[Ski]

in reply to: IMPORTANT QUESTION #1073901

Yes, they have. There’s no such thing as incurable Graves’. EVERYONE can be successfully treated. It may take longer for someone whose levels were so very high to feel completely back to normal, but then again, if the diagnosis was made quickly, even severe levels are limited in the damage they can cause, because the sooner treatment begins, the assault stops.

[Ski]

in reply to: Heartburn and Hyperthyroidism? #1073909

Not heartburn, but a feeling of an obstruction in your throat could easily be caused by the swelling of the thyroid. The thyroid can swell (what we refer to as a "goiter") in response to either hyperthyroid OR hypothyroid levels, and it can make you feel as if there’s something in your throat.

In addition to that, not all of us experience the same symptoms, so it’s hard to say what is and is not caused by Graves’. Doctors are very empirical, so if MANY patients have not experienced it, they will say it is NOT caused by GD, but they’re just like us, they don’t know for sure.

[Ski]

in reply to: need some questions answered…new to this!!! #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” />

[Ski]

in reply to: Total or Partial Thyroidectomy? #1073927

The theory that any tissue can remain is pretty much history, as far as I know, because any active thyroid tissue is capable of reacting to the antibodies, so even half, or a quarter, of a healthy thyroid can still end up making us hyper, over time, unless it’s managed with ATDs.

Having said that, nearly all the time, a TINY TINY percentage of thyroid tissue is left as is because the parathyroids are attached to it, which help regulate our levels of calcium. From what I hear, the parathyroids can actually be removed from the thyroid and "stuck" somewhere else and they will still function, but in most cases the tiny bits of thyroid they are originally attached to are left behind just to make sure. Those teeny tiny bits would not be capable of causing trouble, but the surgeon still can’t call it a "total" thyroidectomy if tissue remains. I think usually they call it "sub-total thyroidectomy."

[Ski]

in reply to: What if you do not treat? #1074027

I have often joked that I didn’t mind being hyper, because everything was finally getting done! Still, it’s no laughing matter, being hyperthyroid. If you are feeling fuzzy when your levels are "okay," then examine more closely what it means to say your levels are "okay." The range of normal is VERY large, precisely because people feel best at many different points along the range, yet all are considered "normal" in the big picture. If your T4 is near the bottom of the normal range, that may signal it as hypo FOR YOU, so you need to tweak your medications in order to bring the T4 nearer to the top of the normal range (and, in concert, bring your TSH down to the bottom of the normal range). It is always best to stay within the normal range, but within that, you can adjust things a bit. I think I remember that one person did find themselves thinking that they felt best even a little outside the normal range, but eventually that caught up with them and they had to bring the levels into the normal range. Even a little bit of imbalance can cause damage, it just causes less, so the damage may take longer to show up. Have a discussion with your endocrinologist to find out how you can explore the normal range in order to find YOUR normal point. It takes a little bit of time, but if you don’t try, you’ll continue feeling "not quite up to par," and that’s no good.

[Ski]

in reply to: New here.. and boy, do I need help! #1073931

That’s a tall order, Dianne! ” title=”Very Happy” />

I always liked Jake’s answer ~ when he found himself in the midst of a giant Graves’ Rage episode, he would interrupt his tirade (still yelling) with "I LOVE YOU AND I DON’T WANT TO TREAT YOU THIS WAY! I AM SORRY!" On the one hand it seems so sad, and yet on the other hand it’s a little funny ~ it jogs everyone out of their "habitual" roles in crisis. The important part is that it lets everyone know you are aware that you may be acting in an irrational way, so it gives them an opportunity NOT to take it so seriously.

It’s a good idea to just get out, get away for a short time if you can ~ take a walk, a bike ride, a short drive ~ but also be aware that it is NOT a good idea to be out driving (bike OR car) if you are still furious. Give yourself a few minutes to breathe deep and calm down before getting in the driver’s seat.

