Graves Disease - can you be in normal range but eyes continue to get worse?

I was taken off Carbimazole at xmas to see how things went and at my last blood test I was in 'normal range', however, my eye lids have started to recede again and I'm going back to the starry eyed look. So what I'm really asking is, can the eyes worsen even when my last bloods say my thyroid is in 'normal range'? Has this happened to anyone else?

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  • I'm afraid I know more about being hypo but I expect this also applies for Graves. Just because you are in the "normal" range doesn't mean this is normal for you.

    Also, I assume you still have antibodies. As far as I understand it, it is the antibodies attacking the tissues around the eye that causes thyroid eye disease. It may be that your antibodies are higher again. I don't know if this could be caused by stopping the carbimazole but I would advise that you see your doctor asap.

    Hopefully someone who knows more about this will come along soon. I just didn't want to leave this question unanswered as it seems very important and somewhat urgent.

    I hope things improve soon!

    Carolyn x

  • Thanks for the response, yes when I was diagnosed 2 yrs ago they said my antibodies were very high and there would be a great chance of Graves reccuring after a period of remission. I shall ask for another blood test from GP and see where that takes me, not at endro clinic again until the end of next month unfortunately. Thanks again... x

  • This is an excerpt of an article by Dr Toft in Pulse online.

    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.

  • Interesting, thanks very much for posting!

  • Hi I am graves and also have TED. Thyroid eye disease (if you have a diagnosis of it) is a totally different condition and needs to be treated independently. You need an opthalmologist to ensure you get the correct treatment. TED will run its course from active to stable to dormant irrespective of you thyroid status although a stable thyroid will assist recovery. Hope you get some relief soon x

  • I would usually post this link:

    tedct.co.uk/

    BUT - at this moment, my security settings are blocking access - looks like the site has been hacked. Maybe try it sometime next week?

    That is a specific site for Thyroid Eye Disease. It is perfectly possible for someone who is hypothyroid, or who has never knowingly had any thyroid issues, to have TED.

    Although it is very heavy reading, this might be of some interest:

    thyroidmanager.org/chapter/...

    Rod

  • I have had thyroid eye disease for 26 years - it has trotted along on its own even when my thyroid has been stable - slowly but surely my eyes got bigger and bigger. and in the end they buoyed so much he referred me for surgery - when I went to the eye clinic there was a young surgeon there who offered me an alternative treatment to orbital decompression.It involved removing a strip of flesh off the roof of my mouth and grafting it into both lower eyelids- I also had skin removed from my upper lids - the grafts pushed my lower kids up and had the added bonus of secreting saliva into my eyes to keep them moist,The cosmetic results were absolutely amazing and remain so 15 years on.The recovery period was 2 weeks-I use sacrilege at night but that's about it-then interestingly my vision had never been affected( unless they water in windy weather) I don't believe this op is common but it is worth asking about before having decompression- I had mine done in Leeds :)

  • Meant lacrilube at night and my eyes bulged not buoyed- blooming predictive texting- lol

  • Also it wasn't until after the op that anyone asked me if I smoked-smoking makes it worse -I gave up but would have done so years ago had I known

  • Thanks for all the posts! At no time has my endro doc told me that they are 2 different conditions and should be treated as so! When my eyes were at their worst last year I was told I would only be referred to opthamology if I presented with double vision and or pain in my eyes. As I only presented with retracted eye lids and gritty/dry eyes I was given lubrication to put into the eyes. I went to my optician and was given the puffer test, that's my description of it, and my eyes were at point 18 in pressure?? They said that it is in normal range. I know its cosmetic but it really affected my confidence and I am dreading that they get worse again. My endro has also previously said to me said they cannot do anything to stop they eyes getting worse. If my next bloods show what they call 'normal' then I am worried my eyes will continue to get worse and no-one can stop it! :-(

  • Did you get sorted? Like you I was ever offered any help for my eyes. I'm 10 year on now. And getting referred to ted clinic but endo said he doesn't think they will do anything for me!

  • Vic go to your GP and ask for an appointment for the opthamology department. I had my eyes tested like you at my opticians for the same reasons and my optician stated that their tests although good do not go far enough. Hence an appointment at the hospital is needed. All the best and insist if you must as soon as possible.

  • i have graves eye disease (in stable mode at mo) it normally settles down once you get the gd under control with carbimazole. having thyroid nuked may result in the active stage of the eye disease recurring i have read, im having my thyroid taken out by surgery i personaly think this is saver if you have the eye condition. but on the lighter side looking like matty feldman is good for scaring the kids lol and is managed with viscustears eye drops and a lube cream you put in at night and this is important in the bed or close to the bed or you end up banking into walls. god bless and eat lots of cream cakes cos we can

  • Yes. I am about to undergo day surgery for gastroscopy for the second time this year, and the new specialist went into all pathological tests that I had. I had told him that I had Graves disease, but when he searched at my last blood test, my thyroid levels were normal.

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