[Bobbi]

#1170083

Hi, and welcome to our forum.

Yes, a diagnosis of the eye disease is scarey. I do understand. The important thing for you to understand right now, however, is that a doctor telling you that you have thyroid eye disease (TED) does NOT mean that you will go on to have horrible protrusion, and possible blindness. The eye disease is completely inconsistent in how it manifests itself from one person to the next. Having "some" eye disease symptoms does NOT mean it will inexorably progress to horrible. In point of fact, I’ve read articles in thyroid association newsletters that suggest that we ALL have "some" eye changes associated with the eye disease, but that most of us do not exhibit pronounced symptoms. Also, it has been suggested in some research, that RAI [i:xkb0qzbu][b:xkb0qzbu]temporarily[/b:xkb0qzbu][/i:xkb0qzbu] can increase symptoms of the eye disease in a small percentage of patients. It does not cause the disease — the disease is already there, but not apparent until the symptoms are aggravated by what is thought to be an immune system response to the RAI. Any immune system response will increase the severity of autoimmune diseases.

So, you said your specialist diagnosed the eye disease. If that was your endocrinologist/thyroid specialist, then make an appointment with an opthamologist (an MD specializing in eye diseases). The opthamologist is the medically trained doctor that should monitor your eyes from now on. He/she probably will not "do" anything for a while. The treatment options that we have available to us have very bad side effect potential, and they are not used unless it is necessary to protect your [i:xkb0qzbu][b:xkb0qzbu]vision[/b:xkb0qzbu][/i:xkb0qzbu]. Why wouldn’t it be necessary? Remember: some eye disease does not mean inevitable bad eye disease. But the doctor will be following your eye disease for the next couple of years.

The eye disease goes through what we call a "hot phase," during which symptoms appear and progress. A terrifying time. Then, the progression of the symptoms stops, and there is typically a period of time when the symptoms severity reverses. The cold phase. How much alleviation of symptoms there is varies from one person to the next. In my case, I had protrusion and a rather maddeningly intermittent doubling of my vision. (Maddening? It meant I saw double, but not constantly, so no prisms could be added to my glasses to provide me with consistent vision. So I could not drive safely. I think I would have preferred a slightly more severe doubling. No, probably not. But it was horribly frustrating.) The symptoms progressed over a period of about 18 months to two years. Then, they began to go away. Now, ten years later, the protrusion is significantly less, my eyes close at night, for example, and I only get doubling if I am quite tired, or if I have had an alcoholic beverage. Note: my opthamologist just watched and provided no additional medications or interventions. The disease went away without them.

So, try to keep in mind. Having some symptoms doesn’t mean you will have a steady progression to horrible. You might, but there’s no way to tell. Worrying about all the possible horrible scenarios will only ruin your day. They probably will not develop. So try to take one day at a time. Deal with what IS, not what might happen, as much as you can.

Many of us here have had the eye disease, and discussed it. Shirley and I are the main ones here now who can talk to you about it. But we have archives, and through the years there have been a lot of posts about TED.

[snelsen]

#1170084

Hi abde1, of COURSE you are worriednand and scared! all of this Graves’ stuff is a complete unknown until we experience it.
Then, a few of us are confronted with TED. Bobbi did a great post of describing the course of TED. If you put either the word TEd or my name, Shirley, you will see many posts of my experience with TED. You will also see the procedures I have had at the end of my post. It helps so so much to speak with others who have experienced and lived with TED.

I’d like to add a couple suggestions regarding having good care.
1. It is wise and reassuring to establish care with a neuro opthalmologist. This doctor will follow you, do a thorough baseline exam. usually these doc are very nice, and take a little time to answer your questions. they check your vision with a teat called visual fields, to be sure that the pressure on your optic nerve is ok. On rare occasions, there is too much pressure on the optic nerve, and a surgery needs to be done to relieve that pressure. this happened to me, but it is a fairly rare occurrence.
2. I was also seeing an eye doc who measured my double vision every 2 months or so.
It os very useful to have these measurements as we slug through TED, for it helps establish when we are ready foe any surgical procedures of they are needed.

I hate to overload you with too much information right now, but do write with more questions.
I had, and still have, very dry eyes, and am very sensitive to light. I use a lot of eye drops and lots of lubricant. I wear sun glasses all the time.
we do get through this, and if you end up with double. Vision, the surgery for that is great.
shirley

[AEBD1]

#1170085

Hello and thank you Bobbi and Shirley.

I did type "TED" into the archive before posting, but I did not scroll down far enough, and for that, I apologize–for probably asking questions and saying things you have already written about.

I want to thank you both so much for taking the time to respond to me. I have felt very encouraged to hear your advice and personal insight. It is indeed so comforting to hear there are others who went through this and who are continuing to go through this.

My specialist is an Endocrinologist. She has worked with me throughout the 2.5 years that I have had Graves’ disease. She said she would try to get me in with an opthamologist, but she said it might be half a year before I can get an appointment.

I have heard over and over again (and confirmed by you both) that meeting regularly with an opthamologist is key to this process. In saying this, the 6+ month wait to see one is a bit scary. I actually booked an appointment this afternoon with a doctor to see if she can refer me to an opthamologist who works closer to me, and who can see me more quickly.

How often did you see your opthalomogist to look at and to see how much your eye is protruding, or how the swelling is affecting your optic nerve, etc.?

