[Gabe]

#1179631

Thanks Shirley. Did your double vision eventually go away? Or is it controlled via your eyeglass prescription? Or some other way to control it? is this something that can lead to more sugery? anxiety rising! I have a great ophthalmologist but I will definitely seek a neuro-ophthalmologist (didn’t know there was such a thing).

Thanks! Karen

[snelsen]

#1179632

Hi Karen, if you have a good ophthalmologist, stick with that doc. But do have a discussion about TED. I do not recall. Have you been told you have TED, or did this come up very recently?

No, my double vision did not go away. It got worse. Most people do NOT have TED to the extreme degree that I had it. Most are moderate or mild. Not severe like me.

Yes, sometimes double vision (diplopia) leads to more surgery. In my case, I was counting the days until I could HAVE the strabismus surgery.
Briefly, TED has a couple of phases
1. Acute, or hot phase. when eyes are changing a lot, sometimes better, sometimes worse,
2. Quiet, or cold phase. Pretty much all damage and symptoms that occur are “done” so the measurements for any surgical procedures will be stable and and can be counted on by the surgeon.

I was going to three eye docs. A “regular one” who referred me to the neuro ophthalmologist, and they know ALL about TED, and the neuro/op doc referred me to a pediatric surgeon, for they are the one who do the strabismus surgery. This doc tried several prisms, which help some people a lot for the double vision, by bending the light. The temporary ones did not help me a lot, but now I do have prisms ground in both lens’s of my glasses, and they do help a lot. I also had strabismus surgery.
TED is a slow drag. I’d pursue the eye appts at your leisure, after you are a bit farther away from your thyroid surgery. Having said that, I know exactly what you mean, by the double vision interferes with work. If you shut either eye, you will not have double vision. Some people, in the interim of TED, use a patch on one eye when they work and read.
Be good for you to gather more information. There are some good TED references on the site.
Shirley

[bigad]

#1179633

My doctor said about 10-15% of GD patients will get TED, but it appears that most on this forum have mild or severe TED.

@Shirley- looking at your signature info.- you had a TT in 1959, but developed TED in 2008??? Was GD in remission then flared up?

[Gabe]

#1179634

Very helpful Shirley! Is there a medical test or something that tells the doctor you are in hot or cold phase? How do you know? Once you have double vision, can it correct itself?

Yes, I have TED…moderate proptosis diagnosed on 5/21 but the double vision has gotten worse since then. I do remember the ophthalmologist telling me to deal with the thyroid first and then we’ll deal with the TED.

The work continues….damn this GD!!

Karen

[snelsen]

#1179635

bigad, i have been taking synthroid for many years. I feel fine, but my labs always say i am hyped. I think for a period of about 10 years, I was taking too much Synthroid/150mcg. I went to several endos before I found the right one.
We slowly decreased my Synthroid to 77mcg, but that did NOT work, threw me in to sloth/hyPO stage, plus gastro paresis. Bumped it up slowly to 125mcg, and now have decreased to 112mcg. Labs never change, no matter what I am on. TSH always suppressed. Sometimes T3 T4 ok, most of time a little high.

So, for me hard, to define remission. But generally, I tend to think of remission as taking no meds at all, not having TT or RAI.

Gabe-the most frustrating and discouraging thing about TED, is that there is no test, no measurement, at all that says you have reached the inactive phase.
The only real guideline is that your eyes are not changing every day, and more significantly, they are stable and not getting worse.

The double vision bothered me the MOST Life changing not in a good way.

