# New diagnosis, a few questions



## WanderingAesthetic (Apr 8, 2010)

I'm a 23 yo female, and I was diagnosed with Grave's disease two weeks ago.

This started off pretty slowly. About three years ago I went to the clinic at my college because of a sinus infection, and when the doc was feeling my lymph nodes he found a nodule on my thyroid gland. He asked me if I had a list of symptoms, and I didn't have any of them. He told me not to worry about it, so I didn't. Fast forward to now and I'm still feeling pretty normal, except I'm having tremors in my hands gradually getting worse. Eating a meal late makes the tremors worse, plus just generally makes me feel HORRIBLE. And my heart rate would go up really high when I exercised, and take a while to go down. None of this was so bad I couldn't live with it, however, and I might have ignored this for even longer, except I'm in nursing school now. If I need to stick people with needles as part of job, I'm going to want steady hands.

Looking back, I probably have had symptoms for a while. There was a time in my sophomore year of college that I lost about 10 lbs for really no reason at all. And lately I'd been having what might be some irritability and cognitive issues. I was having trouble remembering things that I knew I knew, if that makes any sense. But anyway.

I have a few questions for you guys.

First off, I was also put on 30 mg of Methimazole a day, which, reading around, seems a bit high. Mind, I don't know what my lab values are, so this might be perfectly reasonable. What do you guys think? I haven't had any adverse affects from it that I can tell, and it seems to be helping. The tremors are almost gone, and a few days ago I had to eat lunch about two hours late. Before I was put on the meds that would have made me feel like I was about to die, but this time I was just very hungry. In any case, I'm going back to the endocrinologist on May the 10th, so I imagine he'll adjust the dosage then, if I need it.

Second, I have some other problems, and I wonder if they could be related. I get occasional, very severe headaches. I've always assumed they were migraines or something similar, though I've never gone to a doctor about them, and they don't have most of the characteristics of migraines other than being very painful and often making me throw up. I think their frequency has increased over the past few years. Could these be related to the Grave's disease at all? I haven't had one since I've been put on the Methimazole, but as it's been only a couple of weeks, that may or may not mean anything.

Also, I have had a HUGE problem the past few years with falling asleep in class and elsewhere. It's not that I'm sleep deprived, because I'll often do it even if I've gotten eight hours of sleep or more. I can sit through a movie or an interesting lecture without this happening, but if I'm sitting still and my attention wanders at all... ZONK. It's made a couple of professors hate me, I can tell you, and I've had to be extremely careful about keeping myself occupied at work. Could it be since my body is trying to go on full blast all the time it will take any break it can get? Or is this just a personal problem?

Lastly, my doctor is recommending RAI. He thinks since I have a pretty big nodule, (3X5 cm, sounds huge, but you can just barely see it on my neck if you're looking for it, and I'm pretty thin) medications are less likely to put me into remission. Is this true? I'm going to go ahead with the methimazole for now either way, because if there's even a small chance I won't have to be on pills the rest of my life, I'm going to take it. But... if I get the scary side effects, or if I have to constantly readjust my dosage and swing between hyper and hypo, I guess I'll go with it. If it was more exact, it wouldn't bother me, but basically killing part of my body and taking pills for the rest of my life in order to function properly sounds like no fun.

Anyways, any answers, thoughts, or experiences would be nice to hear.


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## Andros (Aug 26, 2009)

WanderingAesthetic said:


> I'm a 23 yo female, and I was diagnosed with Grave's disease two weeks ago.
> 
> This started off pretty slowly. About three years ago I went to the clinic at my college because of a sinus infection, and when the doc was feeling my lymph nodes he found a nodule on my thyroid gland. He asked me if I had a list of symptoms, and I didn't have any of them. He told me not to worry about it, so I didn't. Fast forward to now and I'm still feeling pretty normal, except I'm having tremors in my hands gradually getting worse. Eating a meal late makes the tremors worse, plus just generally makes me feel HORRIBLE. And my heart rate would go up really high when I exercised, and take a while to go down. None of this was so bad I couldn't live with it, however, and I might have ignored this for even longer, except I'm in nursing school now. If I need to stick people with needles as part of job, I'm going to want steady hands.
> 
> ...


Hi and welcome!! I wrote out this long reply to you early this morning poofed into cyberspace somewhere.

Just wanted to let you know I did not overlook you and will re-do it later.

Dang!


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## hillaryedrn (Dec 14, 2009)

Hahahaha! That sounds about right, Andros!!

Wandering - as far as the medication, Andros will probably be able to help you more since she has Graves. Just as an FYI, tho, I would call your doctor and request your lab values with ranges. This is good information to have if nothing else. We'd also love to see them if you don't mind! 

