[mojon]

in reply to: Men With Graves’ and TED #1186352

Thank you Kimberly!

[mojon]

in reply to: Men With Graves’ and TED #1186350

Hi all,
It’s been several years since I checked in. I have some ongoing problems with labile BP and really difficult lightheadedness that Dr’s. have no answer for and is difficult to treat. I’m wondering if it is part of ongoing autoimmune disorder, related to Graves?

History: Head/Neck cancer in 2014. After radiation & chemo was diagnosed with Graves Disease with Thyroid Eye Disorder (GD with TED) in 2015. Went from hypothyroid to hyperthyroid. After TED burned itself out, Thyroid numbers settled down and had successful eye muscle surgery (2017). Thought that was the end of it. Then started having problems with BP which was labile (high and low) and lightheadedness. Efforts to treat have been mostly unsuccessful. If I take BP meds and BP goes down, I am so lightheaded I can barely get off the couch. Been to all kinds of docs, including heart. They can’t find any answer – why or what to do about it. Endocrinologist did some tests and said she couldn’t find anything that might explain it.

So even though my Thyroid numbers look O.K., could this be long-term or ongoing result of autoimmune response, or Graves? Anyone else have anything like this? THANKS!

[mojon]

in reply to: New site oneGRAVESvoice.com #1185625

Thanks Kimberly!

Yes, I heard about it from the GDATF monthly e-newsletter.

[mojon]

in reply to: GD with TED #1184553

Hi all,

Been awhile since I checked in. Just wanted to say things continue to go quite well. I’m functional and have not had any return of thyroid or eye problems. My numbers (in lab tests) have returned to the normal range. So it is completely possible to get through the terrible problems with GD and TED. I read all the recent posts. If I can be of help, please holler at me.

Jon

[mojon]

in reply to: GD with TED #1184550

Have to check in with the good news! I got the eye muscle (strabismus) surgery done. The first week I was very sore, but my eyes were lined up so I didn’t have lots of double vision. The following week I had headaches, lots of discomfort and the double vision returned. Damn! I also had quite a bit of light and wind sensitivity. I was discouraged because it was almost worse than before the surgery. Doc said it was apparent that I was having plenty of swelling, gave me some steroids. Still it was a couple of months before things started to settle down. Slowly I was getting better all around. Then about 1 month ago I forgot to put on my eye patch when I started out driving. To my amazement I could drive OK without it. If I look to the left, I still have double vision, but I just temporarily close one eye, or turn my head completely to look. Since the eye muscle surgery initially set my alignment straight ahead, apparently once all the swelling went down, my eyes settled with pretty good (but not perfect!) alignment. My eyes are no longer light sensitive and the improvement in my overall functioning is really good. I had a 2nd surgery date scheduled, but do not believe I will need/use it. I can drive (well) during day and night. The doc told me it would take time, but while I was in the middle of it, it didn’t seem like I would get better. I did.

So … I woke up December 1, 2015 with my eyes bulging. By September 2017 the nightmare is over. I am on the other side of this thing now. I know it doesn’t always work out, but it did for me and it can for you.

Can never THANK this group enough for all the information, education, assistance, perspective, encouragement that helped me through this. I hope I can be of help to others the way others have helped me.

[mojon]

in reply to: GD with TED #1184549

klassey,

Sure glad to hear things are going in the right direction. From the onset I was anxious to get the Graves active attack behind me, and really wondered how the docs would know when it was burned out. Plus, I didn’t trust Graves, with one doc telling me all I could count on was that it was “unpredictable”. So I was happy to finally get to the point where none of my numbers were changing, nor were the measurements and field vision tests. I was also so relieved to have a very successful, and yes easy time with orbital decompression. Strabismus is scheduled this next month. So the hard part was all the uncertainty and worry up front. Once the numbers start going the right way, and there is relief and remediation with surgery, it has done nothing but get better and better.

Lettuce know how it goes and your progress – which you WILL experience!

[mojon]

in reply to: Orbital Decompression #1185037

tajkoont,

I was really worried about getting orbital decompression done. Once my Graves had burned out I had the surgery done. It was completely a breeze. They went in through my nose/sinuses. Not even any bruising, black eyes. You could hardly tell anything had happened. After a week of nose bleeds, I was 100%. If I knew it was going to be that easy, I would not have wasted so much of my time worrying. Also, I am over 50, so to clear me for surgery, they did an EKG (and Cardiac Stress Test) which turned out just fine. So no problems with the anesthesiology and surgery. If your doctor has recommended it, and your Graves has done what it’s going to do, go for it. You will be very happy that you did. And yes, make sure to go to a doc who is familiar with, proficient in this specific surgery.

