[nugget]

#1059060

I’m new here and feeling a little desperate. We recently found out my 17 year old son has hyperthyroidism. He has further testing this coming week to see if it’s Graves, which is suspected. For the most part, he’s functioning as he normally does. He does overheat easily, has a somewhat rapid heart rate, and has lost weight and muscle. I’m so scared for him, and everything I read is just scaring me more.

I feel there’s so much on the line, and I’m terrified. He’s completing his junior year of high school and is on track to receive a football scholarship. He’s so excited for his senior year, and he’s been training so hard in preparation for it, but he just couldn’t seem to make any gains…of course, we know why now. His doctor said he can continue to work out, and even should be able to attend football camps this summer; however, it’s not a certainty at this point. I’m so scared it’s all going to fall apart. He’s already overcome so many obstacles. He’s dyslexic, and the one thing that’s kept him motivated and working hard in school has been his dream of playing college football. He also wanted to join the military, which that dream has now been thrown out the window. I’m so afraid he’s going to get worse and his football dreams will be over, too. Everything I read seems to suggest that there is no smooth ride, and life will have be put on hold for a long period time. Is this accurate? Does anyone continue with life as normal while treatment options are being decided?

I know there’s nothing I can do about it and it’s just a journey we’re being forced to go on, but all this unknown is just killing me. After so many years of struggling, due to his dyslexia, his high school years have been a dream for him. It kills me to think that his senior year could end up being the worst yet. Don’t get me wrong, my son’s health is the most important thing and all the other is secondary. It’s just I can’t stop worrying about how significantly this could alter my son’s life, and I’d just like to hear some stories that aren’t so awful as all the ones I seem to keep stumbling upon.

If you’re still with me thanks so much for taking time to read this. It’s so nice to have some place to let it all out for a moment.

[Bobbi]

#1171868

Hi, and welcome to our board.

First: Web sites like ours are dominated by people who are really sick. Once people get well again, they do not spend their time writing on boards that deal with illness. They get back to their lives, only occasionally dropping in, if that. In other words, these sites are skewed towards illness, and problems, not happy ever afters. If you doubt that, please use our search system to go back a year or so, and look at what was being written then. And who was writing it. The stories remain the same. The names of people posting change.

GDATF tries to keep some volunteers who have gotten healthy again to work with support groups, and on this board, in order to keep perspective. I am one of them. Kimberly is also one of them. James (who drops in infrequently) is another. Ski is another.

We DO get well again unless we have been undiagnosed for so long that permanent damage results. The treatments for Graves work to control our thyroid hormone levels in the proper place, and our bodies heal. There was an Olympic track runner a decade or so ago, (whose name I forget — Jackie Joyner perhaps?) who came down with Graves/hyperthyroidism, got treated, and was able to return to the next Olympics. We do get well again. We have to “follow the rules” with regard to our medications, and get periodic “well checks” to make sure our thyroid levels are in the normal zone. But it is a very treatable disease.

[James]

#1171869

Good for you for being supportive of your 17 year old by searching out answers to the many unknowns that you are presently experiencing.

I believe Bobbi was alluding to Olympic track and field athlete Gail Devers who was successfully treated, and went to be a Gold medalist (post treatment). So there is always lots of hope for patients, especially when appropriate medical treatment is employed early on after diagnosis.

As a parent myself (of boys about your age), it is so easy for us to worry endlessly about our kids. I think the best thing you can do as a parent is to project as much positive energy about overcoming this and perhaps allude to athletes with Graves’ who have been medically treated and STILL were able to achieve what they set out to do athletically (Gail Devers one example of this).

When I was first diagnosed with Graves, I had just turned 30 years of age and was in peak physical condition. I was training for long range cycling tours and was constantly at the gym. This was very much a part of my lifestyle and to a lesser extent, still is today (I’m just a lot older now ). My Dr. at the time mentioned that I could still train, but not push myself beyond what I would normally be used to doing. At that time I was well underway on a treatment program of Anithyroid medication though (everyone needs to consult their doctor about this). I recall having to eat like a horse, and I was encouraged to do so given that I had a high metabolism to begin with, and the Graves’ certainly exacerbated that. Your son (being athletic , and young) no doubt will have similar feelings and concerns about not being able to achieve his athletic dreams. Please emphasize that this simply does not have to be the case. His fitness level and age are definitely on his side. I think it is a whole lot harder on older folks. If I was diagnosed today (I’m now in my late 40’s), I think it would be a lot more difficult for me. The good news is that I have enjoyed a sustained remission (over 8 years), and my lifestyle was only effected minimally (that was at the time of diagnosis & 3 months post diagnosis). Each individual situation can vary though.

