[mdcomeau]

#1018365

I just stumbled upon this site last week, i’m finally coming in to say hi everyone today..

I started feeling not well in march. I was diagnosed with an over active thyroid in april. My eyes started to get a little swollen in may, I was diagnosed with graves disease in june, I’m 50 years old. I have had previous health problems for the past year and just now connecting everything together to graves disease maybe. My over active thyroid was very high in april, then became very low un july.. now its at a better level this month my family doc told me at my last appointment. my eyes are swollen and I have double vision, i do have a prism on my glasses that i just received in july that completely got rid of my double vision. I am finally seeing a thyroid and an eye specialist since july. i see this is going to be a long road.. and i’m scarred.. its my vision that scares me the most.. dianne

[Kimberly]

#1064275

Hi Dianne – Sorry to hear about your Graves’ diagnosis, but glad that you found us!

There is no question that dealing with eye issues is a very frustrating and very scary experience. ” title=”Sad” /> However, the good news is that there *is* light at the end of the tunnel. The worst of the eye disease usually runs its course in 2-3 years. Some patients will eventually see improvement of their symptoms at the end of this period. However, if you still have lingering issues, there are surgical procedures that can help with the double vision and the protrusion.

It sounds like you have an eye specialist that you trust, which is really important. For patients whose eye disease is actually threatening their vision, emergency decompression surgery can help preserve one’s vision. One thing to watch for is having issues viewing colors (i.e. something that you KNOW is red starts to look pink). If this happens, definitely get in to your eye doc ASAP for further evaluation.

There are posters here who also have thyroid eye disease, and are in various stages of treatment. Feel free to post any questions here…or just to vent if you need to!

[mdcomeau]

#1064276

Thank you very much Kimberly. It’s good to have a place like this. I’m glad to hear that there “is” light at the end of the tunnel.. that is very encouraging words.

I have many ups and downs.. I can get very discouraged at times, other times I’m not as bad, and sometimes I’m ok.. this is all so new to me. 2 to 3 years.. wow, ok. my doctor has told me about a surgical procedure that could be done later on if I should need it. I will watch for reds looking like pink, so far red is still red for me.

I will find the posters with this eye disease, that would good for me to see how they are doing and post with them. There is a saying I found the other day that I like and I say it to myself a couple of times every day.. “never let the best of you leave”

” title=”Wink” /> dianne

[lstegall]

#1064277

HEY GUYS,
JUST WANT YOU ALL TO KNOW WE CAN BEAT THIS, WE JUST HAVE TO KEEP PRAYING AND DOING WHAT WE CAN WITH THE DOCTOR HELP. WE WILL WIN. LINDA

[snelsen]

#1064278

Hi Dianne, I was orginally hyper, had a thryoidectomy, now on Synthroid. I developed TED about 1.5 years ago. All your eye symptoms, plus extreme light sensitivity, eyes that tear all the time, yet they are dry, and big time double vision.
I am so glad the prisms helped you with your double vision. Mine did not help at all. I do have a couple suggestions. It is my understanding that during TED, it is good to be followed by a neuro-ophthamologist. They are the ones, who, short of a bettetr description, are the "keepers of the optic nerve." They moniter visual fields, not just with wiggly fingers, but with machines, and do a lot of charts of color differentiation testing.

I am one of the VERY VERY FEW who actually did have decreased vision, decreased ability to sharply see colors, (red is the first to change. That meant I had optic neuropathy. That meant that my optic nerve was being compressed by the increased mass of fibrosed muscle and orbital fat. So, I did have a surgery called an orbital decompression (OD) to save my vision in my left eye.
That worked fine.
I am at the place now I am done with the inflammatory stage of TED. I think if the prisms had helped my double vision, I would have had them for a long time, to see if I could see well enough, and was happy with them. Other than not helping me at all, I found them quite blurry. because that option is out, I will have the eye muscle surgery (strabismus surgery) to move the muscles around a bit with the goal of eliminating double vision when I look straight ahead, and help quite a bit with looking up. I am not apprehensive about this surgery at all, looking forward to it.
Some people with TED have OD surgery because their eyes bulge way out of their heads, causing dry eyes, and a look that looks like you are staring all the time. It is a medical choice, not a cosmetic one.

Graves’ is stressful, but most people end up having it controlled. You won’t hear from all the folks who are just fine now, because they are not writing on the bulletin board anymore!
TED has been very difficult for me. I have hated the past two years. Ithink my double vision was not recognized before that, either by myself or the eye docs. They just kept changing my glasses RX! My reading, downward vision is not affected.
But having double vision while looking straight ahead, was finally bad enough for me to notice it.

