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Viewing 15 posts - 571 through 585 (of 1,548 total)
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  • Ski
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    Post count: 1569
    in reply to: Confused #1066959

    The lab reports are most helpful when you relate them to each other, and to your symptoms, so just get them, and keep them, and keep learning about what’s going on, then you can paint the whole picture for your own treatment. It’s all because no one cares as much about our health as WE do, so it’s important that we have all the information possible.

    Ski
    Participant
    Post count: 1569

    Unfortunately, there is no way to predict when or if we will end up with severe TED symptoms. The thyroid treatments do not affect your chances of getting TED. For the most part, people get their symptoms within a year of thyroid symptoms, but there are patients who have fallen outside those parameters, so there’s just no guarantee. The bottom line is that your decision of thyroid treatment doesn’t affect your chances of TED, but only a small percentage of patients end up with the very worst TED symptoms anyway.

    You do need to be comfortable with your treatment choice, and all are valid, so just make sure you’ve done your research and you know all the details, then make sure you are keeping your thyroid hormone levels managed properly, and that way you can minimize other issues related to thyroid treatment.

    Ski
    Participant
    Post count: 1569

    I wear contact lenses, and I’ve had RAI twice. I do think my eyes are a little more dry than most people’s, but that doesn’t have anything to do with the RAI, it has to do with the autoimmune disease in general. Our tears are thinner, so they don’t moisturize as well. As long as I keep artificial tears nearby, I’m fine ~ and I do not need them every single day, sometimes not even every week. I can’t wear the contact lenses for as much time as I did before, but they’re good for a 10-hour day, easily.

    RAI does not cause TED. It can stimulate the antibodies and lead to a brief increase in symptoms, but if you haven’t had severe TED symptoms, it won’t begin that process from scratch. My symptoms of grittiness and general discomfort abated after about 90 days, and didn’t occur at all after the second RAI. I’ve never had severe TED symptoms throughout my disease, treatment or healing process, and my first hyperthyroid blood test was in 1999.

    Ski
    Participant
    Post count: 1569

    Look at doctors affiliated with this organization [url:1n4kl63o]http://www.asoprs.org[/url:1n4kl63o]. They have specific training that’s helpful to TED [Thyroid Eye Disease] patients (by the way, TED is the same thing as GED, just a new name since patients can have it without having Graves’ thyroid disease).

    Ski
    Participant
    Post count: 1569

    I wish I could say ~ it’d be so much easier if everything followed a consistent pattern with everyone. Pretty sure a protein lunch wouldn’t have affected your labs though. <img decoding=” title=”Very Happy” /> Always best to be safe, there’s a lot to lose if we move too quickly, so take it easy and know you ARE getting there. Tiny steps right now, but you are definitely getting there!

    Ski
    Participant
    Post count: 1569

    If you’re hyper, it’s still possible to get out-of-control arrhythmias that could be dangerous. If you feel you would like to start exercising, talk with your doctor first, get a physical therapist to evaluate your current condition (you may have lost more muscle mass than you think), and start SLOW. Stretching and walking can be okay, but always get the okay from your doctor first.

    Ski
    Participant
    Post count: 1569

    There should be present medical reasons to do OD surgery, so you would not want to do a surgery on the eye that is not affected at this point. Surgery is always the last resort, and there’s no such thing as a "pre-emptive strike," you really need to just deal with what IS. It’s possible the other eye will never develop these kinds of symptoms, just so you know. Many people end up with TED in just one eye.

    It’d be good to know if you’re in the hot phase or not, but the bottom line is that optic nerve involvement (the change in color vision is usually the first symptom of that) MUST be corrected, hot phase or not, or you may well lose all vision in that eye. The optic nerve (we found out at our conference in October) is not really a nerve at all, it’s brain tissue that extends into the orbital cavity. You cannot regenerate it, once it’s been destroyed, so saving it is incredibly important.

    I’m so glad you’re feeling comfortable about the procedure! It’s CERTAINLY got a good history, and in good hands you’ll be just fine. More people who’ve had the surgery will weigh in, I’m sure.

    Best of luck to you!!

    Ski
    Participant
    Post count: 1569

    Here are two responses from members of our medical board of advisors on this topic:

    "This is absolutely untrue. There are rare patients with ‘Struma ovarii’: thyroid hormone in an ovarian tumor. But beyond that (and rare patients with metastatic follicular thyroid cancer), the thyroid gland itself is the only source of thyroid hormone. I can’t speculate about what happened to her specifically other than residual thyroid tissue or an error in the prescription or intentional over replacement."

    and the other:

    "This lady was simply taking too much Synthroid/thyroid hormone and her problem was solved by reducing her dosage I assume.