Makes sense to deal with your thyroid and the “thing” under your clavicle first.
I’m sure you will want to begin slugging through TED. I had to have an OD in the active phase because the enlarged, fibrosed eye muscles were putting pressure on my optic nerve. There are tests of colors, and the Humphrey visual fields test (machine) to be sure your optic nerves are ok. They also look at them, but cannot always tell about the pressure without additional testing.
Shirley

[Talley]

#1179636

Hi there;

Quick question for Karen and Shirley – is it worthwhile to see a specialist if I am uncertain about eye involvement and I have already had the TT? My eyes are dry and hurt most days – but I live in CO with high altitude and lack of humidity…

I was just thinking that I would try to see one of the docs at the Kellogg Eye Center in MI on a visit home to see my parents…

Thanks and I hope the double vision clears without the need for surgery…

[snelsen]

#1179637

Talley,

I like your idea of waiting until you go home, and go to Kellogg.
You’ll need to do the best you can to try to differentiate the dry eyes and hurting, related to the altitude and humidity. But I think I understand that you have been living there, and this is a change. Corneas hate to be dry, so I encourage you to use preservative free eye drops.

I hope the double visions clears, too!!!!!!!!
Shirley
I don’t think people with mild TED write much. They have dry eyes, a little light sensitivity, and that is it. Not sure how much or if any of those symptoms resolve, or they just get used to the “new normal” (not funny) and buy eye drops and sun glasses.

[Gabe]

#1179638

TED and Endo update:

Called yesterday for an “emergency” ophthalmologist appt because the double vision is affecting many aspects of life. I have a great ophthalmologist! The lower muscles on my right eye have pulled the eyeball down and pushed it out…lovely. Mild proptosis but bad diplopia. They are going to start by grinding prisms into my eyeglasses and tomorrow I’m picking up the temporary prism sticker for my existing glasses….should look cute. Go back in 5 weeks and if this doesn’t work we’ll discuss strabismus surgery…yippee… The hyper thyroid mess of symptoms were bad but gotta say the double vision is very hard to live (and work) with.

Endo visit went OK. He upped my Levothyroxine from 50 mcgs to 100 mcgs since my TSH was 24.9 just three weeks post TT. However I’m not feeling bad…slight weight gain and some low energy days so glad we caught this early. Questioned why he isn’t checking my T3 (only labs he ran were T4,Free and TSH). Didn’t give a good answer since he believes in dosing off the TSH level. Asked him how would he know I was converting T3 properly if not checked. Gobbledygook answer that I can’t remember. Asked him about combo treatment using DTE (Armour). Thinks its too unregulated and not standardized enough and might be quackery (his actual word). But has used it for ‘subjective’ symptoms treatment. I may be looking for new Endo.

Next labs in 6 weeks. Still very pleased with TT choice!

Cheers,,,

Karen

[snelsen]

#1179639

Hi Karen,
Glad you went re eyes.
I suggest that you tell them to wait to grind the prisms in your glasses. It will save you a ton of money, if the temporary ones don’t work. Or, you will spend a ton of money to find that the prisms in the glasses don’t help your double vision.
I am telling you several things I believe you should have been.
1. In addition to the above, the temporary prisms are kind of blurry. You should expect that.

2. Also, I think it should have been explained to you that your brains is the one who will get used to the prisms, and it takes at least 6 weeks minimum for you to know if they are helping.

3. I think I mentioned this before, but if your eyes are still changing, and not “stable” the strabismus surgery may help you at that moment for a short time, but if the muscles fibrose and change again, you most likely will have double vision again.

Gee. I wish someone had told me all these things.
I encourage you to check with your eye doc on all these thing!!
Shirley

Re your thyroid, I suggest that if you begin to feel more hyPO or more hyped symptoms, you call the endo and report it. You are pretty unstable right now, and six weeks is a long time for labs, I’m thinkin’

[SueAndHerZoo]

#1179640

Hi Karen….. glad there is progress going on regarding your double vision. Can’t even imagine having to deal with that right now on top of everything else your body is going through.

I just read your signature and you don’t mention having eye issues before your TT but I just assumed you did. Was the problem there prior to surgery or did it only start after surgery?

