[Momof5]

in reply to: Questions about RAI and TED #1177809

I read through all that and printed those pages on the eye piece. Buy, I didn’t read anything about being a smoker or not and if that affected those who had worsening symptoms.

I know there is no guarantee, it seems like I read a lot of stories of those who didn’t have any eye involvement prior to RAI then developed it after. Since many don’t say if they were smokers or not, I wonder.

[Momof5]

in reply to: Question about your uptake scan #1177747

Thanks for all the replies. I think I’m just wishful thinking that all of this will go away and there was some mistake!

[Momof5]

in reply to: Gaah! More confused than ever! #1177753

I don’t eat seafood, so I’m safe there. I just feel lost and confused. You read one thing on the internet and the doc says another. I just wanna do the *right* thing. I know that’s a silly way to think of it.

I know I’m in the throws of the disease right now and can’t get a handle on my emotions. That’s so not me and it’s driving me bonkers.

I wish I wasn’t so afraid of the eye thing….I could then do the RAI.

[Momof5]

in reply to: Gaah! More confused than ever! #1177750

Thanks, Alexis. She was very comforting. She said I couldn’t have surgery right now anyway. I’ve started the Methimazole two weeks ago and don’t feel much relief yet. I’m also on 50 mg of Atenolol. She is actually running labs next week (three weeks) just to see if my levels are coming down at all and said we could adjust to a higher dose for the next three weeks (or so) to get me a little more settled.

The one thing she confused me with is the RAI…she said I’d also want to be in a more normal range before doing this. While I know it’s helpful, but I thought you could stay on ATD’s while waiting for the RAI to take affect.

I had a liver panel prior to starting them, and she ordered another next week. She said liver enzymes can be elevated just from being hyper too.

She also suggested I get back to working out and exercising a little. I was a 5-6 day a week exerciser and my bp and pulse shot up so I quit. It’s stable now, so she said it would be good for me and the anxiety. I’m gonna start slow.

[Momof5]

in reply to: Question about your uptake scan #1177741

Well, I take a multivitamin every day too. Wasn’t told to stop it. Guess it doesn’t make a difference now, but it keeps niggling at me.

[Momof5]

in reply to: TT Question #1177718

Hi Di!

I *think* I have a good endo, but I have only met with her once so far. We are meeting with her again tomorrow to go over treatment options. We have made a list of all our questions now that the shock has worn off a bit. I was adamant about no RAI the first time, and she didn’t mention TT, so we started pills. Now that we know stats and stuff, we want to understand the risks more.

How about you?

Carrie
Mom to the Fab Five

[Momof5]

in reply to: TT Question #1177714

I wonder this myself. What do the antibodies do when there is no thyroid to attack? I read on a link Kimberly posted (I think) thatit can take a year for antibodies to diminish after meds or TT, but less likely in RAI

I am near Chicago too (saw your New Lennox, IL). Hope you found some good drs.

[Momof5]

in reply to: New and scared – just like everyone else. #1177693

I also worry about going into remission and then worrying that it will come back. What a crazy, vicious circle.

[Momof5]

in reply to: New and scared – just like everyone else. #1177692

I feel pretty lucky that my docs seem to be doing the right things. Although, they didn’t test antibodies before starting meds. I requested that they do, but the lab messed up the order and I had to go back yesterday for more blood. The diagnosed me based on the uptake and scan alone. There’s a teeny part of me that is holding out hope that they’ve misdiagnosed and i won’t have any antibodies (wishful thinking, I know).

They did a full cbc and liver panel when my pcp originally tested for thyroid. I’m not sure they did it yesterday, but she did say she would do it at the 4 week mark.

Today – I feel a bit different, although I can’t tell you why. I still woke up with bad shakes and heart going crazy.

Thanks for the words of encouragement!! It is greatly appreciated.

[Momof5]

in reply to: New and scared – just like everyone else. #1177689

Thanks. I find it strange that I didn’t find this forum first. I found two others and found a link one of the posts referenced and clicked in it and ended up reading hundreds of pages in here.

It’s a difficult choice….I don’t want to feel miserable for two years, if that’s what happens with the ATD’s (I mean if they can’t stabilize my levels). I want to enjoy my time with my kids while they are still young (did I just say that?! )

I don’t think I would handle the RAI well. Type A personality and waiting and wondering don’t go too well.

I am sad to read so many horror stories and misdiagnosis as that, well, just breaks my heart that people can’t get good
treatment.

I don’t have a goiter and the uptake said it was slightly lopsided with one side being a little bigger than the other. I have never smoked, so I guess those are to my benefit.

[Momof5]

in reply to: New and scared – just like everyone else. #1177686

I have never drank coffee, and gave up all sodas and juices a few years ago. I have only been drinking milk (chocolate for a treat!) For the past year or so. Now, I have cut my milk consumption to one glass a day and just water the rest of the time.

Do you have any information on the risks of our kids developing GD? I don’t want to test them needlessly, but also song want them to go undiagnosed during critical times in their lives. Right now, they are still young (11,9,7,7,7), so I don’t know what to do, hut I am concerned. It seems like they may be predisposed to thyroid issues (especially my daughter), but not necessarily graves or hyperthyroidism. I have a great aunt that supposedly had graves, but my grandmother had low thyroid and I don’t know about my mom (although her sisters seem to think she didn’t have thyroid issues). My one aunt had low thyroid for approx 10 years.

I made an appointment with an ophthalmologist, hopefully to just ease my fears. I am also seeing a naturopath on Saturday in hopes of finding some relief from symptoms.

I also like something you guys say about the success stories, and not finding many because those people go on to live their lives, jot spend time on message boards. That was a break thru “aha” moment for me.

Thank you for the support.

[Author]

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