[beebello]

in reply to: Will RAI always lead to some kind of Thyroid Eye Disease? #1169248

I had a really good visit with my endo yesterday. My T3 and T4 are still *almost* normal, but not there yet, but considering in July they were both 5x over normal, they have come down A LOT in just 2 months. TSH hasn’t changed a bit ” title=”Sad” /> I’m feeling really good on 10mg of methimazole a day (I started on 30mg) so we are just going to stay with that for now. I also am taking a half of one beta blocker pill (25mg) a day and Vitamin D. It’s amazing to me how different I feel compared to before I was diagnosed – I had no idea how bad it was until I started feeling good – I’m sleeping better, I’m calmer, I don’t over-react to stressful situations and I’m not sweating & irritated by the heat anymore! Oh, and my hands don’t shake!!! yay!

I really feel at this point that my endo and I are on the same page. I’m very honest with him and all my doctors. I’m doing my homework and really felt accomplished at my appointment because I totally understood all the terminology – nothing he said surprised me. We are not going to rush any other treatment at this point since we’ve seen results with the meds. I even got the *OK* to start exercise.

As far as TED, my endo said to keep monitoring my eyes with my opthamologist – he’s sending all my labs to all my doctors. I told him I wish there was something I could do to prevent TED and he said I am – I don’t smoke! Now we’ll shall see what happens over time.

I was so scared and upset when I was first diagnosed, but doing research has really put my mind at ease. I’m still living my life…just a little differently. I don’t stress about it anymore.

All the info you all have posted in this tread really helped me in preparing for my appointment yesterday – thank you!!

~Becky

[beebello]

in reply to: Will RAI always lead to some kind of Thyroid Eye Disease? #1169246

Thank you Kimberly! I really appreciate the added information!

I have an appointment with my endo this afternoon – wish me luck!! (:

~Becky

[beebello]

in reply to: Will RAI always lead to some kind of Thyroid Eye Disease? #1169243

I really appreciate all the information I can get Bobbi & Shirley! I feel I’m getting a better grasp on what I’m dealing with. I read somewhere that RAI can actually make TED worse or bring it on stronger. There’s information out there that I’m just not sure exactly where it’s coming from – how valid it is. Especially when I get it online I really don’t know who’s putting it there. My doctor said to be careful about online info & I am. I ordered a couple books & like them, but they even have mixed reviews. I like this board because of the personal stories.

I’ve only seen my endo once – when I was diagnosed – and have an appointment coming up this week. I like him so far, but am curious to learn more about his philosophy on treatment. I know the route I’d like to take, but I also know I have to be safe about it. I’ve followed his instructions & feel like it’s under control. I’m thankful for that right now. I’m concentrating on staying calm & am looking into meditation because I know that will help me in the long run.

Thank you so much for your responses!!

~Becky

[beebello]

in reply to: Will RAI always lead to some kind of Thyroid Eye Disease? #1169239

Thank you Shirley for your response! I do know about the surgery, but, from what I’ve read, it doesn’t seem to be as popular in the US? Maybe I’m getting too ahead of myself trying to predict what’s going to happen and I really can’t control that. I’m becoming content with learning as much as I can and doing the best that I can with the input from my doctors. It is what it is.

I do feel comforted to see on this board that I’m not alone and that really does help.

Thanks again (:

Becky

[beebello]

in reply to: Will RAI always lead to some kind of Thyroid Eye Disease? #1169236

I should also mention that I have been seen by an opthamologist recommended by my endo & GP and at this time he sees no evidence Graves in my eyes. I will see him again in another month or two just to monitor. I’ve read that it can just appear and that’s what I’m worried about. I just found out that someone I’ve known for a while has GD and some time after RAI her eyes bulged. I know there is much success with RAI, but I’m hoping to hear some success stories where TED was not necessarily a result of RAI.

Thanks again

~Becky

[beebello]

in reply to: Are radiation and thyroid removal the only options? #1169462

Thank you for your reply Kimberly! I appreciate it! It’s starting to sink in more & more that this really isn’t going to be a quick & easy fix. It’s a new reality for me. I’m concerned with some of the stories I’ve read & trying not to get scared. There have to be some positive stories out there though, right? I haven’t seen too many.

Today was the first day that I haven’t felt right – light headed & kind of spacey. I’m calling my doctor first thing in the morning. I’ve been on meds for just over 5 weeks now.

Thanks again,
Becky

[beebello]

in reply to: Are radiation and thyroid removal the only options? #1169460

So, I’ve been searching around here for the past couple hours and think I’ve found some answers. I am looking forward to the next time I see my endocrinologist. I feel like I will ask informed questions.

I’m still wondering, though, when do you get to the point that radiation or surgery becomes necessary? I’ve noticed some people seem to go through one or other very soon after being diagnosed and others are on antithyroid drugs for a longer period of time.

I really appreciate any input.
Thank you!
Becky

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