[amyl]

in reply to: Anyone else dealing with nausea? #1072002

Hi,
As Ski told you, my son has been dealing with nausea for 3 years. The first 2 years, his doctor thought he had Crohn’s disease. A year ago, we found out it wasn’t Crohn’s but Graves. He took methimazole for 8 months and went hypo for a very short time. During that short period of time, his nausea disappeared. As soon as he went back to hyper, the nausea returned. In February, he had RAI and is now hypo again. His doctor started him on Synthroid about 10 days ago but he’s still exhausted and he’s still nauseous. It’s very frustrating! We thought doing the RAI and becoming hypo would resolve the nausea but it hasn’t. His doctor said they can’t find a reason for the nausea….more frustration. Now, my son has become VERY depressed so his doctor started him on Wellbutrin. He took his first pill this morning and then called me from school to say his nausea was worse than ever. I really don’t know where to go from here.
My son also takes Zofran twice a day for the nausea but now our insurance company is saying they will only allow him 12 pills a month. He needs at least 60 pills month so we’re fighting the insurance company. Zofran is the only medicine that actually stops him from vomitting…it doesn’t eliminate the feeling of nausea though. He’s also tried phenergan, compazine and tigan but they don’t help.
I really hope that your nausea resolves once you become hypo.
Good luck!
Amy

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in reply to: Update on my son #1072036

Thank you for everything!!!!!

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in reply to: Almost 7 weeks post RAI #1072272

Hi Dianne,
I’ve missed you too! Thanks for the info (as always). I think it would be a good idea to find out what Zack’s levels are at this point just in case he does go head long into being hypo. I’m still hoping the nausea will resolve. I’ll keep you posted.
Take care!
Amy

[amyl]

in reply to: I feel so helpless #1072915

We just got back from seeing the Endo. It’s been 3 1/2 weeks since RAI so he said my son should start feeling better in the next couple of weeks (I hope he’s right). If my son is still exhibiting signs of being hyper at 8 weeks post RAI, he would send him for another round of RAI. He’s not expecting that to happen but he just wanted us to know. He’s also very hopeful that my son’s nausea will go away when he becomes hypo but he can’t guarantee it (CYA). Overall, I feel a little comforted. I guess we can wait a few more weeks for success to happen.
Thanks for all of the support!!
Amy

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in reply to: RAI for a 10-year old girl? #1072952

Hi Irene!
We were told that Graves’ symptoms could become more intense a week or two after RAI. In my son’s case, that didn’t seem to happen although maybe that’s what causing his increased nausea right now.
Eye problems can occur post RAI but they should be short-lived. In my son’s case, two weeks prior to RAI, he developed pain in his head and eyes when he moved his eyes. That resolved itself prior to RAI but then returned a week after RAI. It hasn’t been a huge problem for him, it’s more of a nuisance and we were told that it wouldn’t last long. We were also told that children usually don’t have as much trouble with their eyes as adults have and that once the eye problems are resolved, they don’t return. Of course, not everybody has trouble with their eyes after RAI so your daughter may never experience that.
Depression has been a huge issue for my son. He has suffered from depression off and on over the last 3 years because: 1) this has been going on for so long and 2) he feels terrible all the time so it limits what he can do 3) he misses so much school and all of the socializing that goes along with that 4) he hated being isolated for 6 days after RAI. His depression has been so bad that he thinks about suicide. It’s very scary! I believe that once he feels better, the depression will go away.
We were told by a pediatric endo. from Mayo, that the younger a child is when they have RAI, the higher the risk of developing thyroid cancer. Now, we weren’t told that our son would get thyroid cancer if he had RAI, just that the risk was a little higher. In one of Ski’s posts, she said that there is no increased risk of cancer for children that have RAI so you might want to talk to your doctor about this discrepancy.
As far as medication is concerned, we decided that our son will be on medication whether he’s hyper or hypo and hypo is much easier to control. I developed hypothyroidism right after the birth of my son. My symptoms were EXHAUSTION, extremely dry skin, hair loss, constipation, and severe abdominal pains. My GP attributed all of these symptoms to just having a baby that I was nursing and it was winter time. Luckily my ob-gyn checked my thyroid and found out that all of the symptoms were caused by my thyroid. It took awhile for my doctor to get me up to the appropriate dose of Synthroid but once I got to that level, ALL of my symptoms disappeared. Over that past 6 months or so, my thyroid levels haven’t been stable so my doctor has been tinkering with my medication. I don’t notice any physical symptoms at all. When my levels are stable, I only have blood tests a few times a year. Right now, because my levels are changing, I’m having blood tests every 6 weeks. So, I just take 1 pill every morning and I never have any physical symptoms of hypothyroidism. My son was taking 2 pills a day and was dealing with every typical hyper symptom as well as this horrific nausea. So, I think he will be very happy when all of his symptoms go away forever and he will only take 1 small pill each morning. It’s worth the trade off.
I personally don’t think there are any long term side effects from RAI. Have you heard about anything specific?
Amy ” title=”Smile” />

