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in reply to: Vitamin D…Sneaky but it was worth it! #1176913

True, I’m going to start paying more attention to the requisitions from now on.

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in reply to: atenolol #1176803

Thanks Karen…your words mean alot.

I tried the Atenolol twice so far and I’m not really sure if it’s working yet but I’m going to give it a little while at least until I see the Endo again on the 19th. I will say that I went back to work today and I felt anxious but forced my way through it. If no changes by my next appointment then I will definetly ask about the other meds you mention.

Take care everyone:)

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in reply to: atenolol #1176801

Hi,

I met with endo on Thursday since my TT almost 4 weeks ago. I’m still troubling with some anxiety and as we all know it’s more than just uncomfortable. My pressure wasn’t low but my heart rate was up. I’ve noticed that my anxiety level goes up when I leave my apartment. Especially if I have an appointment. I have severe TED and anyone who suffers from it knows all the work that goes into preparing ourselves mentally and physically before we leave our caves. I’d be much happier if I could just stay at home with my family or in a dark room until my surgeries are complete. But then I pay the bills so I have to suck it up.

I’m returning to work on Monday and I’m not looking forward to it in the least. Personally, I don’t think anyone outside of this disease really cares so all the stares and questions will not be received well. I plan to stay to myself. My supervisor says she wants to see me with a smile on my face…bless her ignorant heart for she has not the slightest clue. I will be tackling a series of eye surgeries in the next few months so I try to remember that soon I will be able to look in the mirror again without breaking down.

My point? My doc prescribed 25mg’s of Atenolol and I plan to fill the prescription today and start with hopes that it helps with the anxiety. I pray that it does because the feeling can be crippling. I see my endo again in a couple weeks to get an update on my lab results which I will be doing this week.

I will let you know how the pill affects me when I take it this evening.

Take care and I wish you well.

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in reply to: What questions should I ask the Ophthalmologist? #1176767

Sorry for the delayed response. My Internet was down for a few days.

I met with my ophthalmologist/reconstructive surgeon. Thankfully there is no need for immediate (OD) surgery and my eyes have not gotten any bigger (I previously said the measurements were 17 but I was wrong….4 months ago they were 25 and 26-big huh?) and they haven’t gotten any worse confirming that I am in the “cold phase”.

He was patient and was able to answer most of my questions:

We can do both eyes meaning he is ok with it
He suggested removing the bone first which he said will look to me as if there has been no change but this will set the eyes back about 2-3mm (why not more? maybe the more bone he removes might cause a problem?)

He said the most significant change will be when they remove the fat from the upper and lower parts (hot dog rolls and bags)
He didn’t mention anything about which “walls” would be removed and I can’t believe that I forgot to ask whether it would be lateral, medial, floor or a combination.
He also didn’t mention the ENT and again I forgot to ask.
gatorgirly can you explain which surgeon did what? I had a little trouble understanding when you explained this in your last post.
Which surgery did the ENT perform? I’m seeing my ENT surgeon (performed TT) in March and want to talk with him about this.

The surgery will be sometime in April but I will meet the ophthalmologist/reconstructive surgeon 3weeks prior to ask any questions I forgot to ask

Forgot to mention that the ophthalmologist hasn’t asked to see any pictures of what I used to look like and I forgot to bring them but I won’t forget to bring them to the next. And if he brushes them off, then I guess he won’t be touching me.

Thanks again everyone-this site ROCKS!

Heading to gatorgirly’s blog right now

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in reply to: What questions should I ask the Ophthalmologist? #1176763

Hi,

Thank you so much for the great suggestions and information. The questions are great and I will ask them all!

gatorgirly I would love for you to PM me the link. Also I will definitely bring pictures of what I used to look like to my appointment. I have to look for some though because I tend to tear them up as I find them…

I really don’t mind if they do both eyes at the same time. The less I have to look at my face now the better. Also, I have a great support system and very very very thankful for them. Ever since I’ve been dealing with my vision changing, I sometimes use my hands to get around or count my steps. don’t get me wrong I can see but it very obvious to me that I don’t see they way I used to. I’ve become somewhat obsessed to the point that I know that I need these surgeries. We were not born this way.

I’m even more overwhelmed than ever before…but that’s ok because its for my own good.

Forgive me if I don’t use the big words….

snelson, thanks to you as well….I figured there was an order..which makes sense but did not read it anywhere. The one for double vision is needed because I definitely have it. Left, right, up and down its there but not when i look straight or turn my head in whatever direction I need to look in.

