Anyone else have thyroid eye disease - mine has recurred and I'm so fed up

[BirdyBedtime]

I have a long history of Graves that was diagnosed 7 years ago. Have been on carbimazole on and off and have also had a baby in that time. I was taken off carbimazole in autumn of 2011 and then had a recurrence, which was accompanied by eye disease for the first time. I ended up having 12 weeks of steroids in the spring and my eyes had calmed down to the point that I'd been referred for corrective surgery.

All this time I've been on 5mg carbimazole but at my last appt the consultant said my levels have stablised and are looking normal, so decided to take me off it. In the 4 weeks since my eye symptoms have started to flare up again and so I've managed to arrange to see the eye consultant on Thursday, and am fully expecting her to recommend another course of steroids which is pretty horrible to go through and has an impact on work and family life.

I am just so fed up - I didn't ever mind the Graves once it was under control and didn't have any problems taking daily carbimazole, but the eye disease is a different matter. They water frequently and badly at night, and I have to use gel at night, I'm overly sensitive to light, my left eye is very obviously 'starey' and wider than the other, my vision is disturbed by restricted eye movement and blurring when they are dry, and I hate looking at myself or talking to people as I hate making eye contact.

I'm beginning to wonder if I should start asking about having my thyroid removed although I don't know if this would impact on the eye problems. If anyone else is suffering similarly please post as sometimes I feel like I've got a condition that no-one else really understands.

Hi

I'm not a sufferer but my dh is. It came on really rapidly this time last year and he was on 20mg carbonmazole which he's slowly cutting down now. Sorry I don't have much to say as he hasn't developed eye disease but has had bulging and dry eyes.

It's a horrible disease. I hope everything goes ok at the specialist.

Thanks for your support Mrs K - it is horrible. There was thyroid thread on here a while back that was overwhelming people with hypothyroidism which obviously has very different symptoms and management. There must be a very small number of MNers who are hyperthyroid from what I read.

I had Graves as well and while I luckily did not develop the eye condition, I would recommend that you discuss the surgery with your doc. Had my thyroid out and even though my Graves was under control and levels normal, I still feel miles better now. In many cases yes, thyroidectomy should improve the eye problem.
there are studies on PubMed, like
www.ncbi.nlm.nih.gov/pubmed/6548857
www.ncbi.nlm.nih.gov/pubmed/11952051

Thanks HazelNutt I'll have a look at those studies. My previous consultant who I saw for years and was a national expert on Thyroid disease advised me before he retired only to ever consider surgery as a last resort as it is difficult to get the right amount out and you usually end up on thyroxine, or if they don't remove enough still having symptoms. Saying that I do feel like I might be reaching the last resort. Off to see the eye consultant this afternoon so we'll see what she says but I'm expecting another course of steroids

All the latest studies I have read say that you need to take it all out, in case of partial thyroidectomy you will most likely continue to have both Graves (as there is still thyroid tissue present for your autoimmune condition to attack) and eye issues. Very low recurrence rate in case of total thyroidectomy (only in case they are unable to get all the tissue out).
www.ncbi.nlm.nih.gov/pubmed/21345453
www.ncbi.nlm.nih.gov/pubmed/20033406

Yes, surgery is of course permanent, so not a decision to take lightly. I read a lot about it and for me the deciding factor was that even if you get the condition under control (not guaranteed), recurrence rate is very high, 40-60%, some studies have found even 70% www.ncbi.nlm.nih.gov/pubmed/16916174 or over 80% in case you get pregnant. Apparently also the chances are higher in case of eye condition:
www.ncbi.nlm.nih.gov/pubmed/17880407

Yes, in case of total thyreidecomy you will be on thyroxine for the rest of your life.

Well, surprisingly the consultant didn't think the disease looks particularly active so that was good news. Just waiting for referral to surgeon to come through. Hopefully some light at the end of the tunnel as all I really want is to look semi-normal again.

Hi Birdy - fellow Graves sufferer here.

My eyes were causing me quite a bit of bother while I was on carbimazole, I had Radioactive iodine treatment in Dec. last year, which made me underactive so am now on thyroxine. I would say the eyes have settled since my treatment - they don't water nearly as much, and i only need to use lacrilube occasionally for scratchiness. My right eye is still much more prominent than my left though, - I think I may be stuck with that, but I would say my eyes are less starey since treatment.

loads of sympathy, thyroid problems are horrible

Given the sensitivity to light, has your specialist checked for things like iritis? It can be a symtom of sarcoidosis, another auto-immune condition.

It's just that once you have one auto-immune disorder, you are at a higher risk of another. Also, a possibly little-known side effect of long term/high dose steroid use is cataracts. (DH has sarcoidosis, and has developed cataracts after treatment for iritis and choroiditis.)

Hi has anyone had thyroid eye disease and cured or helped it with a anything other than steroids? Selenium etc...