[Raspberry]

#1060330

Hi everybody, I’ve had trouble with my eyes being red to a greater or lesser degree ever since the GD started. I’ve seen many ophthalmologists and most blame it on dryness or allergies and say they believe it is not due to TED. I barely have any proptosis so I don’t have much extra eye exposed so it’s not that. I’ve been using natural tears really frequently they don’t seem to help – like even after 20 minutes it feels like they are gone. I’ve been offered the plugs for the tear ducts they claim will help, but I still don’t quite believe them that dryness is the problem. I saw an oculofacial surgeon early on for pictures for a base line and they did that tear production test and told me it was normal.

What to do? Ideas?

Also I’m tired of looking like I just got up from an all night bender. Oh and the puffiness above and below adds to the look. It’s the worst it has ever been right now I think people are beginning to react to it negatively though they don’t say anything – just kind of an odd negative change in attitude after they look me in the eyes. I’m sure you guys dealing with significant proptosis have this challenge in spades, any advice appreciated.

And all that said, geeesh I’m wordy today, I will be going to the eye doc to get rechecked.

[shakira7]

#1181971

Hi Raspberry,

Since November 2013, I’ve also noticed a red line on my left eye, one red line. I’ve been more obsessed with my swollen upper eyelid since Sept 2013, so I haven’t paid much attention to this. However, I booked an appt with an optometrist this Friday, for an eye exam. I’m going to ask him about this, too. I’m actually going there to get an Rx to see an ocular-plastic surgeon who has some experience in diagnosing TED & doing blepharoplasty.

From what you’ve written, I think we’re in a similar boat. I don’t have any proptosis or eyelid retraction (BTW, I’m an asian-descendant, so i’ve got no eyelid…ha ha.) I have the swollen upper eyelid and an undereye bag, and now I’m a bit concerned about this red line.

In Oct 2013, I saw 2 opthalmologist who claim that they know about TED; they both confirmed me that I don’t have TED, however, none of them know why I have this swollen upper eyelid. One of them actually told me, it might be “aging”…to me who’s still in my mid-30s & look much younger than my age (thanks, doctor).

Although I hope you do not have TED (nor myself), I’ve been told that we need to see a neuro-opthalmologist or an opthalmologist who is familiar with TED. Kimberly, one of the moderator suggested that I bring a picture of myself before GD, and show it to the specialists.

Let us know how your check-up goes, and I’ll do the same.

Be well!

Shakira7

[Raspberry]

#1181972

Thanks for your support Shakira! Good luck with getting the referral you need from the optometrist. I’ve never seen a neuro-ophth. and the three ophth. I’ve seen so far all claim to know what they are doing, but it’s hard for me to trust given past medical let downs. And it just worked out that way that there were three, they are all in the same practice. I just realized I should have just used the word bloodshot to describe my eyes – maybe everyone thinks I’m an alcoholic now, lol. That red line you’ve got is likely just an inflamed section of the conjunctiva (the blood vessels there are invisible normally) but fortunately it sounds like it hasn’t taken over for you. Please keep us posted I’ll be curious to see how you find seeing the oculo-facial guy. I saw mine once and he seemed the most informed on TED of anyone I saw but his focus was mainly cases he could operate on only. So they took lots of unflatterings pics of me and I went on my way – I hope not to need to see him again!

[Kimberly]

#1181973

I’m not familiar with redness as a classic symptom of TED, except in conjunction with swelling of the conjunctiva, which is the inside lining of the eyelids. You can see a photo of this (although it’s pretty graphic) on the Int’l Thyroid Eye Disease Society’s web site:

(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/

Every patient is different, though, and you definitely deserve to be seen by an ophthalmologist who has experience with TED and will listen to your concerns!

[Raspberry]

#1181974

Thanks Kimberly that’s helpful and puts things in perspective. I need to thank my lucky stars every day it’s not worse than it is. Based on that page what I’ve got is Grade 1 chemosis…let us hope it goes to Grade 0 sometimes soon!

