[sutan351]

#1019368

Hi Everyone, I’ve been reading dialogue on this site for a few years, but now need a little assistance from this knowledgeable group.

My journey with Graves and Thyroid Eye Disease began in October, 2006. I began to notice double vision that gradually worsened. I received confirmation of Graves-TED in Jan, 2007 and have since experienced the continued peaks and valleys of this disease. I started Methimazole in Jan, 2007 and have been under the care of a local endocrinologist that was willing to keep monitoring my blood levels and keep tweaking my dosage. As commonly occurs I would go Hyper…adjust to a higher dosage and then come into normal ranges. I suffer from fairly severe proptosis of my eyes and continue to have double vision, although my ophthalmologist says my eyes seem to have stabilized at this point.

My question for this group, involve decisions about RAI and Eye Surgeries. As many of us have experienced there are no quick and easy answers. I have been told I can stays on the meds and just deal with my eye condition OR take the next step with RAI and Eye Surgeries (Orbital Decompression, Strabismus, Upper and Lower Lid etc). I am apprehensive and undecided having heard both pros and cons of these decisions. But I know after two years with so many up and downs of my blood levels…RAI is a likely next step. My Dr. has prescribed prednisone to lessen the impact to my eyes after RAI. I have also heard some say the RAI helped their eye condition. The prospect of eye surgeries is also very concerning and I have heard numbness often occurs after Orbital Decompression. My Ophthalmologist wants to do both eyes at the same time.

Can anyone help….

What were your experiences after RAI ….did your eye condition worsen?
How long did you wait before having subsequent eye surgeries?
What were your experiences with those surgeries?

Any help is appreciated….

Sandy

[Ski]

#1071198

Hi Sandy,

The first thing I want to clarify is that Graves’ thyroid disease and Thyroid Eye Disease (TED) are actually two separate diseases. Treating the thyroid does nothing for TED. The information right now indicates that we probably have several kinds of antibodies that come along with Graves’ thyroid disease, and the antibodies that lead to TED are included in that group, but they act independently of your thyroid disease status. Stimulating our immune system through stress or other means will make all antibodies more active, so it may appear as though the diseases are on the same "wavelength," but they are treated separately and have completely different life cycles.

So, treating your thyroid is one thing you are wrestling with. You say you are on ATDs and they are working, but you have fluctuations that require adjustments in your ATD dose, so your doctor has begun to suggest a more permanent solution for you. It IS possible to stay on ATDs long term, even if remission is not achieved, so that is definitely one choice you have. There are some long term effects to consider, most prominently the effect on your liver, but with proper monitoring you should be able to determine whether the risk is acceptable for you. In other words, if your liver function is fine now, then monitoring it as you take the ATDs will help you find out when and if function begins to decline, which would be a signal that you should seriously consider some other form of treatment. There is some evidence that continuing treatment with ATDs helps to reduce antibody levels overall, so it’s possible that you could see some improvement in your TED symptoms with ATDs if your TED is still active.

Treating your eyes is another question. TED has a pretty well-defined disease curve ~ typically there is a period of activity when your proptosis and other symptoms fluctuate often, after which there is a period of relative stability, followed by a period of slight improvement, and finally a completely stable point. The final, stable point is not necessarily back to normal, but it signals the end of the antibody attack. That is what we refer to as the "cold phase" of TED, and this is when it’s safe to look at surgical solutions for the scar tissue that remains. The entire disease curve can last anywhere from one to three years. If you have not yet hit the "cold phase," then surgery would not typically be recommended. It can launch another antibody attack, which can reverse the benefits of the surgery and leave you with fewer options once you DO reach the cold phase. The decision to pursue surgery should be discussed with an ophthalmologist (preferably one who is also trained as a surgeon in specifically these procedures) so that you are sure you get the results you want. I never needed eye surgery, but I know lots of people who have had it, and despite the fact that it sounds scary to put "eye" and "surgery" in the same sentence, they’ve recovered well. The newest techniques are less and less invasive and get better results. You should know that there is a definite "order" to these things. If you will need all of the surgeries, it is best to do decompression first, strabismus (eye muscle) second [this solves the finer details of double vision], and eyelids last. This keeps you from overcorrecting or removing tissue you may need later.