One of the things that helped me was to discuss things that would "trigger" a rage after the whole episode was LONG over, when we’d all returned to a state of calm. You know, sometimes we think we’re mad that the dishes are in the sink, when in fact we’re angry because it seems we don’t get any help in general. After everything is quiet again, we can look at those things logically and try to express them without the fury ~ then at least we are starting a dialogue.

Another point is to communicate about what you WANT when you find yourself in the rage state (again, discussing it when you are NOT in that state) ~ some people want a big hug, others want someone to listen, still others just want everyone gone for a while, or they want to leave for a while. Whatever it is for you, don’t keep it a secret! Let those around you know what would give you the most satisfaction, and then watch them do it. It’s nearly a miracle. ” title=”Very Happy” />

[Ski]

in reply to: How long on Methimazole? #1073953

You may find that acupuncture is covered under your medical insurance. Check it out.

[Ski]

in reply to: running with untreated hyperthyroidism #1074047

Hopefully, after three years, your thyroid hormone levels have been normal, or near normal, most of the time. We only lose muscle mass when we are actively hyperthyroid.

[Ski]

in reply to: How long should I plan be off work for surgery or IRA? #1073968

Hi Amy,

Your son would only need a day or two off school for the RAI ~ if that. If he could take it on a Friday morning, he’d be "okay" for school by Monday morning (though not "well" yet, certainly). Waiting for his levels to come all the way down, and then work them back up, may take some time. Still, he’d be feeling better each successive day, and he wouldn’t have to stay in the hospital for any length of time. With diligence, levels can be managed fairly well after RAI. With a large enough dose, you can usually say the thyroid will be GONE in six weeks, but it’s a little art, a little science, the dosing strategy. If you choose to go that way, I’d say you should have a pre-appointment with the radiologist who will administer the dose. My personal mistake was not having that appointment, just trusting that the doctor "knew best" and had consulted with my endocrinologist. NOT so.

At least with surgery you know it’s gone that day, but then you need a hospital stay, and probably at least a week or two out of school to recover.

It’s such a personal decision ~ you & he need to make it together. We can’t really say one is "better" than another. They both work, but they each come with caveats. Maybe make and discuss a pro/con list ~ that’s my sister’s favorite way to make decisions. ” title=”Very Happy” />

[Ski]

in reply to: Pregnant 3 Months After RAI, will it hurt baby?? #1074175

Typically doctors suggest you can begin trying to get pregnant about six months after RAI, but that presumes that your levels are good at that point. Some people get there in six months, others do not.

As far as protecting yourself from any effects of the RAI, first you should know that some people have become pregnant sooner and had healthy, beautiful children. The precautions are based on the IDEA that there may be exposure, not on the FACT that there ever has been evidence of "too early" a pregnancy. The idea is that the RAI we do not take up in our thyroid is excreted, mostly through the urine, in the first couple of days after the dose is taken. The urinary tract travels near the ovaries. In order to affect an egg in the ovary, the egg must be reaching maturity. For that reason, doctor "guess" that having six cycles pass after RAI will remove the likelihood that any of the six most-recently developing eggs will be fertilized. Again, it HAS happened, the babies are healthy and beautiful. The doctors, avoiding any possibility of contact with any possibly affected tissue, go further than they believe is absolutely necessary.

The next issue is your health. If you plan to embark on a pregnancy and parenthood, you need to be at your absolute best. That means you still need to reach, and maintain, healthy thyroid hormone levels so you can go into a pregnancy from the best possible position. Now that can take a little time, and waiting for it will be to your advantage, but if your biological clock is ticking loudly in your ears, with diligence perhaps you can reach that point more quickly.

[Ski]

in reply to: My flue and hyperthyroidism #1074162

The radiation you get in a typical dose of RAI is about equal to a long day in the sun. It may help your mother to understand that thyroid cancer patients receive far, far more than we get (sometimes a hundred times more), and it is still not considered to be more dangerous than the cancer it is used to treat.

Many of the horror stories are reproduced on the internet, with outright lies and misleading pictures (in other words, pictures whose origin is NOT what is claimed in the site), so be careful while gathering information ~ you want to look for seals such as you find on the GDF site, indicating affiliation with medical boards and watchdog groups.

