Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hi all,
New here. I was recently dx'ed with blepharospasms. I had them for over 5 years but my regular optho always dismissed them as my eyelids just being tired in the AM. Maybe because the only time they stayed shut was right after I would wake up.
Well for the past 3 months they have gotten so bad that they will often stay shut up to 5 hours, making it impossible for me to take the kids to school, and then just literally sitting around blind.They are also shutting during other times of the day or night ad well.
I also have dry eye, occasional double vision and this problem where my eyes themselves will jiggle around in the sockeye.My regular optho sent new too a specialist. He dx'ed me right away edith blepharospasms and said we would try a confine conservative approach first using drops 4 x daily and A gel at night. He mentioned surgery but I'm not sure what they could mean? Any ideas?
He is also very concerned about Graves due to some symptoms I have which I thought might be MS. I have to get blood tests done for 4 current types of thyroid tests that he ordered STAT. He also measured my eyes and the good one is a 4 and my trouble one..left is A 6, I know when I close my eyes the left feels like it is sticking out more and is much more firmer than the softer right eye. In the past I had hyper and took meds for 6 months for it, then some years later I developed hypo and they put me on meds for that supposedly for life. We'll I quit taking them by accident and ever since then when I tell them this they just get me 3 of the thyroid tests and say they are fine for and that is know the end of it..what do youguys think? I'm nervous about A thrush thyroidectomy but I have bipolar and it seems the best options for crazies like me.. Are they scary? Do you have yo start in the hospital long, thanks for go
Theanswers friends...Irish
friends !
....Irish
New here. I was recently dx'ed with blepharospasms. I had them for over 5 years but my regular optho always dismissed them as my eyelids just being tired in the AM. Maybe because the only time they stayed shut was right after I would wake up.
Well for the past 3 months they have gotten so bad that they will often stay shut up to 5 hours, making it impossible for me to take the kids to school, and then just literally sitting around blind.They are also shutting during other times of the day or night ad well.
I also have dry eye, occasional double vision and this problem where my eyes themselves will jiggle around in the sockeye.My regular optho sent new too a specialist. He dx'ed me right away edith blepharospasms and said we would try a confine conservative approach first using drops 4 x daily and A gel at night. He mentioned surgery but I'm not sure what they could mean? Any ideas?
He is also very concerned about Graves due to some symptoms I have which I thought might be MS. I have to get blood tests done for 4 current types of thyroid tests that he ordered STAT. He also measured my eyes and the good one is a 4 and my trouble one..left is A 6, I know when I close my eyes the left feels like it is sticking out more and is much more firmer than the softer right eye. In the past I had hyper and took meds for 6 months for it, then some years later I developed hypo and they put me on meds for that supposedly for life. We'll I quit taking them by accident and ever since then when I tell them this they just get me 3 of the thyroid tests and say they are fine for and that is know the end of it..what do youguys think? I'm nervous about A thrush thyroidectomy but I have bipolar and it seems the best options for crazies like me.. Are they scary? Do you have yo start in the hospital long, thanks for go
Theanswers friends...Irish
friends !
....Irish
You should make sure to use the eye drops and the gel at night (I use Refresh gel, it's like a big gob of goop right on your eyeball and you can't see anything) and that will help you avoid any issues with infection and complications with your eyesight.
As an aside, I don't know if they told you this but your bi-polar disorder may be linked to your Graves' Disease. It causes a lot of mental issues which is why this disease was discovered in an insane asylum. :)
Thank you so much for your answer. I find out my thyroid test results tomorrow. My eye doc ordered the tests so I will hopefully find out what my particular treatment should be.
It is really so sad to know about the bipolar being associated with Graves. You see I was dxed with bipolar in 2000, just 6 months after the birth of my second son and last child. I wanted more children but my husband said no because of the bipolar and the unpredictability with it. He said it would be hard to raise the two we already had. He was right. I was drugged for 5 years before I was considered almost stable. It is now 12 years later and my pdoc says I am still not completely stable. I am an educated 46 yo woman who will probably never work again due to the large amounts of drugs and their permanent effects on my brain.
