Forum Replies Created

Viewing 15 posts - 721 through 735 (of 1,548 total)
  • Author
    Posts
  • Ski
    Participant
    Post count: 1569
    in reply to: confirmed graves #1068304

    Sadly, too many patients experience exactly this kind of treatment. One of our goals is to find those patients and "school ’em" before they’re forced into a treatment they may not have chosen (given the options), but unfortunately too many people are programmed to accept what the doctor says and do it. Lucky for you, you’ve been doing your research, and you know you have choices!

    At this point, you have a confirmed diagnosis, so YOU know the choices of treatment, and YOU can direct things from here on out. If I were you, I’d be in the process of finding a new doctor, but in the meantime hopefully you can use this one to help you start along the road you’d prefer for treatment. Just tell the doctor that you know you have choices, and you’ve decided to XXX (whatever you’ve chosen). If it’s ATDs, then you need him to prescribe one. If it’s surgery, then you’d appreciate a suggestion for a thyroid surgeon. If you have chosen RAI as your preferred treatment, go for it through this doctor. The after care can easily be handled with your NEW endo, once you find them. Keep in mind that endocrinologists are ALL very busy doctors, and if they haven’t had much experience with Graves’ patients, they do NOT know the mistake they make by trying to railroad us. Probably won’t make it twice. <img decoding=” title=”Very Happy” />

    Ski
    Participant
    Post count: 1569
    in reply to: Now My Eyes! #1068363

    The only way to know for sure is to go to your ophthalmologist ~ if you suspect that it may be TED, an ophthalmologist is really your ONLY choice, opticians only deal with prescription glasses, not eye disease.

    Ski
    Participant
    Post count: 1569
    in reply to: Eye Masks #1068929

    Just a quick FYI ~ the eye masks are not intended to "keep the eyes from bulging," that’s not something you can control with an eye mask. The purpose behind the eye masks is to protect the cornea if either or both eyes do not close all the way while you sleep ~ the intention is to do something to make SURE the eye is covered. Typically it’s not just the eye mask, if that’s the issue ~ you would also need something between the eye and the mask, because any type of fabric can be abrasive.

    Ski
    Participant
    Post count: 1569
    in reply to: UP UP and AWAY! #1068338

    I guess it did work! <img decoding=” title=”Very Happy” /> Congratulations, one more step toward health!!

    Ski
    Participant
    Post count: 1569

    Hi Julie,

    We know how you feel, believe me! Just as an FYI ~ low-dosing was originally thought to be a possibility for retaining "normal" thyroid function, but it has been abandoned due to failure rates. I am an example myself ~ my doctor and I agreed that I wanted an ablative dose, but the dosing doctor was not informed of this decision, and he still thought a low dose could work (this was more than ten years ago, by the way). As a result, I spent literally YEARS unwell until I was willing to throw in the towel and do a second RAI to bring me back to true health.

    The bottom line is that any thyroid tissue remaining active can react to the antibodies and cause either hyperthyroidism or fluctuations in thyroid hormone levels that make it more difficult to get regulated following the RAI treatment. In addition to that, a low dose has the potential to damage, but not destroy, thyroid tissue, which can be a risk all in itself. You don’t want to leave damaged cells functioning in any way, they’re unpredictable and other issues can arise.

    Ski
    Participant
    Post count: 1569
    in reply to: Now My Eyes! #1068359

    You may be able to deal with the double vision by using patches over one eye ~ prisms are more difficult to use when your eyes are still fluctuating. You can get "stick-on" prisms so they can be easily changed (as opposed to "ground-into-the-lens" prisms), but it’s just as frustrating to get up in the morning and see that the prisms that worked yesterday no longer work this morning.

    If you patch one eye, the double vision will be gone so you can function. The doubling comes from one muscle in one eye being swollen and then the eyes don’t track together any more. Make sure you switch the patch from eye to eye periodically so one doesn’t get weak from non-use. Discuss this with your ophthalmologist so you do it the best possible way.

