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Hi lisaz,
I’m sorry you’re experiencing changes in your eyes, but I can tell you that there IS hope for returning your eyes to their normal state — and you are absolutely not likely to end up with the very worst symptoms of the eye disease. Those who have the worst of the eye disease are definitely in the minority. Prednisone is a fairly common treatment for people who are having trouble controlling the swelling, but (as you found) its benefits are only available while you are still taking it, and of course it carries its own risks.
While it appears your endo and internist have been making wise decisions regarding your eye symptoms, an opthalmologist is truly the best doctor to be guiding you through the eye disease. It is not the same disease as the thyroid disease, and it should be treated and managed separately.
The eye disease has what they call a “hot phase” and a “cold phase.” The hot phase is defined as a period when the swelling is fluctuating — up and down — frequently. The cold phase may not mean that your eyes return to normal, but it means they stop changing so frequently. When they have reached the cold phase, that is the safest time to pursue surgical options, if indeed you and your doctor still feel they are necessary. There are people who go through the hot phase, into the cold phase, and at the end have small changes in the look of their eyes.
One of the most important things to remember is that autoimmune diseases are “charged up” by stress — when we stress, the antibodies are activated and the damage can be more severe. There is no way I can adequately emphasize the importance of trying to remain calm, of trying to lessen your stress at every turn. You will find that you may experience far less damage in the end if you can successfully manage your stress through the hot phase.
But first — have an opthalmologist evaluate your eyes so you have a concrete answer about what’s going on. It will help.
I hope that’s helpful to you!
~Ski
NGDF Assistant Online FacilitatorI was diagnosed with Graves disease earlier in the year and had radioiodine treatment in late July. About 4 weeks ago my eyes became very swollen and the swelling has persisted since. When I visited my endocrinologist about a month after the radioiodine tx, he told me my thyroid levels had actually increased to their highest level yet. About two weeks ago my internist and endocrinoligist agreed to put me on predisone for 6 days, which helped the swelling subside a bit. Now that I am off the prednisone, the swelling has returned. I am so frightened that my eyes will never return to their normal appearance. I am not experiencing headaches or double vision, but the swelling in my eyes is not normal. What should I do? Are these symptoms for TED? Is surgery my only option for treatment of Graves Disease? I am desperate for help, thanks!
Thank you so much for the quick and helpful response. I am scheduled to see an opthalmologist on Friday and I feel calmer already.
Is there anything I can be doing diet-wise or exercise-wise that would help both with my eyes and Grave’s disease?
Thanks so much!
Nothing specific re diet or exercise — relaxing is the main thing. Good luck! Let us know how your doctor’s appointment goes.
~Ski
NGDF Assistant Online FacilitatorAbout 4 weeks afer I had the RAI treatment my eyes were swollen all the time and you couldn’t even see my eye lashes. My endo told me that this sometimes happens after RAI. I used GENTEAL drops and put lots of ice on them. Sine then they have gone down. But they do not
look like they did before the RAI and PTU. But no one really notices
and it was something I dealt with. Try not to let it get to you and remember you are trying to get better and it takes time. Good LuckHello!
Just to share my experience with you, I too have had a persistent problem with swollen eyes, however mine are purely related to my thyroid levels being off. Per my Opthalmologist and Endocrinologist, I have no signs of TED, but I have seen a consistent pattern of developing swelling around my eyes whenever my levels are either off or on the move. It initally started about 4 weeks after RAI in 2/05 and continued until things started leveling off for me in August or September of ’05. Because I have had difficulty finding a replacement dose that works for me, the swelling has come and gone over the last year as we adjust my thyroid medication. I also wondered (and asked) in the beginning if the swelling would EVER go away, but I found that it does…thankfully.Hang in there. It does get better!
ElizabethElizabeth is right — there is some swelling of the tissues surrounding the eyes (lids, and under the brow line, for instance) that can happen for some people when levels are fluctuating or when they’re off. I find that in myself — as well as increased swelling when my immune system is “brought to bear” for other issues (like now, since I have a cold). As a matter of fact, it was the first symptom that sent me to the doctor (tremors? no. looking weird? I’m right there. maybe my priorities need some looking into.)
Even so, SOME swelling of the tissues surrounding the eyes *could* be a sign of TED (sometimes the fluid from inside the orbit is “pushed out” into the tissues instead of the eyes themselves being pushed forward), so it’s always best to have an opthalmologist evaluate your individual situation.
~Ski
NGDF Assistant Online FacilitatorQuick question. Does everyone that gets Graves have eye problems? I have yet to read a yes or no answer in all the books.
Thanks you for writing “In Our Own Words”. My husband and I have being talking about things (ok, having words) and He started reading it and now He see thngs different.
Thanks,
JulieHi there. I did not have TEDs with my Graves’. I did make sure I didn’t have it hiding somewhere waiting to rear its ugly head since I had chosen RAI. My opthalmologist, who by the way specializes in Graves’ with TEDS, gave me the go ahead. Just my thought on it.
KimWe have asked this question at a great deal of thyroid conferences. The common answer is that it is a seperate disease. That being said, a lot of us have some form of the eye problem.
The thought is anywhere from 5 to 20% will have a “Noticable” problem with the eyes. However the longer you have Graves’ the more chance you have in seeing some “Noticable” eye issues.
Hope that helps to answer you question. We are only a click away.
Jake George
On-line Facilitator.Just thought Id put my 2 cents worth in too. I have been seeing an orbital oculoplastics dr who specializes in thyroid eye disease and he told me that not everyone gets the TED however it can occur any where form now until 20 yrs from now even after my RAI. He also is having me go on steriods before RAI to help offset the effects to the eyes since I am having severe dryness and some blurred vision. He however was not sure if this was Graves or not but thought it best as a precaution to take the steriods. Hope this helps some.
Renee
Thank you all for answering the question. Sometimes all of this is confusing and then when your mind doesn’t work, it is more confusing. My Endo isn’t alot of help. He is good at the medicine part, but not at the personal part. Thank goodness for this site.
Julie
My endo is the same as yours I find I get my best info from this site. In fact she yelled at me yesterday because I had not gotten the ablation done yet, apparently when she saw me in january she thought I was going to have the uptake and scan and then the ablation before I saw her yesterday. I think the communication between the 2 of us is not the best I think one thing she thinks another. Anyway I did however end up with a good visit she finally explained why she wanted the ablation done earlier. Just wanted to say I understand,lol.
My endo isn’t that bad yet. The main problem is I don’t think he realy knows how to talk to me. I take questions in and he will answer only enough to have more questions. I am reading every book that was listed here and I read this board every day. I am not sure that I would have understood half of everything going on without this board.
So, a BIG thanks to everyone that post on here from the ones that need you.
Julie
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