[Momof5]

in reply to: GO disease progression #1178073

Yikes! In my never ending quest for more information, I was reading the Kellogg Eye Center information today. It states that approx 1 million people have active TED each year (:o)

Quote:

Approximately one million Americans are diagnosed with Graves’ eye disease each year. Women are five to six times more likely than men to get the disease. Cigarette smokers are at significantly increased risk to develop the disease, and when they do, often have more severe and prolonged activity that threatens vision.

http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html

I guess I’m still confused (as I am sure many are) with TED…it seems like it can be “a little” and never go any further, or it can start mild, then explode, then settle down again. And, in rare cases, flare up a second or third time. Seems like there can be good and bad days, or it can be lid retraction, bulging, or the bags/swelling, or redness and dryness! ARGH! My brain doesn’t like things that don’t fit into neat little boxes. :p

[Momof5]

in reply to: Good Article! #1178298

I’m sure I am guilty of saying the wrong things at the wrong times. It comes from a loving place, even if it’s bad. Good article.

[Momof5]

in reply to: how to not obsess about GD and TED – any advice? #1178255

@Raspberry – how long have you been dealing with all of this?

I think I am leaning more and more towards a TT….but gosh, some of me feel like “what if I am one of the lucky ones who gets remission” and then what if I don’t?

[Momof5]

in reply to: Feeling hyper again, sort of… #1178238

I definitely feel colder with the Atenolol. I was wearing three layers today and only took 25 mg. Crazy stuff! I too, feel very tired ifi take more than 25 mg. I also read that itchy or swollen eyes can be a side effect of beta blockers….less likely and less known, but the potential is there. I don’t remember my eyes bothering me before the BB.

[Momof5]

in reply to: how to not obsess about GD and TED – any advice? #1178250

If I could control my emotions, I think I would be ok. But, I can’t right now.

Ironically, where many endos are pushing for RAI, mine keeps telling me to wait. Although, she wasn’t gung ho on the surgery part.

[Momof5]

in reply to: how to not obsess about GD and TED – any advice? #1178249

I will definitely download some! I have tried yoga in the past and didn’t really like it, but am going to try it again.

[Momof5]

in reply to: how to not obsess about GD and TED – any advice? #1178246

I think part of it goes back to reading the stories on here and elsewhere about problems and TED popping up much later. It’s hard to read those and not worry and fret about the “what if’s…” because that’s all you pretty much read on the internet, ya know?

I joined a few FB groups and I am amazed at how many people don’t do any research….

[Momof5]

in reply to: how to not obsess about GD and TED – any advice? #1178245

Thanks, Kimberly! You are a gem!

[Momof5]

in reply to: Dry mouth #1178227

Do you take any allergy medicine? This could cause dry mouth too. Just a thought.

[Momof5]

in reply to: Confused…can levels really drop that fast? #1178216

I don’t know if it’s “symptoms” or just par for the course. I feel more shaky today, but my bp and pulse are doing well.

[Momof5]

in reply to: GO disease progression #1178071

Kimberly wrote:

@paigemattes – Hello and welcome! Some docs do use Botox to help with eyelid retraction, although my understanding is that the effect is not permanent. (I believe it lasts for a few months). As far as I know, this is still considered an “off-label” use of Botox…meaning that Botox has not been given FDA clearance for use *specifically* in thyroid eye disease. I would also make absolutely sure to use a doc that is familiar with the use of Botox specifically for TED.

As for medical vs. cosmetic surgery, make sure that any surgeon will be absolutely certain to code the procedure as a *medical* necessity. (Which it is, especially if the retraction is keeping your lids from closing all the way, which could potentially damage the cornea). When procedures are coded as “cosmetic”, that’s when the insurance companies will generally refuse to pay.

Hope this helps!

Do they use Botox while still in the active phase?

And Hello paigemattes!

[Momof5]

in reply to: Confused…can levels really drop that fast? #1178214

Thanks for the response! This has only been 8 days, so maybe I will wait and see how it goes over the next few days. I would be happy if I responded that quickly.

[Momof5]

in reply to: Exercise #1178142

I went to my gym yesterday for the first time since all of this started. They were great. I only worked out for about 40 minutes because I’m still feeling weak, but we stuck with strictly weights and weight bearing exercises and my heart rate barely, and i mean BARELY even made it into my target zone. (I always wear a heart monitor because i like to workout in my target zone as much as possible). What I did yesterday was about 25 percent intensity from what I was doing, but it still felt good to be back to something “normal”.

[Momof5]

in reply to: Plugs for Dry Eyes? #1178208

Do a search on the posts. I have read about the Punctum plugs on older posts…..I don’t have any experience with them as I am just beginning my Graves journey.

[Momof5]

in reply to: Hoping this isn’t too personal #1178148

I am due to be tested next week, but I don’t think my levels are normal yet…maybe closer. My tremors have gone down, but not away. My bp and heart rate have definitely dropped and I am now only taking 25 mg of Atenolol a day, down from 50 and still feel decent. My period is acting exactly like it always has, so no big difference, and I don’t feel hypo at all.

Thanks, as always.

[Author]

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