Ask you eye doc about seeing a neuro/eye doc. see what he/she says. somebody should be monitering your visual fields on a fairly regular schedule, about every 2 months, or if you see any changes in your vision yourself.
Shirley

[cynthia]

#1064279

have question??? just had throidectomy about 2 weeks ago wonderered how long do I need to be watcing for s/s of TED????? currentily have no eye problems thanks god thanks

[Kimberly]

#1064280

Hi Cynthia – Unfortunately, there is no set answer to your question, as the eye disease tends to run its own course. Some patients actually experience eye problems *before* they go hypER. Others notice signs of TED *years* after going through one of the treatment options.

As Graves’ patients, the more that we can reduce stress in our lives, the better. So while we all need to be *aware* of possible eye issues, it’s best that we not stress ourselves out checking for symptoms on a daily basis! Just be aware that if you do notice common symptoms (dry eyes, gritty sensation in the eyes, swelling, tearing, double vision, etc.) to get yourself into an ophthalmologist to get things checked out. And one *serious* issue to watch for is a change in how you perceive colors. For example, if you have a red shirt that suddenly starts to look pink, this is a sign that you could be experiencing compression of the optic nerve. While this is very rare, it does need to be treated ASAP.

Best of luck!

[mdcomeau]

#1064281

i wanted to say thank you to everyone for replying to my post. you’ve been all helpful and encouraging, its good to hear from folks that are going threw this

[mdcomeau]

#1064282

this is so hard, crying most every day for the past while, just can’t stop myself.. don’t know how i’m going to get threw this ;(

[genuinruby]

#1064283

Hi Dianne,
Hang in there…..the best part of this site is that it helps us to see into the future. There is always someone just ahead of us that has been where we are now. The intensity of my eye troubles change with my ever changing thyroid levels…I find it helpful to distract myself when I realize I am too focused on just one part of this illness. And just because I am having issues with my eyes (due to increased antibody activity) does not mean that I am going to have to deal with the full blown effects of TED. Due to the extra anxiety that comes with graves, everything is just "Extra Overwhelming". You are not alone in dealing with crazy, uncontrollable crying. It will get better as your levels become more stable. Being "in range" is not the same as being "stable". If you haven’t already, check out the facebook group for this site, there is a ton of support over there.

Ruby Hancock
ps . you are welcome to contact me personaly for an extra shoulder. I have been dealing with these issuses for many years prior to my grave’s diagnosis 3 years ago. genuinruby@yahoo.com

[Kimberly]

#1064284

mdcomeau –

{{{Hugs}}} to you. I agree with genuinruby that the emotional issues do start to subside as we find our happy place within the "normal" range. Have you had levels checked recently? If not, that might be a place to start. And hopefully, you have a doc who will work with you based on your labs *and* your symptoms. Yes, the healing process does take time, and there’s no way to shortcut that process…but sometimes we have to give our docs a little nudge to make sure we are getting the best care possible. ” title=”Wink” />

As horrible as the eye issues are, please know that you are NOT stuck with this forever. There *is* light at the end of the tunnel, as many of our posters here can attest. If you can tell us a bit more about what is going on, perhaps someone else on the Board who has "Been There, Done That" will have some suggestions and/or words of encouragement.

Best of luck!

[azroses2322]

