[DianneW]

#1073220

Hi Amy,

I know this has to be scary for you. I think you know the only answers you’re going to get are going to be when you have him examined, unfortunately. I really hope this turns out to be a false alarm, but if it’s any encouragement, studies show that for people who don’t have pre-existing TED any changes caused by RAI will be mild and self-limiting; specifically, at the end of a year there will no longer be any significant symptoms.

Keep us posted on what you find out!

[amyl]

#1019665

Hi,
About 3 weeks ago, my son was complaining that his eyes hurt when he moved them. I took him to our eye doctor and she said his optic nerve looked fine. He happened to be scheduled for an MRI of his head the next day so they also looked at his ocular muscles. They appeared to be fine…no inflammation. Over the next few days, his eyes improved.
Now, my son started having the same trouble one week post RAI. He tells me that he’s having trouble seeing the small print of a book that he needs to read for his English class. His eyes also hurt again when he tries to read the book. Luckily, his teacher has the book on tape so he’s been listening to it.
I’m not sure if I should take him to see the eye doctor again. I thought I remembered somebody saying his eyes might bother him after RAI but that it would go away.
I appreciate any advice!
Amy ” title=”Smile” />

[amyl]

#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

[elf]

#1073222

Hi Amy,

My TED just started showing itself a month before RAI (an eyelid started getting puffy). After RAI, the eye troubles moved along with the dying thyroid: the hyper spike was 3 months post-RAI, and my eyes were the sandiest, the grittiest, the most watery then.

5 months after RAI, I turned hypo, and the sandiness/grittinnes started to subside. The watering continued till 12 months after RAI, and then – nothing. My eyes settled. So it took my eyes 1 year post -RAI, just like Dianne said.

However, my eyes protruded all along that year, so I have a mild to medium proptosis. Now, 3+ years after RAI, that’s all I have, because my eyelids "deflated".

Not all people have eye trouble in the year after RAI, in fact TED can appear at any point, but once your son is gone through the "hot" stage and his eyes settled, he’s out of the danger of having it again.

[Ski]

#1073223

I’m SO sorry you feel this way, and I completely understand it! Three years is a very long time for your son to be battling with this. I know it sounds like platitudes, but you’ve been doing everything you possibly can to deal with this, and the upside is that it will not endanger his life, and that’s something I really think you need to stop and be grateful for. You could be dealing with far worse diseases in a young person, so try and see the bright side, that you’re dealing with something for which there are successful treatments available. You tried to be as minimally invasive as you could, that didn’t work out, and now you’ve moved on, so at least the thyroid level issue should be resolving, and he should be getting closer to feeling well in that regard all the time. The eye symptoms, with luck, will be transient. In the young, the changes are typically much less, and resolve quicker and stay resolved better. An ophthalmologist will be helpful, I’m sorry you’re having trouble connecting with one, and I know it’s frustrating to think you’ve begun yet another difficult path for your son.

Do what you can to put a smile on his face, whenever possible. He’ll appreciate it, and it’ll make you feel better too. Give give give, go ahead. You love him and he deserves it.

[amyl]

#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

[elf]

#1073225

I know, with your children you feel a 1000 times worse than if it happened to yourself. My son (he’s 4) has had some trips to hospitals, non-Graves related, and I felt so much more worse for him than for myself going through this Graves.

[Ski]

#1073226

Hi Amy,

If the RAI doesn’t work, surgery would be the solution. I suppose we’re lucky to have that many choices, but I am with you, he needs relief and he needs it NOW. I am hoping for the quicker path for you, that RAI succeeds for him, and that he begins feeling a little better each and every day.

I’m glad you’ve had the discussion about suicide, because it’s important for you to know that he felt that despondent, and it’s also important for him to have said that he knows that’s not the answer. Young people shouldn’t have to go through this kind of hardship, and yet some of them do. "Life’s not fair, is it?" (from the Lion King movie). ” title=”Very Happy” /> Much as we wish we could craft our children’s lives and make them lovely, perfect experiences, we can’t.

Those of us who have come out the other side can say we feel stronger, more capable, and also that we’ve made some really great friends through this site. We have to remember that these things shape us, and while it might not feel all that good being "shaped" in this way, that’s our path. Your son sounds like a fabulous person, and this is allowing his inner beauty to shine through so you can see it VERY clearly. Sometimes we have to actively seek things to be grateful for, and hang onto them. You will both get there. It’ll be okay. HUGS!