I feel so angry at all my docs over the years!! Why could they not have caught this thyroid problem??? I probably had hyper as a little girl. People would make fun of me because of my really big eyes. I was so very skinny and no matter how much I ate I would never gain, it was actually a real struggle not to lose more weight. I graduated from high school at 5'2" and weighed 87 pounds. Of course this was before anorexia days. My mom may have had it also cuz she had the very same issues. Oh I could hate those doctors if I were not a Christian.
Well all I can do now is hope that I may be able to get rid of some of my sensitivity. I suppose that would be a good thing. Thank you once again for telling me this. I hope that everything continues to work out good for you. God bless you!.........Tamye
{{{hugs}}}
Thanks for your reply and concern. Test results were in yesterday and were completely normal. Opth doc checked my tear amount on each eye and I had below one on the right and none on the left. He said my eyes were not making tears at all. Severe dry eye/Dry eye Syndrome. He put silicone plugs in my lower eye ducts and I have to have the uppers done in two weeks.
I am in great pain today. I have been using this new drops called Blink cuz it is a lube gel, not just liquid drops. This stuff its like what it must feel like to Heaven for eye sufferers. Its like giving toot eyes a long silky soak in the most expensive spa bath. But then less than an hoot later and my teeth are gritting in pain again. I have been using them all day, who cares about the 4 times a day business right now. I called his office and hes at a clinic out of town. They said I could go see him or make an apptfor tomorrow..going out of town tomorrowso I can't go see him cuz my vision has become very blurry. This is new also because its been all day long. It hurts so bad my blood pressure is up and I can't get it down. This is really scaring me...breaking through the numbness I usually carry around about my health.
He did tell me I should see an endocrinologist. I don't really understand it but he said you can still have Graves even with a normal thyroid test. I am pretty sure he did do the free T_3 and Free T 4.he did four thyroid tests. He says my left eye protrudes slightly more than right and my eyes are not in allignment. Plus as he said I do have all the other symptoms of th Rtyroid disease. Not to mention that I was dxed with hyper in my early twenties, took pills for half a year and I was tested again and they said I was fine and took me off the pills. Then ten years later I'm tested positive for hypo and put on pills for life. Two months before an appt I forgot to get pills and didn't take them for that long. They re tested and tests were normal...I was not put back on pills. My mom, aunts and grandma were taking thyroid meds all in their early twenties.
Would you know any thing about how some one can test negative on thyroid tests and yet still have Graves? Have you ever heard of this before? What about these miserable eye plugs I'm stuck with? Is it normal to ne in A lot of pain right after the procedure? I just don't know what to do anymore. I feel lost, alone and really scared for the first time. I'm still trying to deal with the MS issues and getting a dx for that. That has been a five year battle so far. I think I'm just tired. If you can help in any way possible with info I would greatly appreciate it. You look like such an honest and caring woman and I could really need a friend right now. Thank you and God bless you...Tame
{{{hugs}}} to you...! :-) Everything will be alright, one way or another. Take one day at a time, I do, with my own autoimmune diseases issues.
Yes, one can get TED and not have a thyroid problem. How are your thyroid antibodies doing?
You might want to research articles by our thyroid expert Elaine Moore at: www.elaine-moore.com.
Here are some links of TED articles by Elaine:
http://elaine-moore.com/Articles/GravesOphthalmopathy/ThyroidEyeDisease/tabid/63/Default.aspx
http://elaine-moore.com/Articles/GravesOphthalmopathy/UnderstandingGravesOphthalmopathy/tabid/187/Default.aspx
http://elaine-moore.com/Articles/GravesOphthalmopathy/EuthyroidGravesDisease/tabid/224/Default.aspx
A list of some of Elaine's articles:
http://elaine-moore.com/Articles/ListofArticles/tabid/278/Default.aspx
{{{hugs}}}
I copied and pasted your reply so that I can read each link you sent to me. I enjoy doing research as I feel the more informed I am the better decisions I can make concerning treatment and doctors. Thanks again, your a great person!!!!
With love,
Tamye