I was diagnosed with T1 at age 57 about 15 years ago. After getting double vision checked out, I’ve now been diagnosed with thyroid eye disease. I’m anxious to hear about others’ experiences dealing with this added burden and any advice they might have for me.
I’m not familiar with this, but found info here helpful. Indicates may improve with treatment.
Maurie, it broadly seems that thyroid eye disease is an autoinflammation problem and thus in the same broad category of other autoimmune disorders us T1’s are prone to.
Have you had detailed thyroid tests done? A lot of us are hypothyroid but that’s not necessarily the case for TED which seems to tend towards the hyperthyroid. Any advanced imaging/scans of the area around your eyes?
I discovered myself a couple years ago that my retina specialists (who I had been seeing for 40 years of T1) knew little about other eye problems (in my case, Fuch’s dystrophy) and had to add yet another eye doctor to my list of regular appointments. Are you seeing a specialist in Thyroid Eye Disease yet?
I had an extensive work-up at Mass Eye and Ear where they did both an MRI and a full panel of blood tests. It seems that I am not yet showing any inflammation markers and my hormone levels are in the normal range but my anti-thyroid antibodies are sky high. I’m seeing a specialist in the Eye Plastics Department of Mass Eye and Ear and feel in good hands there. However, I think I may have to look for a new endo at the Joslin - someone who has expertise in both diabetes and thyroid.
I’ve been told that I’m at the beginning of a long, frustrating process at the end of which may be some effective treatment. I’m just trying to see if anyone else has gone through the process.
Thanks for responding,
Could you elaborate on what the process is? We’re no strangers to eye treatments around here.
I get Avastin injections in the eyes every 6 weeks to reduce my inflammation, something I was also told would happen for my foreseeable future. I don’t know if there’s a different treatment for TED inflammation, or if it’s all the same.
TED isn’t a problem with the eye itself but with the muscles around the eye that have to co-ordinate eye movements. What I got from my first appointment is that the disease takes about two years to develop and run its course. Sometimes it goes away by itself. Usually it gets worse over time. There are three basic treatments. Surgery on the muscle that is enlarged, steroids to reduce inflammation and a new infusion treatment that is a couple of years old. It seems to be a promising treatment but one of the potential side effects is hearing loss. Until the TED develops further it’s too early to explore the treatment options in detail.
This is interesting. I had chemo treatments in 2013, and developed hearing loss and tinnitus soon after. Just searched and found this has been noted as potential post chemo side effect. But had not been told that. Mine is mild and have not used hearing aids (yet) !!!
During 17 year cicada invasions, its very annoying!!!
I had Graves disease treated with radioactive iodine, several years ago. Essentially my eyes were bulging and right at the point of that being permanent. They still have a very puffy appearance at times. I take levothyroxine now that they killed off my thyroid, to prevent being hypothyroid. I will say, I go to a huge eye clinic. One branch does my retinopathy, one will do my cataract surgery one of these days. One handles other things like corneal scratches or whatever. At no point have I ever ever been offered a visit with the thyroid eye dr. I believe I should have been allowed to see him, since I do have some issues, but no not one time did they ever let me. I am glad this part of the thyroid issue is now being addressed. Just keep tabs and make sure you have your thyroid screenings.
Sorry to read about your thyroid eye disease diagnosis, Maurie. This is one I hadn’t heard of before. Like many here, I deal with hypothyroidism. I don’t think that my thyroid antibodies were measured back in the '80s when I was first diagnosed. The last few times that I had them measured recently, they were negative.
I think you are smart to try to connect with a peer support group if you can find one. One big lesson I have learned when it comes to medical diagnoses is that the doctors see things differently than patients. Our interests have significant overlap yet are not completely congruent.
I know we need to consult with them and usually follow their recommendations; they have devoted their professional life to studying the conditions that we patients must deal with. They are the experts and it sounds like you are dealing with some competent docs.
But they don’t know everything and the patient community can often fill in many of the missing pieces of information or at least offer some good questions that you should pose.
Someone who is five years ahead of you on this path can likely offer you some sage advice. Things on the order of “I wish I knew then what I know now” kind of advice.
We live in the incredible age of the Internet and your predicament is one where information is king. You just might find someone who can offer you some help that the doctors cannot.
Good luck, Maurie. I hope your case turns out to be mild and short!
Edited to add: I just did a quick search for “thyroid eye disease support group” and this site looks worthy of some follow-up.
Thanks for the good wishes and for the link!
