[Ski]

#1073917

Hi Laureen,

Welcome ~ we’re glad you found us so soon!

The best thing you can possibly do for your daughter is to find out as much information as possible about Graves’, the symptoms, and the treatments. You have choices about how to treat Graves’, and it’s important to understand everything about all the treatments before proceeding, especially with an adolescent patient.

You’re right, it is far more common in older individuals, but (as you now know) it does occur in teenagers sometimes. There are a couple of positives to that ~ first, younger patients typically do not suffer the worst symptoms of Thyroid Eye Disease, and if they do have TED, it is usually due to antibodies affecting the fatty tissue, rather than the muscle tissue, so it has a higher likelihood of returning to normal afterward.

But I’m getting ahead of myself. First: Graves’ Disease is a chronic autoimmune disease (now being referred to as a "syndrome" because it includes at least three known elements). The antibodies that are produced with Graves’ Disease attack the thyroid and trick it into producing too much thyroid hormone, rendering us hyperthyroid. Hyperthyroidism brings with it MANY symptoms, like sleeplessness, anxiety, anger issues, weakness in the large muscles like the upper arms, legs and chest, dry skin, dry eyes, racing heart, sensitivity to heat, inability to concentrate. Those are the classic symptoms. Not everyone has every symptom, and some have still other symptoms! There is NEVER a one-size-fits-all to Graves’. We all travel different paths, yet we’re on the same trip. Odd.

There are three possible ways to treat the hyperthyroidism.

Anti-Thyroid Drugs (ATDs) can be used to affect the thyroid’s reaction to the antibodies. The two kinds of ATD act a little differently in the body, but they produce the same result, lowering the hyperthyroid levels. PTU is a short name for one of the ATDs you can use. PTU is typically taken several times a day. Tapazole is the brand name for methimazole, which is another possible ATD, and it is usually taken once a day. The route with ATDs is to take a high dose at the beginning in order to relieve the hyperthyroidism. Eventually that high dose produces hyPOthyroidism, and the doctor will begin adjusting the dose in order to find the right one that leaves the patient stable, at a normal thyroid hormone level. There are some possible side effects to the ATDs, but they are rare, and the doctor will check for them regularly. Discontinuing the meds reverses any side effects. After 1-2 years, the patient can stop taking the ATDs to see if their body has reached a remission state (defined as a period of time, at least a few months, with normal levels while taking NO medication). 30-40% of patients attain remission on the first course of ATDs. If symptoms return, a second remission may be a little less likely, but it’s still possible.

The other two methods for treating the hyperthyroidism focus on destroying or removing the thyroid.

RAI is radioiodine, a radioactive isotope that is ingested. Iodine is only taken up in the thyroid, so the isotope goes to the thyroid and destroys it with the radioactivity.

The third possible treatment is thyroidectomy, surgery to remove the thyroid.

After the thyroid is destroyed/removed, the patient takes thyroid hormone replacement. This is NOT a medicine, it is chemically identical to the T4 produced by the thyroid, so it has fewer side effects than a "drug." Actually, it has none, unless the patient is allergic to the fillers in the pill. Take too much replacement, you’ll be hyperthyroid. Take too little, you’ll be hypothyroid. But it won’t give you side effects simply from processing the substance.

TOO MANY doctors will look a patient in the eye and say "RAI, the only way to go." Arguments can be made as to why so many say it, but the bottom line for the patient is simply to know that there ARE choices, and barring any physical restrictions (for instance, a hemophiliac could not choose surgery), we get to choose between ALL the options. Listening to a doctor’s opinion is important, because they have some experience that may help you decide, but you do NOT have to do whatever the doctor recommends just because they recommend it.

ATDs can be a good beginning, because they will bring the thyroid hormone levels down so that your daughter feels better, then the two of you can research and discuss all the forms of treatment to see which you prefer. She’s old enough that she really should participate in the decision.

Now, Graves’ Disease can also come with two other conditions. Thyroid Eye Disease is the "eye bulging" that you may see when you look up Graves’ Disease online. That is a separate condition from the thyroid condition. It is not affected by your thyroid treatment ~ your daughter may not be exhibiting any symptoms of TED, and she may never, or it may come on within the next year, or ten years from now. Sorry that we can’t be more specific on that. That’s an entirely different discussion, and you can probably find the information along the way, but if you have specific questions, or if she’s experiencing some of the symptoms, please say so and I’ll elaborate.

The last possible effect of Graves’ Disease is pretibial myxedema, which is kind of an "orange-rind" rash on the shins. It itches like crazy and is typically managed with steroid creams and sometimes injections, when it’s really bad. I’ve only met a handful of people who have experienced this condition.

