[amyl]

in reply to: Uptake Scan Today, RAI Tomorow #1073697

Thanks Dianne,
I talked to the Tech about how much iodine they will be using tomorrow but he didn’t know. They will be doing another scan before giving my son the iodine. The results of the new scan will be used to determine the correct amount. I can ask how many milicuries they will be giving him but how will I know if it’s enough? Can you give me an idea of what an adequate amount would be?

Thanks!!
Amy

[amyl]

in reply to: Uptake Scan Today, RAI Tomorow #1073695

Hi Ski,
I don’t understand what you mean about ~85% staying in his thyroid. Can you explain that please? The tech said they would probably need a lower dose since his uptake was so high. I didn’t really understand why that was. The goal is total ablation of the thyroid.

Thanks for your help!
Amy

[amyl]

in reply to: Question About Eye Problems #1073735

Thanks for all of your responses. Ski, you’ve made me feel very relieved…thank you! It’s a relief to know that if my son does develop TED, it shouldn’t be too bad for him.
Take care!
Amy

[amyl]

in reply to: Question About Eye Problems #1073732

Do you have any idea what the chances are that my son will develop TED? I think that would just "put him (and me) over the edge". He’s terrified of his eyes bulging. His eyes are actually very deep set so I’m hoping that will be an advantage for him. I’m feeling very overwhelmed with this disease. It seems that the symptoms/problems are endless. Does anybody every have a mild case of GD? Does everybody develop TED? Can TED be mild? If the RAI is successful, will my son be done with GD? If not, will his symptoms be more mild b/c he had RAI?

Thanks!
Amy

[amyl]

in reply to: Question About Eye Problems #1073730

Thanks again Dianne!
I was able to talk to the nurse at our Internist’s office (she ordered the MRI) and confirmed that the MRI did not show any sign of inflamation of my son’s ocular muscles. I also talked to the nurse at our Endo’s office and she relayed my concerns to the Dr. He feels confident that RAI shouldn’t impact my son’s eye problems as they don’t appear to be related to GD. I sure hope he’s correct and from what you’ve written, he probably is. So, here’s my next question. What is TED? I’ve read references to it on this Board but I don’t know what it is.

Thanks!!!
Amy

[amyl]

in reply to: Question About Eye Problems #1073728

Thanks Dianne,
My son had an MRI a couple of days ago and the doctor said the results were "normal". They were doing the scan to check his pituitary gland and his occular muscles. I think I need to talk to her to make sure the muscles didn’t show any signs of inflammation.
If my son is having eye issues related to GD, will RAI make those issues worse? He’s scheduled to have RAI next Tuesday (2/17). I’m sure I can’t get him in to see an opthamologist before Tuesday..I don’t even know any opthamologists in my area. I’m thinking I better check with our Endo to see what he thinks.
I really wish there was just 1 type of doctor that has all of the answers. I seem to be getting bits and pieces from each doctor. I learn more from this site about how the symptoms are all related that I do from our doctors. Does anybody else feel that way? Should I post-pone my son’s RAI?

Thanks so much!
Amy

[amyl]

in reply to: Is GD considered "life threatening"? #1074104

My son was tested for celiac disease and his test was negative. It’s not the wheat that bothers him, it’s the cheese….he can’t handle dairy when he’s in a hyper phase.

[amyl]

in reply to: New here.. and boy, do I need help! #1073929

Hi Jenny,
I read your entire post and just thought…wow… You sound so stressed out and without hope. I’m no expert on this disease…my son has it, not me. I just wanted to let you know that there is somebody out in cyberspace that cares about you and I hope you get some relief soon. Why don’t you have your husband read your post? It might help him understand just what you’re going through. From what I’ve read of other people’s posts, it sounds like you’re not alone with your concerns. I’ll leave the advice to the expert and just say "Hi" and I hope you get some answers soon.
Hang in there!
Amy

[amyl]

