We’ve been trying to control it with Methimazole for over a year now. Every time I see the docs, they get more naggy about simply just nuking my thyroid gland and putting me on synthroid for the rest of my life. I’ve resisted because once the gland is dead, it’s dead. Both my brother and I have had various auto-immune things going on here and there over our lives, and generally they’re the sort of things that flare up then go away, and I’ve been hoping my thyroid would calm down on its own. So far it doesn’t seem inclined to do what I say.
I searched, and know there are a couple Dopers with Graves’. How’s it going? How do you feel about losing your thyroid gland forever?
It’s ok…I had radioiodine treatment to kill off my thyroid about 10 years ago, and really, it hasn’t been any great shakes. Blood work every six months to see how my levels are doing and medication adjustments in response. At the moment, it’s 100mcg/day of Synthroid.
When you consider how shocked my doctors were that I was still alive when I was diagnosed, it’s really not any big deal now. Pop that pill first thing in the morning, and that’s about it.
I have Graves but apparently a fairly mild case. I am on 5mg Methimazole daily, which is easy to deal with.
I don’t seem to have any side affects of the meds, but I seem to have a reduced heat tolerance compared to before the Graves.
I have a very slight exopthalmia in my left eye which is not usually noticable but for example if I look upward you will see more white under the pupil on that side.
I understand that eye dryness can be an issue for more severe exopthalmia and double vision can be an issue as well. A friend of the family wore an eyepatch for years but a recent corrective surgery was a huge success and her vision is back to normal and she looks totally normal.
Were you bad off before getting on meds? I had an insanely high heart rate, moderate tremor, and was dropping weight like crazy despite being ravenous and eating accordingly.
It seems odd to me that radioactive Iodine treatment is such an all-or-nothing proposition, but the doctors do seem to like to kill the whole thing off and replace with Synthroid starting from scratch. I am hoping to avoid that due to the stability and relative mildness of my condition.
My BIL had his thyroid removed as a child and has been on replacement ever since. It seems like he has trouble regulating and has to adjust his dosage frequently. No idea whether that is typical. I think he is mostly asymptomatic when the levels are correct, though.
I was diagnosed about six years ago. I remember the several months before as the happiest of my life – come on, six meals a day with snacks in between and still losing weight? For a glutton like myself, that was heaven. Sure, there was also a modest palsy and heart palpitations, but it was a small price to pay for getting my money’s worth at buffet restaurants.
Now I’m on 2.5 mg of methamazole and if I miss a dose or 20 I hardly notice it. A couple years ago an insurance snafu deprived me of my meds for about three months and it was only in the last week or so that I started to have some symptoms (anxiety, primarily).
I’m horrified by the idea of nuking the thyroid because from what I’ve heard, it’s much harder to keep an even hand on your levels, but if the meds to depress your thyroid function aren’t stabilizing things, maybe it’s not something you can avoid forever. IME, the docs are always anxious to zap you, but of course, they’re not the ones who have to live with the consequences.
I agree with this, it is actually sort of disturbing. I am pretty much entirely asymptomatic and taking a very small dose of a cheap medicine but they want to destroy my internal organs so that I can take a big dose of a different medicine?
That said, it may be the best solution for the OP if the Methimazole is not working or if he has side affects from it.
I’m currently on 15 mg of Methimazole/day, and during my last visit they were thinking of raising it, but it may have been a bit high because I got lazy and ran out for a couple weeks. Anxiety, fear & avoidance of various things is one of my symptoms, which isn’t good when it comes to renewing my meds. I’ve gotten much better though. I got myself one of those daily dispenser thingies.
It probably went undiagnosed for about two or three years. I knew something was wrong, but my symptoms were so all over the place (as is so common with Graves) that neither I nor a series of doctors could pin it down. It was actually a phelebotimist who was drawing blood for yet another round of tests that said “Bet’cha anything it’s hyperthyroidism – tell your doc to check on that”.
By the time they figured it out, I was down to 112 lbs and would walk around outside comfortably in a t-shirt in February. My standing heart rate was somewhere in the neighborhood of “hummingbird on meth”. When the endochrononologist who treated me first gave me the diagnosis, I asked how serious it was. “If you said you were going for a walk around the block, I wouldn’t beleive you would survive it”, was his comforting response.
We tried going with just medication for a bit, but within six months, it was clear – that sucker had to go. Some tests, some measurements on how quickly my body absorbed radiation, and then they whipped up my nuke-pills.
Since then, it’s been pretty smooth sailing. They’ve had to adjust my Synthroid levels up and down several times (the 100mcg dose I’m currently on is the highest level I’ve ever taken), but other than that, there really hasn’t been any sign of the disease. I’m certainly not the bag of bones I once was – not nearly as twitchy and sweaty all the time. All in all, things are good. Not a fun disease, but nothing that can’t be treated, either.
Best of luck with it, and feel free to ask whatever you’d like to know.
The doctors frequently mention the decreased heat tolerance, but I keep telling them I don’t know what that is. I’m almost always cold, and I hate the cold and would welcome feeling warmer. Of course, we’re currently getting 90+ days here in Colorado Springs, so that’s a little too hot to be sitting in the sun for too long, but I wouldn’t call that heat intolerant.
I’m not sure how bad I was. I think I’ve been experiencing some of the symptoms for years. For instance I’ve had the racing heart, vibrating/buzzing heart thing for a long time, but it was so mild that during the day I called it anxiety attacks, once I had a name for it, and at night I thought for years the vibration was coming from the bed/outside or something, and didn’t realize it was my heart doing the hummingbird thing.
My normal adult weight is around 155, pretty exactly. But, as I was getting older my weight started to fluctuate a bit, then I ballooned up to 190. Immediately after that I moved, and started dropping weight like crazy. I attributed it to change of environment, a little more exercise, etc. Then the weight just kept coming off and my overall health kept getting worse. I’ve always had low blood pressure and in the military they said I was fit, after the military I was fit (I wasn’t that fit anymore) and eventually I wasn’t fit at all and the doc asked me why I wasn’t fainting all the time.
So, I went through the skinny as bones thing, eating whatever I wanted, still losing etc. until I figured I must have cancer or something. I’ve had an elevated white blood cell count for many years too.
Anyhoo, that’s about where I’m at. I’m up over 140 lbs, which is about 20 better, but could stand to gain a bit more if it would go anywhere other than that ponch around my bellybutton. :mad:
I was getting really jumpy. Like shell shock jumpy. I still have that, but I’ve got meds that help a bit.
I do get my meds by mail, as long as I remember to order them.
Heat intolerance for me is not that I feel more discomfort from the heat, but rather that I am much more susceptible to symptoms of heat stroke / heat exhaustion. Working outside in very hot weather I might get into a state where I feel very weak, light-headed, heart racing, etc. So I need to take more care when there’s a dangerous heat index.
You might be feeling extra cold if you are underweight. When you get regulated and back to your normal build that might change.
“Jumpy” is a good description of how I was before my diagnosis. Like I’d stayed up all night and propped myself up with caffeine.
