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  • Ski
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    Post count: 1569
    in reply to: EYE QUESTION #1067145

    Hi Susan,

    I was just cleaning up my notes from our conference in October, and I saw that most patients exhibit their TED symptoms within 36 months of presenting with thyroid disease. That’s not true 100% of the time, but for the most part that’s what happens. RAI has not been shown to cause TED, but in some patients it can worsen their symptoms, possibly due to increased immune activity in the first few months afterward. If you have not exhibited symptoms to date, RAI should not be a concern in terms of bringing on TED symptoms. You may find some period of gritty-feeling, dry eyes, but it’s extremely uncommon for severe TED to appear this late in the game. You may want to consult with an ophthalmologist who has experience with TED patients ahead of time, as final confirmation of what you’ve heard elsewhere.

    Ski
    Participant
    Post count: 1569

    Hang in there, you’ll get there ~ you’re closer than ever, having SOME form of treatment, and at least knowing what you’re dealing with. Try and look for the small blessings, and they’ll get bigger. Promise. <img decoding=” title=”Very Happy” />

    Ski
    Participant
    Post count: 1569

    We always recommend that you see an ophthalmologist affiliated with ASOPRS (website http://www.asoprs.org), as a basic starting point.

    The doctors at this year’s conference did talk about fatty decompression vs. bony decompression, and also the types of bony decompression (meaning which walls are involved). The specific walls involved in your surgery should be tailored to your precise issues ~ patients suffer swelling in different eye muscles, so you’d need to remove bone where it’ll do the most good FOR YOU. There is no "standard" that every patient can follow and be successful. I don’t have my notes right here, but I do remember that involving certain specific walls can increase your chances of double vision afterward, so make sure to ask about that.

    The first rule, we were told, is that every patient presents an entirely new set of circumstances, and each needs to be evaluated individually, down to the most minute detail.

    I’m not sure what we would refer to as a "high" rate of orbital decompression surgeries, but I know that asking your questions and comparing the answers you get will help you to find the surgeon you feel most comfortable with. I would add one question: what is your complication rate? Any doctor who will not answer that question or elaborate on the details is one beside whose name I would put a big red question mark. Not a "no way," but it’s something to consider, if they’re not willing to be open about complication rates in their prior patients.

    Best of luck with your search ~ you’re doing the right thing, research is key to a successful result!

    Ski
    Participant
    Post count: 1569

    Just a couple of comments ~ as I browsed the most recent posts, these thoughts stood out:

    The point of steroids is to keep the swelling down, and while they do definitely have serious potential side effects, they can also save the vision of someone who is in danger of losing sight due to the compression of the optic nerve. Once that nerve is compressed, there is no going back, your sight is lost forever. That’s a very rare occurrence, and most patients do not have that concern. It’s a discussion you need to have with your doctor when the time is right. Typically steroids have been reserved for the people with the most severe symptoms precisely for this reason. They are definitely a temporizing measure, they only help as long as you are taking them, and you can usually expect the swelling to return once you stop, so that’s another piece of the discussion, but the possibility exists that they can actually shorten the disease curve in the hot phase.

    Recently, doctors have begun using targeted radiation in addition to steroids, in order to limit the amount of each treatment you require in order to keep the swelling down ~ which also limits the side effects of either treatment.

    In addition to that, there is a new treatment philosophy developing in which the goal is to keep all swelling down as much as possible during the hot phase, because then there is less scarring and damage in the aftermath, thus less to correct and less reason for surgical interventions later on.

    There are also several ways to deliver steroids, some of which have less side effects. There are oral steroids, IV/pulse steroids, and injections of steroids into the fluids behind the eye. Each have their own pros and cons (don’t we ALWAYS get that?), so again, part of the discussion to have.

    Once the surgeries have begun, it can be difficult to return your eyes to what you remember as normal, but I’ve seen a lot of post-surgical patients, and they look GOOD. We have to remember that we are dealing with incredibly small margins, incredibly minute details, in order to return our eyes to what they once were. If your doctor has a "before" picture of you (from LONG before your TED symptoms), you’ll have a better chance of getting there, because they have no way to tell where you started, once the swelling has begun.

    I hope that helps some!

