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in reply to: Digestive upset #1074107

Nausea is my son’s #1 problem. He was misdiagnosed and treated for Chrohn’s disease for almost 3 years. After the treatments weren’t working, we did some more investigating and found out he actually has Grave’s, not Chrohn’s. He’s having a terrible time with his stomach right now and we think it’s because he’s gone into a hyper phase. We’re hoping his stomach settles down when his thyroid is gets under control.
I took him to a new doctor today and she said she usually recommends RAI to people with Grave’s because, in her opinion it’s much easier to control hypothyroidism than it is to control Grave’s. She also said it might cure his stomach issues. If his stomach gets better when his thyroid is under control, we’re going to seriously think about RAI or surgery.
I hope you feel better soon!
Amy

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in reply to: Will Surgery Prevent Eye Problems? #1074184

Thanks Ski!
I had to smile at your note about not worrying ” title=”Smile” /> The more I read, the more I worry ” title=”Smile” /> I had no idea how insidious this disease could be. My son is SO SICK tonight…it breaks my heart. I am very thankful for this Board and for all of the Facilitators that take the time to support and educate us "newbies". It’s comforting to know you’re here.

Thank you!!!
Amy

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in reply to: Hi Everyone #1074186

Hi Cindy!
Welcome and good luck!!
Amy

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in reply to: New and worried #1074322

Hi Ski,
Thank you very much for your advice. The symptom diary is a good idea. I have started keeping a spreadsheet of doctor visits, reason for the visits and what our plan is. Then I have another sheet where I keep track of tests and their results. I LOVE spreadsheets…they help me keep myself organized.
My son is 16 yrs. old and is very hormonal and stressed most of the time. You wouldn’t know it to look at him because he keeps it well hidden inside. He and I have a very open relationship and we can be very honest with each other. I talked to him a little about the pros and cons of RAI vs. thyroidectomy and he’s leaning toward the surgery. I was surprised by that but I am also leaning in that direction so it’s nice to know we have similary thoughts. Regardless, I think we still need to pursue treating his GD with medicine for awhile longer. I feel like we are still very new to this process and I don’t want to jump into surgery without exhausting other options.
My husband and I made the decision for me to quit my job so I turned in my 2 weeks notice today. I feel so much lighter. Now I can be there for my son whenever he needs me. I will get another job eventually, but for now, I can dedicate myself to helping my son feel better.
Thanks again for your help!!
Amy

[amyl]

in reply to: New and worried #1074319

When my son was diagnosed with GD in April, 2008, nobody adequately prepared us for how rough this could be. I thought all we had to do was get him on some medicine and hope that he went into remission. The medicine did help A LOT but then he became very Hypo. His doctor cut way back on his medicine and now he’s back to being Hyper and it’s horrible. He’s so sick, he can’t go to school. Luckily, the school that he currently attends has been very understanding about him being out sick. His previous school was anything but helpful…they thought he was just making all of this up. Some of his doctors felt that too which was also incredibly frustrating!
My son hates missing school so he’s frustrated and I’m worried sick. I think a brochure would be very helpful but I think it needs to be carefully worded. I’m assuming not everybody goes through these cycles with the same intensity as my son. On the one hand, it would have scared me to know how intense this could be and on the other hand, it might have helped us be better prepared for all of this. Am I wrong in assuming that not everybody has these intense cycles between being extremely hyper or extremely hypo? Overall, I think I would have preferred know how bad it "could" get but, at the same time, know that it there is a chance it won’t be all bad. I hope that makes sense.
Have a healthy day!
Amy

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in reply to: New and worried #1074314

Congratulations! I’m so glad your husband is willing to be supportive…that should make this a little easier for you.
Take care!
Amy

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in reply to: New and worried #1074312

In general, my husband responds best to me when I tell him exactly what I need from him. I used to get frustrated because he couldn’t "read my mind" and just know what I wanted or needed. I’m not good at verbalizing when I need help but when I do, I get it. He has actually thanked me for telling him when I need help rather than hoping he will see that I need help. So, maybe you just need to have a very purposeful talk with your husband. Find some time alone with him and be very honest with him about your disease and the subsequent support that you need. If he still doesn’t get it, just do what you need to do and stop worrying about what he thinks. You can’t take care of anybody else until you feel well again.
Best of luck!
Amy

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in reply to: GD and stomach issues #1074472

Hi Jake George!
Yes, my son does see a pediatric endo but not very often….maybe every 3 or 4 months. The dr. said he didn’t really need to see him too often b/c we could do a lot by phone. So, if my son shows signs of any type of infection, or signs of becoming Hyper or Hypo, I call and request a blood test. I’m sure they would see him more often if I requested it.
My son also sees a pediatric cardiologist b/c his blood pressure is a little high. Lastly, we go to a pediatrician who hasn’t been very helpful with GD. When my son started getting nauseous again, I took him to the pediatrician who actually looked at me and said "I’ve already told you I can’t help you with his nausea". I couldn’t believe it! I left there, came home and started searching the web. That’s when I found this Board. I’m going to start looking for a new pediatrician but this is the like the 4th or 5th doctor that hasn’t been helpful with my son’s nausea. We’ve done the pediatric GI doctor route and that turned out to be a disaster! I don’t want to go down that road unless there’s absolutely no other option.
My son appears to be very calm on the outside, but isn’t on the inside. He occasionally will tell me how stressed out he is about school, etc. but he doesn’t show it! I’m sure that contributes to his stomach problems. He did see a psychologist for awhile, a few years ago and it was a battle to get him there. I don’t think I could convince him to do that again. He’s good about talking to me so I’m trying hard to keep that line of communication open so he can vent when he needs to.
I know I’ve already said this, but being a parent is tough work!!!!
Thanks for your help!!!
Amy

