Anyone out there suffer from this? Other than me? I tried posting on the Diabetes Forum and I didn't get any takers there... So apparently I was barking up the wrong tree on that one... Anyways - if you have this or know of someone that does, will you please respond, I have some questions... Thanks! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
What exactly is it? How does it affect your eyes?
**
Hey CaMama -
You ready? Here goes:
Grave's disease, is also known as thyroid eye disease or thyroid orbitopathy, is the most common cause of proptosis (protruding eye) in adults. Women are affected nine times more often than men are.... Lucky me! 
Most patients present with symptoms between 20 and 45 years of age... (I'm 32.. hhhmmmm) 
One or both eyes may be proptotic (protruding) and the eyelids retracted, creating a staring appearance. The upper eyelids tend to lag behind the eye as the patient looks down. Because of the greater exposure of the eye, dry eye symptoms (e.g., burning, stinging, etc.) may be present. There is often redness of the eyes and swelling of the ocular surface (conjunctiva). Because the eye extraocular muscles enlarge in this condition, double vision may occur due to limited motility of the eye. Also, because there is inflammation of orbital (eye socket) fat and enlargement of the eye muscles, there may be compression of the optic nerve resulting in optic neuropathy. This latter condition may lead to permanent visual loss. This condition, which may occur weeks or months after treatment is completed, is very similar to diabetic retinopathy. Surgical procedures such as orbital decompression (to decrease proptosis) and strabismus surgery (to realign the eyes) are usually reserved until the disease is quiescent, typically 3 to 5 years after onset. 
I've had this since I was first diagnosied with Graves in 1998. I've also got a "moon face" and "buffalo hump" due to taking heavy doses of Prednisone for a long period of time.
My eyes constantly hurt, I get awful headaches and they are always dry and itchy... I've had 2 eyelid surgeries (blepharoplasty) and it doesn't help. Plus I just want to look normal again...
So there you have it.. 
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Bless You is right! Wow, Ducky. I cannot believe this situation you have been going through. Does this eye problem happen when the disease is uncontrolled or is it roulette based on the seriousness of the disease.
I thought the 'moon face' was a result of the disease, not the steroids.
My thoughts are with you praying that you find relief and solutions soon.
**
The eye disease goes hand in hand with the Grave's... kinda like Psoriasis and Psoriatic Arthritis... Once you get Grave's, your chances of getting the eye disease goes up... lucky me huh? And I got them both! Woo-hoo! 
Nope, moon-face is one of the wonderful side effects of taken prednisone... Of course I was told that I wouldn't get it since I wasn't on it for very long... (May - Sep) however, I was on a VERY high does 6 times a day... so again, 'cause I'm soooooo fortunate, I got the moon face and buffalo hump... once I get the nerve up, I'm gonna make some plastic surgeon a very rich man! 
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
hi Ducky - I am new here. In September, my thyroid increased suddenly. Now, 3 months later, I am confirmed to have Grave's. One eye just started to feel funny, as if there's inflammation around it. Anyways, was looking for someone to talk to, too. Why is it under arthritis topic???
My son is 10 months old so they were differentiating from postpartum thyroditis, just thyroditis, etc. I didn't have a lot of signs - just rapid heartbeat and slight hand tremors. Anyways, as soon as I learned that I have Grave's for sure, I agreed for RAI (radioactive iodine treatment), now waiting for a call to go there. I've been taking only PTU for these three months, with a brief time of beta blocker at the beginning.
Are you saying that after complete thyrodectomy you still have Grave's??? Did your eyes get worse after it?? Aren't you supposed to become hypoactive after removing thyroid?
Sorry for so many questions - I'd be happy to answer yours, too.
My stats: 41y.o., son 10 mo.old, daughter 2 1/2 y.o. I'm a bit at loss as there seems to be not much western medicine can do here. Have you heard about successfull plastic operations for ophtalmopathy?
Big hug -
inkpen
PS: What is buffalo hump?
My son is 10 months old so they were differentiating from postpartum thyroditis, just thyroditis, etc. I didn't have a lot of signs - just rapid heartbeat and slight hand tremors. Anyways, as soon as I learned that I have Grave's for sure, I agreed for RAI (radioactive iodine treatment), now waiting for a call to go there. I've been taking only PTU for these three months, with a brief time of beta blocker at the beginning.
Are you saying that after complete thyrodectomy you still have Grave's??? Did your eyes get worse after it?? Aren't you supposed to become hypoactive after removing thyroid?
