[angelamercy]

#1059179

How bad is it that I am so looking forward to my radiation starting on the 18th? I hate the way I look. I am tired of the headaches. The tops of my eye lids are now starting to protrude over my bulging eyes. I go to work and then pretty much hide in the house. I want to wear my sunglasses all the time because my 6 month old glasses don’t cover my eyes anymore. I am starting to take anti-depressant medication – which I don’t want to but know I need to. I keep gaining weight. I feel disgusting. Just a year ago I was thin, beautiful and had the prettiest eyes. Now I am over-weight, scar on my neck, even bigger eyes than before and I don’t like looking at myself. I know this sound all so petty but it is so hard when your appearance has changed drastically and there isn’t much you can do about it. Just needed to vent. If I hear God doesn’t give you more than you can handle one more time I am going to SCREAM!

[adenure]

#1172753

Hi

I noticed you said you have a scar on your neck, have headaches, gaining weight, depression- did you have a thyroidectomy and are now hypo waiting for radiation for cancer? Is the scar from a thyroidectomy? Just wondering why you’re having radiation for Graves if you had surgery? I hope all goes well though and that you will be feeling better soon. I don’t think it’s wrong to look forward to any treatment that makes us well! I was scared about my surgery, but I was so ready to do it and move on with life! Tomorrow I’ll be 3 weeks post op and I’m so glad I did it. I feel a whole lot better these days.

Alexis

[Kimberly]

#1172754

Hello – There was some research on Thyroid Eye Disease done out of Shiley Eye Center a few years ago that showed that TED comes with a *significant* emotional burden. And the researchers were surprised to discover that the appearance changes were even more distressing to patients than vision changes.

You mentioned that you have eye involvement — has your doc spoken to you about a course of steroids in conjunction with the RAI treatment?

The latest guidance on RAI from the American Association of Clinical Endocrinologists and the American Thyroid Association recommends that “high risk” patients with mild, active eye involvement should receive steroid therapy concurrently with the RAI treatment in order to reduce the risk of the eye condition worsening. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”). For other patients who have mild, active eye involvement, the guidance notes that steroid therapy should be “considered”. Of course, steroid therapy comes with its own risks and benefits, so this is an issue that you would need to discuss with your doctor.

You can access the full guidance in the “Treatment Options” thread in the announcements section of this forum; the section on RAI and eye involvement starts on page 622 of the journal article; page 30 if you download the guidance as a PDF doc.

Take care!

[gatorgirly]

#1172751

I read angelamercy’s post as though she is preparing for radiation on her eyes, not RAI, but I could be wrong.

Either way, you are not alone. TED has taken a huge toll on my social life, love life and perception of myself. I used to be so happy, outgoing and busy. Now I avoid social situations as much as possible, hate being photographed and am just now getting back into the dating scene after more than a year. I too used to consider myself pretty, not skinny but healthy, and I liked my squinty eyes. Now I’m fat, have developed moon face and acne from the steroids I took for TED, and my eyes look stupid. People who didn’t know me before TED can’t believe I’m having surgery on my eyes. They said things like, “But you have such big, pretty eyes.” Yeah, well they’re not MY eyes and I don’t care what you think. People who DID know me before the TED don’t even recognize me anymore. My best friend’s parents had NO clue who they were talking to at her housewarming party last month until an hour later when someone mentioned my name. And old co-worker didn’t recognize me either and said, “You look so different.” I even had to get a new license picture taken because cashiers thought I was using a fake ID.

You are NOT being petty. Fortunately, my oculofacial surgeon does lots of OD surgeries, and he said not a single patient has had this surgery done in vain, and he would never perform one if he didn’t think it was medically necessary. He explained that our eyes are the central point of our faces, and what people notice first. So if your eyes are big and pretty to others, but bulging and ugly to you, that’s what matters. I too am sick of the “God planned this all out for you” nonsense because unsolicited advice is one of my biggest pet peeves.

I did not have radiation on my eyes because they responded well to steroids (prednisone) but are still bulging. Surgeon says they will not go down any more with steroids or radiation, so I am scheduled for a pre-up later this month and will have more details on my upcoming OD then. Good luck with the radiation! Someone else on here documented her radiation treatments but I can’t remember who it was or what the end result was. You might try searching. And please, keep us updated and let us know if you have a neuro-opthamologist and/or a surgeon lined up.

Kelly

[angelamercy]

#1172755

I was diagnoised Dec 30 with Hyper and Graves. The methamozile made me go into liver failure and thyroid storm so my thyroid was removed in January. I did two rounds of infusions which helped but my body can not handle more infusions. I am one of the lucky few whose eyes get worse after having my thyroid removed. Just like I was one of the few who can go into liver failure. I am scared of the radiation only becuase they told me some people (very few) get worse the first couple days of radiation. In just three days my lids have dramatically swollen, so I am sure I will be one of the few who will feel worse. I am also now hypo so that doesn’t help either.

I quite smoking because of this disease and all I want to do is smoke because really? It’s not like it is improving.

I am normally a very positive person, yet lately not even weeding in my garden or yoga is helping. I sent my husband the letter to husbands from this sight. I am THANKFUL I have a wonderful man. I have told him NO, WE are not going to be fine in time. WE don’t have Graves, I do and that isn’t fair to him. I’m just frustrated!

[Kimberly]

#1172756

angelamercy – Sorry if I missed the boat and you were talking about radiotherapy for your eyes! Here is some good info on this therapy from the International Thyroid Eye Disease Society:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroideyedisease.org/radiotherapy/

Being in either a hypo *or* hyper state tends to aggravate TED. Is your endocrinologists working with you to get your levels stabilized?

One of the concerns with smoking is that smokers do not respond as well to therapy for TED (steroids or radiotherapy), so hopefully that will help your determination to remain smoke-free. Take care!

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