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in reply to: Eye Problem Post RAI? #1073230

Will he really recover and have a normal life? Right now that just doesn’t seem possible.

[amyl]

in reply to: Eye Problem Post RAI? #1073228

Thanks for your note Dolores. How long has your son been dealing with GD? So far, my son’s eye issues are mild and I hope they stay that way. He’s really at the end of his rope with all of this and I can’t blame him. I feel the same way at times. All he wants to do is go to school and not be known that "the sick kid". He often misses months of school at a time and when he returns, he gets comments like…."gee, we thought you were dead" or "we heard you had AIDS" and other scary comments. He just wants to be a teenager, get his driver’s license, maybe get a girlfriend….normal things but Graves’ has taken all of that away from him. I do try to stay positive for him but I feel like a hypocrite. I tell him all of the positive things that I learn from this site but the positive things don’t happen for him…at least not yet. Aside from all of the typical GD symptoms, my son suffers from severe and chronic nausea. We’re just hoping that doing RAI will kill his thyroid and HOPEFULLY cure the nausea. If it doesn’t, I don’t know what I’ll do. A person can only take so much.
I will try to stay positive for my son and basically hide how I’m really feeling.
Amy

[amyl]

in reply to: Eye Problem Post RAI? #1073224

Thanks so much for your kind words and advice. I guess it just all got to me last night when I was talking to my son. I’m just sitting here crying my eyes out wishing this would all go away. I’ll pull myself together before my son comes home so he won’t know how upset I am. If he did, he would try to cheer me up….he’s a great kid.
It seems as though we get through one problem and then another one shows up. Last night, my son asked me what we should do if the RAI doesn’t work. I told him he could try the surgery then . It struck me though…what if the RAI doesn’t work. The way things have gone for him, It wouldn’t surprise me if it fails. How long do we wait before we know if it’s failed? I don’t want my son waiting any longer than he has to….he needs something good to happen to him.
I know that the odds are that the RAI will work and that his eye issues should me more-or-less mild but there’s always the "what if" in the back of my head. I just wish I could make this go away for him.
Sorry for whining today!
Amy

[amyl]

in reply to: Eye Problem Post RAI? #1073221

Hi Dianne,
I’ll be honest….I’m not so much scared as I am angry. I am so angry that my son has to go through all of this crap. He’s such a good kid and really doesn’t complain very much considering what he’s going through. I’m angry that this happened to him and it’s taking forever to get better. His problems started over 3 years ago and I’ve been telling him to just be patient…it’s going to get better. 3 Years I’ve been saying this!!! When is it finally going to happen?! It’s just not fair!!!! I would do anything to make this better for him. Last night he told me that he’s considered suicide because he can’t take this anymore. He promised me he wouldn’t committ suicide and I believe him…he’s just that frustrated. I keep telling him it’s going to get better but I really feel like I’m lying to him. It never gets better…it just keeps getting worse.
I’m sorry…I’m just so angry and frustrated at this point. I’ve been trying to call an opthamologist but they haven’t returned my call yet. I can’t believe I have to drag my poor son to yet another doctor. This horrible disease has robbed him of his teen years and he’ll never get them back. I’ve had it with medicine!
Amy

[amyl]

in reply to: New to GD, maybe. #1073275

Hi!
My son was diagnosed with GD in April, 2008 so I can tell you about his experience. At that time, he was extremely and chronically nauseous (which is not typical of GD), his hands were very shaky, he was HOT all of the time, had a lot of trouble sleeping, and had high blood pressure (these symptoms are more typical of GD). His doctor first ordered a blood test and found that his TSH, T3, and T4 levels were "out of whack". She ordered a "thyroid uptake scan" and the results from that test confirmed that he has GD. The uptake scan is a non-invasive test where he drank a little bit of radioactive iodine and scans were done on his thyroid to see how much iodine was absorbed by his thyroid. We were told that this test is the definitive test to determine GD.

The treatment options offered to us were: 1) take anti-thyroid meds 2) Neutralize his thyroid by ingesting a large amount of the radioactive iodine to essentially "kill" his thyroid or 3) surgically remove the thyroid.

We chose option #1 so he was placed on a medicine called Methimazole. The hope was that he would be on the medicine for 18 – 24 months and would eventually go into "remission". Well, after 10 months of being on the medicine, it was clear that he wasn’t going to go into remission so we then opted for option #2, which is commonly called RAI. So on 2/17, my son had RAI. Today is 2/28 (I think) and he’s still hyperactive but that’s to be expected. We were told it would take AT LEAST 4-6 weeks before he turned from hyper to hypo. Some people have said it could take at least a year to reach this point but we’re hoping for the best. Once my son becomes hypo, he will then have to take thyroid replacement hormones for the rest of his life. After watching my son struggle with being hyper, being hypo will be a relief. My husband and I are both hypo and our symptoms are so minimal compared to what our son’s gone through.

So, that’s been our experience with Graves’. There are moderators on this Board that can probably explain this better than I have and they’re wonderful at answering questions. I have learned so much from this site and I only found it a few weeks ago.