Keep up the good work encouraging your boy! He will get better.

James

[PolishTym]

#1171870

I’ll agree with James’ post. I haven’t made it back in my 40s with the disease, at least fitness-wise. But your son is young, and I suggest you give him some stories on now-retired football player Bobby Engram. He missed part of a season but he came back.

Maybe you should find a doctor who has worked with athletes? I’ve noticed a number of prominent people with the disease went pretty quickly with the RAIs or surgeries. Find an expert who can tell you whether this approach helps an athlete to get back quicker than someone who stays on meds for a year or two.

[paleblue]

#1171871

Your son will most likely be able to do what he did before in a reasonable amount of time. Like others said, he’s young. Also, I am not a competing athlete anymore, but I am in my late 40s, have always been a runner, and have probably lost 2-3 months of running due to Graves, and that was when I was first diagnosed and had lost so much muscle that it affected my knees. Also, of course, I didn’t feel it was safe to run with an elevated heart rate. However, once I was on the ATDs, and my levels stabilized, I was able to run again. My levels stabilized fairly quickly (a month or two??) It took some time to rebuild the muscle mass though.

As I type this, I do realize that several months of recovery could seem like forever to a teen, so reassuring your son that it’s not forever might be something you will want to do.

I know it’s such a shock to find out you have this disease that they say is incurable. I was so devastated in these early months. It’s so hard. I’m so sorry. Thank goodness it does get better, but that doesn’t help much when you are in the thick of it.

[kskip]

#1171872

I am a mother of 17 yr old daughter diagnosed with Graves Jan. 2012. She had a total thyroidectomy on April 3rd 2012 and is doing very well. She no longer has the symptoms of hyperthyroid (heart palps, joint/muscle pain, hand tremors). We are working through the process of finding the right dose of thyroid replacement hormones. I can totally sympathize with where you are right now. My advice is to read, read, read. Research Graves, the symptoms, treatments, tests, etc. Chances are the doctors will not tell you everything you need/want to know. He will get better. There are a lot of stories on the internet about athletes that have overcome the disease and gone on to do amazing things. Pick the good articles and let your son read them too. And finally take care of yourself. Best of luck.

[merci171]

#1171873

Hello:

I am not 17 but 41 and thinking of doing the surgery could you please give me the ups and downs of what your daughter has been going thru and if you think this was a good decision? Thank You it would really help

[kms1246]

#1171874

I am so sorry for all that your going through…. My son was diagnosed on January 19,2011. It was a horrible experience. So I know where you are coming from he was 14. He did really well with meds for over a year. His levels T4 and TSH remained under control and it looked like he was going into remission, but unfortunately we are scheduling surgery very soon. I am relieved to get off the medication roller coaster. I am still extremely concerned but after all the research I feel that we have made the best choices for our son. I wish you the best of luck with your son. I am thankful to be where we are today….. the earlie stages are the hardest, but you will get through it…I promise.

[kskip]

#1171875

My daughter did well with surgery. It was a long 5 hour surgery but her doctor was very careful not to damage the parathyroids. Her calcium dropped slightly but she just chewed Tums to get it back up and she’s back to normal within 2 weeks. She did experience some neck pain but we used ice packs to help with that. She left the hospital without narcotic pain meds (tylenol and motrin was all she needed). Her incision area looks wonderful and is easily covered by the collar of a t-shirt. She did experience a couple of days of tremors and heart palps after surgery but nothing too severe. She did not do well on anti-thyroid drugs. She had to take beta blockers and pain meds for the 3 weeks leading to surgery just to make it through school. It was the right choice for her and we are very pleased with our choice and the outcome.

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