[ksesher August 29, 2012 at 11:52 am Post count: 1]

#1059321

Hello all,
My name is Kiersten Sesher and I am currently a freshmen at the University of Kentucky. I was first diagnosed with graves disease when I was in the 8th grade (13 years old) and well under weight!When i was first diagnosed I looked like my eyeballs were ready to pop out of my head and my goiter was huge! These were both things that I didn’t really notice considering my age. My heart rate was through the roof as well as my blood pressure and wasn’t able to be controlled by medicine. The following year (my freshmen year of high school) I had my thyroidectomy which went great. With all of that now behind me I am currently struggling to get my levels right and figure out my correct dose of synthroid. I had everything set and was on the same dose for a few years when we switched pharmacies and I wasn’t too pleased to figure out that my new Pharmacy had the wrong script and that I have been on the wrong dose for the past couple of months. So that is where I am at today, I am currently hyperthyroid (which seems weird considering that I do not even have a thyroid!) and dealing with crazy hot flashes and tremors as I am walking to class. Hopefully I will get my medicine figured out shortly. My question however is if anyone here has had the procedure to fix their eyes after being diagnosed with graves? My eyes aren’t too big of an issue, they are occasionally dry and sore when I don’t get enough sleep. I know this sounds stupid but it is beginning to become a cosmetic issue! I just want my old eyes back

[gatorgirly August 29, 2012 at 3:31 pm Post count: 326]

#1174061

Hi Kiersten,

I’m 27, and have had Graves since I was 25. I work with college kids, and was one myself not too long ago, so I completely understand how you feel. Believe me, it doesn’t get any easier having Graves and thyroid eye disease (TED) as you age. Although I can’t imagine going through it so young and for that, I applaud your positive attitude. I am having orbital decompression – the surgery I think you are asking about – in less than a month. I plan to document my experience through my blog and update on here as often as I can. Feel free to follow my journey.

I’m also struggling with my Synthroid dosing (I had RAI instead of a thyroidectomy). I don’t have hot flashes per say, but I am always hot and sweaty, even in the winter or when I have the AC blasting in my bedroom. I used to always be cold before Graves.

I recommend you talk to your parents about seeing a neuro-ophthalmologist or at least an ophthalmologist who treats thyroid eye disease. They can do some baseline tests so you can measure any changes in your vision or the bulging. They can also tell you if you are a good candidate for the surgery if your eyes are done changing. Most people think my eyes are large and pretty, but those who knew me before TED know my eyes used to be tiny and very deep-set. The bulging hurts, has completely changed the way my entire face looks, and causes me to avoid eye contact with strangers. Just so you know, orbital decompression is NOT a cosmetic procedure (insurance companies cover it) and TED is NOT a cosmetic issue – it is a real medical condition.

It’s so funny (well, not funny, but “funny”) that you say you want your old eyes back. That’s ALL I’ve been saying for the last year. I have a countdown on my phone that “XX days until I get my old eyes back” with a photo of me from three years ago that my surgeons are using as a guide during the operation. Today, the number is 27 (surgery is Sept. 25).

If you’d like, I can send you a link to my blog that mostly revolves around my journey with Graves and will have lots of details and photos of my upcoming surgery and recovery.

Kelly

[KimberlyOnline Facilitator August 29, 2012 at 4:24 pm Post count: 4294]

#1174062

Hi Kiersten – Welcome to our forum. Definitely agree with gatorgirly’s suggestion that a visit to a neuro-ophthalmologist would be helpful.

Dry/sore eyes can potentially indicate that your eyelids aren’t closing all the way. This is truly a medical issue, not just a cosmetic one. (And make sure your doc does NOT use the word “cosmetic” with your insurance company — they will use this to try and get out of paying any claims for treatment).

Also, you might wish to go back and edit your original post to remove your last name. Although *only* registered members are allowed to post on this forum, anyone who visits the gdatf.org web site can access the forum and see the posts made by others. Just trying to make sure everyone stays safe online!

Take care — and please check back to let us know how you are doing!

[snelsen August 29, 2012 at 5:21 pm Post count: 1909]

#1174063

Hi Kiersten,
Kelly and Kimberly said everything I was going to say.
In the meantime, eye ointment and non preservative eye drops should be your friends. Use them often, to take care of your dry and scratchy eyes. Unfortunately, with thyroid eye disease (TED) our tear consistency changes, and it is not as lubricating as our bodies have been providing us before having TED. So we have to augment it with drops and ointments to protect our corneas, and for comfort.
Welcome to the boards, glad you found us.
Shirley

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