If you are looking at the possibility of RAI or surgery for your thyroid, you should know that RAI has resulted in "temporary worsening" of TED symptoms for some patients. In the one study we have, 16% of the patients who had RAI exhibited this "temporary worsening," though neither term (temporary or worsening) was well defined. Zero percent of the patients who had RAI along with Prednisone suffered this period of temporary worsening, but of course Prednisone carries its own risks. In the event that you are considering RAI, this should be something you discuss with your opthalmologist as well, to determine your personal risk for difficulty following RAI. If you have already gone through the hot phase of TED and are now in the cold phase, I believe the risk of worsening afterwards would be less likely, but the doctor will know more about that and help guide you.

To avoid all of that discussion, thyroid surgery would be another option for treating your thyroid.

I realize that you really would like some kind of conclusion here, and I’m sorry we can’t give it to you. Each process carries risks and benefits, and you need to weigh them for yourself to decide where your comfort zone is. Write down a list of all your questions, and take them to both your endocrinologist and your ophthalmologist. Remember that they are allowed to have their opinions and share them with you, but they are NOT allowed to dictate your choice as to what’s next. That is up to you, it’s your body, your disease, your consequences, and so ultimately your choice in the absence of any other medical condition that precludes one treatment or another.

[npatterson]

#1071199

Hi Sandy,

Ski just gave you an EXCELLENT overview of RAI and Eyes. I will give you some personal experience–but you have to remember that my journey started over twenty years ago.

I was diagnosed with Graves’ in about a six-month time frame. I was seen by doctors who did not know "me". I had a small dose of RAI. Two weeks later my eyes "felt funny." They put me on Synthroid immediately. The connection between RAI and eyes was not known, and the thought was that TSH levels were too low.

What we know now is that people with pre-existing eye diseaseare at great risk for a worsening of the eyes, while those with no pre-existing eye disease are not predisposed to reacrtive eye problems.

The fact that these doctors did not know "me", and therefore did not recognize my pre-existing eye disease. It meant nothing at the time. I had already developed a prominent "thyroid stare", but no one recognized it (not even me). They would not known to give me prednisone. During the next three years, while battling the difficult to stabalize thyroid levels along with my buldging, red, double-visioned, eyes…when I would have bouts with Pretibial Myxedema, I would get a shot of prednisone. I would ask: "How come I get a shot in my ___ for the ____ on my legs, and my eyes get better?" I was pretty much just joking around, but about a year or two later, the connection was made.

My eyes took longer than most to become stable–in my case meaning the swollen muscles did not diminish, but had turned to scar tissue. They were no longer inflammed, just bigger than I would have hoped for!

Luckily, I had an ophthalmologist who did know that there was surgery that could be done, and he gave me HOPE for all that time. The sad thing was that people all over the country were being told that "there was nothing that could be done", and to "just learn to live with it".

I did have the surgeries, and the whole process took exactly one year. I had each procedure done three months apart. They did both eyes each time. I was out of work for two weeks each time–mostly waiting for the bruising to go away.

I hope this gives you some answers, and I think you will hear from others.

[sutan351]

#1071200

Thank-you Ski and Nancy for your very thoughtful and informative responses. I have been reading your responses on this site for many years and learn more each time. And there is MUCH to Learn!

As mentioned I was diagnoised in Oct, 2006 and have waited until recently to make a decision on RAI. During this time I went through the ‘Hot’ phases of TED and have since plateaued into a ‘Cold’ Phase. Although I still have prominent eyes, the thyroid stare and double vision (although less extreme than 1 yr ago) I decided to move ahead with RAI, because my neuro-opthamologist (who will be performing eye surgeries) suggested I treat my thyroid before moving forward with any eye surgeries. I also needed continued adjustments to my Methimazole throughout the past few yrs. My Eye Surgeon believes Orbital Decompression will really help – although I had another Dr. that suggested lowering my lids would be a better option than getting into the DO Surgery. It’s hard to know who to believe and you have to deciper and read a lot on information…which is why I love this site.

I did the RAI last week and only needed 10 mq with limited confinement after. I have been on Prednisone…40mg 1st week – tapering off each week. So far I don’t have any noticable side effects or worsening of my eyes. I go back to my Endo in a few weeks to check my blood levels. At this point I have no idea where I’m at on the Hyper/Hypo Range.

I’ll be sure to post back with an update and future questions.
Sandy

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