Can members who suffer from TED please tell me:-
Was your TED diagnosed as mild/severe?
What treatment, if any, did you have?
How long you have suffered from TED?
Have you found any natural remedies that ease the symptoms?
Do you find your eyes are worse if your levels are swinging more to hypo or hyper?
Thank you 
Can u explain what TED is please?
Thyroid Eye Disease
I was diagnosed with mild TED in 2005 along with severe Grave's disease. I had my thyroid removed in 2006 and the eyes have stayed much the same. I have puffiness underneath and they are always dry. My optician says this is caused by blepharitis. I believe that is also connected to low thyroid and for 6 years I was on Levo only, which left me with many symptoms of being underactive. To soothe dry eyes I use Celluvisc, on prescription from my GP but have also found bathing them with quite hot (as hot as is reasonable) water, to stimulate the glands that produce the oils and whatever else it is that keeps eyes healthy. Chamomile tea used to bathe them is good if they ever get infected, which mine occasionally do. Any tips yourself?
Not really, I use Clinitas during the day and Lacrilube at night. I am very short sighted and worry it will become worse due to TED.
Hey
Yes I have TED. I had moderate protrusion and lid retraction and sad to say the best remedy for eye disease is thyroid removal - my eyes went down whilst I was still under anaesthetic for TT. RAI for Graves is contraindicated if you have TED. I'm under the care of a leading eye hospital in London and awaiting surgery for the strabismus I'm left with after the 'hot' phase had passed. Lid retraction tracks thyroid levels directly - so the more hyper I was the more wide my eyes were but going HYPO is the worst thing for your eyes so you need to be closely monitored.
Obviously tamping down the autoimmune upset is key to bringing down the inflammation but most of us with TED / Graves (I also had Hashis and hashitoxicosis) need a definitive treatment. Please understand that I am NOT advocating a TT - that must be the very, very, very last resort after all other options explored. If you could be controlled with ATDs (block and replace) that would be a preferred option as it should eventually burn out. But TED is sort of a disease in it's own right - it's kinda related to the thyroid illness - it will burn itself out eventually. I was fortunate that I did not need orbital decompression following a return to 'cold' phase but I've struggled terribly with double vision and still wear a fresnel prism to correct it whilst I await surgery, but I can't have surgery until I'm stable and losing my thyroid has been a total nightmare (please don't do it unless you really have to!). I've had a very hard time getting stable after TT and my double vision has really got worse during the times my TFTs were low.
There is a TED charity and the US National Graves Disease and Thyroid Foundation have some good info.
Hope that helps
Rebecca
So sorry to hear about all your problems Rebecca 
Im fighting not to have RAI (yes I know!) or surgery (I have heart failure so dont really want another anesthetic) My eyes are definately worse at the moment and wondered if I may be swinging more one way than the other, in a manner of speaking!
I had very mild TED - doubt if my consultant (s) even consider that I have it, but when I was first diagnosed amongst other things, I was seeing a double image on the credits of TV programmes, one above the other like a shadow effect. If I read for too long I couldn't see when I stopped, I regularly do a one hour bus ride and read my book, when I used to look up I could hardly see straight. My eyes felt as if they were crossed although they didn't look it, I had dreadful dry eyes and my eyes watered because of the dry eyes. Sometimes they felt like they were being sucked into their sockets and just ached. After a year on B&R my eyes feel a lot better.
I used to use a facecloth squeezed out in as hot water as I could stand, held over my eyes, I used additive free eye drops, my favourite being Hyco-San but they also do an on prescription version which is expensive and doctors don't like to prescribe them, sometimes have used Gel Tears. The secret of eye drops is to make sure you use them often enough throughout the day not just morning, noon and night. Air con in the car used to make them feel drier / worse so avoid having air directed at your face.
My eyes were 'funny' before I was diagnosed with Graves.
I would say mine was definitely mild.
I think they were worse when I was hyper although they might be better now because I'm fairly well balanced at the moment.
I take sublingual B12, vitamin c, CoQ10, use a Vit D spray, try to remember to eat a few Brazil nuts every day and take an A-Z multivitamin every day so any / all of those might be helping.
Good luck, hope your eyes feel better soon,
Liz
I do take vits etc including Selenium (hate brazils!) not sure why the change at the moment.
Ooh I love them - especially when combined with fruit and Cadbury's chocolate! Seems you have to be careful not to eat too many.
You can keep the dried fruit too.....I'll just have the chocolate
Aren't you just so lucky you can't go on the Cadburys Fruit and Nut diet
can i ask what b and r is ??? im really struggling with ted at the moment and no drs seem to what to help me
It's Block and Replace, the thyroid is completely blocked by Carbimazole then Thyroxine is added to balance out your levels.
Have you seen an Ophthalmologist at a hospital? This is a must if you have TED and your GP needs to refer you.
I now find (this is an old thread) that being 'hypo' makes my eyes worse, so the next question is how are your thyroid levels? It would be better to start a post with whatever questions you need to ask as this wont be seen.
Do you have Graves? Again a GP cannot treat you as they dont have enough experience! You will need an Endocrinologist. If you dont keep a check on your levels you need to start asking for your results now (which you are entitled to). You also need the ranges (figures in brackets) to see where you are within the range (most people feel better 3/4 of the way, for both FT3 & FT4)
Apologies if you already know the rest of this
long story but since april this yer my left eyes gone fuzzy , been seen by too different hosptials and they said nothing is wrong , after they lost all my notes and mri scans they said im ok , then i mentioned it to my brilliant endo , and she diagnosed me with mild ted , but its not mild i dont think as i can hardly see clearly thur my left eye
Will your Endo refer you to an Ophthalmologist?
Do you take Selenium?
i see one in derbyshire and one in cheshire and both have not picked up that i have ted , so not that clever are they ? yes my endo put me on selenium
200mcg? That's the dose my Ophthalmologist suggested.
Maybe it's not TED. Your profile says you have Sjogren Syndrome, I dont know much about that but could it be symptoms of that?
no , they got that wrong aswell , its defo ted , just wish its not taken all this time to diagnose
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