It’s so hard to find anything helpful on the thyroid eye disease, or “Graves ophthalmology”. It’s all so individual and basically all I know is that it should clear up in a few months to a few years. Wonderful. I’ve had the eye disease since January 27, 2010. It seems to get worse when my symptoms for high thyroid also flare up. My doctor tells me that the two diseases are only loosely correlated and may not run in sync, but in my personal experience, they seem highly related.
I’ve been told not to take extra PTU, but it seems to make me a) feel better and b) helps my eyes. How am I supposed to suffer when I know that makes me feel better? Call me obstinate, but I think I know my body better than someone who’s met me once (I switched doctors recently, although they both said don’t mess with my PTU dosage). I think they say that because PTU takes a while to take full effect, but it does also have short half-life, meaning it’s out of my system within 12 hours, so I feel relatively safe self-medicating. If you’re a doctor and can convince me otherwise, please say so.
My eyes flared up again this week – haven’t been this bad in months (well, I got it in January) – extra puffy and extra photo-sensitive. I wake up and they feel swollen. Today, I finally got some relief – a little less puffy and sensitive by the evening after about 7 days of them being worse than usual. The only solace is knowing that once it’s gone, it should be gone forever. Probably about a year left of symptoms. Nice. I will post a photo one of these days. Not bulgy, but horrible bags.
Two things happened that could explain the eyes, possibly.
- I got called into do an Emergency Supply teaching job. My first ever teaching job (I switched careers recently, which could have contributed to the onset of Graves). I got called at 8:30 am for a 9:05 am start and at the time my daughter was naked on the coffee table and I needed to get her to daycare first. Happy to say that it went well, although I did feel stressed when I got home like I had had a thyroid spike.
- I went up to the cottage for the long weekend with my family, including my Aunt who is a heavy smoker. While she didn’t smoke inside, and while I spent a lot of time outdoors, she did smoke beside me outside and she has previously smoked in the cottage. Either way, after the 2 hour drive home and about 2 hours at home, my eyes were feeling better.
I wish someone out there would tell me the progress of their thyroid eye disease. I would love to know:
- if there are any signs that it’s going away,
- if the bags will go away when the disease leaves. I seem to have perma-bumps under my eyes that look like they could be fat deposits. I had read about pre-orbital fat deposits with graves ophthalmology or TED.
- if I will need to have blepharoplasty (surgical modification of the eyelid, upper and lower).
- if eye surgery is covered by OHIP (Ontario Health Insurance Plan)
May 31 update: I have been feeling movement behind my eyes again lately. They look a little worse, they feel a lot drier, it’s harder to look sideways and I get ticks/twinges/pulses in my eye every now and then. It’s not as bad as before, but its one step backward.
It looks like some places do it. Found these sites
- eyelid-doc.com/eyelid-doc/graves-disease.html (Great before and after picture)
- www.bopss.org/page.php?edi_id=534 (medical definition)
- livingwithgd.wordpress.com/2010/04/23/as-far-as-the-eyes-can-see/ (personal blog)
- www.beautifuleyes.com/graves.html
- www.eyeplastics.com/topics/thyroid/thyroid_disease_graves.htm
NOTE: My eyes got better after 1 year of constant puffiness and flare-ups – it just stopped. I have some remaining puffiness, particularly under my left eye, but they don’t flare up the way they used to! Good luck to all! |
i was diagnosed with hyperthyroid Dec. 2010, and right after i had grave’s disease. Droopy eyelid, lower lid retraction, bulging eyes.. name it! i couldn’t close my eyes properly because the lower lid retracted exposing the white part on my lower eyes. SO what happen is, that every time i wake up, my eyes were really dry and swollen because it lacks moisture. My doctor gave me salcoseryl gel to put every night inside my eyes to mositurize it and i also used eye mask. 2yrs after, my thyroid is stable and so is my grave’s disease.i am doing a upper & lower lid blepharoplasty on Dec. and i hope it will gain back my confidence and can start taking pictures. I hated taking pictures of myself for 2 yrs, because my appearance totally changed. it was frustrating! Now my eyes are good but still, i want to bring it back to normal. Shall update you after my surgery. 🙂
Have your eyes checked regularly. I have graves, have had Botox injections approx 15 to each eyelid – not pleasant, upper lid blephomaplasty and then finally triple orbital decompression. From what I remember my eyes started gritty and non producing of tears. As time progressed they became worse, constantly dry, itchy, painful and then started to bulge. I now have a couple of scars but mentally feel ugly and as if my eyes still protrude. My graves was not diagnosed until approx a year in and the vitiligo and 210 bpm of my heart kind of gave it away – for some reason everyone just thought I had large eyes. Prior to my triple op, sideways on my eyes protruded past my nose, after the op they have gone back approx .5 cm. I don’t want to scaremonger I just want this to not happen to anyone else so protect your eyes, get them checked and if unhappy persist!
Sorry hear your struggles. I got pregnant 1 month after getting Graves. I lost the pregnancy, but it had a moderating effect on the Graves. When I got the eye disease 5 months later (1 month after losing the pregnancy) it was mild, but still horrible. They felt awful – dry, tight and puffy. They were bad every day for a year, and then one morning they didn’t bother me anymore. A year later, they are almost back to normal, however, the lids have some residual puffiness. I remember hating myself during that year, and hearing “They don’t look THAT bad” was not very comforting. It was the worst part of Graves disease for sure. However, I am going into remission as we speak. I’m almost completely off the medication (PTU). I can’t believe it.
Wishing you a complete recovery, inside and out!
My hubby, 50 years old, just had the eye surgery for Graves Disease Bulging Eyes… Be Careful with those eyes!
He lost TOTAL vision in one eye and most vision in the other in ONLY 2 Months. On his 1st appointment with his eye doctor, Dr. Mawn, at Vanderbilt Medical in Nashville, TN, she kept him there for EMERGENCY Surgery.
CT scan showed his optical nerves were too crowded due to Graves Disease – eye muscles crowding.
Please, please get a CT Scan for your pease of mind. Remember, he went from seeing fine to blind in only 2 months.
NOTE: Within 5 hours of surgery, his vision was completely restored!
I am so happy to hear he regained his vision. Most people aren’t aware that the worst side effect of thyroid disease is blindness! Wishing him a speedy recovery and best of luck with this disease. It does get better!
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