#1064285

Dear Dianne, I am with you in spirit. Your posting was also my story, except I am 3 years further in the journey and a little older than you. I feel your pain and fear as I remember my journey. Everyone is different but rest assured there light at the end. With bad TED, you may not be able to be in the light ( I lived in the dark for 1 /2 years because I could not stand the light) but now can enjoy it. I hear you say you cry every day — Oh, how I have been there and the fear added to the stress. When it is your eyes, it is a constant reminder anytime that you have them open — the fear that you don’t know what is going to happen to your sight or how you can live without it or with it impaired — the fear adds stress and the stess affects everything — remember over-sensativity to stress is a symptom of Hyperthyroidism — so everyhing is feeding each other to keep you from well-being. When my eyes were at this point, they hurt so much that I would close them down for 12 to 14 hours a day by putting in the nighttime ointment and using a mask — listeing to music, or TV and sleeping or imagining I was in a safe and beautiful place — it was the only time I could find the healing thay my body needed and and ease the stress that was so damaging and it was the only time I did not stress over my impaired eyesight. I was able to continue to work by switching to telecommuting and that helped take my mind off the fear during waking hours. Even the timing of your symptoms match the months of mine 3 years ago — I also had symptoms for a while — particularly in the spring. Then the swollen eyes in May and then finally the Graves Diagnosis in June. The TED was the scariest thing about the disease for those of us affected by TED — and I had a severe case of it. Please take care of yourself and your eyes — there are lots of postings here with suggestions on how to do that. I have learned so many ways to live with the TED until Graves was under control enough that the TED could surgically be addressed. For me the surgeries did work — for the double vision and the imbalance of the eyes and not being able to look up (frozen eye muscles) — I had strabismus and although I was scared of it, it worked beautifully. I had to wear a patch on one eye or the other for about a week until it healed enough (and my brain adjusted, for my eyes to work together. Then I had several eyelid surgeries to get my eyelids to close and function and be able to protect my eyes, some approaches worked and some did not — everyone is different. Ultimately after getting the upper lids in the right place, they had to take cartilidge from my ears to prop up my bottom lids so that my eyes could close (this was done last June). This last surgery was performed 3 years to the day after of my Graves diagnosis. When I was first diagnosed I thought a month until full recovery and return to normal life, would be an unbearable eternity, 3 years later, I look back and see the baby steps that it took, the many doctors and the intense daily challenges and successes and the ongoing steps and I realize it was all part of the journey — I placed a priority on my eyes and it paid off. I am so grateful for having doctors that had the skills and training to be able to help me. When one doctor reached the end of his expertise, he would send me to someone else who could help. As stated above please have your pressure monitored and along with the visual field. I did end up with Glaucoma — which once I would have considered the end of the world, but it is controlled meds and constatd checking and monitoring — but it is minor compared to what I have been though. I am grateful to have my eyesite and with only slight limitations to be functional at this stage. Please stay in touch with the bulletin board, you will get support and valuable info. If you can go to one of the conferences — it is worth it.

[mdcomeau]

#1064286

Ruby.. thank you, I will check out this groups facebook site. Extra overwhelming is right, I have been having a really hard time distracting myself as its hitting me in every direction. By saying in range is not the same as being stable.. do you mean staying stable in range for a longer period of time for things to get better. thank you.. for your email address, you might just be hearing from me.

Kimberly.. thank you, and thanks for the hugs. I have been going for blood test every two weeks, I’ve gone this morning. I used to see my doc every other week, the last time I saw him was September 7, he said i’m in range now since august 10th, and wants to see me on a monthly bases now instead of bi weekly. He said if I need to change my tapazole dose he will give me a call in-between appointments to let me know. My last reading that I know about was from the 24th of august and it was fty 15.7. Once I see him again later this month he will give me all my readings, everything should be ok so far as I have not heard from him since that last visit. Also I see my eye doctor every two weeks.. he has me on 25mg prednisone, going down to 20mg on Thursday of this week and seeing him again the following Thursday. ok.. I’ll keep in mind that I will not be stuck with this eye issue forever.. I’m finding that light at the end of the tunnel so far away.

azroses.. thank you, I have been living in the dark since this has started, I have only very recently been able to tolerate light, but still on some days I cannot as much. oh do I ever hear you once you type “when it’s your eyes, it is a constant reminder anytime that you have them open” . And that I am.. over-sensitive to stress and everything is feeding each other. I have spent many days in the darkness of my bedroom with the curtains shut tight. My pressure is monitored every two weeks, visual field is also monitored. I wish the conferences were closer to home…

Again.. thank you everyone for taking the time to share your story and listenting to mine and responding.. you’ve all given me a boost of courage again.. hugs

[snelsen]

#1064287

Hi, I am with you all the way with eye issues. I hope the prednisone helps. I hate the drug, but it did help some.
I go for eye surgery tomorrow, which I am also scared about. All of it is overwhelming. It is nice to hear from the facilitators that it does get better. As they said, we don’t hear from them much anymore, because they are moving ahead with their lives, just like you will be doing, and all of us who are posting now can continue to believe things will be better. IT is a very stressful disease.

[Kimberly]

#1064288

@ shirley – Hope that all goes well today…we will be thinking about you!

@ mdcomeau – On your labs, it’s really helpful if you can get into a routine where you are getting bloodwork done *prior* to your appointment, so then you can spend the appointment reviewing hard copies of the labs. The "normal" range for thyroid hormone levels is fairly wide, and different individuals feel better at different spots along the range. I sometimes have to give my doc’s office a "nudge" to change my dosage when I am at the bottom of the "normal" range, because I generally do NOT feel good at that point. It’s really helpful to have that discussion in person with copies of the labs in front of you…rather than trying to deal with someone over the phone.

P.S. I can delete the duplicate post…occasionally, we end up with Gremlins in the system. ” title=”Very Happy” />

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