Lettuce know how you’re doing and how it turns out.

[mojon]

in reply to: GD with TED #1184541

Hi all,

Checking back in, and I’ve made some real progress. First of all, I had orbital decompression first in one eye, then 2 weeks later in the other. I was expecting it to be rough, but it was the opposite. They went in through my nose, so no outside cutting. I was a little sore with nose bleeds for a few weeks, but otherwise could not tell that anything happened. Result is my eyes have fallen back, are not pushed out any longer. The doc was very happy and so am I. This was not difficult at all.

So onto the next step, which had been my biggest worry. There really is no one here locally who does a lot of strabismus surgery, especially having experience with Graves. I met with Dr James Banks Shepherd at Washington University Eye Clinic in St. Louis. Immediate relief. This is his specialty. He had already done 3 strabismus surgeries with Graves patients that week, and has plenty of experience working with folks like me/us. He explained what he will be doing with the eye muscles that he compares to beef jerky now – tough, scarred as a result of TED. He also said he thought there was a good chance that one surgery could be all that I need. However in order to get things right, some patients require several surgeries.

Let me tell you, finding someone who knows what they are doing solved the biggest worry in my life right now. That will be a few months off, but already I feel like at least I’m in the right place, and finally am starting to look forward to coming out of the woods since all this started.

The support and information on this site has been the most valuable resource to me in the process.

Thanks!

[mojon]

in reply to: GD with TED #1184539

klassey,

It seemed like forever ago when my TED symptoms began, and like you, the double vision followed several months later. It certainly is crazy living with this, but as I’m finally getting underway with my surgery, it is a huge relief. I have gained so much understanding from the people on this site, that just was not available otherwise. Hopefully Strabismus will address double vision, or most of it. It really is hard to wait until surgery is possible, but I think it will work out.

Is your TED beginning to resolve? I know the biggest question I had was “How will I know?” when it’s no longer active. After lots of visits and lab tests with the Endocrinologist, along with many visits to the Eye doc, doing (Field of Vision) tests and measurements, it finally became clear that the TED had done what it was going to do.

I hope all goes well for you, and in a year or two you will be able to look back on this and all will be cleared up.

[mojon]

in reply to: GD with TED #1184538

Thanks Liz!

I did manage to get a consult appointment with a specialist in St. Louis (Washington University) who has been recommended by several ophthalmologists. I will keep that appointment and at least get his recommendation.

[mojon]

in reply to: GD with TED #1184535

UPDATE: Just had my first Orbital Decompression surgery. It is 16 months after the day I woke up with bulging eyes and the onset of GD with TED.

Surgery went fine. I don’t even have black eyes or bad swelling. Double-vision is actually a bit worse, but doc said that might happen. That won’t get addressed until Strabismus surgery. Doc did one eye first and will do the other in 2 weeks. I’m still trying to figure out the best place to do Strabismus surgery. There are some docs that do it locally, but they don’t seem to be specifically familiar with Graves or TED. I think they mostly have done children with “Lazy Eye” problems. Do you think that would be sufficient?

I continue to read with much interest the information and postings here. THANKS for this website!

[mojon]

in reply to: Why do the old timers still hang out on this website,and this thread? #1184832

Speaking for those of us who hope to become an old timer, THANKS for your participation which brings a perspective that we could get no other way.

[mojon]

in reply to: GD with TED #1184534

Thanks Liz and Kimberly! This is good information. I have been confused about what thyroidectomy may or may not do. I will take this info with me to my next Endo visit.

[mojon]

in reply to: GD with TED #1184531

If removing the thyroid does not remove the anti-bodies, is there any point to removing the thyroid? What are the pros/cons of doing this?

Thanks!

[mojon]

in reply to: GD with TED #1184530

Update: My eyes seem to have settled down a bit, no longer changing, and am left with lotsa double vision. My endo doesn’t trust my thyroid. He says my antibodies are out the roof. Recall I was hypothyroid for 20 years coming into this before my thyroid went nuts and messed my eyes up. I never had thyroid removed. Didn’t need to because it wasn’t producing. I am scheduled for a thyroid uptake scan so my endo can see what/if my thyroid is doing. If it is still doing something, he says we might be better off just taking it out. From what I’ve read here, that doesn’t seem to present any big problem and may help take the thyroid out of the mix of things contributing problems? Whady’all think? I don’t expect removing the thyroid to do anything to help the eye condition I’m left with, but maybe it will help stop any further activation? Eye docs are ready to do Orbital Decompression, then Strabismus once the thyroid numbers are stable.

So Many THANKS for this site and the messages you post. It has been extremely helpful.

GD with TED onset December 2015

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