Good luck!!!
Amy

[amyl]

in reply to: Newly Diagnosed w/GD glad to find this board #1073402

Welcome!!
I’m glad you found this Board and, at the same time, I’m sorry that you need it ” title=”Smile” />
I’m definitely no expert but it sounds like you may have caught this early. It also sounds as though you aren’t too troubled by your symptoms which is wonderful. The people on this site are so helpful and can probably answer most of your questions. Good luck!!
Amy

[amyl]

in reply to: Methimazole after RAI?? #1073527

Thanks Ski!
My son is on Nadolol because his blood pressure has been high for quite awhile. Even when he went Hypo, his blood pressure was high so he may stay on the Nadolol for awhile. If "dumping" does occur, will he feel more hypo after the dumping is done or will it still take awhile for that to happen? We’ve been figuring it will be 4 – 6 weeks, at least, before he starts feeling better….sigh…I wish it were more immediate ” title=”Smile” />

Thanks,
Amy ” title=”Smile” />

[amyl]

in reply to: need some questions answered…new to this!!! #1073919

Hi,
My son was diagnosed with Graves’ when he was 15 years old but I’m pretty sure he had it for at least 1 or 2 years prior to his diagnosis. My advice to you is to learn as much as you can about Graves’ and then try to apply it to your situation. My son has most of the typical Graves’ symptoms but his biggest symptom is severe and chronic nausea (which isn’t typical of Graves’). He started on Methimazole in April 2008 and eventually went into a Hypo phase. His nausea disappeared then and his only real problem was that he was EXHAUSTED! His doctor lowered his dose and he went back into a hyper phase. The nausea returned and is horrible for him. In talking with our doctors, we all agreed that our son probably wasn’t going to go into remission and the nausea was intolerable. My son missed almost 3 years of school because of his nausea so we were getting desperate.
We finally decided to try RAI. My son had RAI on 2/17. We’re hoping he will show signs of improvement in the next 4-6 weeks.
Being the mother of a child with Graves’ is very frustrating. We want to do what’s best for our child and we don’t really know what that is. I try to be as informed as possible before making any decisions on his health care. I’m still hoping the decision to do RAI was the right one. As I said, learn all that you can about Graves’, find doctors that you’re comfortable with and then do the best you can to help your child (I’m a big believer in following my mother’s intuition). I’ll let you know how my son is doing over the next several weeks.
Good luck!
Amy

[amyl]

in reply to: Doctor Recommendations #1073516

Hi,
I live in Indiana but I took my son to the Mayo clinic in Rochester Minnesota. It was a long trip but very much worth while. My son had been incorrectly and treated by local doctors for Chron’s Disease. When he wasn’t getting better, I decided to take him to Mayo and they correctly diagnosed him in just a few days. When we returned home, I asked friends and co-workers for names of pediatric endocrinologists and then I researched their recommendations via the internet. Because my son was misdiagnosed for so long, I now rely more on my "mothers intuition" when making decisions about his care.
Good luck!
Amy

[amyl]

in reply to: Still feeling so ill – think I am going off my head #1073537

There are so many people that care about you and want you to feel better. You were given some great advice and support yesterday….please try to remember it when times get tough. You are being assaulted by so many things, it’s no wonder you’re having such a hard time. If you can just hang on and remember that this isn’t your fault. You are a victim of Graves’. You didn’t choose this disease, it chose you. Luckily, it WILL GET BETTER!! You will get through this and you have a wonderful family that loves you and wants you to be there for them. Stop trying to take care of everything and just enjoy your family. I’m so glad your son gave you that hug…I’m sure he’s got a lot more hugs just waiting for you and I’m sure he loves getting hugs back from you. Hugs are great medicine!!!!!
I hope today is a better day for you!
Amy ” title=”Smile” />

[amyl]

in reply to: Still feeling so ill – think I am going off my head #1073532

Hi,
I just sent you a private message. Please read it.
Amy ” title=”Smile” />

[amyl]

in reply to: Still feeling so ill – think I am going off my head #1073530

Hi,
It sounds as though you are going through a very rough time right now but you need to hang in there. I know Graves’ can make you very emotional and having a baby can make you very emotional so you’ve got a lot going on in your body. If you truly feel suicidal, you need to get to a hospital ASAP!!!! They can help you. You need help right now. You can’t take care of your family if you’re not well so please, get some help. You will feel so much better!!!
Please let us know what you decide to do.
Amy

[amyl]

in reply to: Uptake Scan Today, RAI Tomorow #1073703

Thanks Dianne! I hope it works sooner rather than later too. I’ll definitely keep in touch.
Take care!
Amy

[amyl]

in reply to: Uptake Scan Today, RAI Tomorow #1073701

Today, my son’s uptake was 72.5% and they gave him 15 milicuries of RAI. Hopefully that will be enough to ablate his thyroid.
Amy ” title=”Smile” />

[amyl]

in reply to: Uptake Scan Today, RAI Tomorow #1073699

Thanks Dianne,
That actually does help me. At least I know to expect an amount around 10 milicuries and not 100 milicuries. I’m keeping my fingers crossed that our doctors know what they’re doing. I’ve been asking everybody lots of questions which hopefully tells them that I’m watching them carefully ” title=”Smile” />

As always, thanks for your help!
Amy

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