I'm glad that you are already getting relief from some of your symptoms! That's wonderful news!! I have heard about the tremors and headaches being related to Graves. The appetite one I haven't, but I'm not saying it isn't!! Andros will again be able to help more.

Welcome aboard!! I'm glad you found us and I'm sure you'll get some great responses here!!


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## Sandex10 (Feb 22, 2010)

Wandering, how long have you been on the Methimazole. I started mine 2 days ago (5mg twice a day). I'm still having tremors, though I know it takes awhile to kick in. Just wondered how long it took you to get some relief.
About the sleeping thing.. For the last couple of years I've had episodes where I felt like I had to lay down and sleep wherever I was. It would come on out of the blue. At work, I would have to put my head down and doze a few minutes. At home, I would have to nap once or twice a day. It almost felt like narcolepsy. LOL Im not sure if there's any relation..but I can sure relate to you


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## Andros (Aug 26, 2009)

WanderingAesthetic said:


> I'm a 23 yo female, and I was diagnosed with Grave's disease two weeks ago.
> 
> This started off pretty slowly. About three years ago I went to the clinic at my college because of a sinus infection, and when the doc was feeling my lymph nodes he found a nodule on my thyroid gland. He asked me if I had a list of symptoms, and I didn't have any of them. He told me not to worry about it, so I didn't. Fast forward to now and I'm still feeling pretty normal, except I'm having tremors in my hands gradually getting worse. Eating a meal late makes the tremors worse, plus just generally makes me feel HORRIBLE. And my heart rate would go up really high when I exercised, and take a while to go down. None of this was so bad I couldn't live with it, however, and I might have ignored this for even longer, except I'm in nursing school now. If I need to stick people with needles as part of job, I'm going to want steady hands.
> 
> ...


So.........................30 mgs. of Methimazole sounds about right to me depending on the severity. It is an individual thing. Some of us have taken that in 3 doses (10 mg x 3 pd) because the half-life is in hours. You may wish to ask your doc about this but meanwhile, do as instructed.

One way or the other, you probably will be on a pill. To my knowledge (and I have been around a loooooooooooong time), no one I know went into permanent remission. Permanent means life-long to me.

There are side effects of the ATD, one being that they are very hard on the liver and long-term use is contraindicated and while you are giving this your best shot which you deserve to do (miracles do indeed happen), your doc should do periodic liver enzyme tests!

Headaches could be GED/TED (Graves'/Thyroid Eye Disease) so I do urge you to see ophthalmologist as soon as you can. Early intervention is essential.


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## Andros (Aug 26, 2009)

Andros said:


> So.........................30 mgs. of Methimazole sounds about right to me depending on the severity. It is an individual thing. Some of us have taken that in 3 doses (10 mg x 3 pd) because the half-life is in hours. You may wish to ask your doc about this but meanwhile, do as instructed.
> 
> One way or the other, you probably will be on a pill. To my knowledge (and I have been around a loooooooooooong time), no one I know went into permanent remission. Permanent means life-long to me.
> 
> ...


I hope you continue to feel better on your Methimazole! How do you feel today? How many days have you been on it? Do you have any edema or itching?

Have you had antibodies' tests? If so, what?


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## Andros (Aug 26, 2009)

hillaryedrn said:


> Hahahaha! That sounds about right, Andros!!
> 
> Wandering - as far as the medication, Andros will probably be able to help you more since she has Graves. Just as an FYI, tho, I would call your doctor and request your lab values with ranges. This is good information to have if nothing else. We'd also love to see them if you don't mind!
> 
> ...


Why is it always the long and well thought out reply? Huh?? Just Poof for no apparent reason. arty0009:


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## WanderingAesthetic (Apr 8, 2010)

To answer some of your questions.

My TSH was 0.01. Very low. I can't find anything for T3 and T4, and I'm not sure if they were ever taken. I plan on calling my doctor Monday to find out.

I haven't had any itching or edema that I'm aware of. In fact, the only side effects I've had were some constipation that has since gone away, and maybe something I'm going to ask a question about in a minute.

I've had the headaches since I was 8 or 9. So, actually, I'm thinking the hyperthyroidism might be something that exacerbates them rather than being the primary cause.



Sandex10 said:


> Wandering, how long have you been on the Methimazole. I started mine 2 days ago (5mg twice a day). I'm still having tremors, though I know it takes awhile to kick in. Just wondered how long it took you to get some relief.
> About the sleeping thing.. For the last couple of years I've had episodes where I felt like I had to lay down and sleep wherever I was. It would come on out of the blue. At work, I would have to put my head down and doze a few minutes. At home, I would have to nap once or twice a day. It almost felt like narcolepsy. LOL Im not sure if there's any relation..but I can sure relate to you


I've been on it for.... 16 days now, and the tremors started to get better after about a week. But then, I'm on 3X the dosage you are.

