[neskirimli]

#1060494

Hi,

I have Graves like 3,5 years now and having treatment with medication. 1 year ago my undereye started swallowing and then my left eye lid retracted. first 3 months were too painfull and no endo or eye doc could help on that.

I have tried acupuncture which helped a lot on the pain and botox to lower the eyelid which drived no change.

Anyway its been a year and there is no change on my eyelid. left is up and right one is down to balance the other (saying my doc). I went to 2 other endo and one is saying now you need to have you tyroids removed as you tried too long with the medication. and other is saying that my tyroids are so small its nearly impossible to remove and even if I could have them removed, immune system will continue its attacks and this is gonna make my eye condition even worse.

The one saying lets remove it also says, with surgery, immune system wont continue its attacks but it would with RAI. and with surgery my eye condition will get better in time or else I can have eye surgery.

So I am really confused and having hard time tounderstand what is right for me..
Any suggestions?

[Kimberly]

#1182949

Hello and welcome! We are fellow patients here, not doctors, so we can’t give medical advice – but here are a few thoughts on the three treatment options.

1. Anti-thyroid drugs. How are you doing on the medication? Are your levels stable? If your levels are stable on a fairly low dose and you aren’t having any symptoms of hyperthyroidism or hypothyroidism, many doctors will let you stay on the medications long-term without having to choose RAI or surgery. However, you might have to “shop around” to find a doctor who will help you with this approach.

2. RAI. The latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists does NOT recommend RAI for patients with moderate to severe eye involvement, as the eye issues could become worse. For mild eye involvement, some doctors will recommend a course of steroid therapy in conjunction with the RAI to reduce the risk of eye issues. However, it’s important to be aware that steroid therapy can come with significant side effects.

3. Surgery. We have many regular posters here who have chosen surgery as their treatment option and have been pleased with that decision. I have never seen any studies that say surgery makes the eye issues worse; in fact, I’ve heard stories from a few patients who thought their eye issues improved after surgery. Also, I’ve never heard that surgery couldn’t be done because a thyroid was too small! If you are interested in using this option, I would recommend that you ask for a consultation appointment with an experienced surgeon. If you choose this option, you want a surgeon who has done a LOT of these procedures.

I hope that this info is helpful – please check back to let us know how you are doing!

[neskirimli]

#1182950

Hi Kimberly,

I am very well aware that we are all patients. I read lots of topic and found very very usefull. First of all I want to thank whoever built this page and also you and others like you trying to make us less lonely with this disease!
Thanks!!
No one can understand how a person can feel this lonely and helpless other then who has that kind of disease..

1. Actually medication can stabilize my disease. I have hyper and I am down to 1 tablet per day now. My long term endo says as long as my levels are ok and my liver takes it we need to continue on drugs. But this eye conditions really scares me and it is not stable. I really am afraid exhophtalmy will occur (

2. None of the doctors I have seen suggested steroids because of the side effects. And they all said my condition is not that bad.

3. The last endo I saw simply said, after 18 months if drugs couldn’t heal you it will never heal. And since the time passing your eyes will suffer more. He also said a good surgeon can remove the whole tissue how small ever it is. But my long term doc said it is too hard to do so.
I’m planning to see more prof endos now. But it is always helpfull to get info from those who has past experience and knowledge like you

Thank you soooo much for taking time and responding. Really really appreciated..

[snelsen]

#1182951

Hi, I may be telling you things you already know. especially regarding which doc is the right doc to evaluate your eyes.
1. I am assuming you got the diagnosis of Graves’ based on how you felt, and your labs. If you feel good, “like your old self, pretty much” it seems that you want to continue with your endo, having thyroid labs and liver function labs. That is on of the treatments for Graves’ and that is fine! If you become HYPER, and the ATD’s do not seem to help you, Kimberly has done a nice job of listing your three choices.

2. I am guessing that when you mention steroids, you are referring to your eye symptoms. There is a certain reason for using steroids for TED (thyroid eye disease) and it is usually this one reason. That your eyes and more precisely, the eye muscles, are pressing more and more on your optic nerve. This CAN result in being permanently blind. MOST people with TED do not have that problem (I did, but I had severe TED.) Most people have mild or moderate TED. *** The doctor who should be talking to you about your eyes, should be a good ophthalmologist (not optician ) or even more preferable, a neuro-ophthalmologist, if you have one in your area The ophthalmologist should have had experiences with TED and TED patient.
Oh yes, TED, is thyroid eye disease.

Endocrinologist are not the docs to diagnose it or treat it, or even talk much about it. They don’t “do” TED.

3. Either your eyes will, or will not, get worse. Who the heck knows? Generally, TED “lasts” between 1-2 years before your eyes are stable (stop changing.)

The size of the thyroid is not tiny. Here is a good reference to take a look. If you click “parathyroids” on the left hand side of the page, you will see where they are located. They ARE small, and sit on the thyroid gland.
http://www.innerbody.com/image/endo04.html

I suspect your long term doc is not a general surgeon who “does” at least 50 or more thyroidectomies a year. This is the surgeon whom you would want to do your thyroid surgery, if you ever had it done.

But, maybe you are thinking about eye surgery/probably so. The
“right” docs to several different procedures depending on your symptoms are:
a. For decreasing vision-an oculofacial surgeon and sometimes an ENT doc along with that doc. This is a more complex procedure
b. For double vision-usually a pediatric surgeon is best. They do a lot of this surgery on kids. This is a simple surgery.
c. eyelid surgery is usually done last, or it is a waste of time. your eyes need to be as “bulgy” as they are going to get, cause the bulging is what causes the lids to be UP and DOWN.

In my opinion, I cannot agree with the doc who said with surgery–are their eferring to thyroid surgery???that your immune system won’t continue it attacks. Graves’ is an autoimmune disease.

With the usual caveat, I am speaking from my own experience with Graves and TED, incidentally, you will see that I got thyroid eye disease almost 50 years after I had Graves. And my antibodies have always been elevated, and have never changed. Treatment is based on thyroid labs and liver labs.
ok..that is it for now.

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