[Kimberly]

#1175180

@LauraMyles – Wow, I’m so sorry that you are going through all of this!

I’m not really clear on whether you are needing thyroid surgery or eye surgery! Either way, here are a couple of good resources.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Thyroid Eye Disease FAQ:
http://www.kellogg.umich.edu/thyroid/faq.html

Thyroid Surgery Info:
http://endocrinediseases.org/thyroid/surgery.shtml

If you aren’t talking about eye surgery, but rather that your Graves’ has returned and is causing hyperthyroidism again, you have the same three treatment options as before: another round of RAI, surgery, or anti-thyroid drugs. Definitely make sure that you understand the pros and cons of all thee options.

You are correct that the preference before doing *any* surgery is to get thyroid hormone levels stabilized in order to reduce the risk of thyroid storm. If that isn’t possible, there are additional steps (such as administration of beta blockers and potassium iodide) that can be taken if needed to reduce this risk.

Definitely stay in close communication with your docs on this issue – and please check back to let us know how you are doing!

[jaqeinquotation]

#1175181

I am so sorry that we are going through this. I too have been telling my optometrist and ophthalmologist that I feel like I am losing my vision but they don’t listen. I can’t see far distances with my prescription glasses on and if I try to read a book or the words on the computer it has to be really big. Driving for me can be a guessing game. In the day time everything is so bright it seems like theres a cloud of fog almost and in the night time..most everything is blurry. I know my area so I wing it but I don’t want to be a danger to anyone else so I need to somehow get these professionals to see that I’m serious.

I have noticed that I can now move my eyes up, down, left and right where before I couldn’t because it used to hurt so bad. I still have double vision and because of it I hardly look people in their face when I’m speaking to them. It still get irritated and red. I’m hoping that now that I’ve had the TT that my eyes will settle down (swelling etc). I will be seeing both doctors in two weeks at which point I will discussing surgery to remove the fat and set the eyes back into the sockets. The small improvements lead me to believe that the cold phase is around the corner.

My prayers are with you

[Kimberly]

#1175182

@jaqeinquotation – Do you have the option in your area of getting a second opinion? You definitely *don’t* want a doc who will brush you off if you feel that your vision is deteriorating!

That’s great news, though, that you are seeing some pain relief when moving your eyes around!

[LauraMyles]

#1175183

Kimberly, I am sorry if my post was unclear. My brain goes in so many directions at once. I am going to just give a step by step of what i am going through and maybe it is the way it should happen

Feb 2010-Was told I had graves disease caused by my hyperactive thyroid.
July 2010-was given the iodine treatment and then put on synthroid. My levels balanced out late 2011.

I have continued to have blood work every 6 months, but this past October I started having vision issues, but had a lot of stress going on and waited until November to have a vision screening. Optometrist said what was going on with my eyes would subside and not a big deal.

By mid December my eyes were a mess watering all the time, sensitive to light, swollen, left eye bulging. I was able to see an Opthalmologist in January and as soon as he looked at me he said I was going to need decompression surgery. I had a CT-Scan met with Dr. again he confirmed I needed surgery and instructed me to meet with a Ear/Nose/Throat surgeon who would be assisting him with my surgery. I now have met with both surgeons and they both say to do the surgery. I am the one that spoke up to ENT about my thyroid levels and then he was like oh yes I am glad you told me they were high that could have been dangerous if surgery was performed.

I spoke with my Endocrinologist about what was going on and she says I have to wait and let my levels return to normal. She wants blood work done again on 2/23/13. Until then I am suppose to sleep with my head elevated and ice my eyes. I have to close 1 eye to read or type. I don’t understand why they can’t do something to help me with my vision issues before the squinting and double vision are permanent.

Sorry about going on and on, but I am so frustrated and sad.

[snelsen]

#1175184

Hi
1. IT is important for you to understand why the eye doc and ENT doc want to schedule this surgery (i am sure it is an OD or orbital decompression. ) Did they say it was because of pressure on your optic nerve? Please ask them this.
Symptoms (from your end) are decreasing ability to see the color red, and decreasing vision over all. this is usually determined by these signs and visual fields tests frequently done by a machine called the Humphrey visual fields testing (looking a blinking light in different areas.)

2. Please ask this.
(I am saying this, cause I have had had TED for three years, and NEVER EVER has any of my five eye docs and neuro/ophthalmologist doc EVER been interested in my thyroid labs. BUT then, I never said they were high, as you did. Generally speaking, they are unrelated to the decisions of how and when to treat TED. UNLESS, AS KIMBERLY SAID, YOU ARE IN A HYPERTHYROID STATE AT THIS TIME.

Kimberly’s quote:
“If you aren’t talking about eye surgery, but rather that your Graves’ has returned and is causing hyperthyroidism again, you have the same three treatment options as before: another round of RAI, surgery, or anti-thyroid drugs. Definitely make sure that you understand the pros and cons of all thee options.

You are correct that the preference before doing *any* surgery is to get thyroid hormone levels stabilized in order to reduce the risk of thyroid storm. If that isn’t possible, there are additional steps (such as administration of beta blockers and potassium iodide) that can be taken if needed to reduce this risk.”

And I guess I want to know why you mentioned your thyroid labs. ARE they high? Not clear here. Maybe all of this is a huge misunderstanding and the docs should talk with each other.