Sue

[Gabe]

#1179641

@Shirley. You are a wealth of information! Thanks so much. All the things you mentioned we’re discussed with me except for the possibility of recurrence (#3). I know the prism sticker will be blurry tomorrow and I’m sure I won’t like it. The cost of the prisms isn’t all that bad since I needed new glasses and my prescription changed anyway. My next appt is August 7th so that should give me enough time for the brain to get used to the prisms and to see if its working. I’ve read enough on here to know that in all likelihood this will not be an easy or one-time fix…so I’m crossing each bridge as they come. And trying to stay positive and patient!

@Sue. I’ve had eye involvement (swelling, dry eyes, blurry, mild pain, mild proptosis) since the beginning, however the double vision has gotten worse these last few days. I don’t think it has anything to do with the TT. My antibodies are very high so I think it’s just the TED running its course. Just when I start getting the thyroid crap under control, this kicks in…just isn’t fair…

My sister had/has GD with RAI 5 years ago and never had eye issues…

Thanks!

Karen

[snelsen]

#1179642

Karen!
Nice to know! That YOU know! Reassuring.

Sue/Zoo. I think I am safe in saying that TT is not related to “getting” TED.
Karen is “just” getting everything over ALL AT ONCE! Ha.Instead of waiting 50 years, never thinking for a MINUTE about TED, and having it hit me big time.
Shirley

[SueAndHerZoo]

#1179643

snelsen wrote:

Sue/Zoo. I think I am safe in saying that TT is not related to “getting” TED.
Karen is “just” getting everything over ALL AT ONCE! Ha.Instead of waiting 50 years, never thinking for a MINUTE about TED, and having it hit me big time.
Shirley

Thank you Shirley and Karen…. you’ve set my mind at ease and I will now cross that off my list of things to worry about during my three weeks till surgery. (Well, I’ll cross it off in pencil, there will still be a trace of worry because that’s just what I do.)
Sue

[Gabe]

#1179644

An update and a gripe session….

Almost 5 weeks post TT and its been a bit of a roller coaster. Got labs early (at 3 weeks) and was already hypo. Upped the Levothyroxine to 100 mcgs. Hot flashes are very hard to deal with and I’m not sleeping well at all…maybe 3 hours before waking. Now all this could be menopause…who knows. Have had a few bouts of crying, frustration, anxiety for silly reasons.

Generally feeling much better than prior to TT. I’m hoping my levels stabilize soon so I can start sorting out what is thyroid and what is menopause and what can I do about it, if anything! Scar is healing nicely. Not using any special creams, just sunscreen.

The most disturbing is the changes in my eyes. For those of you contemplating TT, please do NOT assume that the TT caused my eye issues. I had mild/moderate eyes issues prior to TT and I have off-the-charts antibodies (as measured by TRAb and TSI) so the timing is coincidental. Picked up my new glasses with the temporary prisms (stickers)…thanks to Shirley for the advice on Not getting them ground into the glass since I suspect they may not be working.

As bad as the hyper and hypo symptoms are…I could work thru them. I’m finding it very difficult to work thru not being able to see anything clearly or double of everything or headaches daily from the changes to my eyes. It’s definitely affecting my ability to work and to do my favorite thing…read.

I meet with the best (for my area) Strab ophthalmologist/surgeon in 2 weeks. I’m very concerned with the path this may take. If anyone has any good reading on TED, or advice, please share.

Just wondering what’s next…. Finally coming to terms with the fact that I have a chronic, live altering disease that I’m trying to remain positive and manage it vs. it controlling me. The battle continues….

Happy Independence Day to all!

Karen

[Kimberly]

#1179645

Hi Karen – Sorry to hear that you are on the TED rollercoaster now. Here are a few resources that will hopefully be helpful:

(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).

University of Michigan Kellogg Eye Center:
http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html

University of Wisconsin-Madison:
http://www.uwhealth.org/eyecare/20-questions-about-thyroid-eye-disease/36946

GDATF Informational Bulletins:
http://gdatf.org/about/about-graves-disease/patient-education/

GDATF YouTube Channel:
http://www.youtube.com/user/GravesAndThyroid

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