[Ski]

#1073076

Great emoticon, I hadn’t seen that one before! ” title=”Very Happy” />

But I digress. ” title=”Wink” />

We understand about the eye disease ~ it’s separate, but related to, the thyroid disease. The thyroid disease (or syndrome, as they’ve begun to realize) is Graves’ Disease. The eye disease is more routinely referred to here as Thyroid Eye Disease, or TED.

People with TED often experience double vision and pain behind the eyes. The diagnosis is confirmed through scans and measurements, which the ophthalmologist is doing for you.

Now, first I will tell you the good news. For the most part, TED patients do not experience the very worst of the symptoms. After the disease has run its course, if you continue to have issues with the way you look or the way your eyes feel, there are surgical options to return your eyes to their "before" look.

The not-so-good news is that, for the most part, the treatment for TED is "wait and see." Here’s why. At first, TED symptoms fluctuate ~ pressure climbs and drops, proptosis (bulging) increases and decreases. During this time, there are a couple of treatments you can take advantage of, if the symptoms are REALLY bad, but the most effective treatments involve steroids and/or directed radiation to the orbit of the eye, which (obviously) carry some risks of their own. For that reason, they are reserved for patients whose symptoms are the very worst, or whose eye pressure is threatening to compress the optic nerve, because that cannot be corrected and loss of vision results.

For most patients, treatment consists of making sure you have enough moisture in your eyes (use artificial tears liberally, NOT get-the-red-out drops, and sometimes gel products), and protecting them from irritants, such as computer work, flourescent lights, breezes, direct sunlight. Protection can be as simple as wearing tinted glasses, wraparound sunglasses, remembering to blink and using the artificial tears (preservative-free is a must).

Overall, it has been found that the active phase, or the "hot phase" of the eye disease resolves, changes stop happening, within 12-36 months. People who smoke are the ones on the furthest edge of those numbers. If you don’t smoke, it’s probably more on the order of 12-18 months until your hot phase is over. After the hot phase, there is a period of stability, and finally a period of slight improvements, followed by a complete cessation of changes. After the changes have stopped, meaning that your eye symptoms no longer CHANGE routinely, you have officially entered the "cold phase," and that’s when you can talk to your doctor about surgical corrections, if you need them. Surgery is considered during the hot phase ONLY when the optic nerve is threatened, because surgery done too early can overcorrect, and the trauma can actually trigger a new series of worsening symptoms, which will make correction later on more difficult.

For now, if you have pain, use ziploc bags of frozen peas or corn ~ and DON’T put them back in the cycle to eat. ” title=”Smile” /> You can thaw/refreeze a lot of times for purposes of using them as a cold compress, but they wouldn’t be any good as food anymore. The peas or corn fit more easily into the creases and contours of the eye, so you get more relief.

You may also want to raise the head of your bed. It doesn’t improve the symptoms, per se, but it does use gravity to keep some of the fluid from "collecting" in the tissues around your eyes as you sleep.

For the double vision, there are prisms you can have put into your glasses (they have stick-on versions) that can help you to see normally. If the double vision is changing rapidly, you can be chasing a moving target with them, but you can investigate that and see how it works for you.

TED is an autoimmune disease, as is Graves’ thyroid disease. For that reason, avoiding stress CAN be a help during the active phases of disease. Your immune system, for some reason we don’t really understand, has begun to create antibodies to the tissues behind your eyes. They attack the tissues (either the muscle tissue or the fatty tissue, sometimes both), the tissues swell, and voila, your eyes experience pressure, trouble moving, double vision, and sometimes trouble closing all the way. This is because your eyes are enclosed in a cone-shaped bone cavity, and there’s nothing for the eyes to DO except bulge out when the tissues behind swell beyond normal sizes. (By the way, it is rather typical for the eyes to be affected differently, meaning one may have more pain/trouble moving than the other.)

Antibodies are stimulated into action when we are under stress. There is an adrenaline rush, as well as a "boost" to the immune system, which is meant to protect us. Unfortunately, when we have an autoimmune disease, the "boost" will boost the symptoms we are trying to avoid. For that reason, anything you can do to calm yourself, regularly, will benefit you, no question. I know it’s going to be tough as you go through this, and just because we say it doesn’t mean you’ll be able to do it. But do try. It’s worth it. Hot baths, funny movies, walks in the park, yoga, meditation ~ ANYTHING that brings you peace is a GOOD THING.

You will want to research everything you can about Graves’ and TED. An informed patient is much better at handling the bumps in the road, because they understand.

Keep asking questions! We’re here to help!

[kylesmom1007]

#1073077

OMG – that is some fantastic information, thank you so much! Tough to relax when you are an unemployed single mom with no forseeable future income – especially if I have to stay away from the computer, but I am going to give it my best shot. I will implement the raising of the head of my bed and will sacrifice a bag of frozen peas for the cause – these are practical and simple suggestions (and I appreciate them greatly). Maybe it is time to change careers, gears and tears (to the no preservative kind)!! But now I digress….