It DOES feel like narcolepsy, sometimes! But you're the only person I've heard of with Graves that also had any kind of sleeping problem, so... who can say. I can tell you this problem hasn't gotten better since I've been on the methimazole, so again, who can say?

I have a few more questions for everybody:

I'm understand that expecting to ever have normal thyroid function would be... optimistic to the point of foolishness. So, basically I can expect to be on anti-thyroid drugs for a while, and possibly go to a lower dose or temporary remission. Or... get surgery or RAI, go hypo, and take replacement thyroid hormone for the rest of my life. I guess I'm asking: _what's going to give me the best chance of feeling "normal" long term?_ Correcting this by destroying my thyroid scares me. I guess since I know what hyper feels like for me, it doesn't scare me very much, it's not great, but I know I could live with it if I had to. I don't know how being hypothyroid would effect me. Part of this, maybe even most of this, comes from vanity, I admit. Gaining weight and skin issues and hair falling out. Ugh, ugh, ugh.

And... regarding RAI for Grave's. Is the goal total destruction or partial destruction of the thyroid gland? Or does it depend on your doctor and your case? Because total destruction seems a bit excessive, at least for me.

If you have RAI or surgery, how difficult is it to get on a good level of synthetic hormone?

Are the heart problems related to hyperthyroid because of high heart rate? Or does it cause other changes as well? My resting heart rate has sat around 80 for as long as I can remember, which is in the normal range, though I think it might get abnormally high sometimes when I work out. Actually, my pulse just now is 70. Not sure if that's because of the methimazole or not.

Also, I'm having what might be liver pain? Nothing major, just the occasional twinge that I can't even say for sure is real or me being paranoid. I can't locate my sheet with all the potential side effects for the methimazole right now. So is this a normal side effect or a sign I might be having an adverse reaction?

And here's something you guys might not know, but I'm going to ask anyway: If I have children, what are the odds of me passing this on? My family thinks that my paternal grandmother probably had undiagnosed Grave's disease, but none of her children have it. Mind, all three of them are male, and it does occur more often in women, so.

Now for some snark and *****ing: In general, I'm hating all of my options and I'm kind of feeling like a defect. I'd like to get God on the line, because I have some major complaints! Wikipedia tells me that 2% of women contract Grave's at some point, and that's just one health problem. I mean, really, us silly humans can hit six sigma.


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## Andros (Aug 26, 2009)

WanderingAesthetic said:


> To answer some of your questions.
> 
> My TSH was 0.01. Very low. I can't find anything for T3 and T4, and I'm not sure if they were ever taken. I plan on calling my doctor Monday to find out.
> 
> ...


I meant to tell you that I too had narcolepsy and found a great improvement by omitting simple carbs from my diet. All breads,starches and sugars. This was before and for a while after I was treated for Graves'. As soon as I would eat my lunch, I would pass out. I kid you not. I was afraid to "eat and drive"; that's how bad it was. I quit the simple carbs and was 90% better.

Now, I am on a gluten free sugar free artificial sweetener free diet and I never have narcolepsy. Never. It was very scary.

Try it and see what happens.


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## Lovlkn (Dec 20, 2009)

wandering,

Hi and welcome!

I took Tapazole aka Methimazole for 4.5 years. I tried to take my doses 8 hours apart figuring it would do my body better than 1 big dose.

I'd be curious to see your lab results - it's your right and you can ask for paper copies of all labs run. I get paper copies every single time I have labs - always. I imagine you had alot of antibodies tests run as well as a CBC and liver function tests which are all helpful and you need to begin a file for lab results.

Having copies of your lab work will help you guide your doctor to dose you properly. Many of us have been taken from full hyper to full hypo within weeks so you need to be very aware of your body.

30mg is a fairly high dose. You need to be sure your doctor runs a FT4, a FT3 along with your TSH - the Free T hormones are what you need run to properly dose anti thyroid medication. You need to have labs run before your next appt with our endo, in the beginning frequent lab's are necessary.

If properly dosed in the beginning of Graves disease you have a good chance of reaching a remission so stay positive. Do your research and it will help you make some good decisions as far as treatment goes.

Migranes and Graves happens to some people. Imagine your body going at 100 beats per minute all the time - you'll burn out from time to time.

You also should look at your diet and try to eat at least 6 times a day to help spread out your energy.

Lovlkn


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## Mariposa (Apr 10, 2010)

Hello, Just read your post, sorry to hear that you are going through this. Hang in there. So has your Dr actually sat you down and discussed RAI or Surgery??


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