Hi there. Is anyone out there suffering from thyroid eye disease? Is there any hope with this horrible disease?

Posted , 6 users are following.

I've had this disease for nearly 4 months now and would love to hear from anyone who has this. Need to know if there's any hope as I'm struggling!!

0 likes, 8 replies

Report / Delete

8 Replies

  • Posted

    Hi Carol129: I have recently joined this Forum and saw your post. I also was diagnosed with Hyperthyroid/Graves Disease in Feb.2013. My TED started in Dec.2012 and was in a mild stage until April 2013 when it turned to severe stage with protruding eye balls, swollen eye lids, painful and red, gritty eyes. I then had to undergo steroid Infusion therapy for 3 months and 1 week of radiation therapy. That stopped the swelling and pain but I got a relapse in September and had to undergo another 7 weeks of Steroid Infusion therapy and 1 week radiation therapy. There is not much improvement as my eyes are still bulging out at 18mm and 22mm and my eyelids are pretty swollen too. I also have very bad double vision and constantly red eyes but no more pain or pressure behind the eyes. My specialist wants me to have orbital decompression but I have not quite decided yet. I have been told that I have to be patient; that the TED will run its course in 18 months to 24 months. But it's ruining my life; I am always so tired, my social life is nil and my physical appearance has completely changed (for the worse). But I am still optimistic; one day this disease will stop and I can then resume my old life and hopefully get my once pretty face back.

    Report / Delete Reply
  • Posted

    Hi Melanie, it was so lovely to hear from you and to hear your story - what a time you've had. I cried when I read the last sentence of your email, because I know exactly how you feel. I used to think my eyes were my best feature and now I just don't feel like me anymore. I read somewhere that this disease is life dampening and I feel it really is. You can't escape it, it's just so visible! However, I've not had as tough a time as you. How are you doing? What did you decide about the orbital decompression? I hope things are going better for you. Please let me know how you're getting on as its so good to hear from someone in the same position. I'm now on medication which is regulating my thyroid and my eyes have improved a bit. I just hope this is a good sign. The worst is just having to be patient and not knowing if it will ever go away. Like you, I just want to feel like me again. Take care x
    Report / Delete Reply
  • Posted

    It's a horrible condition, I feel for you both. For me, it's pretty much changed the shape of my face, too and I look awful. Puffy eyelids and undereye. One eye is more bulged than the other and that doesn't help, you feel so conscious of your appearance :-(

    The worst is not being able to work properly (I'm a sculptor) and my eyes ache and feel gritty and sore, then I get double vision. My doctor said it would return to normal with the medication, but it is a long wait. I don't think I could stomach going through the treatments Melanie has had. I hope you are both feeling better and just looking forward to the day we can get our faces back x


    Report / Delete Reply
  • Posted

    Hi Carol, .....Melanie and Jacky xx

    Oh my word Carol how i sympathise with you, it reallly is horrible. It will stop , eventually, it does have to burn itself out then you can have surgery if needed. No one who doesn't have TED can possibly understand how it feels and i don't know anyone else that has it... or even heard of it. !!

    Mine started about 5 years ago, as the result of an over active thyroid that calmed down after a couple of years of treatment, and i had to wait for it to stabilise before i had any surgery, about 3 years after it started. It just didn't know when to stop i think

    Luckily mine was just in my lefy eye mostly and it didn't bulge too much so they didn't do decompression. I had to have the eye muscles re-aligned to help with the double vision, that was in Nov 2011 after it had been stable for about 18 months. In the mean time i had a prism fitted to my glasses to help with double vision, but when it was at it's worst i was going to the orthoptist every 6/8 weeks to get it changed.

    I had the dry extremely painful irritated eyes, slightly bulging left eye, very light sensative eyes and double vision. It really was very distressing as the pain never seemed to stop, and just when it seemed to have settle slightly, whoosshhh off they would go again and i needed a new prism again.

    I was so distressed i asked the surgeon to remove my eye, i couldn't see any other way to stop it. I do think they shoud sit us down and talk to us explaining how it might affect us, that would at least stop some of the panic when things happen.

    after about 9 months of post op appts (as i noww have fibromyalgia.. also the legacy of my thyroid going nuts !! it appears that can hinder recovery from surgery and it takes a lot longer to recover ) the consultant was happy with the surgery, i mustt say it made a real difference once it settled down a lot, and discarged me back to another consultant , 2 hospitals were involved as not many did the surgery i needed, i had another surgery in July 2013 for upper eyelids ddrooping. still having post op appts again due to nerve pain in the eyelid and still have painful stitch lines.

    I've got an appt on Fri to see the consultant but i think it's just a case of discharge me and that's it as there is no more surgery that can be done.

    I do however want him to tell me what the legacy of TEd is as i can find nothing on any sites that say there are any problems, in fact no sites i've been on do any justice to the horror that is TED. I still have some vision problems and random other bits that the consultant said oh it;s to do with the eye disease and the fact the muscles in your left eye have been damaged and lost their flexability the 2 eyes don't quite focus as they should. Expalins why when i look up my vision os blurred and takes a few seconds to focus possibly.

    they do seems very reluctant to tell me how it will possibly affect me, but i really want some idea as i'm now slightly paranoid about it all coming back again.

    Hope all goes well with you ladies, sorry for the long post but it is so nice to talk to others in the same boat in the hope we can get more understanding and give help advice and support i don;t know anyone else with TED.

    take are

    Jan xx

    Report / Delete Reply
  • Posted

    Ive recently had a total thyroidectomy and having suffered graves for 2 years and on carbimazole, ive just had my 2 week check and all is fine. Just found out the eye disease is separate and carries on, is this other peoples experiences and does it stay the same or get worse ?
    Report / Delete Reply
  • Posted

    Carole, I've had graves disease and Ted. Don't despair. You will recover.

    It does take time. Call 0800 800 8133 TEDct and ask for my private tel

    Number if you would like to talk. Or talk to them everyone there has had, and recovered too, from these diseases. We know what you are going

    Through. Call us, support is all important with ted. I hope you do call, with my very best regards Bez H.

    TEDct has a website too.


    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up