Thyroid eye disease

[WestBurrafirth]

I think I have thyroid eye disease. I have Graves Disease (over-active Thyroid), and although my T3 T4 THS levels are returning to more normal levels and I have reduced the daily dose of Carbimazole from 15mg to 10mg, I have now begun to have problems with my eyes - double vision particularly when I'm tired. Prior to this happening I had seen an ophthalmologist who said that there was slight swelling on one eye but not significantly bad and my eye movements were good. I am now really worried as my doctor said I should be driving and am freaking out about this as I live in areas that really need car use. Am waiting for appointments to see specialists but wondered if anyone else has suffered from this and would really welcome any suggestions as to what to do.

[Caesard]

I have been through one full cycle...hot phase ( rapid progression, swelling, exophtalmy, double vision, redness, itchiness, you name it) cold phase (swelling and double vision reduction, normalization of adiacent tissues) and correction measures (orbit decompression for one eye)

I do have a perfectly normal appearance and QoL

I think the best bet on short term might be corticosteroid rich IVs to keep swelling and inflammation under control, at least that was the approach of my Endo specialized ophthalmologist.

On the long term the best you could do is balance the thyroid hormones level.

By the sound of it and benchmarked to my own experience your GO progress is really slow and calm. Mine was far worse, after one week ten days when it started I definitely couldnt say "might be GO" - I was f..d!

There are other support and avoid measures you could take.

- selenium, 200mcg/day (maybe double that for the first week)

- avoid seafood and high iodine food. I would add sun exposure, but that's only a personal thing - my GO visited me while I was in a holiday, lying in the lovely Spanish sun and feasting on high amounts of delicious seafood. That tipped me over but, of course, I was not aware at that point.

Don't be scared, it's manageable and usually not as scary as it sounds.

[WestBurrafirth in reply to Caesard]

Thank you for this. I have been taking Selenium 200mg - just reached over and taken another after reading your suggestion! I do avoid the sun. Am experiencing the heat phase and always wanting to turn down the central heating! (haven't had the cold phase and quite looking forward to it!). Have noticed my upper eye lids are looking a bit swollen. Yes maybe I will have to go the corticosteroid way although don't like taking these. But have to wait for an appointment... my doctor is trying to arrange an ophthalmologist appointment ASAP. Cheers for your suggestons.

[Caesard in reply to WestBurrafirth]

Correct, follow the lead of the specialist on that. The dexamethasone quantity they pour into you is huge, that's true...but it works. I remember that the nurse installing the IV was calling me for the dexa shower :))

Like you, I was horrified on the thought of putting that much corticosteroid in my system.

Hot and cold phases, when it comes to GO, are describing the active and dormant phases of the TED.

Hot flushes that you experience are most likely Graves induced. Jeez....I remember having to take 15 minutes after going up 3 floors talking the stairs.

Please remember, no matter how horrifying looks now, there is (good) life after Graves, even after Graves and GO/TED.

And seriously, your active phase progress is quite mild. That usually indicates a speedy and complete recovery.

[asiatic]

As a Graves/ted sufferer I agree with what Caesars has posted. I would just add that I understand your concern about driving. My appts.with opthalmologist included tests with an orthoptist who fitted a stick on prism lens for double vision allowing me to keep my driver's licence. It was changed regularly. My eyes are now in recovery phase but still have double vision though it is much improved and when I have 2 consecutive readings I could have prisms built into my glasses. Regarding steroid infusions you need to discuss the balance of risk with your opthalmologist as with all drugs there can be side effects. I was offered steroids when my eyes deteriorated quite badly but refused. For me it was the right decision as a month later my eyes entered the plateau phase. It is also important for TED that you do not become hypothyroid. It is a horrible disease but will burn itself out. Hope you don't have to wait too long for appointment !

[WestBurrafirth in reply to asiatic]

Thank you for this. I have recently had a eye test at my local optician who was pretty thorough, and have now ordered a pair of glasses that have prisms and which he says will stop the double vision, although I am aware that my eyes might change again, but I'm desperate to be able to continue driving, given I live in places that are not served by buses and also spend some of my time living in a remote area. As an artist I really really need to use my eyes, or that's my life gone! Seem to have hospital appointments in April to see ophthalmologist and another in May to see a orthoptist, although I don't know what the difference is!

[asiatic in reply to WestBurrafirth]

I had never heard of an orthoptist either but have become very grateful for her expertise over the last 3 years.

I do not wish to alarm you as your TED appears mild but she has had to change my adhesive prism about 8 times as my double vision first worsened then improved. She also checked my colour vision as it can change if the there is pressure on the optic nerve. I am surprised you are having to wait so long. It is important you are checked soon so that any preventative steps can be taken. If you feel your eyes are worsening don't hesitate to ask to be seen sooner.

[WestBurrafirth in reply to asiatic]

Thank you for the warning. I'm afraid waiting is the game with an underfunded NHS! The ophthalmologist appointment is now April 15th so maybe they can also help with the double vision.. Just been googling the difference between the two and it seems that Orthoptists work closely with ophthalmologists to ensure that patients with eye muscle disorders are exposed to a full range of treatment options... hmm.

[asiatic in reply to WestBurrafirth]

Ideally you would be seen at a centre where the endocrinologist, opthalmologist and orthoptist are all working together but as you point out this is the NHS ! I attend a centre where the latter 2 see me at the same appt. and my care was excellent. The weak link was the endo , a diabetes specialist who said as I had Graves I couldn't be hypo and didn't communicate with the eye specialist who warned that my going hypo could be worsening my eyes. Be as proactive as you can. Post your blood results and symptoms to ensure your Graves is being correctly treated and monitored to give your eyes the best chance to heal