    It’s all very true, TED needs to run its course before you can have surgery, but in the meantime there are things you can do to help you function. In many cases, the eyes return almost to normal when TED is done, but typically there is at least a little scar tissue left behind, so we can’t necessarily expect absolute normal. Just hope for the best, and try not to stress TOO much over it, because stress leads to antibody activity, and that can end up making things worse. I know the up/down double vision is the WORST, it’s the toughest one to deal with, according to the ophthalmologists I’ve heard speak on the topic. Anything you can do to relieve the symptoms and function will be worth it.

    Just as general info for others perusing this thread ~ Graves’ thyroid disease is a separate, but related, condition. Thyroid Eye Disease (TED) can happen prior to the thyroid disease, concurrent with the thyroid disease, or after the thyroid disease (or not at all!). Treatment for one does nothing to help the other.

    Ski
    Participant
    Post count: 1569
    in reply to: EYES #1068380

    I would agree with both responses you’ve gotten ~ do make an appointment with an ophthalmologist (if the eye exam you spoke of was not with an ophthalmologist), and also pay particular attention to getting the lubrication your eyes need. I think that’s a function of all autoimmune diseases, though don’t quote me on that, it may be just thyroid disease ~ our tears get less viscous, and do not provide the moisture that our eyes really need to work right. If your eyes are constantly producing tears, that’s actually a clue they are dry ~ they keep producing tears to moisturize, which don’t moisturize enough, so more tears come.

    I had about a year or two where I kept going back to my eye doctor, complaining that my newest contact lenses were defective, I could see with the last pair, now the new pair didn’t work right, and he kept telling me that he was amazed I was "so sensitive" to the tiniest change in my prescription. Sadly, I discovered later that he was just patting me on the back and giving me a new pair at the same prescription (do NOT ask how that got past me), but once I found my NEW eye doctor, I was finally told that significant levels of dryness in your eye can actually change your prescription by one (or two) points. Paying a lot of attention to using artificial tears can really help keep your vision steady.

    My personal advice would be to get some preservative-free artificial tears (NOT get-the-red-out drops), and use them liberally. When you’re on the computer, every 15 minutes is NOT too often ~ when you’re doing other things that don’t necessarily stress your eyes, you can probably use them far less. Use them for a few days to see if your issues begin to resolve. If not, pursue the ophthalmologist appointment to make sure that something more serious isn’t going on. Your sight is important, and with your history on ALL of this, I’d think "better safe than sorry." <img decoding=” title=”Very Happy” />

    Ski
    Participant
    Post count: 1569

    Remember that as your immune system is stimulated to help you fight off the cold, the antibodies of Graves’ and TED are also stimulated, so symptoms may escalate just because that part of your body is VERY busy right now. Take it easy.

    Ski
    Participant
    Post count: 1569
    in reply to: mood worse #1068413

    If your levels are normal, and they’ve remained stable for at least a few months, then mood issues SHOULD be getting better. Sometimes, though, our doctors are not nearly careful enough to notice this. They look at the results of a blood test and the box is checked that says "within range," and they shut off their brain and say "everything’s fine, must be something else." You should take a look at all of your test results and see how they relate to each other ~ if they have not been stabilized at one particular point, then perhaps the meds are not the best avenue for you, or perhaps you need to find a doctor who will help you manage them more carefully (even an internal med doctor, with some experience, can help with this ~ it doesn’t have to be an endocrinologist if they are hard to find for you locally). "Normal" is relative, as well ~ for some people the best "normal" is at a different place along the normal scale, so it’s important to find YOUR best normal point in order to feel your best. Again, it’s worth travelling if you must, in order to find a doctor that will help you feel truly WELL.