SO ~ the way your daughter is feeling is COMPLETELY normal for what she’s going through. At her age, with her hormones raging, it may be tough to figure out what is caused by Graves’ and what is adolescence in general. We do have a bulletin you can read about children with Graves’, so look around the site and find that. You probably also want to contact your daughter’s school to let them know what is happening. She may need some special accommodations through her treatment, and it’s best to get them "on the team" early on. It’s going to be tough for her to concentrate, tough for her to sit still, tough for her to handle "teen drama." Anything the school can do to build in "safety valves" for her will be very helpful. She should probably be excused from PE for a while too ~ hyperthyroidism can mess with the heart rhythms, and exercising can make it worse AND possibly damage the heart. Talk all of this over with her doctor ~ if you CAN, try to find a pediatric endocrinologist who has had at least a little experience with a young Graves’ patient.

In the meantime, there really is no specific diet for her to follow (just avoid seaweed because it contains a TON of iodine, far more than any other food, which can amp up her symptoms). We usually advise patients to do what makes THEM feel good, and do that A LOT. Hot baths, funny movies, walks in the forest, whatever that is for them. "Feeding" that side of us can help keep the anxiety at bay.

Again, welcome! We’re here to help, so come here to ask questions, to vent, or just to talk. ” title=”Very Happy” />

[MrsC]

#1019764

Hi, my name is Laureen and my just turned 13 year old daughter was just diagnosed today, with Graves disease. The doctor says that she also has an overactive Thyroid Gland… I have been reading on this disease and it is said that it usually occurs in women 20 and older. I was wondering what is going to happen and what I can do to help my little girl, she was only 101lbs, @ 5ft 3 in, but in 2 and 1/2 weeks she has lost 9 1/2 lbs. She is not sleeping well and is very agitated. Is this normal? If anyone could give us some advice and also if there are certain foods that may help I would greatly appreciate any type of response… Thank you in advance ” title=”Smile” />

Yours Truly

Laureen

[bornarcj]

#1073918

Hi Ski,

Two years ago, my daughter (8 years old now) was diagnosed with ADHD and on medication (Ritalin) for for about 1 1/2 years until her psychiatrist discovered she had elevated thyroid levels during her periodic blood testing. After additional testing, she was diagnosed with Graves disease. The endochrinologist has been able to bring her levels to normal with methimazole, but she would like us to have her undergo RAI this summer.

In the meantime, she has been having increasing difficulty paying attention in school and the school has placed her in a Special Education class. Most of her attention issues have subsided, but are still present to a small extent. She still requires 5 mg of Methimazole/day.

My questions are:
Is it common to mis-diagnose Graves’ disease as ADHD?
Should her distractability symptoms have gone away completely since her blood test results indicate her T4 levels are normal?
Do the blood test results correlate to behavioral symptoms returning to normal?
Will the RAI my further improvements into her behavior or will there be another period of mood swings and attention problems while the dose of the thyroid replacement drug is established?
What are the side effects of the RAI? Is it better to put it off as long as possible (after puberty – will it effect her growth?) or just get it over with?

I know these are a lot of questions, but I’m trying to get her placed back into the regular classroom at school and I am trying to understand what she will be going through in the future, in order to make the best choices for her. The special ed. classroom is very stressful for her because it is only boys and many of them have ADHD and the teacher is really only spending time disciplining the other children. Any help or advice you can give would be greatly appreciated!

Kind regards,
Carole

[amyl]

#1073919

Hi,
My son was diagnosed with Graves’ when he was 15 years old but I’m pretty sure he had it for at least 1 or 2 years prior to his diagnosis. My advice to you is to learn as much as you can about Graves’ and then try to apply it to your situation. My son has most of the typical Graves’ symptoms but his biggest symptom is severe and chronic nausea (which isn’t typical of Graves’). He started on Methimazole in April 2008 and eventually went into a Hypo phase. His nausea disappeared then and his only real problem was that he was EXHAUSTED! His doctor lowered his dose and he went back into a hyper phase. The nausea returned and is horrible for him. In talking with our doctors, we all agreed that our son probably wasn’t going to go into remission and the nausea was intolerable. My son missed almost 3 years of school because of his nausea so we were getting desperate.
We finally decided to try RAI. My son had RAI on 2/17. We’re hoping he will show signs of improvement in the next 4-6 weeks.
Being the mother of a child with Graves’ is very frustrating. We want to do what’s best for our child and we don’t really know what that is. I try to be as informed as possible before making any decisions on his health care. I’m still hoping the decision to do RAI was the right one. As I said, learn all that you can about Graves’, find doctors that you’re comfortable with and then do the best you can to help your child (I’m a big believer in following my mother’s intuition). I’ll let you know how my son is doing over the next several weeks.
Good luck!
Amy

[DianneW]

#1073920

Carole,

The test results returning to normal do not (unfortunately) directly correlate with behavioral symptoms normalizing. Once blood levels have stabilized and remained stable for a considerable period of time, then the body can begin recovering from the damage that caused the behavioral symptoms, and you will see a gradual improvement in those symptoms over time.

