Thyroid UK
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overactive thyroid now eye disease

I was diagnosed with an overactive thyroid 7 years ago my life has been terrible since, I was on 60mg of carbimazole a few years ago for too long which made my thyroid underactive which made me put on lots of weight and to date have never been able to shift, in April this year I was diagnosed with thyroid related eye disease which frightened the life out of me, the day I was told was the same day the endo consultant signed me off as he said theres nothing else they can do as my thyroid is stable I was wondering if anyone else has similar experiences. Thanks for reading my post. xx

6 Replies

hi there , if you check the website of st.barts hospital [ London ] there should be a full explanation ---- that they know of to date --- with full info on what they are currently carrying out in treatment /testing and consequencies and eventualities [ that they are currently aware of ] not worry overmuch T.E.D. is important BUT IT IS NOT as I understand it LIFETHREATENING and can be treated [ my lady is currently being treated for it ] and is also being tested via a lot of hospitals in the nhs by way of a CIRTED program to evaluate the best form of treatment....hope this helps --- if you want to know who we are seeing at barts please p.m. me ....alan


Thanks Alan but I live in Scotland. I will have a look at the web site in the mean time.


if you check with louise at admin ....I have passed to her all the details of ALL hospitals that are currently taking part in this CIRTED trials ....and there are some in Scotland ---- all results are being assimilated by 'moorefields ' as they are the leading hospital in the country for ophthalmology .....[ she also has direct tele No 's and referral names at all hospitals .....hope this helps alan xx


Thyroid related eye issues or actual

TED? If you have TED you neeneed an ophthalmologist.

I nearly lost my sight (mine was severe) but it's a serious condition that needs careful monitoring and if it's still in active mode it needs treating.

See your GP or go to an optician to see if you can get a referral.

If however it's thyroid related issues (dry eye etc) there are many fab over the counter remedies



This is the recommendation by Dr Toft who was President of the British Thyroid Association and physician to the Queen when she is in Scotland. The following is from an Article in Pulse Online and if you require a copy email

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.

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.


My own experience is that when I was diagnosed with Graves Disease 10 years ago, I quickly developed associated eye diease which was monitored regularly at my local general hospital.

I also took carbimazole, but it is a very strong medicine and it's not recommended that you take it long term. In the end I followed my consultant's advice and agreed to a total thyroidectomy.

It is really good news that you thyroid function has stabilised. I hope that your GP is supportive with any other concerns that you have.


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