[elf]

#1074376

When thyroid levels can be brought to normal (with drugs, RAI, or surgery), eyes sometimes do get back to normal. But generally, the eye disease becomes a disease on its own, with hard-to-predict development. Fear not, the technology is evolving and the eyes can be adjusted with minimal invasiveness – but first, your thyroid levels need to be taken care of, and your eyes need to get out of the "hot" stage, and into the "cold" stage (where no eye development is happening anymore).

[Lorrainydaz]

#1074377

Thanks, that helps! After my biopsy (my eye surgeon took out some errant muscle that was also growing where it shouldn’t have been) my eye looked almost normal, except for a little lid retraction but slowly it’s become "my big eye" again! I guess I’m lucky though since my thyroid has just begun to go crazy this is the real only symptom I have.

[Starlite]

#1074378

When I was first diagnosed with Graves 12 years ago, it was bad. Both of my eyes bulged out of their sockets horribly. I took the meds & everything went away, even the buldgey eyes. The meds may do it for you.
Now I have just come out of remission & all the same symptoms are coming back. I have not seen an endo yet so I am not sure of which treatment I want.

[Ski]

#1074379

Conventional wisdom is that the eye disease is completely separate from the thyroid disease. It is very common for both to occur in close proximity to each other, but for some people the two are separated, sometimes by years. There are a few symptoms (lid retraction, for example) that can come from excess thyroid hormone, but the pressure behind the eyes is not due to that. The eye disease has its own unique antibodies that attack either the muscle tissue or the fat tissue behind the eyes (apparently people who are younger at onset have more fat tissue affected, while patients who were older at onset have more muscle tissue involved). At our most recent conference, they actually said that there may be evidence emerging that a hyPO condition is more likely to create an eye symptom flare-up, but that hasn’t been concluded quite yet.

There was one study that suggested RAI may temporarily aggravate eye symptoms, so you would want to discuss that with your ophthalmologist if you were considering RAI to treat your thyroid.

Most of our conference in October was devoted to Thyroid Eye Disease, so we got a lot of good information about the available treatments. For the most part, if you have just begun your symptoms, "wait and see" will be the treatment unless you experience severe pain, difficulty moving your eyes, double vision or compression of the optic nerve. If you DO have any of these symptoms, there are several treatments and practices you can use to help. Once you’ve gone into the "cold phase" you may see some improvement, then when you’re sure you’re stable, the surgical treatments can be explored. Please let us know if you need any of that information.

[Lorrainydaz]

#1019833

I’m new with Graves and I have oh so many questions. I was diagnosed last year when my eye bulged but it took them over six months and a biopsy to figure out it was Graves. At that time my thyroid levels were good and if it wasn’t for my eye surgeon recommending that my doctor run the antibodies test I would still be wondering what was going on. Fortunately, my thyroid just started to go haywire – up til now the antibodies were keeping it in check – so my endo is starting me on meds but I’m wondering, if I have the surgery, would my bulging eye return to normal once my levels are in check or will I need surgery on my eye to get it back to normal?

[lmatthews522]

#1074380

Ski,

I am very interested to receive information you have available from the convention related to Thyroid Eye Disease. Please let me know if you need my email or home address to send this information.

As I mentioned in a different post yesterday, I too was recently diagnosed with Graves Eye Disease and while the bulging has gone down considerably…my meds forthe thyroid disease have changed and I am uncertain of the possibility to have radiation treatment for my eyes. While I now understand these are two different diseases, I feel that since the eyes are back to normal do I need to consider radiation or any type of surgury down the road. Any help you can provide to give me insight on research or studies done related to the eye disease would be appreciated.

Many thanks for your help…while new to this sight this is the first time in years I feel I am amongst friends.