Are there any nutritional changes or supplement additions that help with this condition? I read on someone’s blog that flaxseed oil and Omega 3’s in general can help with the inflammation – any truth to that? What about anti inflammatory meds like ibuprofen? I have ordered a few books on Graves and TED specifically, but I feel like I need to take some drastic action now – but it sounds like I will have to supress that need and wait and see (I HATE that!!).

Thank you so much for your input – it is so good to know that I am not alone in this battle. ” title=”Smile” />

[kylesmom1007]

#1019647

I am new to this message board stuff, so bear with me! Background: I went to the eye doctor a few weeks ago because I was having double vision upon awakening for about 10 minutes and also when I look upward – all the time – for about 4 weeks duration. He said I had a neurological problem and referred me to an opthalmologist. Opthalmologist suspected TED associated with Graves and referred me for MRI and blood tests. Blood tests show 2 out of 3 thyroid tests to be abnormal. Still awaiting MRI results. Referred to Endocrinologist – who has yet to set an appointment date for me as well as to an opthalmologist who specializes in TED (who is booked for 2 months).

In the meantime, my eyesight is getting worse in that the double vision is lasting longer each morning. I am also experiencing great eye fatigue and a "pressure" feeling behind and around my eyes that seems to worsen each day. Opthalmologist says that the pressure readings are high – whatever that means. I do not have a definitive diagnosis of Graves, however that seems to be the best guess of the opthalmologist. I am greatly concerned that my eye issue is being treated as if it is no big deal and will just have to wait until I can get an appointment with the Kaiser endo and opthal specialist. Isn’t there anything I can do right now to stop the progress of my eye problems?? I am currently laid off from work and looking for work on the computer leaves my eyes basically useless and it is starting to really scare me. Any wisdom, experience or hope that you can share will be most appreciated!
” title=”Confused” />

[Ski]

#1073078

All I know is that anti-inflammatories won’t help. Not sure of the other two ~ some people take them, but they’re not reliably proven to help. The only thing I would advise is that, if you’re going to try taking them, make sure that all of your doctors know what you’re taking, how much, and how often. You never know if there are potential interactions with other things you’re taking, and the doctor would know.

The type of inflammation you’re dealing with here is different than most you’ve experienced, and the only drug proven to reduce the inflammation is a steroid like prednisone. Ibuprofen may give some relief from the pain, but it wouldn’t have an affect on any proptosis.

The most drastic action you can take is to calm down, and I really, truly mean that. It’s the hardest thing to do ~ we’re all used to conditions that resolve within a couple weeks’ time, and it feels unnatural to have something that hangs on and hangs on, that we can’t aggressively fight. I’m not saying it’s easy. I am saying it is worth it, if you can achieve it. Look for things that feed your soul. Abandon things that suck the energy from you and give nothing back. Try and keep peace within, while the craziness goes on around you.

[kylesmom1007]

#1073079

Thank you, Ski. I wish I could calm down, but so far I am not succeeding. Can’t stop crying (that has to help with moisture – I guess that could be a good thing) and feeling utterly helpless and hopeless. Maybe that’s just part of the process, but I am so ready for it to pass! Again, thank you! Stacy

[Ski]

#1073080

Remember, your body and your mind are dealing with a LOT right now. Not only TED, but potentially GD, and also the realization that you have begun on a path that you know is going to be difficult. In this interim period, you may want to investigate anti-depressants. The need for them declines over time, with GD, but they can be an enormous help in the early stages, while we sort things out physically and emotionally. They do take a little while to "kick in," and they can be somewhat personal, meaning that you may have to try a few before you get the relief you want without any other unnerving symptoms, but it’s worth looking for the relief if you feel unable to handle it yourself.

But the most important message is to forgive yourself. Forgive yourself for getting this. Forgive yourself for hating this. Forgive yourself for needing help and for not being able to "shrug it off." Just remember that you WILL get through it. We’ve all been over this bridge (or through this muck, whatever metaphor you’d like to use), and we’re proof that it gets better.

Oh, the crying may or may not be good for the moisture on your eyes ~ kind of like licking your lips doesn’t moisturize them when they’re chapped. I’d still use the artificial tears regularly, if I were you. Tears from strong emotion have different mineral content than "regular" tears, and I’m not sure whether that’s good or not.

[kylesmom1007]

#1073081

I am still using the artificial tears and heading to the endo tomorrow for my first visit with him. Your support is invaluable and I love that your answers are so applicable to real life. Thank you, thank you, thank you! ” title=”Very Happy” />

[Ski]

#1073082

You are SO welcome! I’m glad we’re here to help. ” title=”Very Happy” />

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