in reply to: Mother of a teen girl with graves #1073936

Hi Quinn,
My son is 16 and has Graves. Usually, he is delightful and very respectful but today, he’s just plain MEAN. He’s been feeling really lousy for over a month now and I just started him with a new doctor. She ordered a blood test yesterday that indicates he may be having trouble with his gall bladder. She’s given him some new meds and ordered an ultrasound for tomorrow. My son is angry because this is exactly what every new doctor does….they order new tests and change his meds. I understand how frustrating that can be but I really like this doctor and am so hopeful that she’ll be able to help him. Unfortunately, I’ve been encouraged by every new doctor, in the beginning, and then we don’t get any answers or worse, they say they can’t help us. I feel like Charlie Brown and Lucy when Lucy is trying to convince Charlie that she really will hold the football so he can kick it. Then of course, at the last minute, she yanks it away. This is a horrible disease…period!!! Healthy teenagers have such a hard time getting through life, sick teens just have too much to deal with. They handle it any way they can. I’m sure as your daughter gets older, she’ll find better ways of coping but for now, bad behavior may be the only way she can deal with it. I try to give my kids some extra room when they’re angry, but I’ll only let them go so far and then I end it. Everybody gets upset and cranky when they’re sick but being purposely hurtful isn’t allowed in my book. Does your daughter confide in you or anybody else? My son likes to talk to his friends so I try to give him every opportunity to do that. Maybe your daughter has a teammate that she can talk to or maybe somebody from school. I know it’s hard and you sound like a great Mom. Try to hang in there and know that you are NOT alone. Even healthy teens can be mean….it kind of goes with the territory ” title=”Smile” />
We moms need to stick together ” title=”Smile” />
Amy

[amyl]

in reply to: How long should I plan be off work for surgery or IRA? #1073970

Thanks Ski and Dianne,
As always, your advice is very welcome! This is such a hard disease to deal with and it leaves me spinning. I keep going round and round about what to do. I am planning to talk to my son’s doctors to get their advice too but I feel strongly that I need to follow my gut on this. Unfortunately, my gut is confused too ” title=”Smile” />
I think what’s the hardest of all is that this has been going on so long that we just want it over with. I’m finding it hard to be patient and patience is so important with GD. I have hypothyroidism so I know it’s a long process to find the correct dose of meds and that’s ok for me because the side effects aren’t too bad. My son is the one struggling and I want to fix him now and that’s just not happening.
So…..enough complaining…. thanks for your advice and just for being there!! I’ll let you know how things go.
Amy ” title=”Smile” />

[amyl]

in reply to: How long should I plan be off work for surgery or IRA? #1073967

Hi Dianne,
We’re starting to seriously consider RAI or surgery for my son. He’s been so nauseous for over a month now and he’s had enough. I’m now trying to figure out which would be best for my son. If he does RAI, does he have to miss some school time? He’s not going to school all that much anyway right now because he’s too sick. He wants to do whichever will give him the fastest results. From what you wrote, it sounds like the surgery might be quickest. I honestly don’t what to do at this point and welcome any advice.
Thanks so much!
Amy

[amyl]

in reply to: How long doest it take on PTU to recover? #1074061

Hi Ski,
You said that GD is very damaging to the body and your body needs to heal. What exactly is damaged?

Thanks!
Amy

[amyl]

in reply to: High Blood Pressure #1074030

Hi!
My son was diagnosed with GD in April, 2008 when he was 15 years old. His blood pressure was also quite high so we were sent to a pediatric cardiologist. The cardiologist was hoping that my son’s BP would go down as GD improved and it did, to a point, but not enough. So, my son now takes Nadolol which does help control his BP. I’m sure the "facilitators" on this site will be able to give you some good information and direction. I’m glad you found this site. It sounds like we’re in very similar situations.
Hang in there!
Amy

[amyl]

in reply to: Is GD considered "life threatening"? #1074102

Dianne,
You are right on target! My son doesn’t look all that sick but he’s a mess internally. There are days when even I question how sick he is….and then I remember that he doesn’t need to look sick to be sick (that’s when the guilt begins). He couldn’t sleep again last night and spent most of the night vomitting, but he still went to school. He’s been missing more school lately and he’s afraid his teachers are going to all expect him to get his make-up work done asap. I was able to e-mail all of his teachers and educate them a little on Grave’s Disease and how truly sick my son is. Luckily, they’re all being pretty good about helping him get caught up.
Unfortunately, my son has so much trouble with his stomach that having something like a "pizza party" isn’t a good idea for him because it makes him so sick. He does love hanging out with his friends though. We’ve bought him all kind of gaming equipment to keep him entertained. I wish we could do pizza…it’s a lot cheaper ” title=”Smile” />
I’m still hoping that he’ll feel better once they get his meds right. It’s so unfair that he has to go through this because he’s really a good kid with bad luck. I wish there were some kind of organization that could give him something nice because he really deserves it.
Thanks for listening!
Amy

[amyl]

in reply to: Is GD considered "life threatening"? #1074099

Thank you for your notes! I didn’t think it was "life threatening"….just life altering, at least for awhile.
I don’t think he has any place special that he wants to go. I was thinking more of a party idea for him and his friends. When my niece had cancer, her Wish was to have all of her girlfriends go to a salon and have a day of glamour before going to the Prom. She loved that!
Have a nice day!
Amy

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