[Stymie]

#1059830

Hi all!

Ive been looking around and can’t seem o find what I’m looking for.

But what I’m wondering is if there’s a list, reference or something that tells you the progression of GO.

Like mild is this and then progresses to this.

What symptoms should I look out for if my GO is progressing further?

Thank you so much.

D

[Kimberly]

#1178061

Hello – There are a few different classifications where doctors assign a “score” to different aspects of TED, but here is a link that describes the VISA system.

The acronym stands for Vison loss, Inflammation, Strabismus, Appearance

(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).

http://thyroideyedisease.org/clinical-features-visa-classification/

Hope this helps!

[Momof5]

#1178062

I’m curious too. Thanks for the link, Kimberly.

My question is more of how do is TED diagnosed? It’s a bit confusing because I have some lid retraction (not bad – it hits the top of my iris) and possibly some swelling of one eye, but my endo and several other people say they don’t see it. The endo measured my eyes at 16 – both of them. I’m seeing an eye specialist to be sure.

But, when I read the symptoms, I see swelling and lid retraction as signs, but then I read posts where people go to the eye dr and the dr says no TED, just swelling and lid retraction. It’s all very confusing.

[Kimberly]

#1178063

Some doctors might be using different terminology in making a TED diagnosis. The link above includes lid retraction and inflammation as components of TED. One of the docs at our San Diego conference said he believes that almost all Graves’ patients have some degree of eye involvement, even though in many patients, it might be mild (a bit of dryness, light sensitivity, etc.) and not cause significant problems.

[ChristinaDe]

#1178064

I’d love to know the answers to this too!

I saw a neuro opthamologist who specializes in Graves’ & heard a lot of words like “we don’t know”, “just have to wait”, “may progress, may not”, “caused by Graves’, not thyroid yet some refer to it as thyroid eye disease'”, but also says they “don’t like to do anything while thyroid levels are off”, “we just don’t know who will get it and who won’t”, “we just don’t know who will get the severe version and who won’t”, we just don’t know how long it will stay in the active phase”, “we just don’t know who will get it years later or a 2nd time”, “we just don’t know if it will improve on it’s own yet”. He also said that they don’t know why one eye is often affected differently than the other. Lots of “don’t knows” tho. He did reassure me that they can fix just about anything that happens once they know that the process has maxed itself out.

After having been through the testing process, I’m told that I likely have very mild GO. But I think that was based on symptoms & visualization more than anything in my case, along with a lid measurement that is slightly abnormal on the left. Eye protrusion was negative.

Love this doc, very empathic, takes lots of time with his patients, but he made it pretty clear that he has to take each situation and deal with it on a case-by-case basis. So this is what I worry most about now. I have puffy lids, water bags under the eyes & I’m hating the way that looks. But my dry, gritty, sore feeling went away after TT (they don’t know why that happened either) & I never did have any protrusion so we’re thinking that this may be as bad as it gets & that it may even improve some more over the next year. Now is where he says I need to become “patient”…literally & figuratively. Sort of a watch, wait, and see thing. Ughhh! :rolleyes:

Shirley really seems to know a LOT about eye disease. I’m betting she’ll shed some light on your question!

[Momof5]

#1178065

Christina, how long ago were you diagnosed and hoe long have you had the eye problems?

[ChristinaDe]

#1178066

Carrie,

I was officially diagnosed w/ hyperthyroidism & Graves’ last November. My symptoms began in 2008 and I kept complaining to my docs that I thought I was hyperthyroid, that my father & grandmother both had Graves’, etc. I kept getting labs drawn & kept being told that they were ok & so it must be something else. Went to cardiologists, therapists, and others & they kept asking me if I was sure that my thyroid was ok. I kept saying yes. Finally, I went to an endo on my own to see if I had some other hormonal issue. She looked at my labs from 2008 on & said that I’ve been hyper the whole time. Asked why I hadn’t pursued additional tests & treatment. OMG! (Makes the case for seeing your labs for yourself – any and all labs!) Anyway, I was pretty sick by then. Severe weight loss, muscle wasting, activity intolerance, brain fog, anxiety, tremors, fatigue. Since I’d had it for so long, most thought my possibility of remission was unlikely. I tried anyway, but couldn’t tolerate the meds so was encouraged to choose a definitive treatment option.

My eye issues began in late 2009. They were puffy, my left eye got smaller than my right, they were dry & gritty, sensitive to light & wind, and the left eyeball would get very sore from the back. Also, my vision began to change in about 2011. My eyes seemed to reach their worst by early 2012 & didn’t progress from there despite no treatment for any of it. One of my docs (PCP) did not feel my eye changes were Graves’ related, the other 2 (endo & thyroid surgeon) thought that they may be but they weren’t sure – so I was referred to a Graves’ eye specialist. He thought it was Graves’ related, but minor. After TT the dryness, grittiness, and aching subsided – almost overnight. The puffiness decreased, but did not go away. No one knows why that happened & so it may just be coincidental timing. However, the lid puffiness, the water bags, and the difference in size between the right & left remains. I’m told that now that my thyroid is out and once I’m at my optimal levels on Synthroid that I could see further improvement, but maybe not. And it probably won’t bring me back to 100%. There are a couple of cosmetic fixes I can try to improve the look. So that’s probably more than you wanted to know, but that’s my story!

