Anyone see thyroid eye doc/clinic?

Hi, was diagnosed with graves 2004 and had thyroid removed 2007. Not once was l sent to see an eye doctor despite bulging left eye, sore red dry Puffy lids.. At each visit all l got off endo regarding eyes was a book to look at to check l could make out numbers through colours.... Fast forward thus year l got some private bloods done known I was been undermedicated... Which l was so went to gp with findings and asked to be referred to endo as I'd never been well... Got levels sorted. Better than what l was and thought I'm going to ask bout my eyes he asked why l wanted to go to clinic told him I'd never been offered an appointment ever and would l be abke to have my eyes tidied up...he said l don't think they will do that!! I hate my eyes my lids are so puffy my left eyes bigger than right I'm very self conscious ...... What's likely to happen at this clinic? Can't believe he said that too me! I was hoping l could get this sorted at last! what should l expect at a first visit? thank you

14 Replies

  • I am sorry you had an unsatisfactory consultation regarding your eyes. He should have referred you to a specialist who deals with this part of hyperthyroidism.

    I would ask to be referred to Moorfields Eye Hospital. Some hospitals do have one in situ.

    Thyroid Eye Disease is separate to Graves and should be treated so. Someone who has had TED (for short) will respond to your question. This is a link to the Charity:-

  • Thank you l was so nieve back then. But I see groups on net where people are having surgery to put things right. And l was just left! I don't holdout much hope after endo said what he did though!

  • Hi Den, I attended the eye clinic regularly for TED. I have a severe bulging and my eyes are still 'active'.

    I am surprised that you haven't had your eyes checked particularly if you say that it is evident they are affected and you've asked. Generally speaking, eye care is a great deal better than thyroid!

    As far as the clinic they will test you eye sight as you would expect, probably do a gluacoma and fields. A specialist will see you and look at the back of your eyes and this will give you an idea of what has been happening. They can see if there is any fatty deposits behind the eyes. In some cases they might send you for a head CT or an MRI, not on the same day.

    As far as operations, I get the general impression that they are not that keen or rush to operate but there are surgeries that can help or improve things. I have been told I will need between 4 and seven surgeries over the next 5 years. I am not looking forward to them!

    Good luck

  • Don't know if this is any help but when i first went hospital with Graves it was a point system for the eye cliniic .And although i have attended the eye clinic for the last 10 years for TED .It seems to me that thyroid patients are not seen as priority as i get appointments cancelled .Maybe you could have a word with your optician see if he will write to your GP .

    Ihave one protruding eye and really puffy saging eyelids double vision ,squint, sores had cysts removed i asked about my eye lids as they are really bad ,in the begining i was told when meds are stable maybe they would do something .but now have been told other eye operations are more important .I'm very self conscious and my one eye as a mind of its own .Hope you get better luck than meas i know how you feel.

  • Hi I was diagnosed with TED late 2008 I like you was told it would be years before anything could be done. I did not accept this as I felt my life had come to an end. I had the squint corrected in June of 2009 and had a double decompression performed to correct the bulges in nov 2009. I found a fantastic eye surgeon who returned me to normal. I was also told it would take many operations but my surgeon corrected the bulges in one. I was driving again 10 days after.

    It is terrible that treatment is so varied but you need to find a consultant who specialises in TED , it is quite rare my GP had never had a patient with it or knew about the operation.

  • I was told by a locum doctor at the hospital to go to America as there was a new op there .I don't think my GP would be any help .They have had letter's stating that my throid bloods should be stable as i have eye problems .Idon't think they even read these letters ,they are hopeless.

    Thanks on my next appointment at the hospital i will ask again may get lucky .

  • If you send an email to and give her the name of this very good Consultant surgeon for TED.

  • The book with colours and numbers is called an Ishihara book, not sure of the spelling! It is used to test colour blindness. So if you have normal colour vision you see one number but if you are colour blind the same plate shows you a different number. Males present colour blindness and females are carriers but I did come across a female medical student who was colour blind so not impossible to be. Can't imagine what your doctor was showing you that for. I did see something recently that not being optimally medicated can affect the brightness of colours but I didn't take much notice of that and I can't see how this particular test would illustrate that. The colours in the book are quite dull I've always thought.

  • Thank you everyone! Yep the colour chart was my ted test every visit with the endo! I have puffy saggy lids left eye is bigger than right l still get red eyes from time to time I too have a cyst in one of my eye lids a locum doc told me what it was but not once have I been offered to attend a clinic and here I am 10 years later and l had to ask..... I still get blurry vision , light sensitive, dry eyes my lids sometimes swell more so practically right on top of my eye l do not get double vision thankfully l actually had a squint corrected as a child.... I hate the way my eyes look l can't look anyone in face more so people l know! I am so happy some of you have had treatment and look like your old selves! I'm terrified they won't do anything for me! X

  • You will have to push. If you Private Message to Shea2482 just click on her name.On the right hand side you will see send message and click on this and ask for the name of her surgeon. It may be worthwhile travelling if you can get a referral. Don't waste any more time.

  • Really? So they would just continue to leave me with this issue? Thanks for giving me the nod... I'm not holding out much hope ! Did Shea have to fight? X

  • Just searched and can't find her x

  • I did mine @ eye institude in NY it cost me around $5000 .. Columbia hospital, one day operation, very easy, no bruises or pain. Search for Dr. Michael Kazim, very good dr. My eyes were pretty, went back to normal until i started to smoke again. Need to quit smoking and fix my left eye again.

    Feel better & salam from Egypt <3

  • Hi thanks I'm the uk! I've got myself an appointment to see eye specialist at last!

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