Clutter in reply to Gcart

GCart,

GP thought I was thyrotoxic but once the blood tests were back I was told my symptoms were non-thyroidal and surgeon said the same. I was shocked that apart from ECGs there was no further investigation. Ditto when I was unwell after being switched to Levothyroxine from Liothyronine. I was told "Levothyroxine can't do that" yet when I came off Levothyroxine twice for RAI symptoms improved. I decided as Endo wasn't listening to me I would listen to myself and spent a horrible six months selfmedicating including 4 weeks off all meds to 'detox'. It was worth it in the end.

Gcart profile image
Gcart

All a bit worrying. Up against it all the time 🙁

Gcart profile image
Gcart

Just to add a bit more info. I was in hospital 5 times with chest pain and rhythm problems. Was put up for a Angiogram wihich I had , heart was fine on all these tests. Whatever bloods test were done I am not aware of.

All above symptoms resolved after TT. Not sure what to conclude about what I have written but surely things should be better with diagnostics this day and age . Or maybe all knowledge and common sense has gone .

Makes a nonsense of what *they* spout though 😖

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