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in reply to: Will Surgery Prevent Eye Problems? #1074183
Hi Amy,
The eye disease operates separately, and so it is not believed that any particular treatment for the thyroid disease can affect our experience with eye disease.
You should know that eye involvement in Graves’ patients who are diagnosed in their youth is much less common, and typically involves the fatty tissue surrounding the eyes (instead of the muscle tissue). Fatty tissue involvement resolves much better, if it happens.
In addition, those who suffer the worst of the eye disease are a small percentage of the total Graves’ patient population, so usually it’s not something you need to actively worry about.
I should point out that one study of post-RAI patients found "temporary worsening" of symptoms following RAI. Neither term was well defined, and the population affected was about 16% of the patients. That number was reduced to 0% when the patients took oral steroids for a short period of time (a week or two) prior to and following the RAI dose. Steroids carry significant risks, even a short course like this, so usually doctors opt against the steroids unless eye involvement is already moderate or severe. It’s something to discuss with an ophthalmologist if you’re considering RAI treatment.
We did have some doctors speaking about orbital radiation at our conference in San Diego last October, and they pointed out that the studies regarding orbital radiation had some flaws in them. One of the most quoted studies used orbital radiation only on patients in the cold phase, and the more recent studies have shown that there is only benefit for those in the hot phase, so that first study on patients in the cold phase, naturally, concluded that orbital radiation was ineffective 100% of the time.
The doctor who spoke to us pointed out that patients who respond well to oral steroids during the hot phase are also likely to respond well to orbital radiation in the hot phase. The treatment he preferred was "a little of each," reducing the risks from each, and sometimes producing better results than either treatment alone.
in reply to: What’s Normal? #1074262Best thing to do is to get settled at some level (which may take a little while), and evaluate your symptoms while your levels are stable there, then you can more easily tell what you’d like to change, by small degrees. I know it’s challenging to get completely settled levels, but it should get easier over time. Patience!
” title=”Very Happy” />in reply to: Does anybody know of a good? #1074249We can’t post doctor’s names here, but people may send you personal messages with doctor’s names. We do have links on the main site to places where you can search for this information as well.
in reply to: Still fighting to gain weight after 8 years #1074258You don’t mention your thyroid hormone levels ~ it’s possible that your synthroid is being given in too high a dose, which would render you hyperthyroid and weight/strength loss issues would result.
Please do not ever stop taking synthroid ~ the RAI destroyed your thyroid, and your body must have thyroid hormone to survive. That’s what the synthroid provides. A higher/lower dose may be required, but please do not ever stop taking it (or at least some form of synthetic thyroid hormone replacement).
in reply to: Overall this board is mostly for surgery #1074253I’m sorry it appears that we may be biased in any way ~ believe me, I’ve been associated with this Board for more than 10 years, and I’ve met many many MANY of the people, and we are all patients, we’ve been through this, we take the time to educate ourselves, and we work tirelessly to promote treatment in general, as well as to promote patient choice of treatment. All three treatments work. We each have different experiences, biases and opinions that point us toward one treatment or another.
Perhaps what’s happening is that doctors are typically against invasive treatments like surgery, so it takes a patient who is determined in order to get the surgery, and many come here to find out whether it’s a valid option for them, so we talk about it more often.
in reply to: What’s Normal? #1074260Hi Sarabear,
This is not like any other condition you’ve had ~ we don’t get to normal and POOF, feel right. Hyperthyroidism does incredible damage to our entire body, and the first thing we need to do is stop the attack, then we can begin to heal. Just begin. Think of it as a hurricane ~ the wind and rain come, the houses fly apart and the trees fall down, then the wind and rain stop. The hurricane is over. Is everything fine? Hardly. Your body, IF you’ve hit normal levels, is now beginning to put the houses back together and clean up the mess. You will still feel less than normal for a while. Look for small improvements and it’ll help keep you from being discouraged. You are on the right path, and you’re getting there.
Now, are those levels normal? A look at your test results should tell you ~ each lab has different norms, so you need to see the results from your own test in order to determine if you are in the normal range or not. Those test results belong to you, so you should always get a copy of them. No one cares more than you do, and you will need them as references points while you go through this.
Remember that the normal range is quite large, and that is because different people feel "normal" at different points along the scale. The fact that your levels fall within the normal range does not always mean that is YOUR normal, and dialing that in is a bit of a chore, but very worth it. At least, once you are within the normal range, your body begins to get some rest. That’s important.
I wish you luck as you go through this ~ visit often, let us know how it’s going!
in reply to: graves and other organs affected #1074267Hi Pinky,
There are two ways Graves’ affects us ~ one is through the attack of antibodies, and the other is through the damage caused by hyperthyroidism. The antibodies, as far as we know today, affect three areas of the body (and, to be absolutely clear, they are three different antibodies, though apparently related, since they occur together), which are the thyroid, the muscles/fat surrounding the eyes, and the skin on our shins.
The damage caused by hyperthyroidism can be far more widespread in the body, since thyroid hormone is literally the fuel that keeps our cells going, and every minute that we are hyperthyroid is like being in a car with a brick on the gas pedal. Things start to break down under those conditions. That means that any place in the body CAN be affected by hyperthyroidism, and extended periods of hyperthyroidism cause the most damage (for instance, the time between symptom onset and correct diagnosis, which for some people extended for many years).
As far as the heart goes, there are two ways hyperthyroidism can affect it. First, when we are hyperthyroid, the electrical impulses in the heart can go haywire and create wacky heart rhythms, which can send the heart into a "tailspin" and sometimes the patient does not recover. This effect is one reason we are put on beta blockers when we are first diagnosed ~ it keeps those rhythms from occurring. Secondly, when we are hyperthyroid, we experience "muscle wasting," and the heart IS a muscle, so some people do experience heart damage.
Now, as for other body systems/organs that can be affected, as I said, it’s literally possible for anything in your body to be affected by the hyperthyroidism. I would suppose (this is completely opinion) that places in our body with prior trauma or those that have been weakened due to other causes would be more likely to suffer. We can experience bone loss and muscle loss as a result of hyperthyroidism, those are pretty common. I haven’t heard any widespread stories of other areas/organs being affected, but keep in mind, for yourself, areas in your body that may be vulnerable, and make sure you do what you can to protect those areas or keep an eye on their function/health (with your doctor’s help).
in reply to: New and worried #1074320Typically things do happen a bit more gradually than you’ve seen ~ and with ATDs, moving him from a hyper to a euthyroid state should be getting a little easier by now. Still, spikes in antibody action can create hyper phases during ATD treatment, and that can come from all kinds of causes. Stress causes an adrenaline rush, which "amps up" the immune system, and for those of us with autoimmune disease, that means our Graves’ symptoms "amp up" at the same time. In addition, your son may be going through hormonal shifts (not sure of his precise age), and that can affect our body’s use of thyroid hormone, which can make things a bit crazy as well.
I think you would definitely benefit from a symptom diary ~ it’s simply a log where you note symptoms, the severity of those symptoms, ATD dose, thyroid hormone level (if you know it ~ obviously we don’t run those tests all that often), and in your son’s case I might even include some extra symptoms like anxiety, ability to concentrate, or noting whether he has "finals" or some other stressful school activities. This can be a handy reference when you speak with the doctor and try to figure out how to keep your son’s levels closer to normal.
This is a rough road, there’s no question, and dealing with it for your child is difficult by another order of magnitude because you don’t know exactly how he FEELS, but you want to make it all better, quickly. I’m glad to hear that his current school is more understanding, that will definitely help. If there’s anything you can do to help him get the work he’s missing ~ have a friend come by with the work and just discuss it with him, or get a "packet" from the teacher that he can read and work on when he feels well enough throughout the day ~ that might ease his mind as well.
You say the original diagnosis was April last year, so you’re closing in on a year of treatment at this point. You may want to consider a couple of things. First, have a very frank discussion with the doctor (hopefully with a symptom diary in hand) and see if they have any strategies in mind for finding and keeping a normal level of thyroid hormone in your son’s bloodstream. If you don’t hear what you want to hear (a solid PLAN that you can participate in), you may want to consider interviewing new doctors to see if they have ideas you have not yet explored.
In addition, you may need to consider the harder decision of a more permanent solution, one that would not open your son up to the risk of hyperthyroidism every time his adolescent hormones spike or his stress levels escalate. It’s a BIG decision to make, and you should not make it lightly, but it may be a solution that would work better for him. That’s a decision to make WITH him ~ he should have a say in how to proceed. You may be surprised to hear what your son is feeling/thinking/wanting.
You’re taking very good care of him. Know that.
I think that whatever you like best should be your treatment choice, truly. Each of us has our own considerations, and if a look at the three treatments makes one stand out big and bold for you, then that’s the right thing for you. The extra advantage of ATDs is that it keeps your options open, which the other two do not. At the very least, it would make sense to use ATDs to lower your levels in order to give your body some immediate rest and then you can continue to research.
The truth is that this decision can be somewhat emotional. Many people I’ve spoken to have had an immediate reaction against one or another of the possible treatments, and that’s been against all three possible treatments for different people, for a bazillion different reasons. So you believe that ATDs seem the obvious choice, and that’s probably how you should start, unless your doctor advises against it for some reason. EVEN SO, if your doctor advises against it, consider that, but it is not necessarily a given that you should do exactly what your doctor advises ~ it is essential to understand the basis for the advice (does the doctor say it may be bad for you, or does he think it’s bad for anyone, for instance), and you may want to get advice from several doctors. The truth is that not all the doctors agree on this, and information is power for the patient. The more information you have, the better decision you will make for yourself.
in reply to: New – have questions about shortness of breath #1074299You may still need more time, and some really gentle, progressive conditioning, before your capacity for everything is back up to what you would term normal. We had a speaker at the first San Diego conference (2005, ironically) who climbed Everest after Graves’. He had done similar activities prior to Graves’, but he told us that the conditioning was significantly more difficult, and not because it was Everest, but because he was recovering from Graves’.
Bobbi tells us that when she was initially recovering, a physical therapist evaluated her strength at 5% of the normal levels for a woman her age. That is an incredible amount of muscle loss, and the process for strengthening (without damaging) those muscles is very different from anything you have done before. If you’ve been pushing yourself to do more and more, you might have been overdoing without knowing it.
You may want to make an appointment with a physical therapist for a similar evaluation. They can tell you where you stand, and also what you can tolerate, as well as helping you know when to push it along the way. Bobbi had to lift small, paperback books to begin conditioning.
It sounds as if you’ve already looked into your heart/lung health, and that’s comforting. Perhaps this is an avenue that can bring you some help.
in reply to: HI.Can I get some support? #1074301The best thing to do for sleep is just to prepare yourself properly ~ do something relaxing (hot shower or bath), turn down the lights, read or do something quiet. Give yourself about an hour to wind down before you feel as if you "must" be asleep.
If the sleep aids work for you, go ahead and use them for now. As long as they do not create dependency, it is absolutely critical that you continue to sleep well. If you stop using them and then have trouble sleeping, you can take a small problem and turn it into a big one. If you are uncomfortable using them, try half a dose and see if that works just as well.
Welcome to the group! Let us know about any questions you may have, we’re here to help!
in reply to: How can I be more supportive? #1074355The most important thing to realize is that there are two reasons we get emotional ~ one is simply desperation, frustration, and exhaustion. The other is a very real chemical imbalance. One we can "talk through," the other we cannot. The only thing that will cure the chemical imbalance is to bring our body chemicals back into balance. In the meantime, if everyone (including ourselves) understands that we can’t just "suck it up and act better," it’s helpful.
As I’ve mentioned before, my emotional outbursts came on like a freight train ~ I could handle a lot of things throughout the day, but at some point on some days I would simply LOSE it and go off into a snarling, spitting tirade. I could no more stop it than I could stop having skin.
Family members take the brunt, but co-workers could get caught in the crossfire just as easily.
TRY not to take it personally. I know that’s easier said than done.
in reply to: ? before I go to the Dr on Monday #1074303The only drawbacks I know about PTU are that first, it is short-lived, so you typically must take it three times a day, and you also need to do your very best to make those time periods standard in order to have the best possible chance of keeping your levels steady. Second, it tastes foul. Some people either bury it in food that tastes good, or follow it with something they like that is very strong-tasting.
Other than that, it works slightly differently to produce the same result, so I’m not sure whether you would experience the same difficulties, but it’s probably worth a shot. We’re all so different, it’s really impossible to say what you might encounter. Most of the big side effects are the same across the two meds, but you’re talking about "secondary" effects (not all that common), so there is a chance that PTU would not cause those same issues.
in reply to: Tapazole and muscle weakness #1074326Hi kaicee,
Actually, hyperthyroidism can cause muscle weakness ~ and it would resolve once your thyroid hormone levels normalized and you had a chance to heal, as well as to strengthen the muscles again. I’m not sure you can blame the med at all.
It can be pretty severe ~ I felt like I was 90, and I wasn’t even 40. The larger muscles (upper arms & legs, chest) are the most often affected. If it subsided with normal thyroid hormone levels last time, it may well do that again.
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