[AEBD1]

#1058817

I was diagnosed with TED a few weeks ago. My wedding has been planned for June 23rd.

My fiance is concerned that by June, if my eyes are really bulging out of my head and my eyes would look very disfigured, that we should postpone the wedding.

At this point, my eyes have widened some, and I look like I’m shocked all the time, though when I smile, it’s definitely less noticeable. At this point, if things stayed as they are now, we would get married no problem.

Does anyone have any thoughts on this matter? It’s really difficult for me to think I might be postponing my wedding for 2-3 years because my eyes look different. I still want to have the wedding day. And if need be, we can take pictures with me in my dress all formally in a few years when I look normal. Alas, my fiance would rather postpone if they look bad.

We have to send out invitations in March, so even if my eyes looked okay then, there’s still room for problems between then and June.

I’d appreciate any words of encouragement or suggestions.

Thanks a million

Ange

[snelsen]

#1170165

Hi Ange,
My initial thoughts are that it seems that photographs are looming as the most important issue here. And I understand that you may want pics of the others in the wedding, and that can evolve on the day of the wedding. But, for starters, when you get your wedding dress, or whatever you plan to wear when you get married, do go ahead, get some early photos. I say this because this is important to you (and/or your fiance.)
You don’t really have any guarantee for anything about your life in two or three years, and I do encourage you two to get married as you have planned to do. It really will be ok.

There is no way to predict how your TED will evolve. I am sure you will get some responses from people who had scratchy eyes, and they bulged a little bit, but that is all. You may hear from others (I am one of them) who have a pretty darn severe experience with TEd.

It is easy for someone else not involved with this situation to minimize it, and I don’t mean to do that at all. But I sure do hope that you both decide to proceeed with your wedding, feeling really good and happy about it. It really is not possible to predict much of anything in this area, and I hope it will begin to recede in its’ significance. And your idea to take them a few years from not is a possibility, also.

I am so sorry you (and all of us who have TED) that there are no finite answers. But there really aren’t.
i hope you receive a lot of encouraging answers, and happily move ahead with those invitations!
Shirley

[AEBD1]

#1170166

Thank you for your encouragement, Shirley, and for writing a response to a lesser important question compared to those on this forum. As you know, when it’s happening to your life, the little things are big compared to the oustiders looking in. I appreciate your empathy and compassion.

My fiance has since revoked his previous suggestion to delay our wedding ceremony. He was very very stressed, and said things that he did not think through fully. I’m happy about that. haha.

At any rate, the wedding is on in June.

Thanks again.

[Bobbi]

#1170167

Just to let you know I was one of the people who got a moderate case of TED, and had it eventually subside to the point where it is not obvious that anything was ever wrong. The disease is totally unpredictable, so take deep breaths and try not to panic. Your wedding should be as happy a time as possible, and I do wish you and your fiance happiness together.

[Bobbi]

#1170168

Just to let you know I was one of the people who got a moderate case of TED, and had it eventually subside to the point where it is not obvious that anything was ever wrong. The disease is totally unpredictable, so take deep breaths and try not to panic. Your wedding should be as happy a time as possible, and I do wish you and your fiance happiness together.

[snelsen]

#1170169

Hey, that is great news. You did a nice job of describing what is like FOR ALL OF US when we are having our own stressful situation which definitely is all encompassing to us. Sometimes the tincture of time does help, and some reflection about the whole thing. Of course I was more than happy to respond to your email, it was important, and certainly not a lesser important topic!
Do continue to write about TED and other news. I am glad my thoughts were helpful.
Shirley

[gangstabear]

#1170170

Hi Ange,

I can totally relate to what you are going through. I agree with the other the suggestion you get photos done early. I got married in Sept 2011, and wanted to post pone my wedding because of TED. I have moderate TED. I got pictures taken but I hate the way I looked, with the constant bags and puffiness around my eyes. I haven’t developed any of my pics, except photoshopped a few for our close families. Are you seeing an opthamologist? Maybe he could put you on prednisone or a steriod to take down the inflammation. I also highly recommend selenium. I wish I had known about it sooner. I take 400mg a day and my eyes feel so much better! The TED is really unpredictable. Try and get lots of rest and keep the stress low (wedding planning can be quite stressful!). When I get stressed, my eyes get worse.
Good luck!!!

[AEBD1]

#1170171

Woah, gangstabear!
I feel like I just found a kindred spirit! haha. Thank you SO much for sharing your experiences. I’m totally copying and pasting your post and bringing it with me when I see my opthamologist again in February. I’ll see what he says about all of those things.
Congratulations on getting married! I hope the newlywed life is treating you very well.
I’m sure the pictures don’t look as bad, and photoshop is our friend.
Thanks again, for your words and sharing. I feel badly that you had go through TED while getting married, but at the same time, I’m thankful to hear I am not the only one (I still feel bad though!)

[gatorgirly]

#1170172

I second gangstabear’s comment about selenium, but I think she means 400mcg (micrograms), not 400mg (milligrams). I was taking 200mcg, now I’m down to 50mcg and my eyes have remained unchanged since I started the prednisone (which I have since stopped).

Of course, please don’t start taking anything – supplements included – without talking to your physician first. Both my endocrinologist and neuro-ophthalmologist are big supporters of selenium and I will do anything I can to prevent ever having to go back on huge doses of prednisone ever again.

[Kimberly]

#1170173

Thanks, gatorgirly! Yes, the maximum recommended daily dose of Selenium is 400 mcg. Following is a fact sheet from the National Institutes of Health.

(Note on links: if you click directly on the following link, 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://ods.od.nih.gov/factsheets/selenium/

Excessive levels of selenium in the blood can cause issues including GI upset, fatigue, hair loss and “mild”* nerve damage, so definitely pay attention to that recommended upper limit.

*Not sure what exactly the NIH means by “mild”…

[AEBD1]

#1170174

Hey,

Thank you all for your support, encouragement and clarifications. I’ve taken note of them all, and am ready to meet with my opthamologist soon and discuss these possibilities.
I am hoping that steroids are not necessary… in fact, I’m hoping things don’t progress from where they are now. Alas, TED is a very sneaky thing… day at a time. Regardless, thanks for being there as each day does come.

All the best,

Ang

[snelsen]

#1170175

I read the reference provided by Kimberly re selenium. There is not much evidenced based information that encourages the general population to take it or need it. And there are certainly some issues with taking too much

It is my thinking that selenium deficiency in this country is very very rare. I encourage you to discuss this with you doc, and of course, if you do decide to take, it, as gatorgirly says it is MICROGRAMS not milligrams.
I’m not much interested in taking it, and i don’t.
Shirley

[Kimberly]

#1170176

For those interested in reading more about selenium, following is a link to the study that sparked a lot of interest last year.

This study was done in an area known to be selenium-deficient, so it is not yet known whether or not this will benefit the rest of the population. Also, it’s important to keep in mind that this study was done on patients with mild TED, as opposed to those who were candidates for steroid therapy, surgery, etc..

(Note on links: if you click directly on the following link, 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://www.thyroid.org/patients/ct/volume4/issue8/ct_patients_v48_5.html

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