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in reply to: I feel so helpless #1072914

Rhonda….Thank you so much for the WONDERFUL advice!!! You really made me laugh and it felt so good
I am very tempted to do exactly what you suggested …. I’ll let you know how the appt. goes.
Thanks again for the much needed laugh!!!
Amy

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in reply to: I feel so helpless #1072912

He has 4 different anti-nausea meds that he can take including Tigan, Zofran, Compazine and I can’t remember the last one. Most of the time, Zofran will stop the vomitting but not the nausea….so he feels nauseous but doesn’t throw up. The other meds don’t do a thing for the nausea. He’s even tried taking the Tigan and Zofran at the same time and it doesn’t do much of anything for him. This has been going on for so long now that I don’t even bother calling the doctor because they don’t help.
Amy

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in reply to: RAI for a 10-year old girl? #1072950

Hi,
I was reading through all of these posts and I had a thought. You said that your daughter is currently in remission so that means she’s not dealing with any of the hyper symptoms. My son wasn’t in remission when he had RAI…he was hyper at that time. He’s having a really hard time dealing with all of the symptoms while waiting for the RAI to be effective. If your daughter could have RAI while she’s not exhibiting symptoms, she might have an easier time of going through the irradiation process. I also think it would be easier for her if she isn’t also dealing with the hormonal ups and downs of puberty. My son has been dealing with a lot of depression because of Graves.
Just something to think about ” title=”Smile” />
Keep in touch,
Amy

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in reply to: Eye Problem Post RAI? #1073239

Hi Patty,
Thanks for telling me about your eye experience. I’m sorry you had to go through all of that. I’m really hoping my son is spared the eye issues…at least the big ones. He’s been through so much and his symptoms tend to lean toward the extreme. His biggest problem is the nausea…it just NEVER goes away. We have pinned all of our hopes of a cure for his stomach on the RAI. If the stomach issues don’t go away when he becomes hyper….I won’t know what to do. So, I try not to think about it just yet. We still have a few more weeks before the RAI should be showing signs of improvement.
I appreciate everybody that’s given me advice and encouragement. I hope I can do the same for others.
Thanks!
Amy

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in reply to: RAI VS Surgery #1073035

Hi Sissy,
It sounds like you’ve enjoyed very good health, until now, and are very familiar with medicine and health care. Being a paramedic, you’re used to helping others. My only advice to you is to allow others to now help you. Graves can be very debilitating (sp?) and if you’re not used to asking for help, you may get pretty frustrated.
I wish you the best in making your decision. Keep us posted!
Amy ” title=”Smile” />

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in reply to: 12 year old daughter newly diagnosed #1073055

Hi Roxi5!
My son was diagnosed with GD when he was 15 but I’m sure he had it for at least a year (maybe 2 or 3) before he was correctly diagnosed. He misses a lot of school because he’s so sick. It’s tough on kids..they feel so awful but they don’t really look sick. My son is very lucky because his friends accept that he has limitations so they make accomodations for him when they’re playing sports. As a parent, it’s hard to watch your child be so sick for such a long time as the medicines aren’t very quick acting. My son was on Methimazole from April 2008 until Feb 2009. It was obvious he wasn’t going to go into remission so he had RAI on 2/17/09. We’re still waiting for signs of him becoming hypo. I hope your daughter goes into remission quickly.
Take care!
Amy

