[Nat82]

in reply to: teenage daughter has Graves? #1169219

Hi There:
Before worrying too much, I would wait and see what the doctor has to say about her lab results as it may just be a "flare up". If it is Graves Disease then at least you’ll know what it is and she can begin treatment sooner rather than later.
I was diagnosed with GD when I was 12 (no one in my family has any thyroid issues) but the doctors think I may have been hyper for a couple years before the diagnosis. At 15 I had a full thyroidectomy as was recommended by my Endo but that’s because they were unsuccessful in keeping me in remission for longer than 6 weeks. In your daughter’s case if this is GD, you’ll have at least gotten treatment early and in my experience/research, that makes a world of difference in keeping her stable.
Please post again when you receive her labs back and let us know.
Feel free to send me a private message if you ever want to speak with someone who was also diagnosed as a child.

[Nat82]

in reply to: TED Lower lid surgery,graft from hard palate #1169387

I can’t personally relate to this but I met someone once who had this done. She’s since been trying to correct what the surgery did to her eyes; she can’t close them… at all, and has to wear sunglasses everywhere as even artificial light is excruciating for her.
I know it’s negative and it’s only the case of one person I just happened to meet so don’t feel discouraged.
Is this something you’re considering?

Nat

[Nat82]

in reply to: Waiting…………. #1169257

Hey There:
Re your coping skills, it’s good you’ve found this site to help you deal with it all. I’ve learned more from this site than I’ve ever learned from doctors, and I’ve had GD since I was 12 (I’m 30 now)! We’re all trying to cope in one way or another so we can all relate to the things you’re going through and the way you feel. For me, there’s nothing better than having other people with GD to relate too ” title=”Very Happy” />
Nat

[Nat82]

in reply to: New to this… #1169251

Hi Jamie:
I’m not going through radiation (I had a thyroidectomy) but I do have GD and I know what a struggle it can be. I would assume that once you treatments are complete, the goiter will be less noticeable and eyes will appear more normal. In my case, my eyes didn’t relax until after my surgery so it may be the same case with you (once the radiation has completed its job). As far as being emotionally out of whack, you’re lucky that it’s only just started! I’ve felt crazy from my diagnosis to now lol ” title=”Wink” /> I would assume that you’re feeling this way now because your thyroid reacting to the aggressive treatment so it’s misbehaving, for lack of a better word. I think that this is one of those times when you can blame it all on your GD; remind yourself that you’re not crazy, that you can’t control it right now, and that you will adjust to it so be strong and look forward to feeling like yourself again.
This is a great place to vent about it all and we can all understand what you’re going through and what you will go through. We’re all here for you so take advantage ” title=”Very Happy” />

Nat

[Nat82]

in reply to: Psychological stress=Graves? #1169274

Hey There:
I was diagnosed with GD at age 12 (full thyroidectomy at 15) and the doc’s at Walter Reed Army hospital were pretty sure that it "became active" because of the stress in my life at the time (you’d be amazed at what a child can endure). In my case this disease isn’t hereditary, at least until I came along and will most likely pass on, but I was told it can also show itself if you’re an extreme dieter, which I wasn’t (cause I was 12!) ” title=”Very Happy” />
In any case, since my 19 years of having GD, it’s always been stress that has caused me to have changes in relation to hyper/hypo.

Nat

[Nat82]

in reply to: help #1169321

If it were me, I would see an endo and discuss your options before you start to stress about it. An endo is more likely to understand Graves and I’m sure he/she would rather observe you on his Rx choice before deciding anything else.
Feel free to contact me.
I was diagnosed at 12 and had a full thyroidectomy at 15. I’m about to be 30 now.

[Nat82]

in reply to: Trouble Coping #1169271

"But you don’t look sick" or "But you look so healthy"… Those words will always make me want to put my face in my hands and just sigh. In a twisted way, I almost want to "look sick" or have something to show for all I deal with. Have you ever met someone else with Graves’ Disease? It’s actually an amazing experience; you’ll wish you could record it so that when family and friends don’t get you, you can play it for them and shout "SEE, it’s not just me, I’m not crazy. This is Graves’ Disease!"
I can relate to you about the baby thing. I’m about to be 30 and everyone I know has a family of their own and I can’t help but be envious of them. The thing that saddens me most is Facebook lol; all I see are constant updates of my friends with their children looking so happy. I have the same fear as you do about not being able to conceive (not that I’m in a position to do so anyway) but it weighs on my mind constantly and pops up so randomly that it just simply makes me sad.
As far as the insomnia goes, I can only say that it doesn’t go away, at least not for me and even if I’m hypo. I finally had to break down and get a prescription but it’s been so great for me. I tried over the counter drugs and they just made me lazy all day; there are sleep medications that don’t do that. With that said, I’ll tell you this: I’ve been off and on so many pills just to try to be "normal/balanced".
I was diagnosed at age 12, my thyroid was removed at 15, and I’ve been crazy since. At 25 I was so depressed that I stopped wanting to live (not suicidal). It’s never been a particular thing that messes me up it just is what it is; it’s like I’m outside looking in and I’m saying to myself "snap out of it already" but sometimes it just lasts so long. I never wanted to be on any medications, in fact I’m a little opposed to them but it’s a fact that they’ve helped me. Grave Disease can cause a chemical imbalance and that can make you feel out of control and it sucks! I want to tell you this also but it’s only my experience so don’t take it as gospel: every time you see a doctor you will learn something else that is an effect of Graves’. I still get referred to other specialists and they run test after test then say its all normal (or they find something to make it something. I was referred to a Rheumatologist because my body hurt and he tried to tell me that I had juvenile rheumatoid arthritis. He said I probably had it when I was much younger but it went undiagnosed because the focus was on Graves. He said that it was a good thing that I had Graves so early because it stunted my growth therefor the arthritis did not have a change to deform parts of my body). I keep saying "just tell me it’s the Graves’ and I’ll deal with it!!!"
For me, the whole thing has been an ongoing battle from A to Z.
My advice to you is this: Make yourself heard, announce that you have Graves’ Disease and when people ask you what it is give them the materials they need to understand it (make a brochure, ask ngdf for ideas) as it’s too difficult to explain. And most importantly, find people with Graves that you can talk to, even if it’s only online or via email or go old fashioned and write letters. If you can find someone local that’s awesome (I’ve yet to here in FL) and the bond will be strong and how great would it be to call her up and just say "it’s one of those days" and she’ll understand exactly what you mean.
You’re blessed to have a supportive husband but even if he’s that he will never quite get it and I have advice for him too: Join a support group, ask him to register to this site and encourage him to find other spouses dealing with this.
I’m sorry for the short book I’ve written here, I guess I had too much stuff to say today but I hope that this helps in some way.
Your Bonded Friend,
Nat

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