[dsarmien]

#1073227

Hi, Amy — My son Steven, 26 years old, has GD &TED and is undergoing treatment. He has had eye decompression, but will probably need more surgery to help the proptosis and his vision. He has a good opthalmologist who really cares. Steven’s next appointment is this Friday with an Eye, Nose and Throat surgeon. They will probably need to make room in the sinus cavity area for his eye to make more room and help with the portrusion. Keep on working to find the right help for your son. It takes a lot of work and patience, but this is what we must do. Steven is managing at school. It’s not easy, but he is toughing it out.

Keep on telling your son that you are there for him and you both will fight this all the way and that you won’t give up! I’ve met great people on this site, especially Patrick and his mother. Patrick said that we are Graves Disease Warriors. I do my best to stay positive for my son. It’s hard, I know, but we need to be strong for them. I also pray a lot and have asked friends and family to pray for Steven. I know the day will come when things will be better for our sons. Hang in there. I will pray for our sons and all who are suffering from this disease.

Regards,
Dolores

[amyl]

#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

[Ski]

#1073229

You may not be doing him any favors by hiding how you feel, FYI. If he can see that you are just as frustrated as he is, at least he’s not alone feeling that way. Show him you’re frustrated, but you’ll still hope for the best and try to get through the day. Then he can copy you. Just a thought. ” title=”Wink” /> It’s hard for someone to think they’re the only one losing their grip.

One more thing ~ he’ll get those things you want him to have. He’ll just get them later on.

[amyl]

#1073230

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

[Ski]

#1073231

He will. I know it seems like a long way off, but just think about it this way: let’s say he has a lifetime of 80 years. This period of time will be a mere speck in that long period of time, something that happened to him "way back."

You are both closer than ever to realizing a bit of normalcy. Hang in there, it’s coming! I know you’ve heard that before, and it’s hard to get on board when you’ve seen things go sideways time after time. The bottom line is that SOMETHING will work to bring him back to thyroid health. My bet is that THIS is working, and you won’t have to worry about the "next thing."

I know the eye symptoms are an awful thing to deal with ~ it’s all about how we perceive ourselves, how others see us, how confident we feel at "facing" the world ~ and that’s scary to contemplate for both of you. Try to focus on the next step, just the next step. We can deal with it if we face it one step at a time.

[dsarmien]

#1073232

Hi, Amy — Steven had RAI treatment when he was diagnosed with GD at age 21. He was doing okay with his thyroid meds. Unfortunately, Steven was a smoker, which I believe might have contributed to the thyroid eye disease. It also did not help that he was not consistent in taking his medication. Steven had to learn his lesson the hard way. He has stopped smoking and is now taking his medication consistently. He is paying the price for not making the right choices as his TED is pretty severe. His left eye, although not great, is okay. He only had surgery on the right eye, & it looks like further surgery is needed, perhaps even radiation.

It has not been easy for us, especially Steven of course, as he is the one that has to deal with TED. I, too, have GD since I was 35 years old and had RAI treatment at the same age. My treatment worked right away and have not had problems at all. I take my little purple pill everyday and go on with my life. My dosage has been the same for as long as I can remember. I guess I’ve been lucky, and I do feel terrible that my son’s GD is so much worse compared to mine. My son always reminds me that it’s not my fault, but nevertheless, I feel bad as he inherited it from me. What I do try to remember is that this disease will not kill us if we get the right treatment. I’m also grateful that there are different types of treatment for both GD & TED available to my son. I also thank all the wonderful doctors treating him. Thank God for such kind, smart and knowledgeable people! I guess being grateful, hopeful and positive is what helps me help my son.

Steven has also been keeping to himself as he does not like to have to deal with the stares, etc. He keeps busy with school and has friends online that he plays video games with. He also rents dvds as he likes to watch movies. I’m sure in time, when his eye looks more presentable that things will change.

Lastly, you don’t need to think that you are being a hypocrite. If you need to act a certain way to be strong and positive for him, although you’re hurting inside, so be it! There is no room to fall apart when you have kids. I also have a daughter who has a six year old child. I tell my daughter all the time that once you become a parent, you need to always be strong for your kids, as they need to be able to count on you at all times. It’s not easy to do. I personally don’t find it easy, but I just strive to do my best. So stay strong & positive, Amy, & I will too. You and your son will be in my prayers.

Regards,
Dolores

[amyl]

#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

[Author]

Posts