RAI takes (typically) two or three months to control hyperthyroidism, and from there will cause continuing thyroid failure of one degree or another during the next 6-12 months (or in rare cases, several years). If all goes really well the period of instability is less than this, but 6-12 months of instability is a rough working figure, keeping in mind it could be a little less or much more. During this period, it’s quite likely she would experience another period of mood swings and attention problems. I had MUCH more difficulty during that period, in fact, than I did while hyper. Some people don’t experience it that way. It depends partly on how each body reacts and partly on how well the doctor adjusts thyroid replacement hormone; but when thyroid levels don’t remain stable for long, the body simply can’t get well.

I haven’t seen statistics on the matter, but I imagine it happens fairly often that children with hyperthyroidism are first thought to have ADHD, since symptoms are so similar and the latter diagnosis made without a blood test.

I recommend that you give her a chance to get well using ATDs and in the meantime, learn as much as possible about the treatment options for this disease so that if in the future a more permanent choice becomes necessary, you’ll be prepared to make an educated choice. She’s very young still, and while RAI can be given to young children and so far there is no evidence of problems, it’s also true that this hasn’t been done for long enough yet to have safety information available from long-term studies, as we do for adults. So before you go that route, be sure to get several different opinions on the subject.

Best wishes,

[hyperm]

#1073921

MrsC wrote:Hi, my name is Laureen and my just turned 13 year old daughter was just diagnosed today, with Graves disease. The doctor says that she also has an overactive Thyroid Gland… I have been reading on this disease and it is said that it usually occurs in women 20 and older. I was wondering what is going to happen and what I can do to help my little girl, she was only 101lbs, @ 5ft 3 in, but in 2 and 1/2 weeks she has lost 9 1/2 lbs. She is not sleeping well and is very agitated. Is this normal? If anyone could give us some advice and also if there are certain foods that may help I would greatly appreciate any type of response… Thank you in advance ” title=”Smile” />

Yours Truly

Laureen

Hello Mrs C,

I am sorry to hear about your daughter. My sister was diagnosed around the same age as your daughter and like yours was exceptionally thin (she was a twin who is fine), very aggitated and was very physically aggressive in a household where we never were exposed to violence – it was a terrible experience for us all and her. She had hers removed some 10 years ago now. It is genetic and therefore I was diagnosed at 24 however my condition is much worse than hers perhaps because I have had children.

I lost nearly 2 stone when I was first diagnosed (28lbs) in the space of 2 months – I thought it was baby weight but my eyes were pin point and i was very aggitated. Once the meds kick in she should start to feel better and also may start to gain weight.

Please keep us updated on how she is keeping.

M x

[ThycaGirl4]

#1073922

Hi all!

My name is Jamie and I am 19 years old. I just reciently received my RAI treatment about 3 days ago. For some reason I cannot get a clear answer on the restrictions. I have been told that I need to stay away from people for 3 days and then from another doctor I have heard 7 days! I do understand that the longer I stay away from people the better until all the RAI is out of my system. My main question is how long do I have to avoid physical contact with people (hugging, hand shakes, petting my dogs, ect.)? I also have been avoiding wearing my contact lenses. Any ideas of how long I should go without wearing contact lenses? Thanks for all the help! ” title=”Smile” />

~*Jamie*~

[Ski]

#1073923

After 48 hours, the highest level restrictions should let up. That’s when your body is expelling the RAI that was not taken up into your thyroid. After that, it has to do with distance and time, because then you’re dealing with the small amount of radiation in your thyroid. If they’re going to be cuddled up near your neck, don’t make it a prolonged period of time. If you’re going to be with someone for quite a while, hours maybe, keep your distance a bit (6 feet maybe?, less as the weeks go on). The radiation is cut in half each 8 days, FYI. Does that help?

[ThycaGirl4]

#1073924

Ski wrote:After 48 hours, the highest level restrictions should let up. That’s when your body is expelling the RAI that was not taken up into your thyroid. After that, it has to do with distance and time, because then you’re dealing with the small amount of radiation in your thyroid. If they’re going to be cuddled up near your neck, don’t make it a prolonged period of time. If you’re going to be with someone for quite a while, hours maybe, keep your distance a bit (6 feet maybe?, less as the weeks go on). The radiation is cut in half each 8 days, FYI. Does that help?

Yes! Thank you for your help.

~*Jamie*~

[ThycaGirl4]

#1073925

Hey There!

One more question.

Does RAI effect your taste? Receintly I have noticed that my taste is not the same as it used to be. The top of my tongue can barely taste at all and the sides of my tongue can taste some but everything is either very bland or bitter. Is this possibly the radiation part of my treatment that is causing this?

Thanks so much!

~*Jamie*~

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