The sensitivity to light is ridiculous. I prefer to be in the dark or use a soft dim light because I can see better and my vision is affected when I’m outside during the day-hence why I wear sunglasses all day every day. I still wake up feeling like they are rocks in my eyes and I’m pretty sure the left eye is not closing when I go to sleep at night. I almost always wake up at least 2xs a night (unless I take prescribed sleeping pills) at which time I usually put in eye drops. I still use the ice packs to relieve the pressure and I’m not getting as many headaches.

I need to have the fat removed and the bone. My eyes are out there and it looks like I have two swollen rainbows under my eyebrows; the left bigger than the right. I don’t think I will need lower lid but upper lid…yes for sure I can have the “deer in the had light look” no doubt. And my eyes need to reset. They look like golf balls when I close my eyes. They can’t get any bigger. The last time it was measured I think the specialist said they were 17 (does that make sense?)
The other things mentioned medial, lateral walls orbital floor or a combination….not sure and never even heard of that so back to the drawing table literally.

I read from some of the other posts (1996 or 1998) that I won’t be able to swim in a lake or river or anything over 5ft…something about sinus infections.

I now know that there are three surgeons involved. Paediatric Ophthalmologist, ENT, and Ocufacial Plastic Surgeon…oh no 4 and a plastic reconstructive surgeon. I don’t know if the ophthalmologist I’ve been seeing specializes in ocuplastic surgery or if he is a paediatric ophthalmologist but he did say he does surgeries and mentioned removal of bone and fat; that it would be messy blah blah blah so I’ll have to ask him what he specializes in when I see him on Tuesday. I can’t believe what this disease has done to us.

Scratching my head, tears are coming now…. Gosh I just want to look like I did before or at least as close to it as possible.

Thanks again everyone

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in reply to: What questions should I ask the Ophthalmologist? #1176760

Either way I’m nervous about the surgeries but I will continue to research and check out the videos suggested.

Kimberly, how do I get to them?

What would I do without you guys? Thanks so much for responding with suggestions and questions that I didn’t even think of.

You guys ROCK!!!

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in reply to: Wife diagnosed today with Graves. Going to see endocrinologist. #1176745

Hi Tim,

I just wanted to chime in for a bit. The others who have already responded to your post are far more experienced (if you will) than I am.

I am a patient and I too encourage you to explore more, read more, and ask A LOT of questions. A second opinion never hurts. After all this your wife’s life and yours too. I don’t believe that there are any “quick fixes” though and whichever treatment you choose I’ve learned that it will take time.

I chose to have Total Thyroidectomy; 3 weeks ago this coming Monday and I have a scar but honestly speaking its very very difficult to see. The incision is clean as if they used a laser beam. I was even surprised but I believe that speaks to the surgeon and his lengthy experience (over 4000 TT’s). There was also No damage to my vocal cords (1 in 4000). I chose the TT because the ATD’s were not working for me personally and I’ve read and heard that some people who have RAI have had some reoccurring issues as if it the treatment didn’t take to them somehow. Also I have graves eye disease and for some it can cause more irritation to the eyes. My endo didn’t recommend it either.
For me, I couldn’t take that risk. So far I have no reservations about the decision I made. Now my goal is to continue getting well:)

I wish you both good luck in making your decision and I hope that you will continue to visit this site. Other patients share their experiences and the forum also offers valuable and informative resources!

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in reply to: New problems with eyes #1175186

Kimberly,

I will be seeing the ophthalmologist next Wednesday and I plan on seeking a second opinion. The problem he may not refer me and then what? My family physician certainly won’t. He said he doesn’t want to step on any toes since he already referred me to the ophthalmologist I’m currently seeing now. Truth is..physician and specialist are in the same medical plaza-the buildings are adjacent to one another. So I get it.
Nevertheless, when I see the Ophth…..next week I plan on asking for a referral to another one (preferably the hospital where I had my TT done..the care was impeccable and they have an ophthalmology department there as well) but I wanted to ask if he, the ophthalmologist, could refer me to a neuro-ophthalmologist? Or does there have to be optic nerve involvement for that kind of referral? I also have a routine check up with my optometrist a day before I see the specialist-maybe she can refer me? Either way I definitely want a 2nd opinion.
I’m not sure what’s going on with my eyes-one minute I think it’s getting better and then the next….not so much. For example last night I had a real headache and the left eye which is the bigger one just hurt. Ice helped for a bit but I took 2 tylenol with codeine for some relief. I also don’t think my eyes are closing completely at night and it just seems like its getting worse.