[Bobbi]

#1074381

There are some eye symptoms that are directly related to thyroid hormone levels that can make us think that our eyes are actually bulging, when they are not. These symptoms typically go away once we get our thyroid levels controlled back in the normal zone. The major one I’m thinking of is upper eyelid retraction. The excess levels of thyroid hormone cause the muscles in the lid to pull back (retract). It leaves us with a slightly gaping stare. When we are restored to normal thyroid levels, the retraction often goes away.

Actual exopthalmus (bulging eyes) will not, as far as I know, go away with the normalization of thyroid levels. It typically needs the "hot" phase of the eye disease to be over before any true protrusion moves back toward normal.

I don’t know how true this is, but I remember long ago (when I was going through the eye disease) that someone posted that you could tell the difference (somewhat) between lid retraction and actual exopthalmus by looking at what part of the white of the eye was showing. If there was pronounced white around the TOP of the colored part of the ey, that was often due to lid retraction. If there was white showing on the BOTTOM of the colored part of the eye, this would be more an indicator of protrusion due to the bulging muscles. I used to scan my eyes a lot, looking for the white exposure, as I went through the hot phase of the disease.

As to whether or not you need worry about radiation or surgical intervention, no one can tell you — and probably not even your eye doctor at this point. It may comfort you to know that the vast majority of us do not get any significant eye muscle changes with the TED. A good number of us get "some" changes, but they do not, typically, require medical intervention. I had at least two years of TED issues (and the accompanying panicky feeling), but when the hot phase ended, my eyes returned to (mostly) normal. So, try to stay as calm as you can about it. I do know that’s very hard to do. But since there are no preventive measures possible, being under an opthamologist’s care, and having the doctor monitoring the development of the disease is the most important thing you can do for yourself at this point in time.

Ski will probably get back to you about the specifics from this year’s conference. I did not attend, so I cannot address those issues.

[Ski]

#1074382

Hi lmatthews,

If your eyes have stopped bulging, then there should be no need for you to discuss treatment at this time. The only exception would be if the pressure behind your eyes persists ~ for some people, the pressure does not produce bulging eyes, but it produces dangerous pressure levels. Your ophthalmologist would be the one to confirm that, but typically if there is an issue, the patient can feel it.

For the most part, we follow the path Bobbi described ~ we have some symptoms, they increase & decrease randomly for a while (that’s the "hot" phase), then they stop fluctuating, then we experience some improvement, then all changes stop. After there have been no changes for at least six months, the doctor will typically proclaim that you are in the "cold phase," and you can evaluate your eyes and decide whether you want to pursue surgical correction. Typically the answer will be no, but those with severe eye changes may want to either correct bulging that did not resolve itself or reduce some pressure so that the eyes move more comfortably. This entire curve usually lasts between 1 year and 3 years (smokers are more likely to experience longer periods of disease).

When we are in the hot phase, surgery is not recommended unless the optic nerve is in danger of being compressed by the pressure. If the pressure is very severe, you can use steroids (in various forms ~ oral doses, intravenous high "pulsed" doses, or injections into the fluid behind the eyes), directed radiation (this is a radiation beam aimed at your eye socket), or a combination of the two. These are used to try and avoid surgery during the hot phase, since surgery can bring on further changes and negate the positive effect of surgery. Neither steroids nor radiation work well for patients in the cold phase, they are solely for patients in the hot phase.

I hope this helps!

[hypermom72]

#1074383

Hi, I’m new to this Graves’ Disease site, but I may be able to offer some helpful information.

I am 36 years old and have been hyperthyroid for over 3 years now.
I also had the eye bulging for about 6 months.
My eyes were so dry and actually, I only had the problem with my right eye.

Thankfully, my new endo sent me to an ENT surgeon on December 29, 2008.
I had a total thyroidectomy due to the fact that my body was not responding to PTU or methimazole.
I also had to take a beta-blocker daily to keep my heart rate at 90.
Many sleepless nights, headaches, hot flashes, mood swings, irrational behavior, aches, pains and bulging eyes.
It was NUTS!
I had my tt on January 7, 2009! I was so scared from reading all the horror stories on the internet.
Honestly, it was one of the best day of my life! For three years I have felt like I have the flu. I was tired and cranky.
My body was miserable!
I’m two weeks post op from the TT and I feel wonderful. Still a little bit tired, but that is to be expected.
My scar is just a small line and my eyes are FINE! I worried about that too.
I guess it’s different for everyone, but I wish I had done surgery a year after not responding to treatment.

