Overactive thyroid and thyroid eye disease.. Feel so ugly :(

[Sarahmc_8630]

Hi All, been prescribed PTU for my overactive thyroid- will this help my eye disease also? My one eye is bulging and I feel so unattractive

[Karen321]

I have Graves and TED and yes it's very distressing and erodes your self confidence. I take selenium 200mg per day for my eye and also wear tinted glasses to disguise it a bit. Ask your doctor to refer you to the eye doctors so they can monitor it

[cbraffe]

sorry you feel that way. I have the same conditions you have and mine was so bad I had to have Radiotherapy and steroids. I am much better now but struggling with the after effects of the treatment. I do attend Moorfields and have been advised that the eyes will settle after a year roughly. please try and take your mind off the bulging. It can be distressing.

[Sarahmc_8630 in reply to cbraffe]

Thank you for your reply.. Its horrible isnt it, to suddenly have this change in appearance. Thinking once my thyroids sorted of maybe going for the decompression but then there's the risks and the scarring :/ urghh

Deffo investing in some selenium x

[cbraffe in reply to Sarahmc_8630]

I do not recognise myself and the steroid infusions made my face swell up too. I have had terrible remarks from some people that I used to think were friends. But I have also learnt to look on the brighter side. I have put on 3 stones in the space of 4 months as a result of the treatment and my hair is falling out too. But because I had days when I could not get out of bed my focus is on how far I have come. please be kind to yourself . feel free to inbox if you need aby support. It is a very long journey. Fortunately my husband has been very supportive.

[Sarahmc_8630 in reply to cbraffe]

Oh I'm so sorry for your experience- that's another thing I neglected to mention; people's vile, ignorant comments. Stupid dinner lady at work dead loudly asking what's up with my eye. You just feel like telling them to **** off and mind their business. Never realised how rude people can be. Hang in there & take ur meds, hopefully things will look up for u soon lovely. Maybe try selenium too? Few ppl have mentioned that now Thank you for your kind reply also x

[cbraffe in reply to Sarahmc_8630]

Thanks for your kind words. I do take selenium . I have learnt to be so rude and respond to ignorant individuals excatly the way they should be. And have cut off from so many narrow minded individuals. I was off work and on return while in the lift one lady asked me if I was pregnant as I look fat and my face is all plumpy. I told her if that was the case then she must be pregnant too. you have to laugh sometimes. it does get better though

[kaylala68]

Hi, I had graves and Ted then had almost total thyroidectomy, the TED didn't get any better so I had bi lateral orbital decompression. It did help a lot my eyes went back by 9mm which is a great deal. It was extremely uncomfortable and not a nice experience but I do not regret it as people can be so cruel when you look so different.

Hope this helps.

[cbraffe in reply to kaylala68]

Thanks . I have developed thick skin it is normally the ones with nothing to do that go round making others feel bad about themselves.

[Nicky74]

Hi Sarahmc_8630

I had TED also, at the time I could not see the end of this, and really got me down..for me they said that I could have eyelid (one of my eyelids hung down) surgery after my TT so I knew I would not look like this forever, the most frightening thing for me was the thought of my eye sign going worse, I was experiencing vision problems and pain in my eyes. All that was 3 years ago, my eyes are totally better my eyelid is near perfect….am glad I had the surgery now, it all worked out good in the end…. its just crap you have to go through it in the first place. Good Luck x

[cbraffe in reply to Nicky74]

Thanks fot the encouragement