I guess it also doesn’t help when your family physician tells you that you’re in denial and that you will never look the same again. Whatever Doc..you guys don’t even have all the answers so why are you trying to convince me of what you don’t really know. Just because you haven’t seen it doesn’t mean it will never happen. Sorry about that…a little venting is good for the soul lol

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in reply to: Anxiety Leave us Alone! #1176646

LOL..now I get why Shirley suggested it. I will try:)

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in reply to: I’m ready to take the bridge! #1176718

I’m so sorry that you are feeling this way and I pray that you get some relief soon. I wish it wasn’t so hard to find and get quality care. Please try to get into the lab to have your blood work done. I know its hard-rest assured I know the feeling. When you speak of the “bridge” what do you mean? I think I have an idea but I hope I am wrong.

Hope these quotes help:

“The greatest act of faith some days is to simply get up and face another day”

“I am woman, I bend I don’t break”

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in reply to: Not new to thyroid issues, but new to site #1176671

My TED is more severe so I think it would be in my best interest to get a referral to a neuro-ophthalmologist. It really seems to be a good idea especially when my current ophthalmologist told me that any surgery I do on my eyes would be cosmetic??!!? Umm I wasn’t born with eyes like this so I’m not sure what he meant and I tried not to take it personal.
Now to search for a reputable neuro-ophthalmologist in my area and hope that he/she is not booked solid.

Wish me Luck!

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in reply to: Anxiety Leave us Alone! #1176644

Thanks Shirley..I honestly love reading your posts and I really appreciate you taking the time to respond.

The goal last night was to get to sleep by 10:30pm last night but I ended up resetting the sleep button on my tv twice..I think I finally feel asleep around midnight and woke @ 5:47am, fell back asleep until 7am (my tv auto turns on). So i’m getting there.
I’ll try the radio idea for sure but what is the NPR station?

Until next time,

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in reply to: Help, desperately please if anyone can.. #1176466

Rae5 don’t be sorry about sharing your relationship issues. I’ve definitely been there but at the time I didn’t realize that my illness was contributing to my breakdown. I wasn’t the only one to blame and I refuse to take all of it.
I don’t know the man you speak of and I won’t judge but he probably isn’t as strong as you are. You are right though, it was a choice that he made and why should you sneak around? After all, you’re not contagious and you’re both grown people. You have a son to be an example to also and for that I commend you. You wrote about being more patient and that it may have helped…maybe or maybe not-follow your gut and you can’t go wrong.

Please try not to stress about it-easier said than done I know this but it’s so important. I struggle with stress and worry so I’m not just talking out my young yang. Continue to use this forum as your outlet. It has been my ROCK and the people here are absolutely amazing and supportive. Guaranteed.

Take it one day at a time and if at first that’s too much, then 1 hour at time and work your way up. Like snelson said, we all can relate to a bad day. You Will get through it!

Take Care

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in reply to: Not new to thyroid issues, but new to site #1176669

Welcome, welcome, welcome. This is not my site but its my favourite because its offers so much support and valuable information. I can’t remember if you said you had GD, though you mentioned that you had a TT(I’m still learning so forgive me if that makes no sense)

Your posts just confirms how this disease attacks; when it wants, how it wants. Frustrating to say the least. I’m glad you shared your story and I’m praying that you get some relief too. I too have the eye issues (both eyes) that started about a year (I think) after I was diagnosed. I recently chose to have the surgery and I really hope to see some changes in my eyes within the coming weeks. The surgeon (who was amazing btw) seemed to be convinced that the surgery would help. So I continue to pray about it.

Kimberly, I never heard about the selenium supplements…wonder if they’re available in Canada? I do watch what I eat much more now than ever, especially foods with sodium. But I love food so that’s a challenge in itself. But it’s all about discipline I think.

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in reply to: Anxiety Leave us Alone! #1176642

Thanks so very much for responding. I did visit with my family doctor who suggested that the Levothyroxin may be too much for me (100mcg) but agreed that we should wait until I check my levels which will be in about 3 weeks. He also checked my pulse and found that it was beating too fast. He prescribed some meds for 1week that he said would help with sleep and anxiety.

I know I also need to work on getting to bed early enough to get a good nights sleep. I just hate laying there not being able to fall asleep so I turn on the tv….bad choice. Anyways it’s a work in progress:/

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