Thyroid eye disease…urgh. I thought having my thyroid removed and my meds stable my TED would improve. It’s been about 4/5 years now, whilst the first few years there was a few millimetres difference, they have now not changed for 2 years and I’ve come to the realisation that they’ve probably stuck like this. It’s such a cosmetic thing but I used to love my eyes, and now all I see is Sid the Sloth staring back at me.
They are so swollen, As it doesn’t affect my vision would be a candidate for surgery? Is it available on the NHS or would I have to pay to go private? Any ideas of costs and recommendations for surgeons would be appreciated too!
I’d love one day not to see my mascara smudged under my eye due my eyelashes are too close to the skin….one can dream hey!
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Jenna5
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With hashimotos hypo the autoimmune system generally only attacks thyroid tissue. So no thyroid no attack.Unfortunately with Graves disease the autoimmune system attacks the thyroid and similar tissue which is where TED arises. Even if the thyroid is removed TED can remain active.
Hi Jenna5, I have looked on your page for some background history but there's none although you do have your name.
I see you have TED. Speak to your GP and ask him to refer you to a local optomotrist who is specialised in eye conditions who may be able to help. He should be able to do that.
I was referred and don't have Graves but blepharitis.
Have you joinedTEDct.? They’ve been so supportive in helping me find a TED specialist ophthalmologist in my area. I’ve spoken with them several times on their advice line & joined some informative zoom webinars. They also have a Facebook group. I’ve not needed surgery to realign my eyes but I know many members of TEDct have & would be able to provide information on this. I’m not sure where you live to name a specialist in your area, so would recommend you contact the TEDct for this. I’ve seen so many ophthalmologists, but it was only when I saw a TED specialist that my eyes began to improve. I paid privately for the consultation but received treatment on the NHS.
Hi, thanks for responding. I currently see a ophthalmologist every 6 months-1 year. He hasn’t really done much to help, he messaged my eyes, checks them over and over then sends me on my way. I don’t seem him now until Jan 2022, and I live on the Isle of Man….I think we only have one or two ophthalmologists I’ve emailed him to see if I can talk to him sooner but no response yet
I would ask your GP to refer you to an ophthalmologist who specialises in thyroid eye disease, they often work with other consultants too, but at least that way you will get the correct advice.
Hi jenna I also have Ted's I had eye muscle surgery 6 weeks ago eye movements still not that good the surgeon said if he did any more it would pull my lower lids down so staying as I am I'm hoping to get upper lids lowering and fat removal it is not right that you have been refused maybe ask your gp to refer you to a different hospital I've heard moorfields eye hospital in London is very good they specialise in the treatment of Ted's if the doctor had to live with our eyes they get it sorted
How did you find the surgery? Mine is more for cosmetic reasons than anything, I feel like my TED has aged me so much, I'm wondering if fat removal is all I need, or whether they would take out bone to have them sit better
The surgery was not as bad as I thought it would be I don't think they will remove bone unless it is putting pressure on your eyes but they do remove the budica fat then lower the lids I think it is an octoplastic surgeon that does it I might have spelled in wrong ask your gp for a referral I've looked an can't find one on the ilse of man you might have to go to somewhere else and say you are going to get in touch with Pals because you are not getting the same treatment as people who live on the main land and that you are willing to travel to get the right treatment
Ah ok, I hope its something they can do. Yes, we often have to travel to mainland, I will ask for a call with my ophthalmologist and hopefully I will get one. If not, I will get in touch with TEDcr and see what they recommend. Thanks very much!
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I’ve emailed him to see if I can talk to him sooner but no response yet 
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Antithyroid Treatment as Effective as RAI for Graves Relapse and better for TED
