[Ski]

#1070189

You’ll find a lot of information just by searching on topics that come up in your head, but I can give you some basics.

First, this is a chemical imbalance in your son’s body. Thyroid hormone functions as the "fuel" for literally every cell, and he’s got too much thyroid hormone, so every cell is "revving high," and he can feel amped up and totally exhausted in the same moment. Emotions will run high, and he may "snap" for reasons you don’t quite get. Graves’ is a chronic, autoimmune thyroid disease where the body has generated antibodies to its own thyroid. These antibodies mimic the hormone meant to stimulate release of thyroid hormone, and trick the thyroid into overproducing. The tough part about treatment is that these are antibodies. You don’t want to shut off the entire immune system, obviously, and antibodies can’t yet be "removed" from the bloodstream, so his thyroid is under attack, and the end result is that you must do something to stop it from overproducing. After you get the thyroid hormone levels back into a normal range, and keep them stable for some period of time, the body can begin to heal. Symptoms will not go away overnight. This came on, probably over months and months, and it will take a while for the body to heal itself after levels normalize. Patience is the hallmark in recovering from Graves’.

There are three treatment choices available to you. One is anti-thyroid drugs (ATDs), which come in two basic types, generic methimazole (U.S. brand Tapazole, UK brand Carbimazole) and PTU (long name, don’t even try). They have slightly different chemical reactions that result in lowering thyroid hormone levels. These can lower the thyroid hormone levels pretty rapidly, and in about 40% of people they can help trigger a remission of the overproduction ~ but you need to be on them for two years (at ever-lowering doses, most of that time on a very low dose) before you can stop taking them to see if you’ve achieved remission, and they have the potential to damage the liver as well as causing an extremely rare side effect where our white blood cell counts are dangerously lowered. Both of these side effects are tested for, often, and if they begin to happen, can be reversed by discontinuing the meds. For some people, they have a tough time managing levels with ATDs. You must be absolutely vigilant about testing levels and taking meds on time as prescribed. PTU must be taken several times a day. Methimazole once a day. PTU tastes foul (I mean beyond foul), and has recently been advised against for pediatric patients because a small percentage have suffered liver failure as a result of taking it.

Second option is RAI, short for radioiodine. This is a radioactive isotope we can take in very small doses (thyroid cancer patients can get 10 to 20 times what we get), it goes to the thyroid because the thyroid is the only organ that takes up iodine, and destroys the thyroid over time. It does most of its work in about six weeks, does everything it is capable of doing within six months. There was once a theory that a patient could get "just enough" to get their thyroid back into the normal range, but that has been largely abandoned now because it was unsuccessful. Any remaining thyroid tissue is capable of overproducing due to the antibody attack, and with less tissue, it doesn’t seem to limit the overproduction so that levels remain stable. For that reason, most RAI patients are aiming for ablation (total destruction) of the thyroid so they can be rid of the possibility of antibodies affecting thyroid hormone levels. After it’s gone, we take replacement thyroid hormone for our needs. It takes a little while to dial in our own normal level (the normal range is enormous, and we need to find our best spot within the range, not just ANY spot within the range), but once we’ve got that dialed in, we can have our levels checked annually just to make sure our needs haven’t changed, and that’s that.

The third option is surgical removal of the thyroid ~ same end result as RAI, quicker (you know when it’s gone), but I don’t think I need to go into too much detail about the risks of surgery, we all know those. For thyroid surgery in particular, there is a possibility of nicking or paralyzing the vocal cords, or damaging the parathyroids, which control calcium levels in the body. Seeing a surgeon who is experienced with this specific procedure, who performs many of them routinely, and who has an extremely low complication rate, is the way to do this, if it’s your choice.

Obviously, no perfect choices. Luckily, we have three. Do all your research, talk with your son, and see if you can come to some decision. It can be a good idea to start with the meds to see how they work for him, and also just to begin normalizing the thyroid hormone levels while you look into all the options.

Beta blockers may be prescribed to help with some of the worst symptoms ~ the anxiety, tremors, and arrhythmias we can get ~ but they do nothing to treat the hyperthyroidism. Mostly they protect the heart, but it’s a nice coincidence that they take care of the tremors and anxiety.

And just when you thought it was safe to go back in the water ~ I must at least mention the other things that may occur along with Graves’. We’re beginning to understand that this is more like a syndrome than one disease, because other diseases occur along with it frequently.

Thyroid Eye Disease is the thing you may have thought of as Graves’ ~ the eye-bulging. This is treated by an ophthalmologist (not an optician). There is another set of antibodies that can attack either the fatty tissue or the muscles behind the eyes, which causes them to swell. They can swell unevenly, so the result can be double vision, pain upon moving the eyes, bulging eyes, headaches behind the eyes, things like that. To complicate matters, the fact that we have an autoimmune disease makes our tears thinner, less able to moisturize our eyes, so chronic dryness can come along with this (and bulging eyes sometimes don’t close at night, so they are in danger of extreme dryness). For the most part, it is an incredibly tiny percentage of Graves’ patients that end up with the worst symptoms of TED, but you should know it’s possible. RAI can "temporarily worsen" TED symptoms, but a few weeks taking Prednisone can do away with that likelihood, so if TED symptoms are present, you would want to consult your son’s ophthalmologist about whether RAI is a good idea, or whether Prednisone would be an option. It comes with its own side effects.

Pretibial myxedema is a weird, orange-peel looking rash (except it’s purple) on the shins. Not everyone gets this either. It’s apparently another set of antibodies that attack something in the soft tissues on the shins. I’m not all that well versed on it. Dermatologists test for and treat this, usually with steroid cream. It can come and go.

Overwhelmed yet? ” title=”Wink” /> Sorry about that. Just trying to ease you into the pool. This WILL be a long ride, and it may get complicated. But your son will recover, I promise. Tell him we’re all thinking of him. There are a few other parents of newly diagnosed teenagers here, you can probably all learn from each other through the process.

Since your son is school age, you may want to look into accommodations for him in the fall. He won’t need much, but it’d be nice to have everyone on the same page, supporting him through his recovery. We all feel differently throughout treatment and recovery, so follow his cues about what he feels he needs.

Oh, and welcome. ” title=”Very Happy” />

[momof2]

#1070190

Thank you so much for the valuable information you shared. It is a great big help to us. There is so much to learn. We started writing down some questions for the endocrin doc for Wednesday.

THANK YOU!

[momof2]

#1019220

Hello, I am so glad I found this board. My son just turned 14 years old and I got the phone call today from his blood pressure specialist that he has Graves Disease.
He has high blood pressure and it on meds for it and sees a specialist. Well at the last visit Tanner was shorter but heavier. He was overweight in fact. In the last few months he got alot taller. He is now 6’1. But he has lost almost 50 pounds since christmas. He now weighs 117 lbs. His Dr today could not believe how thin he got. And he is VERY thin now. I can see all his ribs and spine. He is very thin. At his regular doctors office 2 weeks ago I expressed my concerns and the doctor blew me off stating that its normal for a teen boy to lose weight during a growth spurt. Yeah but not like this.
So we go on Wednesday to see the Endocrinologist to get him on meds. He also found excess prtiens in his urine – is this part of the Graves Disease? His dr said we need to deal with the Graves first right away and then we will deal with the proteins in his urine next.

Can anyone tell me what to expect through this? I am at a loss right now not knowing.
Thank you

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