Graves' disease

[Izabela5827]

Has anyone had thyroid gland removed while having thyroid eye disease? How does it look like after the gland has been removed? Is eye disease becoming milder?

[Clutter]

Welcome to the forum, Izabella.

I had a hemilobectomy and completion thyroidectomy to remove my thyroid gland and the scar is tiny, in the hollow of my throat and almost invisible.

My sister was advised to have RAI to prevent TED worsening but we subsequently found RAI is contraindicated with TED and hers has worsened slightly. Don't let anyone persuade you into RAI instead of thyroidectomy.

There is a pinned link on TED under Topics on the r/h side of Posts.

[Izabela5827 in reply to Clutter]

Hello,

Thank you for Your reply. I'm having appointment with endocrinology consultant in April and I need to make my mind before that appointment regarding operation or RAI. The consultant said exactly same thing about RAI what has happened to your sister. However the opthamatology consultant said that RAI it's still ok to go with. It just made me a bit confused. im scared of operation and the tablets till end of my life too But don't want my eyes get worst. Thank you for your time. Regards.

[Clutter in reply to Izabela5827]

Izabella, I've had the operation twice and there wasn't much pain afterwards, just needed pain relief for 3 or 4 days.

Becoming hypothyroid is certainly something you need to think about carefully before agreeing to it. Ask your endocrinologist whether you will be prescribed a suppressive dose of Levothyroxine (suppressed TSH can prevent TED flaring) after thyroidectomy. This would mean that you wouldn't have problems getting sufficient medication that makes life difficult for many.

[Silver_Fairy in reply to Izabela5827]

The opthamatology consultant should know better! RAI is contraindicated with TED.

[Izabela5827]

So did you ended up hypothyroid after the operations? Sorry for the question. I read that after completely removed thyroid gland that's what usually happen before the body get use to tablet. I will make sure I know everything before agreeing on it but from the other side I don't have much choice. RAI is not really good choice and thinking that it all could relaps and going through all the problems again. Did you have any problems with voice after the operation? Did you have and difficulties in day to day tasks at home it work?

[Clutter in reply to Izabela5827]

Izabella, as soon as your thyroid gland is removed you will be unable to produce hormone and will be hypothyroid. You will be started on Levothyroxine the next morning so it's unlikely you will develop hypothyroid symptoms. My voice improved because the hemilobectomy removed the large nodule compressing my windpipe which made my voice hoarse. There is a 2% chance of vocal chord damage. I had a camera down my throat so he surgeon could avoid my vocal chords.

I had no more difficulty post op than prior but I had problems when I was switched from T3 to Levothyroxine (T4) and am now fine on T3+T4.

[Joyia in reply to Clutter]

Clutter, started on levo the next morning! I hope this is true today, I waiting 29 years to be given levo after my partial thyroidectomy in 1967, this was due to my own total ignorance in those days and my Doctors never taking my op into account over the ensuing years even though it was on their notes, quite shocking really.

[Clutter in reply to Joyia]

Joyia, it only happens after a total thyroidectomy. They still assume that after a partial the remaining half of the thyroid will pick up the slack and produce sufficient hormone, which as you will know, doesn't always happen.

[Joyia in reply to Clutter]

I didn't know that was the case Clutter, we learn something new every day.

[Bradleyeb]

Hi, I had my thyroid removed after being diagnosed with Graves Disease and suffered with thyroid eye disease, didn't opt for RAI as have a little boy and didn't want to be away from him. Operation was fine, tiny scar on neck. The only thing I'd say is that I wasn't aware of all the potential issues with taking throxyine - I've suffered terribly since with fatigue, mood problems, depression due to the throxyine! None of this was explained to me prior to the operation. If you opt for the operation, read up on here and be aware of your symptoms, don't let your Endo discharge you back to your GP either! Hope that helps x

[Izabela5827]

Hello. Thanks for All the replies. Thats definitely helpful. I did read about it a bit but all your replies gave me much more knowledge.

So did you get better with your fatigues, mood problems after some time? I will ask about it all as I'm sure they won't tell me everything. Thank you so much for all your help. I will update you in April what did my endo said.

[Silver_Fairy]

How long ago were you diagnosed with Graves? Have you been treated with antithyroid medication?

Dont let the Endo force you into anything you are not sure of, you DO have a choice.

[Izabela5827]

I was diagnosed with graves about 18 months ago. At the moment I'm on carbimazole 5mg. I went trough steroid treatment for my eyes too. Endo consultant is not pushing me for the operation but he said that's the best way to go with but it needs to be my decision which I fully understood. After seeing another consultant- opthamatologiest- that's what confused me as he didn't say that i can't have RAI with TED. Now I know I won't go with it. It's just annoying that doctors will never tell you everything. I want to plan a baby in near future and for example after RAI I won't be able for at least next 6 months. With help from all of you here I have learnt much more than from my consultants appointments. Thank you.

[shambles]

I was diagnosed with Graves' in 2010 by my eyes. My journey is not the best one to describe but can tell you that the thyroid removal was all good. To be honest the fear was the worst part. I had no pain, didn't even take a paracetamol. Home in less than 24 hours. Took a while for my voice to sound normal again, about 3 months and the scar is not really noticeable now.

The trick is to balance your eye problem with your thyroid and as Endo and Opthalamologist don't talk you need to make sure you are happy with all that is happening. My eyes were severe so that was a major consideration.