TED and thyroid levels not right

Anyone with TED? I feel my eyes are worse (maybe the last week) I was diagnosed with mild TED at the same time as Graves. Discharged now by ophthalmologist. The last week my eyes have felt more sore, but I put that down to having the heating on. But this morning when I looked in the mirror I was sure my eyes seemed more bulgy/starey :(

Anyone else find their TED seems to change according to their levels?

13 Replies

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  • Yes I have severe TED. Yes absolutely the heating will dry your eyes as it would anyone but with TED you will already have dry eyes or certainly much dryer then normal eyes. I believe my eyes feel swollen if they dry out, which sadly happens often. My eyes don't fully close when I sleep, horrible I know but when I wake up I can not tell you how sore it is and how they look :-s . You might benefit from some good eye drops to use first and last thing. I use Celluvisc 1% w/v Eye Drops Single Dose Containers 30 Carmellose Moisturises and this really helps me. Winter in general is not good for TED! I hope they clear up for you.

  • Do you not tape your eyes shut shambles? I couldn't have lived without my micropore!! Are you still active? If not are you considering surgery for your eyes?

  • My eyes are still active, year 5! I use an eye mask with a chilled eye gel mask pressed on my eyes, if that makes any sense? I've had IV steroids and that didn't work. Refused radiation. My eye doctor said nothing will make then close because they are too big. Surgery is always on the cards either by emergency or if my eyes ever settle. Having a bad phase with them just now both physically and mentally. Now having to wear sunglasses all the time and seems my peripheral vision is affected this past week or so and I am tripping on everything :-( It's a cruel game.

    Are you active or thinking of surgery?

  • Too big? How can they be too big? Your eyes do not grow!!

    If your disease is active then steroid or immuno suppressants (prograf etc) would help.

    Surgery can be performed during active phase if necessary for three sake of your eyesight.

    I would definitely suggest you tape your lids down (even if not completely shut) along with a decent dose of say "lacrilube" it will help work the health of your eyes and make them much easier.

    If your disease IS active you need treatment or alternately a new ophthalmologist.

  • I couldn't agree more with you about needing treatment or a new ophthalmologist. My current eye doc says nothing more to do but monitor unless off course the fatty deposits start pressing on my optic nerve then it's operation time. But I really hope that doesn't happen on many levels and the thought of having the operation during the active phase is not ideal, I really don't want to have to have the operation again which can happen more so when you are operated on during the active phase but off course that can happen even if you are not in the active phase. I was referred to HoD in Leeds General and there must have been 6 or seven of the doctors all came to have a look, that speaks volumes on my unique look! He said my eye sight was near perfect, not what they would expect for the level of proptosis. He said there was a 60% chance of making my eyesight worse and based on that he did not want to take any action unless absolutely necessary. That was last year. I had a MRI scan last month and will back at the hospital in December to hear the results. I will bring up the steroid/immune suppressants and hear what they have to say. I'll have a go at the taping too. Thanks for your advice.

  • I felt ophthalmologists at Leeds were overly dramatic about odds of making my eyesight worse and got 2nd opinion from Manchester Eye Hospital who were not only happy to operate, but also sounded confident about their ability to improve my eyes! (They did!). Would definitely recommend seeking a 2nd opinion at a different hospital, even if just to confirm best to wait...

  • When I asked about the puffiness over my eye (I thought it was fluid) I was told by the ophthalmologist that it was where the fluid had stretched the skin and because of my age it didnt spring back.....bit like me! But when she saw me in a years time (although I have been discharged?) we could discuss surgery to nip and tuck those bits. It could be done on the NHS as not cosmetic. Not sure I want it done as my eyes are very important to me :s

  • I had a two-wall decompression on each eye to reduce the proptosis - op sounds horrific, but very glad I did it as it has helped me to look a bit more like 'me' again. I am now on list again for some removal of unsightly out-of-place orbital fat. There's a bit of a long waiting list at Manchester, but treatment I've had there has been excellent :-)

  • Brave lady! Not sure what the local surgeons are like.

  • Thanks for this lizzyd, again very interesting to hear the actual rather than the 'might bes'. I was offered the OD in York where they have only done a few operations and they do the operation the old fashioned way through the eye. York hospital highlighted that Leeds hospital do the operation the new way which is through the nose and have a great deal more experience. They referred me to Bernie Chang who trained at Moorefields, so that's how I ended up in Leeds. Not sure I can face much more at the minute with my eyes. I had my thyroid removed based on the fact I was told my eyes were bad that was the only reason, since then my eyes have got worse and I have not settled on Levo so my eyes are always unsettled. Now suffering major panic attacks so much so I doubt I could face any operation. Chicken and egg, I suspect the panic attacks are coming from the fact I can't take the sunglasses off without causing people to stare. Nightmare.

  • This is an extract Dr Toft, of the BTA wrote in an article in Pulse Online, for your information.

    4 How does thyroid eye disease manifest itself and how is it treated?

    Most patients presenting with the hyperthyroidism of Graves’ disease will have some evidence of thyroid eye disease, ranging from lid retraction with excessive lacrimation in bright light to marked exophthalmos with limited eye movements, diplopia and reduced visual acuity.3

    The hyperthyroidism of Graves’ disease and thyroid eye disease are best considered as two separate, organ-specific autoimmune conditions, which frequently coexist. This explains why the eye disease may precede the hyperthyroidism or even occur for the first time years after successful treatment of hyperthyroidism.

    The eye disease has its own natural history – a period of deterioration, followed by one of stability and ultimately of some improvement. But the ophthalmopathy will worsen if thyroid function is not controlled – whether through inadequate or excessive treatment.

    The eye changes often persist for two to three years after successful treatment of the hyperthyroidism and although there may be significant improvement there is often residual disease, which can be improved by orbital decompression, strabismus surgery and eyelid surgery.

    Of all treatments of the hyperthyroidism of Graves’ disease, iodine-131 therapy is associated most often with a worsening of the ophthalmopathy. For that reason it is relatively contraindicated in patients with significant eye disease. For these it may be better to use combination therapy with carbimazole and levothyroxine for the best possible control of thyroid function.

    But if radioiodine is the chosen therapy, enteric-coated prednisolone 30-40mg daily should be prescribed for six weeks, as this has been shown to prevent deterioration of ophthalmopathy.

  • Thank you Shaws that answers the question of deterioration due to levels not being ideal.

  • I can feel another question coming on.................

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