    Ski
    Participant
    Post count: 1569
    in reply to: PTU? #1069822

    The antibodies rise and fall for reasons no one understands ~ PTU doesn’t affect them, it just affects the way the thyroid reacts (or doesn’t react), so you don’t stay hyper. The fluctuation in your antibodies is still important to know ~ I understand that, if you were at a point where you may want to consider going off the med and seeing if you’ve achieved "remission" (usually 1-2 years out), you’d want those antibody levels to be low in order to maximize your potential for a successful remission ~ but you don’t adjust your meds in relationship to the antibodies.

    Good thing they’re keeping an eye on your thyroid hormone levels ~ right now your dose may go up & down a bit, but ultimately you should be zeroing in on a dose that keeps you "normal." Good luck with that!!!

    Ski
    Participant
    Post count: 1569

    In the end, the only answer I can give about the choices of treatment is that you need to look carefully at all of the options and decide for yourself which treatment is best. Each treatment can lead you back to health, but I find that informed patients who have made a decision within themselves about the treatment have far better outcomes. Perhaps it’s just the empowerment that comes with having decided ourselves, or perhaps it’s the comfort level we have with our treatment choice, or perhaps it’s because we know EXACTLY what to expect and what to look for. In any event, it’s always best to make the choice yourself. Don’t let anyone else decide for you. Learn about all three and decide for yourself. You can use ATDs to bring your thyroid hormone levels down and enable you to make a choice, since ATDs are the only choice that can be "undone," and also, bringing your thyroid hormone levels down will help you think more clearly.

    It’s true that if you use ATDs, you have a slight chance of escalating symptoms when you become ill from other sources, and also if your stress levels rise. Still, many people have successful remission periods with no symptoms whatsoever, even during those periods of time, and they also learn how to be more "gentle" on their bodies in general to avoid symptoms, so you shouldn’t let the possibility of symptoms dictate your choice of treatment.

    Ski
    Participant
    Post count: 1569

    One more thing ~ YES, you can work while you’re undergoing the uptake/scan. They use a very small amount of a non-damaging isotope, you won’t feel any different and you won’t be "dangerous" to anyone else.

    Ski
    Participant
    Post count: 1569

    You do need the results of an uptake/scan at least to get a confirmed Graves’ diagnosis ~ one more thing, the doctor does not appear to have let you in on the fact that you have THREE treatment options, in the event it IS Graves’. By the way, once you’re hyperthyroid, the vast majority of patients turn out to have Graves’, but it is true that there are other reasons to be hyperthyroid, so don’t necessarily make that leap yet.

    Still, YOU are the one who gets to choose what treatment you’d like to have for Graves’. There is RAI (sounds like that’s where the doctor is pointing you), ATDs (anti-thyroid drugs), and thyroidectomy (surgical removal of the thyroid). While it’s very common for the doctor to say to themselves "RAI is easier," and then tell you "RAI is what we’ll be doing," it is not fair to you to make that decision without fully informing you of your choices. Please do some research in the interim and try to make your OWN decision.

    Ski
    Participant
    Post count: 1569
    in reply to: PTU? #1069819

    When your T4 is dropping, that’s an indication you’re either coming back into normal range OR going hypo (depends on how low it drops). TSH can take weeks to catch up and show a true "balanced" answer ~ once we’re stabilized, TSH is the best possible marker, but while levels are fluctuating a lot, TSH isn’t always the best thing to judge by. T3 can fluctuate even within hours, so it’s not necessarily critical in terms of figuring out where you are. If it’s chronically high or low, that’s something to consider, but it’s usually not the first thing the doctor wants to see in order to evaluate what’s up.

    Ski
    Participant
    Post count: 1569
    in reply to: Cancer #1068472

    I echo all the sentiments ~ it’s a tough word to hear, so I hope you’re doing okay. Survival rates are extremely high, the ThyCa website is a really good resource, and we’ll be here for you too (we don’t mind that it didn’t turn out to be Graves’, we love you anyway). <img decoding=” title=”Wink” />

Viewing 15 posts - 721 through 735 (of 1,548 total)