[gatorgirly]

#1181975

I had redness as one of my first TED symptoms. I too was told by two ophthalmologists that it was allergies or an infection. Please get to a neuro-ophthalmologist or someone who specializes in TED if you can. If the ophthalmologists telling you it’s not TED are your only options, push for some scans to rule out TED – visual field, MRI, and the thingy where they take pictures of the space behind your eyes.

Puffiness above and below your eyes is also a classic symptom.

[Raspberry]

#1181976

Gatorgirly, thanks for your reply I know your knowledge was earned the hard way. I was wondering can one assume that all neuro-ophthalmolgists know about TED – is it part of their training? At this stage of things is there anything they could do if it is TED ramping up that would short-circuit it? Like a blast of steroids or something?

[shakira7]

#1181977

Hi everyone,

I went to see an optometrist, to have him fill out an Rx for as well as eye exam. He kept telling me, “You don’t have a TED. I can tell people if they have it or not. You don’t seem to trust your doctors, if you’ve already seen two opthalmologists who ruled out TED, and you’re still trying to get an MRI/CT scan testing done.”
OMG, this guy had such an attitude and all he wanted to do was to sell eyeglass, given he works at an eyeglass store.
I totally ignored everything else he said, and I pushed him to give me the Rx I wanted. In the beginning, he told me to go back to the opthalmologists and let them send me to get the MRI done, since he can’t send me to one.

I had to really bring out my diva attitude of “I don’t care what you say, and you will give me the Rx I need.” (I didn’t tell him this, but basically this was my msg, he he.)

He told me that the redline across my conjunctiva is a blood vessel…it’s supposed to be there.

So, 2 opthalmologists (both are reputable in my town), 1 optometrist and my endo…all of them say that I do not have TED.

In mid-March (or maybe earlier), I will ask the ocular-plastic surgeon to send me to those testings.

[gatorgirly]

#1181978

Please don’t go to an optometrist for anything you suspect could be TED-related. Even during my active TED, I was still getting regular eye exams (I wear contacts/glasses) and the optometrists never even brought up what I considered to be visually obvious TED. Sure, they see lots of patients with lots of different eye issues, but when any thyroid disease is involved, you should be seeing a neuro-ophthalmologist, or at least an ophthalmologist trained in and experienced with TED (ask them how many of their patients have TED). OR, in some more rural places, an oculo-facial plastic surgeon who performs orbital decompressions – they can also do all the appropriate testing and diagnosing. When I moved from FL to western MA, a surgeon took over all my TED care even though I was still a year away from surgery.

To answer your question Raspberry, the baseline tests are the most important. That way, if and when your TED does become moderate or severe, the physicians have a way to see just how bad it really is and what has changed. I don’t know what their threshold of symptoms is for treatment, but we got on top of mine right away and oral steroids helped immensely with the severe swelling, redness and protrusion. Not enough, of course, as I did eventually have surgery, but enough that I could go back to a normal life (and even wear my contacts!).

Shakira, let’s hope they are all right and you don’t have TED. Still, you need to get to the bottom of the redness issue.

[Raspberry]

#1181979

Gatorgirly, thanks for the info it’s good to know the oral steroids helped. What dose were you on? Was it high enough to where it made you gain weight and have steroid related issues? I’m guessing the benefit was clearly worth it though! I hope my eyes calm down but they are making me nervous.

Shakira, that’s a bummer about the optometrist but not surprising. I’ve encountered many that seem to think it’s only TED if you have really obvious protrusion. I’ve had some docs say I have it and some say I don’t – I know it is frustrating.

[gatorgirly]

#1181980

I started on 50mg oral prednisone. I was on that dose for I think six weeks before we started tapering down by 5mg every couple of weeks. All said and done, I was on prednisone for six long months. I developed acne for the first time in my life, gained a ton of weight (~20lbs) and still have stretch marks on my love handles to show for it. But it was better than losing my eyesight due to optic nerve pressure, so ultimately the benefits outweighed the risks, even if I didn’t feel like it at the time.