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in reply to: GD and stomach issues #1074470

Hi Dianne,
Thanks so much for your help…again! You know, I consider myself a fairly intelligent person, but all of these different tests are very confusing. I’m guessing that along with the meaning of each individual test, you also have to take the interaction of other test into consideration before determining how to proceed. I’m the type of person that tries to really understand medical issues so that I can talk intelligently to our doctors, but GD, and all of the tests and medicines that go with it, is complicated. I’m glad our doctor understands all of this, because I’m having trouble with it.
Again, thanks for your help and I will keep you posted on my son’s progress!!
Amy ” title=”Smile” />

[amyl]

in reply to: GD and stomach issues #1074468

Hi,
I received my son’s blood test results and he has gone "hyper" T3 uptake = 46, Free T4 = 1.99 and TSH = 0.06
The doctor has made a slight increase in his methimazole so hopefully he will begin feeling better soon. I’m very curious to see if his nausea improves with his thyroid.
Does anybody know the difference between T3 uptake, Free T3 and Total T3? It seems the past 3 blood test results have yielded results for these different test (Oct showed Free T3, December showed Total T3 and January showed T3 uptake) I asked the person that called me with the results what these different test show but she didn’t know (I thought it odd that she couldn’t explain that to me).
Again….thanks for your help!
Amy

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in reply to: How can I be more supportive? #1074350

Hi,
I’m very new to this forum so please remember that when reading my reply. My daughter does not have Graves but she does have other medical problems. She too flunked out of college and blamed all of her problems on my husband and I. She stopped taking all of her meds which was very scary. She became so intolerable, that we finally told her to move out. She has since improved and is back living at home. With the new HIPPA laws, it’s very dificult for parents to get their children medical help if they don’t want it. Please know that you can always take your daughter to an emergency room if you think she’s in danger emotionally. They can also help you find inpatient and/or outpatient programs that can be helpful.
Being a parent is a very difficult job. I wish you the best in finding help for your daughter!
Amy

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in reply to: Will this always be a roller coaster ride? #1074365

Amanda…thanks for sharing. You’ve given me more hope.

Bobbi…your advice is very wise and I appreciate it. I hadn’t thought about the Board in those terrms but it makes a lot of sense. Thank you!

Amy

[amyl]

in reply to: GD and stomach issues #1074467

Hi Dianne!
My son is now 16 yrs old but has had severe stomach issues for the past 3 yrs. It got so bad, he couldn’t go to school and I really thought we were going to lose him. We were sent to a gastroenterologist who put him through exhaustive testing and decided he might have Chrohn’s disease. She began treating him with IV meds and, after awhile, it became clear that the treatment wasn’t working so I took him to the Mayo Clinic where he was quickly diagnosed with Graves’. What was so frustrating about all of this is that my husband and I both have hypothyroidism and I always made sure each doctor was aware of that but nobody ever tested his thyroid. My son also has high blood pressure but his doctors never investigated that either. I even took him to a neurologist because my son’s hands were incredibly shaky. He said that there was nothing wrong and that he was just a person with a tremor. My son was so shaky, he had trouble writing and drawing. The doctor’s at Mayo finally listened to me and investigated all of my son’s symptoms. A simple blood test identified his hyperactive thyroid and the iodine uptake test confirmed GD.

Because of all of this, I have learned to follow my instincts and never just accept what doctors are telling us when it doesn’t seem to make sense. I really think my son’s stomach issues are related to GD even though our doctors don’t agree. I can’t wait to get the results of my son’s blood test tomorrow to see if his thyroid has gone hyper. If it has, then I’ll be convinced that his nausea is caused by his GD. If not….well, I’m not sure what we’ll do next.

I have to say that finding this Foundation has been so comforting!!! It really helps to find a group of people going through the same things as my son. I’m finding that his doctors are not being very open to minded to the idea that my son may have some "unconventional" side effects to GD. So, thank you very much for your help and support!!! I’ll let you know the results of his blood test when I receive them.

[amyl]

in reply to: GD and stomach issues #1074464

Thank you very much for your response! I talked with our Pediatrician about this possibly being a side effect of GD but he didn’t agree. Well, I’m following my "mother’s intuition" and I called our Endocrinologist and requested some blood work. We got that done yesterday and are now waiting for the results. I will make sure to always request his results now so I can keep track of them too…thanks for that suggestion!
Can you please tell me what "ATDs" are. I’m not familiar with that acronym.
Thank again for your help!!!

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