One of the most important things here, is THE REASON you are having the OD. If it is for optic neuropathy, it needs to be done soon. Because you can lose vision permanently if there is continued pressure on the optic nerve. It would be critical, and if you are hyper, the endo and surgeons can work together to reduce any risk. If it is elective, for proptosis, bulging eyes, if there is some good reason to wait, you can. It’s never a good idea to have surgical procedures when we are hyPER. But, as you well know, I am not a doc or your docs. I am trying to give you some thoughts to ask your docs about, pronto.
Do write again, just read your post again, and I am thinking I now understand that the reason for your OD is proptosis only, based on your statement,
“By mid December my eyes were a mess watering all the time, sensitive to light, swollen, left eye bulging. I was able to see an Opthalmologist in January and as soon as he looked at me he said I was going to need decompression surgery.”

So I think most of my post about optic neuropathy is probably not relevant.
In summary, it sounds like your endo wants another set of labs to see where you are before surgery is scheduled. I really apologize for the length of my post, most of which is probably not relevant. Seems some good communication is due to your from all of your docs.
Shirley

[Kimberly]

#1175185

Hello – Shirley gave you some great things to think about; I just wanted to re-iterate the issue of optic nerve compression, which she mentioned in #1 of her post.

Thyroid Eye Disease typically goes through distinct phases. The period where symptoms are getting worse is referred to the “hot” phase. Once the “hot” phase is over, there is usually some improvement in symptoms…and then things eventually level out and stop changing. (This is referred to as the “cold” phase). During the “hot” phase, the treatment approach is usually “wait and see”, unless you are experiencing the compression of the optic nerve that Shirley mentioned.

If three is no optic nerve involvement, doctors prefer to wait until the “cold” (inactive) phase of the disease has been reached before doing any surgery. The reason is that surgeons don’t want to do *one* orbital decompression, only to find that your eyes have shifted *again* and the procedure needs to be re-done.

I’m not a doc, but my understanding is that the surgery for correcting double vision (strabismus) can successfully be done at any time. It’s the optic nerve involvement that needs to be corrected right away to preserve vision.

Hopefully, this latest tweak of your synthroid dosage will get your levels back in range, but the next set of labs will definitely shed some light on what is going on.

Take care!

[jaqeinquotation]

#1175186

Kimberly,

I will be seeing the ophthalmologist next Wednesday and I plan on seeking a second opinion. The problem he may not refer me and then what? My family physician certainly won’t. He said he doesn’t want to step on any toes since he already referred me to the ophthalmologist I’m currently seeing now. Truth is..physician and specialist are in the same medical plaza-the buildings are adjacent to one another. So I get it.
Nevertheless, when I see the Ophth…..next week I plan on asking for a referral to another one (preferably the hospital where I had my TT done..the care was impeccable and they have an ophthalmology department there as well) but I wanted to ask if he, the ophthalmologist, could refer me to a neuro-ophthalmologist? Or does there have to be optic nerve involvement for that kind of referral? I also have a routine check up with my optometrist a day before I see the specialist-maybe she can refer me? Either way I definitely want a 2nd opinion.
I’m not sure what’s going on with my eyes-one minute I think it’s getting better and then the next….not so much. For example last night I had a real headache and the left eye which is the bigger one just hurt. Ice helped for a bit but I took 2 tylenol with codeine for some relief. I also don’t think my eyes are closing completely at night and it just seems like its getting worse.

I guess it also doesn’t help when your family physician tells you that you’re in denial and that you will never look the same again. Whatever Doc..you guys don’t even have all the answers so why are you trying to convince me of what you don’t really know. Just because you haven’t seen it doesn’t mean it will never happen. Sorry about that…a little venting is good for the soul lol

[Kimberly]

#1175187

Hello – I’m not familiar with how the referral process works where you are, but it seems that the optometrist would be a good resource for getting you a referral to a neuro-ophthalmologist. As I recall, you *have* had specific issues with your vision, so I don’t think that a referral directly to a neuro-ophth would be out of line at all. It would be helpful if you could document in bullet point form all of the specific issues that you have mentioned on this forum.

Hopefully, others who have seen a neuro-ophth can chime in with how the referral process worked in the States.

Take care!

[gatorgirly]

#1175188

If they tell you that you need optic nerve involvement in order to be referred to a neuro-op, they’re lying. I saw one and never had compromised vision, just really severe swelling at first and moderate proptosis. However, neuro-ops are hard to come by and you will almost never find them in rural areas and may even need to drive pretty far unless you’re in a large city. There are none here in western Massachusetts, so my oculofacial surgeon took care of all the testing that the neuro-op was doing.

[ChristinaDe]

#1175189

I agree with @gatorgirly.

I’ve also seen a neuro-op & I don’t have nerve involvement yet either…just the swelling, mild proptosis, and dry eyes. Now that I’ve gone in to see the neuro-op, he wants to follow me with visits every 2 months. He may move those up to monthly if my disease worsens. They are hard to get into in my city as well, forcing you to jump through a fair amount of referral hoops, but once you’re in there is no problem seeing them afterward.

I don’t know how they handle referrals elsewhere, but my neuro-op will NOT see anyone without a physician referral that includes all the office notes, labs, tests, etc. I used my endo for that, but he would have accepted it from my PCP as well. He also accepts referrals from regular eye docs. If he has your chart, and is sure you have Graves’, he’ll see you even if you have mild disease, or no disease at all. Believes in monitoring.

At this point, my situation is very mild and we’re watching. If nothing worsens then I’ll only need the eyelid surgery once the acute phase ends. He’ll be the one referring me to an oculo-plastics with Graves’ experience when that time comes. Sorry if that was circular…I’m on post-op Vicodan.

[Author]

Posts