[Raspberry]

#1181981

Thanks Gatorgirly it is good to know there are things they can do other than just let it run its course and that helps me to know what to ask for if it came to it. I’m glad it worked for you too.

[shakira7]

#1181982

@gatorgirly, thank you for your advice. I only went to see an optometrist to get his Rx, so that I can possibly see an ocular-plastic surgeon who was referred by another ocular-plastic surgeon who performs orbital decompression & other TED-related surgeries in US.

The problem is that it’s too expensive for me to fly to US for such treatments, especially since this type of condition requires multiple visit meaning each visit, I’ll have to add flight tickets and bed&breakfast/hotel fees. He was nice enough to give me the name of another surgeon who is in Canada.

I plan on asking this surgeon to let me have a complete orbital exam and I will also bring him my picture of before I started noticing puffy upper eyelid. As for the red blood vessel in the conjunctiva, it doesn’t hurt nor get itchy nor feel dry…just a fine line in red that concerns me, especially since I’ve got puffy upper eyelids going on. It’s been bothering me a lot, however, I find it strange that not a single soul around me notices that they look swollen, except for my mom. I guess they didn’t know me when I had my normal look.

Gatorgirly, I wanted to ask you, if you don’t mind; how long after the swollen eyelids did you notice eye protusion? Also, how long has it been since you’ve notice a change in your eyes? I’m just trying to find out if everyone with TED waits through the 18-24 months of active phase or if there are lucky ones who only goes through this for 6 months.

@Raspberry, I’m not sure if you were able to find a specialist near/within your town, if not – I contacted a couple of large clinics in US that specializes in TED (like that big medical centre one in Ann Arbour). You can ask them for a referral of someone closer to your hometown or anywhere where you can drive a reasonable distance.

This issue has been preoccupying my soul for the past 6 months, ever since I’ve noticed a puffy eyelid…and lately, I’ve joined a meditation class in order to not let myself completely absorbed with eye issue.

If Aladdin’s magic lamp and Ginnie appears and ask me what is my no. 1 wish that she can make it come true…I would, for sure, tell her that I really want my normal eyelids back. Nothing else won’t make me happy, but getting my normal eyelids will definitely make me happy.

[gatorgirly]

#1181983

Sounds like that blood vessel may be harmless, especially if your eye isn’t otherwise protruded or painful.

Only my closest friends and family members noticed when the minor TED began. But they noticed it right away. Co-workers said it didn’t look bad, and people who I met for the first time didn’t think my eyes looked odd at all. In fact, before my orbital decompression, people would tell me, “You have such big, pretty eyes,” when in fact my pre-TED eyes were very small and squinty.

The swollen eyelids and very minor protrusion began in June 2010 (I was dx with Graves’ in February 2010). I first noticed it when I started a new job and had a photo taken for my work badge. It was not until about 14 months later that it became a problem with the immense pain, pressure, redness, swelling, and major protrusion. After the first couple of days on the steroids, my eyes receded slightly but stabilized and remained stable. I am told I was very lucky to have such a short hot/active phase (a matter of weeks), but my surgeon still wanted to be sure it didn’t flare up again so I waited a full year from the end of the hot phase to have surgery.

By the way, you shouldn’t need to come to the US to see a neuro-ophthalmologist. Nor do you need a fancy TED eye center. My surgeries were done by an experienced surgeon in a small metropolitan area and the results were astonishing.

[Vickie]

#1181984

The redness of the sclera (white of the eye) is most often caused by a dry cornea (the clear protective outer layer of the eye that covers the iris, pupil, and sclera).

When you have TED it is extremely important to keep your eyes lubricated or you may end up permanently scarring your cornea. The inflammation from TED keeps the eye from fully closing when you blink, or you do not blink enough, and the surface of the cornea dries out.

Eye drops like Refresh Optive do not work for me- just like water they are gone in a blink. During the day I use GenTeal brand lubricant eye gel and Refresh P.M. lubricant eye ointment at night.

Redness and irritation are a constant battle for me but when I am diligent about applying eye gel frequently (like multiple times an hour) my eyes really do look and feel better.

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