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in reply to: RAI VS Surgery #1073033

My son was diagnosed with Graves in April 2008 and he just had RAI on 2/17/09. He had been taking methimazole but it didn’t look like he was ever going to go into remission so his doctor recommended RAI. We discussed the pros and cons of RAI vs. surgery and ultimately, my son said he wanted to try RAI (my son is 16). His doctor didn’t like the surgical option because he said the surgery is very delicate and left too much room for error. His thoughts worried me. I figured if he didn’t have faith in a surgeon, then I didn’t either. Actually, we had decided that if we ever decided to do the surgery, we would go to the Mayo clinic to have it done b/c they have LOTS of experience with the surgery. My son decided to try RAI and if it didn’t work, then he would go ahead with the surgery.
As of today, my son still isn’t feeling any effects from the RAI. He’s still very hyper which is frustrating. We were told it would take at least 4 – 6 weeks before he would feel any changes but it’s hard to be patient….we want the time to go faster. One thing to consider with RAI is that you can’t be around people for approximately 6 days because you will be radioactive. That was very difficult for my son. He couldn’t go to school or to the movies or shopping….etc. He just hung around the house and was very bored and lonely.
I don’t know if any of this helps you with your decision. It’s really a very personal decision and you have to do what you think is best for you. Also, don’t let your doctor rush you into making a decision. You need to take your time and be very comfortable with your decision.
Good Luck!
Amy

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in reply to: Freakin Out…BIG TIME!!!! #1073048

Hi Buttamama!
Please try to relax. Being Hypo is not such a terrible thing. I was diagnosed as Hypo 16 years ago and I’ve been taking Synthroid ever since. It took a while for my doctor to determine the appropriate level of Synthroid that I should take but once I reached that point, I was fine. I still have to have my levels monitored every 2 months or so but that’s just a simple blood test. If my levels aren’t in the normal range, my doctor makes a minor adjustment to the amount of Synthroid I should take and then I’m fine.
My son has Graves and he’s had an infinitely tougher time being Hyper than I EVER had being Hypo. Tomorrow, call your doctor and tell him/her about your ER visit and ask them if you should begin taking synthetic thyroid meds (like Synthroid).
I really think you’re going to find being hypo is much easier than being hyper.

Good luck!
Amy

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in reply to: Eye Problem Post RAI? #1073235

Ski,
Thanks so much for your help!! Hopefully this is the start of happier times ” title=”Very Happy” />

Amy

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in reply to: Eye Problem Post RAI? #1073233

I took my son to the Opthamologist today and he was encouraging. He said my son’s eyes are dry and suggested he start using drops without preservatives in them. He said he should use them 2 or 3 times a day and definitely before he needs to do any reading. I thought I read on here somewhere that it’s a good idea to use the drops much more frequently. Can anybody help me out with that?

He also wants my son to have a CT scan so he can see if the ocular muscles look swollen. My son had an MRI done a few weeks ago and they were supposed to check his ocular muscles then but the doctor said the MRI didn’t show him what he needed to see. He said he doesn’t expect anything bad to show up on the CT….even if there is some swelling it doesn’t appear that he’ll have major TED. I really liked the doctor. He said he would call me after he gets the CT report next week.

My son is still very moody and somewhat mean to me. It’s been getting to me a lot!!! I’ve been crying a lot the last few days but my son hasn’t seen me doing that until today. I got very teary at the doctor’s office and that worried my son. I told him that this whole process upsets me too. His attitude changed very quickly and he even offered me a hug….which was really nice. He’s been home from school most of this week but promised to try and go tomorrow. I sure hope he makes it. It would do him a lot of good to be around his friends. They’re even making plans to see a movie tomorrow night…yeah!!!!
I can’t wait until the worst of this is over….it’s so stressful!!

Thanks!
Amy

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