Thyroid Eye Disease
MmmDrop
Posts: 160 Member
I am one of those really unlucky people who have both Graves Disease & Hashimoto's. At the Beginning of my thyroid journey, I was extremely Hyper because of Graves, and then went the polar opposite into Hypo land because of Hashi's. I developed a goiter, and my eyes started acting up really bad. I would get some of the most excruciating headaches, and would have to hold icepacks on my eyes to try to alleviate some of the pain.
My doctor at the time, decided it would be better to have my thyroid removed. Radioactive iodine treatment wasn't an option, because it has the potential to make Thyroid Eye Disease even worse. After my thyroidectomy, the TED symptoms and the slight bulging went away.
A year later, TED is back. But this time its so bad that its causing me to go blind in my left eye. The optic nerve is being strangled by the surrounding muscles. The opthamologist I saw told me to quit smoking, that smoking has a tendency to worsen TED. 2 weeks on Chantix to get over the withdrawls and the looming threat of going blind was enough for me to kick that habit. Its now been over 3 months.
Tomorrow I'm driving 3 hours away to see a world renowned Opthamologist who specializes in Oculoplastic Surgery. The only way to fix my bug eye, and give my optic nerve more room is to have an orbital decompression. Wish me luck.
The moral of the story is this: Smoking isn't just bad for your lungs and smells nasty - it can seriously cause some major damage especially if you are already prone to thyroid diseases. So quit. Now.
My doctor at the time, decided it would be better to have my thyroid removed. Radioactive iodine treatment wasn't an option, because it has the potential to make Thyroid Eye Disease even worse. After my thyroidectomy, the TED symptoms and the slight bulging went away.
A year later, TED is back. But this time its so bad that its causing me to go blind in my left eye. The optic nerve is being strangled by the surrounding muscles. The opthamologist I saw told me to quit smoking, that smoking has a tendency to worsen TED. 2 weeks on Chantix to get over the withdrawls and the looming threat of going blind was enough for me to kick that habit. Its now been over 3 months.
Tomorrow I'm driving 3 hours away to see a world renowned Opthamologist who specializes in Oculoplastic Surgery. The only way to fix my bug eye, and give my optic nerve more room is to have an orbital decompression. Wish me luck.
The moral of the story is this: Smoking isn't just bad for your lungs and smells nasty - it can seriously cause some major damage especially if you are already prone to thyroid diseases. So quit. Now.
0
Replies
-
So sorry, MmmDrop! I am waiting for blood test to come back to tell me if I now have Graves ... I already have Hashimoto. I have been having headaches and about 10 days ago my eyesight started to weaken - significantly enough that I had to buy reading glasses... it happened during one of the worst headaches and my vision did not come back after the headache was gone. It was so bad, it actually made me vomit. Now I am having both headaches and occasional vertigo. The headaches drive up my blood pressure too -- do you know if your BP goes up when you have these headaches?
I quit smoking 10 years ago - so that part is ok. I
I am praying that the world renowned Opthamologist has the answers and relief that you need!
Terri0 -
I wish you the best. You seem to be doing all of the right things and making all of the good choices for yourself.0
-
Thanks!
No idea about the BP... but when I would get the headaches, they were absolutely incapacitating. Could not do anything, but lay in bed. It also caused my eyes to be really gritty and dry all the time. Couldn't wear contacts anymore because of it, and I definitely have to wear sunglasses outside during the day, because TED causes really bad sensitivity to light.0 -
I can only imagine how much of a roller coaster Graves and Hashis would be at the same time! Wow.
I am lucky that my levels are stable and I am at a point where I can stay on the same dosage for a year and be fine. This puts things into perspective.
Can you tell me more about the eye thing? I have never heard of that before.
My mom is hypo too and she smokes. I wish I could convince her to stop, but she never will.0 -
Wow.... that sounds similar to the symptoms I had a couple years ago when I had migraine problems! Hmm... I bet that was related.0
-
Mmmdrop will say a prayer and send healing thoughts your way.0
-
Mmmdrop, I will pray for you and for your doctor to have all your answers. God Bless You.
Ginny0 -
That is quite scary! My mum lost the sight in her left eye but not due to thyroid problems. I hope your surgeon can sort this out for you :flowerforyou:0
-
Saying a prayer here too, good luck ((hugs))0
-
So sorry, MmmDrop! I am waiting for blood test to come back to tell me if I now have Graves ... I already have Hashimoto. I have been having headaches and about 10 days ago my eyesight started to weaken - significantly enough that I had to buy reading glasses... it happened during one of the worst headaches and my vision did not come back after the headache was gone. It was so bad, it actually made me vomit. Now I am having both headaches and occasional vertigo. The headaches drive up my blood pressure too -- do you know if your BP goes up when you have these headaches?
I quit smoking 10 years ago - so that part is ok. I
I am praying that the world renowned Opthamologist has the answers and relief that you need!
Terri
I am an Audiologist who specalizes in Vestibular/Vertigo. Definitely get a full vestib eval if the vertigo continues. Thyroid disease and history of any type of migrane is linked to acute neurtis of the vestibular organs of the inner ear. It is just best to get things/changes documented! Best of luck!0 -
Be sure and come back and tell us how the appointment goes!0
-
Can you tell me more about the eye thing? I have never heard of that before.
Basically, people with Graves Disease have a 1 in 90 chance for the disease to effect their eyes in some way. For some reason, the antibodies start attacking them, causing inflammation in the tissues and muscles around the eye which can in turn make the eye bulge out. Smoking can cause the inflammation to flare up.
The specialist I saw yesterday was the second one I've seen. The first specialist was just way too gung-ho about wanting to do surgery, and seemed to want to talk about money more than he seemed to care about really helping me and it really creeped me out.
Yesterday's appointment went fabulously!!! The doctor I saw at UNC told me that there is no clinical proof that there has been any ocular nerve damage (thank god!!!), and an orbital decompression surgery wouldn't be worth the risk since he said my TED is very mild. He does want me to see another specialist who can help with my double vision, and after that's all done, I'll go back to him to have lid retraction surgery which will correct the "bug eye" look.
So I'm pretty elated that I decided to see a different doctor. The first one tried to scare the bejesus out of me so I would elect to have a bunch of unnecessary risky surgeries. Yay!!! I'm not going blind!!!!0 -
Great to hear it went well! Thanks for sharing!0
This discussion has been closed.