Right now, there is constant pain and pressure in both my eyes, but more so in my left eye. How long is this pain a constant? Does is eventually fluctuate, or did you experience constant pain?

I’ve also heard about people taping down their eyelids when they went to sleep. If/When the eye begins to protrude, causing the eyelid to be unable to close fully, what were some techniques that worked for you? What do corneal abrasions look like, and when you get them, should you just go to your family doctor for topical treatment?

I have asked a lot of questions, so I’ll stop there for now. Again, thank you, thank you, thank you! Your online presence makes miles of difference to me!!! ” title=”Smile” /> Thank you.

[Kimberly]

#1170086

Hello – Each patient is different, so it’s difficult to talk about a "typical" course when it comes to pain and other symptoms. Follow up appointments with a doctor will also vary by patient, but I’ve heard from a lot of individuals who have appointments approximately every 3 months until they reach the "stable" phase of the disease.

January is Thyroid Awareness Month, and the American Association of Clinical Endocrinologists published an article about TED in their latest issue of EmPower magazine. (You will need to click your browser’s "back" button to return to the boards after viewing).

http://www.empoweryourhealth.org/issue- … ye-disease

On the appointment issue, you might visit the web site for ASOPRS.org, to see if there is a doctor near you. These docs are generally surgeons, but they often have more knowledge about Graves’ than others. You might also call the original office and ask if they would be willing to notify you if they have cancellations. If your schedule is flexible, this might get you in the door a lot quicker. And once you get that first appointment behind you, scheduling follow ups should be a lot easier.

Take care!

[AEBD1]

#1058800

Hey,

I have had Graves’ disease for over 2 years. I went in for Radioactive Iodine therapy this past November (2011) because my specialist said that was the next best step.

Unfortunately, the radiation has yet to kick in, but even worse, I was just diagnosed with Thyroid Eye Disease. My specialist did not give me any information for what to do next. I am so scared. My eyeballs are bulging. They spasm at night when I try to sleep. I am afraid that I will lose my sight, or that my eyes will bulge so much that I won’t be able to close them at night.

I just want to hear from anyone else with TED. Please, just to know that there are others out there, that can tell me what to expect, or what I can do now.

Thank you so much.

[susan]

#1170087

I am so glad I read these posts.. I have been dealing with the emotional and physical aspects of TED…I looked in the mirror one day and something was off. I had tearing eyes for awhile never connecting the dots. I had RAI last April and went to hypo in June.. I am stable on 100mg of Synthroid for the last two blood work ups. Now it’s all about my eyes. The eye doc says it is TED and the protrusion is not severe. I think I look surprised all the time and I am very self conscious. I have the pain, dryness( lubricating eye drops help a lot) and now my vision is weird. It is never blurry , more like unaligned…does that make sense..like dizzying…I have to go back to the eye doc in March but I am thinking of making an appt for now.. This is so distressing.. Reading your posts about it being ‘hot ‘ and ‘cold’ helped…I have already talked to the doc about cosmetic surgery to get rid of the swollen lids(he said he would do nothing for a year) but if I need decompression surgery I could do both. How do you know if you need decompression and does it make the bulging go away? I read somewhere that you still can have blurred vision? I can’t NOT see! Thanks…BTW love the new appearance!

[Kimberly]

#1170088

susan wrote:

How do you know if you need decompression and does it make the bulging go away? I read somewhere that you still can have blurred vision? I can’t NOT see!

Hello – glad to hear you like the new look!

You and your doctor will need to decide together whether to pursue decompression surgery. It does help with the “bulging” and is most commonly performed if there is compression of the optic nerve or if the bulging is so severe that it prevents the eyelid from closing all the way. If there is optic nerve involvement, the surgery is done right away; otherwise, the usual routine is to wait until the cold/stable phase has been reached. (One exception that I’ve heard is that if the bulging is so severe, the patient is at extreme risk from corneal damage).

Keep in mind that the “surprised” look can also be due to eyelid retraction. If that’s what is going on, this can be corrected in a separate surgery, following orbital decompression and (if needed) strabismus surgery to correct double vision.

As for the blurry vision, I would definitely mention this to a doctor, but this can potentially come from eyes being dry. Frequent use of a preservative-free drop (NOT the “get the red out” kind) can help provide some relief.

Take care!

[susan]

#1170089

Thank you so much, Kimberly! I have used a few moisturizing drops bu the one that keeps me most comfortable and for the longest amount of time is the extra strength moisturizing GEL drops from CVS(here on the East coast). I decided today to use them like 3-4 times a day instead of the twice daily I use them now. The dizzy unaligned vision happens when they are dry or tired. So I am going to make an appointment with the eye doctor but I may switch to a neuro opthamologist. Thanks again!

[AEBD1]

#1170090

Hey,

Just an update, and perhaps some helpful information.
I miraculously got into see my opthamologist this past week. He is the leading doctor in Oculoplasty surgery in Eastern Ontario. Anyway, he is seeing me monthly, so I’m very happy about that.

I expected him only to talk to me for the first few months, so that was all normal.

Something that I did not expect was his offer to inject a Cortisone-based liquid into each eye area. I got the one eye injected that day, and I can already see the swelling around the eye go down (i.e. the heavy, dark bags under my eyes are disappearing). Although it is not a magical solution for the protruding eyes, it is nice to know there are small measures that can make life a little easier as I wait out the hot phase.

All the best.

A

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