    And, yes, I can’t find the reference but I think there is an article out there somewhere about a small cell CA of the lung producing TSH causing hyperthyroidism. Not a problem this person has, thank Gawd. They don’t do very well.

    And, yes, Graves’ can come back despite the treatment – surgery, drugs and/or RAI. I’ve seen it all. The last lady I recall had near-total thyroidectomy and was stable on Synthroid for 20 years. She developed hyper symptoms and stopping Synthroid didn’t help. Scan and uptake showed the little bit of thyroid left after surgery had decided to get hot. Pretty cool. I gave her some RAI and solved the problem, maybe."

    I do hope that helps.

    Ski
    Participant
    Post count: 1569

    Can you get a ride from a co-worker or someone else? I’m not sure how you go about getting a written request for an accommodation, but I’d think it’d have to come from an eye doctor who could verify that your vision is diminished in the dark. Then you need to make note of the fact that your department of motor vehicles may well be notified in the event that this is in your medical record, and you might get a driver’s license that restricts your driving in some way as a result. If you can get a ride from a co-worker or a relative in order to make your later shifts, that might work for now at least. Is there a possibility of using public transit for some portion of the trip? For the most part, I’m just asking because I think those will be your employer’s questions as well. At this time of year, with so little daylight normally, it can be tough to schedule every one of your shifts within that window, I’ll bet.

    Ski
    Participant
    Post count: 1569

    I’ve learned a lot about Graves’ Disease in the past 10 years, but this is something I’ve never heard, not at a conference, not in any kind of literature. If you were taking too much Synthroid, you’d go hyperthyroid, whether your thyroid is functioning or not. Too much is too much, and it would take weeks before your thyroid hormone levels changed dramatically, even if you stopped Synthroid completely. If there were other glands in the body producing thyroid hormone, we’d have heard of it, but I will send a note to make sure our medical advisor is asked about this specifically, and we’ll post the answer.

    Our need for thyroid hormone changes over the course of our lives, and so you may have just gone a little more hyper all the time until you were toxic again. I hesitate to say that other glands produce thyroid hormone without having some sort of evidence.

    I’m so glad you’re feeling better now!

    Ski
    Participant
    Post count: 1569
    in reply to: Hyper after RAI #1067177

    We’re all different (changes happen at different times), but it’s a good thing that you know your status and your norm. The beta blockers can be stopped as your symptoms decrease, but they need to be stopped gradually, or else you’ll experience a "rubber band" effect, where the symptoms you’ve been suppressing will come back "harder," all at once. We take extremely small doses (compared to a "real" heart disease patient), so the weaning-off period is typically very brief, but speak with your doctor about the best way to reduce your dosage safely. Let them know your new heart rate results, and discuss from there.

    Ski
    Participant
    Post count: 1569

    They would have been measuring the proptosis (how much the eyes come forward) ~ "normal" is different for most people, so it’s best to know where you started and then you can see what’s changing. RAI does have the potential to stimulate the antibodies that affect the tissues behind the eyes, so it’s a good thing they’re watching carefully. Personally, I had a little "flare" of TED symptoms for a few months after RAI, but they subsided.

    Ski
    Participant
    Post count: 1569

    When you’re logged in to the bulletin board, you should see, on the screen under the Board Index header in green, another green banner below it that says "User Control Panel," followed by the text (1 new messages). Just hover over that text and it’ll turn a different color, then click and it’ll open your private mail box so you can see your messages.

    Ski
    Participant
    Post count: 1569

    Hi Susan,

    I just sent you a private message with some details ~ the bottom line is that doctors have varying levels of precautions, because they each have different opinions about what is necessary, and some of us had RAI when precautions were extremely strict, others not so, and in addition to that, the dose you’re given can change some doctors’ opinions over the precautions that are necessary. I sent you the text from a former message of mine (not sure how to link it here, something I really must learn) that gives you the overall reasons for the precautions, so you can discuss the entire thing with your doctor and decide what you are comfortable with.

    Ski
    Participant
    Post count: 1569

    It can take quite a while to go hypo after RAI, and you can’t say for a certain fact that it hasn’t done its job for at least six months. Also remember that the antibodies themselves cause damage to the thyroid, so while the RAI is working and the antibodies exist, your thyroid is actually getting something of a double whammy toward destruction, and even after the RAI is incapable of causing any more changes (at the six month mark, typically), the antibodies can continue to destroy the thyroid, so even if the RAI didn’t do QUITE enough to make you hypothyroid, there’s no particular reason to rush into a second RAI right away. You still may see hypothyroid without it.

Viewing 15 posts - 571 through 585 (of 1,548 total)