Sorry for so many questions - I'd be happy to answer yours, too.
My stats: 41y.o., son 10 mo.old, daughter 2 1/2 y.o. I'm a bit at loss as there seems to be not much western medicine can do here. Have you heard about successfull plastic operations for ophtalmopathy?
Big hug -
inkpen
PS: What is buffalo hump?
Hey Inkpen -Let me start off by saying, WELCOME TO HEALING WELL! You've got a lot of questions, let me try and answer them in order:
1. ...Anyways, was looking for someone to talk to, too. Why is it under arthritis topic???
A. The Graves was the onset of all my other Auto-Immune issues. There isn't a Thyroid Disorders Topic on this website and I asked some of the other members where I should pose this question. I tried the diabetes Forum since it is part of the Endocine System, but I got no replies. So I went ahead and posted it here since this is where I normally post all my other issues...
2. Are you saying that after complete thyrodectomy you still have Grave's???
A. I now have Grave's Eye Disease. I got this exerpt off of an eye conditions website: Grave's disease is an autoimmune disease, which involves both orbital tissues and the thyroid gland. It is not caused by an overactive thyroid gland. Immune cells "attack" both the eye muscles and the thyroid, leading to dysfunction of both. In fact, although most patients with Grave's disease have an overactive thyroid, patients with normal and even sub-normal thyroid function may also have Grave's disease. It is also important to realize that destructive procedures of the thyroid (e.g., radioactive iodine), and even surgical removal of the thyroid, does not alter the course of the orbital (eye) disease. Interestingly, smoking is associated with a more prolonged and severe course of Grave's disease.
3. Did your eyes get worse after it?
A. Yes. Removal of your thyroid cures the problem of having an overactive thyroid, however, the disease still remains in your eyes.
4. Aren't you supposed to become hypoactive after removing thyroid?
A. Sometimes yes, it depends on how much of the synthetic hormone replacement you are on. I am on .175mcg daily. But it has taken me 7 years to find my happy medium. I have run the gamut of having too much and too little... Too much makes me jittery and I can't sleep... too little, and I sleep all the time and my hair falls out... Nice huh?
5. Have you heard about successfull plastic operations for ophtalmopathy?
A. Yes, there is Orbital Decompression. However, I hear it is a very painful recovery, but it has a very high success rate. I am awaiting consultation from an Opthamalogist to see if I would be a good candidate for this surgery or not.
6. What is Buffalo Hump?
A. The Buffalo Hump is an accumulation of fat on the back of the neck and upper back. This condition can occur with oversecretion of cortisone by the adrenal gland, a condition called Cushing's Syndrome. A buffalo hump by itself is not diagnostic of any one condition. It must be considered in light of other signs, symptoms, and tests. Common causes: extended use of some steroids (glucocorticoids such as prednisone, cortisone, and hydrocortisone). I was on Prednisone.
Whew... 
sorry about that... I wanted to make sure I answered all your questions. I never noticed my eyes feeling different, but I could see the difference. They started bulging and at night when I would sleep, my eyelids weren't able to cover my whole eye due to the bulge, so my eyes would dry out. 
I've had 2 eyelid surgeries, but I still don't look normal. That is why I am opting for the Orbital Decompression. But I don't know if this is something that I'll have to do in another 5 or 10 years, since the I'll still have the disease in my eyes, know what I mean? So I am patiently awaiting my consultation to hopefully clear up any more questions I have.
sorry about that... I wanted to make sure I answered all your questions. I never noticed my eyes feeling different, but I could see the difference. They started bulging and at night when I would sleep, my eyelids weren't able to cover my whole eye due to the bulge, so my eyes would dry out. I've had 2 eyelid surgeries, but I still don't look normal. That is why I am opting for the Orbital Decompression. But I don't know if this is something that I'll have to do in another 5 or 10 years, since the I'll still have the disease in my eyes, know what I mean? So I am patiently awaiting my consultation to hopefully clear up any more questions I have. If you have any more questions, please let me know. I wish you the best of luck and hope to see you around here more often! Take care - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Thnk you so much Ducky for your patience in answering the questions. My heart goes out to you! Have you seen the Thyroid disorder's forum at http://www.medhelp.org/forums/Thyroid/wwwboard.html Many of the people there have had their thyroids removed - maybe some will know about your problem.
I definitely feel something going on in my eye, when I look in the mirror I see that there is a slight change. Reading that RAI may cause worsening of the eyes I came across Yahoo group that are opposed to any radical treatment (lead by Dr Elaine Moore), advocating gentle changes in your lifestyle instead. I'm scheduled for RAI Dec. 13, so have to decide in the meantime if I want to go through it.