[Kimberly]

#1178067

Just a quick note on one eye only being affected. I asked this question once in a presentation, and it turns out this is just one more thing that docs aren’t able to answer! The doc commented that this was like rheumatoid arthritis, which can horribly affect one limb — and leave the other one perfectly fine. And we just don’t know why.

Hopefully, this is something that can eventually be better understood through research!

[Momof5]

#1178068

Thanks, Christina! That is quite the story. I’m sorry that it took so long to get a good diagnosis and treatment. Makes me feel lucky to have gotten such a quick diagnosis (lucky to get graves????).

[paigemattes]

#1178069

Momof5 wrote:

Thanks, Christina! That is quite the story. I’m sorry that it took so long to get a good diagnosis and treatment. Makes me feel lucky to have gotten such a quick diagnosis (lucky to get graves????).

Hi there. I feel your frustration with the TED I have had a similar experience. I too have one eye that is bulging and the lid is above the iris. I went to see an occuloimmunologist who said I have 7 of 10 signs of active TED. He then told me to call him if i wake up one day with double vision. My eyes itch and feel pressurized all the time. They are red alot. I hate to look in a mirror because the changes in my eyes distresses me terribly. I would swear my left eye has gotten smaller while the right is considerably larger. This morning when I showered I could feel the Lorette lid fold outward when eyes were closed tightly. This never happened before. I have been taking ATD for 3 days. I am wondering if botox could help stop the lids retraction? I also wonder if insurance will pay for surgery to correct my appearance?

[Kimberly]

#1178070

@paigemattes – Hello and welcome! Some docs do use Botox to help with eyelid retraction, although my understanding is that the effect is not permanent. (I believe it lasts for a few months). As far as I know, this is still considered an “off-label” use of Botox…meaning that Botox has not been given FDA clearance for use *specifically* in thyroid eye disease. I would also make absolutely sure to use a doc that is familiar with the use of Botox specifically for TED.

As for medical vs. cosmetic surgery, make sure that any surgeon will be absolutely certain to code the procedure as a *medical* necessity. (Which it is, especially if the retraction is keeping your lids from closing all the way, which could potentially damage the cornea). When procedures are coded as “cosmetic”, that’s when the insurance companies will generally refuse to pay.

Hope this helps!

[Momof5]

#1178071

Kimberly wrote:

@paigemattes – Hello and welcome! Some docs do use Botox to help with eyelid retraction, although my understanding is that the effect is not permanent. (I believe it lasts for a few months). As far as I know, this is still considered an “off-label” use of Botox…meaning that Botox has not been given FDA clearance for use *specifically* in thyroid eye disease. I would also make absolutely sure to use a doc that is familiar with the use of Botox specifically for TED.

As for medical vs. cosmetic surgery, make sure that any surgeon will be absolutely certain to code the procedure as a *medical* necessity. (Which it is, especially if the retraction is keeping your lids from closing all the way, which could potentially damage the cornea). When procedures are coded as “cosmetic”, that’s when the insurance companies will generally refuse to pay.

Hope this helps!

Do they use Botox while still in the active phase?

And Hello paigemattes!

[Kimberly]

#1178072

Hello – Good question…I don’t *think* the presentations I’ve heard mentioned having to wait until the cold phase for Botox…but this would definitely be something to run past you doc.

[Momof5]

#1178073

Yikes! In my never ending quest for more information, I was reading the Kellogg Eye Center information today. It states that approx 1 million people have active TED each year (:o)

Quote:

Approximately one million Americans are diagnosed with Graves’ eye disease each year. Women are five to six times more likely than men to get the disease. Cigarette smokers are at significantly increased risk to develop the disease, and when they do, often have more severe and prolonged activity that threatens vision.

http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html

I guess I’m still confused (as I am sure many are) with TED…it seems like it can be “a little” and never go any further, or it can start mild, then explode, then settle down again. And, in rare cases, flare up a second or third time. Seems like there can be good and bad days, or it can be lid retraction, bulging, or the bags/swelling, or redness and dryness! ARGH! My brain doesn’t like things that don’t fit into neat little boxes. :p

[Kimberly]

#1178074

Hello – UM Kellogg is a great resource for TED information…many of their doctors have spoken at our patient conferences over the last few years.

I understand the tendency to want “neat little boxes”, as I’m that way myself. But unfortunately, Graves’ disease is *anything* but neat or predictable!

One doc at our San Diego conference noted that Graves’ gives whole new meaning to the terms “patients” and “patience”!

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