[Ski]

#1072218

Hi Catsmum,

The signs of TED, at first, are usually difficulty/pain moving the eye, and a feeling of pressure behind the eye, which typically is worse on one side (left eye vs. right eye). Sometimes there is double vision from the movement of the muscles being restricted in one eye due to the pressure. That’s why the doctor had her follow an object ~ if both eyes are tracking together, effectively, that’s a good sign.

Autoimmune disease in general can produce the grittiness, sensitivity to light, and dryness. Believe it or not, excessive tears are actually a sign that our eyes are too DRY. Our tears, as Graves’ patients, become less thick and more watery, so the tears we DO produce don’t effectively moisten the eye, and then the eye sends more tears out to try and fix that, which are (again) too watery, so on and on it goes. If she uses artificial tears (NOT get-the-red-out drops) without preservatives, and uses them often, some of the discomfort should go away. As Jake mentions often, the drops we take today are actually helping us to feel better tomorrow, so using them even when our eyes feel fairly well will help continue that good feeling. When she’s in a situation that particularly stresses the eyes (on the computer, or in a windy place), using them every 15-30 minutes is not too often. That’s why you need non-preservative drops. At that pace, the preservatives alone can be an irritant.

When a patient is dealing with TED, the hot phase/cold phase works like this: at first, the eyes go through changes rapidly, bulging and "un-bulging," if you will, seemingly without any particular pattern. That is the full-on HOT phase. Following this, there is a period of time where things are stable ~ the eyes may remain bulging out, but they won’t be going back & forth rapidly (rapidly being a relative term, of course ~ it’s not as if you could watch them go in and out). There may be SOME changes during this period, but not much. Following this, there is a brief period where improvement occurs, JUST improvement. After that is over, the cold phase begins. The cold phase typically must be diagnosed in retrospect ~ in other words, the doctor looks back and says that six months have passed with no dramatic changes, so you are in the cold phase. The differentiation is important because you don’t want to pursue any surgical correction to the changes until the cold phase. If you do pursue surgery while the eyes are still having some changes, you can trigger another kind of "hot phase," which can undo the benefits of the surgery. Once the patient is in the cold phase, surgery can be pursued without worrying about that. This whole cycle typically takes between one year and three years. People who smoke will be more likely to experience the longer period of time.

Does that help? Let me know if you have more questions.

[catsmum]

#1019525

Hi,
Could someone give me a rough guide to the phases of thyroid eye disease? What are the first signs, what to look out for etc. Also, I’ve read posts with people refferring to ‘cold’ or ‘cool’ phase – what’s that?

My GD daughter has complained that her eyes feel gritty, water constantly for no reason & are sensetive to light. he mentioned this to her endo last week & he said she showed no signs of TED but he only checked her eyes by asking her to follow a pencil from side to side without moving her head – not convinced this was a thorough test. Should we be concerned?
Catsmum.

[catsmum]

#1072219

Thanks, Ski

That info really does help us understand this issue.
Many thanks,
Catsmum

[braddpa]

#1072220

Catsmum,

Please be vigilant with your daughters eyes. I had no real eye symptoms & was checked for TED a couple weeks prior to recieving my RAI by a Graves ophtalmologist specialist and deemed not to have TED. Within 3 weeks after my RAI, I was having what I thought were seasonal allergy problems and when I saw another ophtalmologist for problems with my corneas I was then diagnosed with severe TED and was started on high doses of steriods to combat it. Thankfully they caught it early and I was luckier than some. I still had bulging eyes and had to have OD surgery…but some are very much worse if the disease is not treated early. I did not really know what the symptoms were because I had only been diagnose with severe Graves Disease a month earlier. Educating myself before hand about TED would of helped. But, the Dr said I did not have it…so I thought I would be in the clear.

Understand that the doctors are very good at what they do…but, each person is different and even if you do not have signs this week…next week may be a different story. You are doing the right thing…ask questions and research. The more you know and understand the easier you will feel about dealing with the disease.

All the best,

Patty

[hyperm]

#1072221

Hey your daughter should be entitled to a free eye test. My optician was great when I explained that I had GD and she had a very in depth understanding of how causes weakness in the muscles etc… A very thorough test!

HTH

[catsmum]

#1072222

Hi HTH

My daughter is still in full time education so gets free eye tests. I took her to the optician as soon as she was diagnosed & had an eye exam. I told him she had Graves and was concerned about the possible eye problems but he just said ‘her endo will keep a check on that’ – maybe I need to search out an optician with expertise in GD. ANyone know how to locate one of these in the UK?
Catsmum

[Ski]

#1072223

Sorry, I can’t help with that part, but I can tell you that you ought to be looking for an ophthalmologist instead. Opticians deal with eyeglass prescriptions and such, but ophthalmologists are the right eye doctor to deal with TED. Even without symptoms, it’s good to begin a relationship so that if symptoms DO begin, you have at least begun the process and have someone you trust to consult. In addition to that, it’s helpful to have a doctor who knows, firsthand, the "before" face, so they have a full realization of the effects TED has had. Without that, the doctor may think you have mild symptoms, when that may not be so.

One more thing ~ when doctors have conducted autopsies of Graves’ patients, they have found SOME evidence of TED in all of them. Only a small percentage end up with the very worst of the problems, so keep that in mind.

Also ~ one study did show a possibility of "temporary worsening" of TED symptoms following RAI (neither term being well defined). It occurred in about 16% of those patients. The temporary worsening was completely eliminated when the patient had a concurrent, short course of steroids surrounding the RAI (a couple of weeks before/after). For that reason, if you pursue RAI, it’s good to have a discussion with your endo and also an ophthalmologist to determine whether your TED symptoms outweigh the risks of taking steroids. [By the way, this specific study has not been effectively reproduced since, but the information is interesting, at least.]

[DianneW]

#1072224

Just for the record, only one study has been done in the U.S. using exactly those methods, but this doesn’t imply that similar studies were done and failed to reproduce the results (that RAI makes ophthalmopathy worse in a percentage of patients). Similar studies in Europe have supported those results. Most experts now recommend that patients with significant TED either use Prednisone when having RAI or use some other treatment for hyperthyroidism.

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