RAI has been used for a very long time ~ as a matter of fact, my uncle was treated with RAI in the early ’60s. Patients have been followed carefully precisely because of the age in which the treatment began. The "presumptions" of ongoing danger to the patient just have not proven out over time.

My mother-in-law was similarly against RAI ~ in the end, I know it’s easier said than done, but it is YOUR decision. If you are comfortable with it, convincing your mother isn’t really necessary, though I understand your wish that she be more comfortable with it than she is, at least.

[Ski]

in reply to: How long doest it take on PTU to recover? #1074062

It’s hard to know, exactly. The best known effects are muscle wasting and bone loss, but since thyroid hormone is literally the "gasoline" that fuels every cell of our body, having too much is capable of damaging just about everything. For the most part, people who have been diagnosed rather quickly end up with fewer problems, probably because they are hyperthyroid for less time. People I’ve known who took far longer to be diagnosed correctly (years, in some cases) have endured longer lasting issues, but they don’t each experience the same, or even similar, problems. It’s possible that we are more susceptible in various parts of our body, maybe they have had prior injuries, perhaps they were weak for another reason we don’t know.

Once again, there are two things to consider. First, is a particular issue related to our thyroid hormone levels, in other words, can we improve our symptoms by adjusting thyroid hormone? Second, if the answer to that is NO, what IS causing the issue? Sometimes after we’ve gone through hyperthyroidism and treatment, we tend to point to Graves’ for every subsequent problem. It may be or it may not be caused by Graves’, but the real issue is finding relief, finding a solution, so we all (including our doctors) need to remember to keep investigating each symptom that impacts our life.

[Ski]

in reply to: Thyroid Eye Disease question #1074080

As long as your other doctors are informed about anything you add to your treatment regimen, you should be safe, and I wish you luck.

I would like to point out that the "typical" curve of TED symptoms and changes could easily have produced the same results in the patient you refer to. In other words, the improvements could have occurred exactly that way just because that’s the way the disease operates. As long as this treatment doesn’t harm you, of course you are free to try whatever you like.

We at the GDF cannot say that any information is accurate until it has been proven and scientifically accepted, because we are in the business of telling you what we KNOW, not what we’d like to believe, or what may look good or sound good at first blush. I hope you understand.

We realize there is research being done on autoimmune diseases, and we get "the latest" at our conferences each year. There are inroads being made into research on autoimmune diseases, but the fact is that we are absolutely at the far edges of even understanding autoimmune disorders, much less curing them. At October’s conference, we were told that a genetic defect has finally been identified that exists in all autoimmune disease patients, which is remarkable, so things are coming along. Still, this is just the first brick in the road. We would need miles of road to say we fully understand and can cure.

[Ski]

in reply to: running with untreated hyperthyroidism #1074037

While you are hyperthyroid, you shouldn’t be doing any type of strenuous exercise, for a couple of reasons. The most important is that when we are hyperthyroid, our muscles waste away. This is because the typical "tearing down" mechanism is accelerated, and the "building up" mechanism is suppressed. Strenuous exercise accelerates even further the "tearing down" mechanism, so you can lose more muscle mass if you exercise. This will make it even harder to get back in shape, once your levels are brought under control. The heart is also a muscle, so even if you are protected somewhat by the beta blocker, you still risk damaging the heart.

The second reason for not exercising is because of the irregular heartbeat you can get ~ the beta blockers can protect you to a certain degree, but strenuous exercise can stretch even their influence on your heart rate/rhythm.

At the very least, don’t run any more until you have spoken with the endo. We do have several avid runners here on the BB, and they understand your plight ~ there’s a good chance you can keep up SOME kind of exercise regimen as you go through this, and you can probably handle more than the average bear, but at first, you need to stop, for your own safety.

[Ski]

in reply to: Good newz! the doc has decreased my meds #1074054

SO glad to hear that you’re feeling better! Small steps at a time, we do get better. Celebrate. ” title=”Very Happy” />

[Author]

Posts