One more question - you said you hade the surgery when you were 11 weeks pregnant - was the baby born OK? Have you been pregnant since?
Thank you!
I definitely feel something going on in my eye, when I look in the mirror I see that there is a slight change. Reading that RAI may cause worsening of the eyes I came across Yahoo group that are opposed to any radical treatment (lead by Dr Elaine Moore), advocating gentle changes in your lifestyle instead. I'm scheduled for RAI Dec. 13, so have to decide in the meantime if I want to go through it.
One more question - you said you hade the surgery when you were 11 weeks pregnant - was the baby born OK? Have you been pregnant since?
Thank you!
Hey Inkpen -
Glad you found my post informative. No I haven't been to that forum, but will check it out, thanks. I haven't heard that the RAI was bad for you, I just knew I couldn't take it since I was pregnant. My son was born just fine. The doctors didn't think that he would make it due to the heavy doses of all the meds I was on, since they were aggressively treating my thyroid, but he hung in there. He only had a 15% chance of survival during the surgery and the surgery was only supposed to take 3 hours, but ended up taking 7. They were going to do a partial thyroidectomy, but once they got in there, they decided to take it all.
I have not been pregnant since. Pregnancies are very hard on me... Each pregnancy I've had, I've been high risk due to pre-term labor and some other issues... My OB/GYN said after the birth of my son that if I got pregnant again, it would kill me...My son's pregnancy almost did, but I refused to medically abort like they wanted. I figured if God had intended for me to loose this child, then I would miscarry, but they weren't gonna take him from me.
Have you been seen by an Opthamalogist? If not, I would recommend one, just to check you out now and get a baseline started, that way if you did develop the Eye Disease, they can chart it and figure out what the best plan of attack would be. I didn't get told that I was to be seen regularly by an Opthamalogist until last year, ridiculous huh?
Good luck to you, and please let me know your progress... - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
What an amazing story, just a miracle. Wow! It's so great you haven't aborted. Sometimes it pays to listen to your gut rather than be pressured into something.
Yes I think a consultation with an aphtalmologist would be the best bet for you, and I will talk about it with my GP tomorrow. How do you know if the disease is still in your eyes, and how would you know if the desease has left your eyes? I would very like to hear how it went with you and the ophtalmologist and what he said.
There is a wonderfully sarcastic website Atomic Women who have underwent RAI (search Atomic Women on google) and try to tell their side. I've been bumping into all kinds of opinions on RAI on the Internet, in the end it's your choice.
What I learned - and what nobody discussed with me - is that if there is something hapenning with your eyes then steroid administered together with RAI would help the eyes not to get worse after radiation. Now I have to make sure that my doctor is aware of that etc... Doctors probably curse the Internet invention
Be strong,
inkpen
Yes I think a consultation with an aphtalmologist would be the best bet for you, and I will talk about it with my GP tomorrow. How do you know if the disease is still in your eyes, and how would you know if the desease has left your eyes? I would very like to hear how it went with you and the ophtalmologist and what he said.
There is a wonderfully sarcastic website Atomic Women who have underwent RAI (search Atomic Women on google) and try to tell their side. I've been bumping into all kinds of opinions on RAI on the Internet, in the end it's your choice.
What I learned - and what nobody discussed with me - is that if there is something hapenning with your eyes then steroid administered together with RAI would help the eyes not to get worse after radiation. Now I have to make sure that my doctor is aware of that etc... Doctors probably curse the Internet invention
Be strong,
inkpen
Doctor's probably do curse the internet, can't say that I'd blame them if I was in their shoes, however, I know it has made me smarter about all my illnesses than any of my doctors have!
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Ducky - these are pictures of a person before and after eye surgery - looks good!
http://photos.groups.yahoo.com/group/graves_support/lst
go to Gale-g7890
http://photos.groups.yahoo.com/group/graves_support/lst
go to Gale-g7890
Thanks inkpen! :)
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Sorry to bombard you with links - but this is amazing! Look what decompression surgery did to this woman! It's a godsend:
http://hometown.aol.com/lisareynolds64/myhomepage/personal.html
http://hometown.aol.com/lisareynolds64/myhomepage/personal.html
Thanks Inkpen, don't be sorry, I'm glad you've sent me the links... those pics are amazing... I really need to get in to see an Opthamalogist! Thanks again! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots