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in reply to: GD treatments / to seekingclarity #1075275
Ho ohiolady,
In a nutshell, that’s pretty much it ~ but those six week windows are a guess, and an optimistic guess at that, so please take that into consideration. Also, don’t say "most likely not" for remission. The percentages I’ve heard are somewhere between 30 and 40% for a first try, and that’s nothing to sneeze at. I think the six months your doctor refers to probably includes the fine tuning.
ALSO ~ remember that after ATD therapy, presumably you wouldn’t have been hyper for a long period of time before doing RAI, so you’ll go into it healthier than when first diagnosed.
in reply to: New to Graves and struggling with life… #1075383Check with your doctor, but typically we are told to limit exercise while we are still hyperthyroid. There are a few reasons ~ first, our muscle "tear down" mechanism is accelerated, while our muscle "rebuild" mechanism is suppressed, so you can actually lose more muscle mass if you exercise than if you don’t. Muscle mass is very important ~ it burns calories even at rest ~ so you don’t want to lose it if you can help it. Most of the weight loss people have when they are hyper is muscle mass, so it is NOT the good type of weight loss.
In addition, hyperthyroidism can cause irregular heartbeats, which can be very dangerous because they can get out of control. Obviously, exercise speeds up the heart rate, which may complicate matters further.
I’d stay off your cycle until you talk with your doctor.
in reply to: New to Graves and struggling with life… #1075381Hello ohiolady,
The two ATDs differ slightly in their function, but they accomplish the same thing. I’m not sure why a doctor or patient would choose one over another (other than pregnancy, or difficulty with one of them). I know PTU needs to be taken throughout the day (typically multiple pills at each dose), and methimazole is once a day. I’ve heard PTU tastes horrid. Methimazole does not.
The ATDs are really your best bet to feel better quickly, as long as you tolerate them well. You’ll need at least six weeks just to let your body flush out the excess thyroid hormone in it when you began taking ATDs, so factor that in to your calculations.
It’s a bit of a roller coaster to find normal levels, no matter which treatment you choose. Thyroid hormone levels adjust in the body slowly (it’s a protective thing the body does for itself), so we really need to be patient between adjustments in our medication dose (whether it’s ATDs or replacement hormone). If we try to get in too close ~ testing and changing doses every few weeks, for example ~ we can actually make things more complicated, because we’re reacting to something that isn’t finished processing yet. I hope that makes sense.
If you can limit your stress, and improve your response to stress, it will absolutely help your symptoms. Stress stimulates the immune system, and that’s where our damaging antibodies come from, so when you stimulate the entire system, you stimulate these as well, which increases our symptoms. Limiting stress can’t change your thyroid hormone levels, but it can help you to feel better overall.
It’s hard to say how you’ll feel in February, but you may be well enough to go on the trip. At least it’s a relaxing trip. ” title=”Very Happy” />
Your uptake percentage actually doesn’t correlate to how sick you are, or even how bad your symptoms are. It can tell you that it’s higher than a normal patient’s uptake percentage, and so point to Graves’, and it is used in the calculation for figuring out your dose of RAI. It means that 34% of the RAI dose would be taken up into your thyroid, so then they "backwards figure" the number of millicuries you’d need in order to get as many into your thyroid as they think you need.
For now, take it EASY on yourself. You may not look sick, but you are fragile right now.
in reply to: Graves Eye Disease #1075485Hi msjoany,
The good news is that your eyes may have a phase of improvement, and some of the protrusion and discomfort may disappear. At our most recent conference, the doctors said that the eye disease typically follows a course that is somewhere between 12 and 36 months. Smokers seem to experience the longest disease curve. Near the end of the curve (referred to as the "cold phase"), the eyes can improve, and typically they stay that way. If you are willing to wait even longer, further improvement is possible, though it would likely be in tiny degrees and over a long, long time. In any event, you can look at your current condition as temporary, and that may help.
Please don’t presume that the treatment you had was the cause. Only one study has shown that a small percentage of RAI patients experience "temporary worsening" of eye symptoms after RAI, and no one has been able to repeat even that percentage (all more recent studies have had far smaller groups). None has shown it to be a "trigger," meaning that you would not have had the eye disease without RAI.
I am sorry that your doctor railroaded you into treatment without offering the options. One of our goals is to ensure that patients find out they have options before treatment.
During the "hot phase," when your eyes are still changing, the decompression surgery may well be useless, as further changes could be triggered by the trauma to the eyes. Your doctor is right to refuse it unless your optic nerve is at risk. Once you have hit the "cold phase," decompression will definitely be an option for you, and the procedure has been used long enough that the surgeons are VERY good at what they do. You can expect a return at least NEAR what you had. Make sure your doctor knows what you looked like before ~ it’s hard to figure out, after the changes have begun.
In the meantime, protect your eyes any way you can. It may make you more comfortable to buy lightly tinted sunglasses to wear indoors, that will protect them AND hide them from people. The most troublesome part of the eye disease is what it does to our EMOTIONS, to our sense of well being.
I must run now, but please take heart. You will see improvement, one way or another.
in reply to: New to Graves and struggling with life… #1075379Nope, feel free to go for ATDs first, and if you don’t like them or other issues arise, you can stop taking them for a short period and go ahead with an RAI. The only issue is that their chemical function would keep the RAI from getting in, but once you’ve stopped taking them for a short period of time (not enough time to go hyper again), you are back where you would’ve been without them and can proceed with RAI if that’s your choice.
in reply to: It was some scary stuff…:( #1075265Hi Madame X,
You’re right, you will need to take this day by day. If it helps to know this, you may not have to have full-up doctor’s appointments once a month ~ if you can get a standing order for lab work, you can probably handle this initial phase by having blood drawn when you need to (talk with the doctor about how often that should be, and what criteria you should look for in order to go "off pattern"), and have a phone conference with either the doctor or the nurse to discuss any dose changes that may be necessary.
You have been under attack by excess thyroid hormone, and some say it can take up to six weeks just for the excess to leave your bloodstream, even though you are taking meds to reduce it, so be patient. I understand that’s difficult, given your job search, but you can at least be comforted in the fact that you have a firm diagnosis and you are under active treatment. Many Graves’ patients go much longer before finally getting the right answer. So you are on the right path. It’s a LONG path, no question. I don’t want to sugar-coat it, because that won’t do you any favors.
Take it VERY easy on yourself right now. Do not overdo physically, you will regret it. And please don’t feel as if you’re being "lazy" when you must be still. It’s all about returning your body to a healthy state. For this most difficult period, try and find the things that really fulfill you, satisfy you, at your deepest levels. (As long as that isn’t running marathons! ” title=”Very Happy” />) For some it’s hot baths, for others it’s funny movies, or painting a picture ~ I think you take my meaning. Taking care of that side of you will help you heal because it keeps you in a more balanced state overall. On the flip side of that, limit any activity that feels draining, that sucks energy from you.
Stick around, read up on Graves’ treatments (we’ve got many recommended books that you can find at your local bookstore or library), and keep asking questions! You can find some great information on old posts, too.
Welcome to the club you never wanted to join, but now you’ll never want to leave! ” title=”Very Happy” />
in reply to: New to Graves and struggling with life… #1075377Cathy, you say it all so well! ” title=”Very Happy” />
Just wanted to jump in and say that’s right ~ once we are in this disease state, we are ill, and it’s not reversible. All the stress reduction in the world won’t change that, and we need to proceed with some type of treatment. We can use stress reduction to assist, because it is always good for us to have more balance.
To Joy, I just wanted to say that continued stress has the possibility of "flicking the switch" on even more autoimmune conditions, so lessening stress is very worth it. It may save you from some future difficulties. YOU are worth it.
in reply to: eye symptoms and prednisone symptoms #1075271There are a couple of things you can do to minimize the prednisone you have to take in order to keep your symptoms at bay. One is directed radiation, which is NOT the RAI, it’s a beam of radiation directed at your orbit, in multiple sessions (a few, at least, I think). If prednisone is working to keep the swelling in your eyes down, you are probably a good candidate for radiation as well. The other possibility is intraorbital injections of steroids ~ I know, it sounds terrifying, but it’s injected in the fluid behind your eyes, not IN your eye, and it has shown a lot of success, according to one of the eye doctors who spoke at our most recent conference. It is possible that your local doctor may not have the information necessary to do the injections, I don’t think it’s all that common right now, but the radiation has been used for many years. The eye doctor who spoke of the injections specifically pointed to it as an additional treatment to use in order to use less oral steroids, and a second doctor spoke of radiation in the same way.
Besides those things, I don’t know of anything else medically that would reduce your swelling as effectively as prednisone. If your symptoms are really bad, this could save your eyesight, so take that into consideration. Also, typically the better care we take of ourselves, the better we heal, the better we feel, etc. etc. So eating right, reducing stress (can’t eliminate it, but reduce what you can), taking good care of your body overall will serve to keep you feeling the best you possibly can under difficult circumstances.
Please let us know how it’s going for you!
in reply to: What the Graves????? #1075290Welcome, May!
I’m so glad you’re feeling better! Remember, it’s going to take a while, but from now on you should be able to mark at least some kind of small improvement each and every day, so look for it, appreciate it, and yet, continue to take good care of yourself. Go easy. Your body has been through an assault, and just the massive shifts in thyroid hormone levels (even though you’re moving from an unhealthy situation to a healthier one) are stressful on your body. It’s something that takes a while, but you really sound as if you’ve got the right attitude, and you’re taking it well, one step at a time.
And you found one of the best sources of information available too (pat pat ~ ouch, my arm!).
We’re glad to have you. Feel free to ask any questions that come up!
in reply to: Post Surg – still have Graves? #1075296Hi Carla,
It’s a good question ~ you’d think the answer would be simple but (like everything else with Graves’) not so! ” title=”Very Happy” />
Turns out that the most recent wisdom indicates that Graves’ isn’t so much a "disease" as it is a "syndrome," consisting of several components. The ones we know and somewhat understand are the thyroid disease, the eye disease, and the skin condition (pretibial myxedema, they call it). There are different antibodies, from what they can tell, but the constellation of conditions seem to be fairly well connected in all of us. Some people have very little eye disease, but when examined closely, everyone shows some changes. The skin condition is much less common (it’s an itchy rash that typically appears on your shins, but sometimes manifests as swollen ankles). Once the thyroid is treated, the serious threat to our health is over, but either of the other conditions could appear, over time. Unfortunately, while most cases of eye disease appear within the first couple of years of the onset of thyroid disease, there are cases where many years separate the two. So those particular things we can look out for. Of course, the question that raises in one’s mind is ~ what else is there to this syndrome that has not yet been fully documented? "Mental fog" is mentioned quite a bit, by all of us.
Still, the fact that you had your thyroid removed doesn’t automatically mean that your thyroid hormone levels are "perfect" for you right now. Our bodies need varying levels of replacement hormone in order to feel right, and if we had the body’s natural feedback response to adjust those amounts, we would never know. The fact is that many things affect our need for thyroid hormone replacement ~ age, activity level, weight, hormonal state — referring to things like menopause — and perhaps other conditions we may be dealing with. So there are two elements to this. First, you should still be having your levels tested regularly ~ sounds like you’ve been doing that recently in investigation, so that’s good. Second, if no one has tried to help you find "your" normal, you may want to explore small changes in thyroid hormone replacement in order to see whether that helps your symptoms. Talk to your doctor about that. They have your history, which will help answer your questions.
I hope that helps ~ let me know if I left anything out.
in reply to: New to Graves and struggling with life… #1075371We have often commented that it appears we are all "Type A," one of the most common complaints is that we feel as if we’ve let everyone down because we used to "do everything." At the conference I wondered out loud whether it’s so true of all of us, or maybe just all of us who get to the conference are more like that, but I was speaking without having been on the Bulletin Board for months, so I forgot how prevalent the comment is here as well. I think there is DEFINITELY something in the connection.
And as far as stress ~ of course this is not something anyone can prove, at least not right now, but the doctors at our most recent conference said that they HAVE identified one particular "defect" that all of us with autoimmune diseases have. Now, there are people with the defect and no autoimmune disease, but everyone with an autoimmune disease has the defect. They also said that certain vulnerability in the body may suggest where the autoimmune disease will manifest, so people with chronic joint problems may end up with rheumatoid arthritis, people with chronic sinus infections may end up with Thyroid Eye Disease (not sure how our thyroid becomes vulnerable ~ I lived near Three-Mile Island at the time of the accident, so that’s my theory about myself). This would suggest that we have some kind of predisposition, and then a vulnerability in our body, and it seems that the final piece of the puzzle is some kind of stressor that "flicks the switch" ~ everyone I have spoken to about Graves’ tells me they can point to a specific stress event (or many) that preceded their symptoms appearing, so I think it’s a set of three things that play into our eventual disease.
in reply to: Is It Really Graves #1075311Absolutely Steve ~ remember, the antibodies are the thing that cause us trouble. When our immune system is stimulated from a disease we’re trying to fight off (cold, flu, infection), it stimulates all the antibodies, not just the "good" ones, and so we can experience an elevation of symptoms. (The same is true of stress, by the way, since that also stimulates the immune response.) Elevating your carbimazole sounds like a rational response. Good thing you’re well taken care of!
SO TRUE, pain in the everything, Graves’. ” title=”Very Happy” /> Keeping our sense of humor is essential….
in reply to: Is It Really Graves #1075309Hi Steve,
Second try! ” title=”Very Happy” /> My browser crashed just as I was posting a response….
You say that your thyroid hormone levels have been tested, and they are normal, so it’s appropriate that your doctor is testing for other things. Still, if the thyroid hormone level you’re looking at is TSH, it responds very slowly to changes in your thyroid hormone levels. It is the hormone released from the pituitary in response to T4/T3 levels it senses in the blood, sort of "averaged" over a few-week span. As a result, the TSH level you get today could be very different in a few weeks, if indeed your levels of active thyroid hormone (T4) are rising, so you may want to ask about having that re-done if nothing else pops up in the meantime. Get copies of those test results as well, if you don’t already. It can be very helpful to see how this month’s levels compare to last year’s ~ the normal range is HUGE, so you can be testing "normal" and yet still be experiencing a fairly steep rise in thyroid hormone levels from last time.
On ATDs (anti-thyroid drugs ~ carbimazole being the UK equivalent of methimazole in the US), our thyroid can still be vulnerable to rising levels of antibodies (they rise and fall for reasons no one understands, unfortunately), and so it is possible for the thyroid hormone level to rise and, again, cause a little havoc. I think it is helpful that you already know the symptoms, because you are actively searching for a reason and treatment quickly.
Please let us know how this works out, I know it’s frustrating when you don’t know what’s going on.
in reply to: prednisone and RAI #1075333Hi Janet,
This is a little complicated. In one study, many years ago, it was found that about 16% of patients experienced a "temporary worsening" of eye symptoms following RAI. In that same study, patients who had a short course of Prednisone before & after the RAI experienced 0% worsening in eye symptoms.
More recent studies have not been able to duplicate this result, meaning that far less patients have experienced the "temporary worsening" (which, by the way, was not well defined even in the first study, in terms of what "temporary" specifically meant, and how much "worse" the patient’s symptoms were).
Prednisone can be very risky. Several of its side effects are serious.
If your daughter is already having eye symptoms, if her eyes are significantly bulging, very uncomfortable, and if she has pain upon moving her eyes, it is likely that your doctor would recommend using Prednisone to avoid any further symptoms from making her even more uncomfortable.
If your daughter has little or no eye symptoms, you may not want to take on the risk of Prednisone against the very small likelihood that the RAI could "temporarily worsen" her eye symptoms.
It’s something to discuss very frankly with the doctor. Write down all the questions you have. Look up Prednisone in a reputable medical site so that you understand some of the pros and cons before you speak with the doctor.
in reply to: Graves" Disease and Cold Weather #1075335I do have a friend who finds she usually needs a little more replacement hormone in the winter months. We don’t have a good explanation on why, but her body responds better in winter with higher levels of thyroid hormone in her bloodstream. That’s not exactly what you’re describing ~ it sounds like your symptoms come from being too cold ~ so I’m not sure that applies.
It’s tough not to pin all of our unusual symptoms on Graves’ after it’s come on (for so many reasons, not the least of which is that the symptoms are all over the map for different people), but that may not be the root of the problem. It’d be a good idea to talk with your doctor about this, and don’t let them say "oh, it’s not your thyroid, go home." Follow that up with "something is not right, and I need your help to find out what it is. Can you think of anything else we should test for, or another doctor you can refer me to?"
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