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in reply to: Torn retina #1072836
Graves’ can affect many areas of the body, that’s true, but typically it doesn’t include a torn retina. You say it had been torn previously, so it’s far more likely to be related to the prior incident than to Graves’.
As always, ask the doctor for their take on it and let us know!
in reply to: Good News/Bad News #1070628There was an interesting comment made at our last conference, that it appears people with chronic sinus problems are more likely to present with the more severe symptoms of TED. Perhaps this has to do with the antibodies taking advantage of prior weakness in the body.
in reply to: three weeks post rai… #1070745If you’re exercising when your body is healthy, those are the results. If you’re exercising while your body is actively hyperthyroid, you can be doing a great deal of harm.
in reply to: Help me sleep PLEASE!! #1070651The sleeping issue is tough, but it’s worth figuring something out. We had a doctor speak with us at one conference about sleep issues, and he said that it’s important to solve this before it becomes "chronic," because then it turns into something mental as well as physical, and it’s harder to correct.
There are a few things that may help. First, remember that laying still, relaxing your body, is nearly as good for you as full-on sleep, so pursue whatever you can accomplish successfully, and try not to be frustrated when sleep doesn’t come as easily or last as long as you are used to. Your body is chemically imbalanced right now, so there’s only so much you can do to overcome that until the meds (or whatever treatment you choose) take effect. Do the usual things ~ avoid alcohol and caffeine in the later part of the day, take a long, hot bath or shower shortly before you plan to go to bed, go into a dark, quiet room and lay down. No TV ~ it’s bright, the images change often, it’s rather "exciting" to the brain ~ but reading is okay, if it helps you. If it creates one more distraction from rest, skip that too. If you haven’t been able to sleep for very many hours at a time, you may want to go ahead and let yourself stay up a little later than a "typical" day, so that when you DO go to sleep, you’re likely to sleep all the way until your alarm goes off. I think some of the hardest times are after we wake up in the middle of the night and can’t get back to sleep.
In any event, if you find yourself laying there and being frustrated and your mind running a hundred miles an hour, get up again, move to another room, turn on some lights and do something else. Choose to read a magazine or get something done that won’t take too much physical energy to do. Then try again.
If it’s at all possible, look into daytime naps to "make up" for sleep you lost the night before. I’ve read several sleep studies, and they all came up with different answers ~ one said it’s impossible to make up sleep, another said it’s essential ~ so feel this out for yourself. If a nap one day means you sleep even worse that night, well, that’s the answer for you. If it helps you function during the day and doesn’t affect your ability to sleep the next night, again, there’s your answer.
It’ll get better as you proceed through treatment, I promise
” title=”Wink” /> Hang in. We’ve all come through to the other side, and you will too.
in reply to: Im not on atds during rai. Why? #1070683I think you may be outside the most risky period for having a thyroid storm, but it’s still possible, so it’s good to know the symptoms just in case. You’re past the "dumping" period at the first couple of weeks, and now you’re nearly done flushing out the excess thyroid hormone you had before RAI. Your thyroid hormone levels should be dropping pretty steadily after that. I know what you mean about calling the doctor ~ we always want to make sure we NEED to call, so we don’t take up their time frivolously, and yet we’d like to think we could bring anything up, any time it comes up. You may want to check with your doctor’s office and see if you can get an e-mail address or something for quick questions like this ~ if you acknowledge you may not get answers immediately, they may be willing to give you access that way, just for your own peace of mind.
in reply to: Normal Labs After three weeks post RAI #1070668The different ranges of normal between labs shouldn’t make an enormous difference in what you find out, but make sure you don’t compare the value in one test to a value in the other test ~ just look at the relationships to the normal range, to evaluate your progress.
The one thing about Graves’ that is consistent is that we are never the same as another Graves’ patient, so there’s no calculation we can make to say when exactly you would be going hypo, based on your progress to date. It’d be nice if we could, it’d save time for lots of us….
The best thing to do is keep a symptom diary. When you notice 4 or 5 classic hypo symptoms that are occurring frequently, go and get your blood tested. You may see at first that you are feeling as if you may be hypo, when in fact your levels read normal. That happened to me after my RAI, and all I could surmise was that it felt sluggish for me, because I was used to hyper by then (it was the only time that everything in my house was getting done!). So keep track of what’s going on with you, get blood tests when you feel it’s necessary, and go from there.
As I used to tell my kids when we were on long road trips ~ "closer every minute!"
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in reply to: three weeks post rai… #1070741When we’re hyperthyroid, strenuous exercise can be dangerous for us. The irregular heartbeats we are susceptible to can spiral out of control, and also we lose muscle mass when we’re hyper because the "breakdown" function of our muscles is accelerated, while the "rebuild" process is suppressed. Exercising can break down even MORE muscle, so it leaves us in a very bad state. Muscle mass is critical to maintaining our weight after our levels get back to normal, so we need to try and keep all we can.
in reply to: Im not on atds during rai. Why? #1070681Not everyone takes ATDs after RAI ~ I didn’t.
in reply to: Thyroid Uptake Results…What Were Yours? #1070685The thyroid uptake results really don’t indicate how sick we are, or even how hyperthyroid we are ~ the only measure of that is our thyroid hormone levels.