So, good luck in what ever option you choose, but this TT surgery turned my life around.
I was missing out on life from feeling so awful all the time.
I did have a really sore throat for about two days and I slept for the most part due to the pain medication.
I stayed in the hospital over night and the surgery lasted about 4 hours.
My neck is half the size it used to be and I can actually breathe and swallow.
Also, I worried about gaining weight. Honestly, I have lost weight since my surgery. I think the PTU was wearing me down so much that I was packing on the pounds.

Well, that’s my little story and good luck.

[Lorrainydaz]

#1074384

To Hypermom72, thanks for your post, that really helped. Your symptoms sound identical to mine but I’m hitting 53 (on Monday) and I’m thinking, this is nuts, let’s take the thyroid out and get on with my life. I hate worrying about the PTU side effects, I’ve only been on it since Sunday but I’m so tired and so anxious lately it just adds to the stress. I appreciate you sharing your story. Thanks!

[adreeanna]

#1074385

Lorraine, I am coming up on 48 and have had a roller coaster ride with Graves for just over 10 years now.
I had nothing but trouble for 3 months while first taking PTU and MET. Terrible side effects, constant roller coaster rides with my chemistry levels. I stormed in to my endo’s office and said ENOUGH! He scheduled RAI right away. I guess that patented Graves stare, and the mood swings convinced him that dealing with me was not the way to spend his afternoon! But the story doesn’t end there.
Next friday I have finally been scheduled for a total thyroid ectomy. Strangely enough, When I had the RAI 7 years ago, I felt ok for about 2 years…since then, its been up and down. I wish I had known then what I know now and I would NEVER had agreed to the RAI, but would have pushed for surgery right off the bat.
It worsened my Thyroid Eye Disease, and as of Sept 2004, I have been in a continuous active phase with it.
I noticed one post suggesting Orbital Radiation as a treatment. Am not sure where about they are still doing it, but current research is starting to retract their opinions on it. In most cases it is totally ineffective, and in some cases, can actually make it considerably worse. Steroids as well are under question as a viable option, because typically when the steroids are stopped, the disease comes back with a bang. There is research being done right now by a group that is suggesting that early and total removal of the thyroid could actually help in reducing the severity, and longevity of the eye disease. This is the other reason why my doctor finally suggested removal. In truth, I can hardly wait, as this has to have been the worst 10 years of my life.

[Ski]

#1074386

We did have some doctors speaking about orbital radiation at our conference in San Diego last October, and they pointed out that the studies regarding orbital radiation had some flaws in them. One of the most quoted studies used orbital radiation only on patients in the cold phase, and the more recent studies have shown that there is only benefit for those in the hot phase, so that first study on patients in the cold phase, naturally, concluded that orbital radiation was ineffective 100% of the time.

The doctor who spoke to us pointed out that patients who respond well to oral steroids during the hot phase are also likely to respond well to orbital radiation in the hot phase. The treatment he preferred was "a little of each," reducing the risks from each, and sometimes producing better results than either treatment alone.

[skinny_chic]

#1074387

I read something about orbital steroid injections treatments for graves disease. That may be an alternative to surgery..

[Ski]

#1074388

We also heard about these at the October conference ~ again, typically used in the hot phase to reduce the damage done at that time. The hope is that by reducing the swelling during the hot phase, there is a better chance that the patient’s eyes will return to normal after the cold phase is over. The bulk of the long term damage is caused by scar tissue so, less scar tissue, less long term damage.

Typically surgery isn’t even considered until the patient has long since entered the cold phase, so orbital injections of steroids would not help at that point.

[Author]

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