I don’t have personal experience. Never had my thyroid checked, never seemed necessary.
I did have a colleague at a past workplace, who was diagnosed with Graves’ disease, and we commiserated some about hormone issues. She eventually needed the radioactive treatment mentioned above, then lifelong oral hormones. She was a young woman in her 20’s at the time. She had very mild changes to eye appearance (I would not have noticed if she had not told me about her hyperthyroid) - if anything I would have said she looked a little tired sometimes. Getting treated and on the thyroid meds resolved all those issues.
Probably not relevant, but you said your thyroid levels are normal, but you have very high anti-thyroid antibodies. To me that begs the question, whether your normal thyroid production is being inactivated by antibodies, so your effective levels available to your cells are actually abnormal. None of your treatment options sound ideal, I would ask if another unnamed option might be to treat your thyroid levels if they believe the antibodies are blunting the usable levels.
I too at first assumed that high thyroid levels associated with Graves’ disease was the cause of Thyroid Eye Disease.
I may have based that assumption on something I learned 40 years ago in college which reflected old-school thinking as to cause vs effect.
But just in reading the OP’s posts and labs and recent medical literature I’ve come to realize that Thyroid Eye Disease is today thought of as an autoinflammation attack on tissues around the eye that seems to be entirely connected to identical antibodies that also attack the thyroid.
Just like hypothyroidism is very common among T1 diabetics and seems to be part of a bigger cluster of autoimmune diseases, thyroid eye disease happens at higher rates (or maybe is just more severe and/or more commonly detected?) among diabetics. Some of here make even further leaps that other inflammations that diabetics are prone to, like frozen shoulder/adhesive capsulitis, seem likely to be autoimmune at their root as well.
Hi Jag - Nice to see you here and thanks for your suggestion. I’m pulling together a list of questions for my next follow-up and that one will be on it.
Thanks for the clarification - I wish my doctor had made that clear. One of the decisions that I have to make is whether to allow my current endo to monitor my thyroid or whether I need a thyroid specialist. If TED isn’t directly related to thyroid function, then maybe I can depend on my endo at least for time being.
I diagnosed myself with Type 1 diabetes at 36 and in my 40s Grave’s disease (both eventually confirmed by my doctors. Because
of my high blood sugar and heart rate radioactive iodine was considered better option to treat my hyperthyroidism.
Later, after my eyes started bulging and I couldn’t drive in sunlight, I had plastic surgery on my upper and lower eyelids Upper was not paid for by insurance. It took a year before the surgeries…the storm had to pass. For a few years, even after surgery I taped my eyes shut to sleep and put eye gel in my eyes.
I take Synthroid now and the disage needs adjustment evey few years up or down a half pill.
I weigh more than I would like because pills can’t replace a real thyroid’ job completely.
My symptoms of Grave’s were weight loss, rapid heartbeat. trembling hands, and pamic attacks while driving at or high pressure computerized tests. I figured out that my feeling of panic was a symptom of high thyroid and my gynecologist, hearing my symptoms. found my enlarged thyroid gland that m]y endocrinologist and primary care doctor had missed. Eye problems started with dryness…couldn’t wear contact lenses comfortably and then within weeks my eyes bulged out. I looked like a basset hound at some point. I went to work before the sun went up and wore two pairs of dark glasses on wheh im I had to drive in daylight.
Nowadays I can sleep without tape and need only one pair of sunglasses to drive in morning.
I got cataract surgery early. My eyes exposure to sunlight when they were might have caused that.
It is a long process but gets better.
I dealt with Graves eye disease ~10 years ago. Autoantibodies like those that attack thyroid tissue can also attack eye muscles. Scarring of the eye muscles can eventually limit eye mobility that causes double vision, and swelling that can create pressure on the optic nerve if not treated. I was lucky to be referred to a terrific multidisciplinary group at the Shiley Eye Clinic in San Diego (Thyroid Eye Clinic | Specialty | Shiley Eye Institute | UC San Diego). They gave me an eye patch to deal with the double vision and monitored me for a while to look for excessive pressure on my optic nerve. When the swelling progressed too far, I had surgery called orbital decompression to relieve the pressure by removing some bone in my eye socket. It sounds worse than it is-I went home the same day with just a bit of a headache. After that healed, I had surgery on my eye muscles (strabismus) to realign my eyes and minimize the double vision. My eyes function well now except for some double vision on the periphery. I don’t even need glasses. My advice is to find an expert and let them take care of you. It’s not fun, but you will be fine!