The scan/uptake serves a couple of purposes. First, the doctor can confirm Graves’ by the pattern of uptake (high uptake across the entire gland), and second, they calculate the best RAI dose based on the uptake percentage, because that tells them how much of the original dose will remain inside the thyroid. The rest (the percentage that does NOT go into the thyroid) will be excreted.
It’s not surprising that your percentage is higher now than it was years ago ~ the antibodies have continued their attack, and have involved more of your thyroid tissue in the process.
The only "must" with Graves’ is that you get SOME form of treatment. RAI is not the only way to go, you have all three choices available to you, and the ultimate decision is YOURS, no one else’s. Barring anything that would keep you from using one or another (for example, a hemophiliac would be ill-advised to have surgery), you can do meds, RAI, or surgery, whatever your preference. If your doctor is pressuring you for one specific treatment, ask why. Have a frank discussion, ask everything that comes up for you, take in the information your doctor has to share, and then make your own decision. We’ve heard of doctors who have told their patients "if you don’t do what I say, I will not treat you." My answer to that? Fine, I wouldn’t want you treating me, if you don’t even care how I feel or what I want. [This advice, obviously, is NOT applicable if the doctor is telling you things like "I think this treatment will be fatal for you." That’s the kind of statement doctors hate to make, so if they are willing to go out on that kind of limb, you must face reality.]
Remember, we pay the salary of whichever doctor we see, either out of our own pockets or through our insurance carrier. If we do not like the treatment we are receiving, we are well within our rights to stop paying that salary and start paying for someone who will treat us right.
As I said, the ONLY thing you must do is have SOME treatment, and get those thyroid hormone levels back into the normal range. It is critical for your future health. The damage just continues exponentially if left untreated. And beta blockers are not treating your thyroid hormone levels, they’re just keeping you comfortable. The damage goes on.
in reply to: Finger joint pain-severe #1070698This isn’t something I’ve heard of as associated with Graves’ or thyroid imbalances, but I would definitely get it checked out by a doctor to see what may be going on. If it’s just muscle cramps, that can be associated with hypothyroid levels, but truly, have it examined to figure it out conclusively. Whatever it is, you’re better served by going in sooner than later.
in reply to: What’s next #1071809Hi, and welcome! Sorry you needed to join the club, but we’re glad you found us. Mostly, beta blockers just mask the symptoms we hate most ~ the tremors and the anxiety. They also serve a function in protecting the heart from the odd rhythms that hyperthyroidism can produce. If you have asthma, I don’t think you can take them. They don’t treat the hyperthyroidism at all, but they help us feel better (and, of course, protect our heart).
in reply to: three weeks post rai… #1070737It’s not really a big deal, taking the replacement ~ there are rules about taking it on an empty stomach, and not eating for a period of time afterward, as well as leaving mineral supplements for another part of the day, but you just take it once a day ~ I haven’t had much trouble getting into a habit, but I never liked to eat right away in the morning anyway. It’s absorbed in the intestine, mostly, which is why they have rules about an empty stomach and not eating for a while afterward ~ just to let it get down there, all alone, and start being absorbed, so you get the most out of it you possibly can. Some people set an alarm an hour before they really want to get up, take the replacement hormone, and then go back to bed so they can eat and drink right away. Remember, it takes a while to build up in your bloodstream, so you don’t have to worry about massive reactions quickly after taking it. They come up slowly, kind of like Graves’ did at first. Also, if you miss a dose by accident, it’s not that big a deal ~ you won’t be "low" quickly either. As far as food restrictions, there are some you might want to consider, but if you are doing the same thing every single day, then your dose will ultimately be calibrated TO that normal, if you see what I mean, so just be consistent and you are more likely to have an easy time getting regulated.
I hope that helps a little.
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in reply to: What’s next #1071807If you’ve gone hypo, it’s likely that your doctor will recommend stopping the beta blockers ~ but please wait for word from your doctor on when and how to do that. We must wean ourselves from beta blockers slowly, otherwise they create a "rubber band" effect of the symptoms they’ve been relieving, and you can end up quite uncomfortable. Typically we’re on very low doses of beta blockers, so the weaning process shouldn’t take longer than a week or two, but ask your doctor for specific instructions.
in reply to: High TSH, Normal FT4 #1070747This is a good time to keep a symptom diary, so you can see if something about your level is unbalanced FOR YOU. The ranges of normal are quite large, precisely because some patients feel normal at the high end, others at the low end. Keeping a detailed symptom diary can help you figure things out when things "seem" fine, yet may not be fine.
When one level is out of the normal range, it’s absolutely something that needs to be investigated. There may be several causes, and it may not be what you expect, especially if your "other" level seems normal. In any event, the discussion should continue. You and your doctor should talk about the possible next steps, whether it’s further tests, or changing your meds.
in reply to: early on-set menopause #1072143Yep, VERY common to lose libido during imbalances (on either side ~ hyper or hypo).
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