    Ski
    Participant
    Post count: 1569

    Doctors have differing opinions on these restrictions ~ the most antiquated rules require a lot more restrictions, the more recently adopted guidelines require far less. The most basic information I can give you is this ~ the basis for the restrictions are two-fold.

    First, whatever amount of RAI you take, a certain percentage of that will NOT be taken up into the thyroid. That fraction of your initial dose is flushed out of the body in the first 48 hours, through your fluid waste channels, primarily urine, but also a small bit in your saliva and sweat. In order to limit anyone else’s exposure to this small fraction of a fraction of the RAI dose, typical instructions for the first 48 hours specifically restrict others from contact with things you touch and eat, and recommends lots of fluids and frequent urination in order to flush out the RAI remainder as quickly as possible. Typically it is preferable to use a separate bathroom for those first two days as well, but at least to flush a couple of times after each visit to the bathroom.

    In addition to this phenomenon, there is the radiation that emanates from your thyroid as the RAI dose concentrates there (as much as remains in your system). In order to make these percentages "real," just pretend you have a 10 millicurie dose, with a 75% uptake. That means 7.5 millicuries (75%) of the initial dose will concentrate in your thyroid. The remainder, 2.5 millicuries, is the amount that will be flushed out of your system in the first two days.

    For the remaining, concentrated RAI dose in your thyroid, you need to limit consistent contact with that part of your body to other people for a while. The issue is radiation exposure. Radiation exposure is a lifelong, cumulative thing, and overall the idea is to limit others from exposure that is not necessary to them. This is why the x-ray technician stands behind a wall. It’s just the idea that we’d like to minimize that exposure to other beings as much as possible. The RAI you take has a half-life of 8 days, meaning that each 8 days that pass reduce the amount of radiation by half. So 8 days after your initial dose, using the example above, half of 7.5 millicuries would remain. 8 days later, half of that, and so on. The impact of this is that, at first, you need to limit the exposure by other people to your neck, and over time you can relax those limits. My doctor explained it this way: if I needed to be very near someone, I should make sure it was a short period of time. If I needed to be with someone for a long period of time, I should keep my distance. I’m not sure what distances relate to which level of dose. You should ask the dosing doctor for these specific measurements to go with your specific dose and uptake. My understanding is that children and smaller pets should be particularly protected during the initial period of time, because a smaller body experiences a larger impact from radiation exposure over time.

    I hope this helps! Mostly, you need to ask your doctor, and then do what you feel comfortable with. If you worry about touching things in the first couple of days, use gardening gloves with the beads on the fingertips so you can manipulate things easily. I used a new pair each day for three days (uber-cautious, that’s me). In addition to that, if you are advised to use disposable plates and utensils (many people are no longer urged to do that, since the RAI is extremely water-soluble and the traces that may remain on plates and utensils can be safely washed away by washing well, and washing twice), remember to get disposable bowls! I almost forgot, I would’ve been miserable without a way to eat soup. <img decoding=” title=”Very Happy” />

    Ski
    Participant
    Post count: 1569

    Having orbital decompression to look normal after TED is *NOT* having the surgery for "cosmetic reasons." It is still for a medical purpose, because the defect is due to a disease state, and correction does more than make you feel good, it enables your eye to function correctly (excessive dryness due to proptosis causes issues, etc.). Many patients have had difficulty when their doctor’s office codes the procedure as "cosmetic." It is NOT cosmetic, and should not be coded that way when the procedure is ordered, else your insurance coverage may be patchy, and you may have to go back again and again to fight for payments. Make CERTAIN your doctor’s office knows the right way to code the procedure so that your surgery is covered.

    Ski
    Participant
    Post count: 1569

    Hi Elise,

    I’m not sure about this ~ the pseudo-ephedrine is what we’re typically recommended to avoid, precisely because of what you say (making us even more edgy). I hope you can find a pharmacist to guide you before your flight. If the point of taking the sudafed is its decongestant, then Chlor Trimeton is a decongestant without ephedrine, and it may work just as well for your purposes. I hope everything works out well for you during the flight!

    Ski
    Participant
    Post count: 1569

    If you’re not taking ATDs, then your thyroid hormone levels would not be under control ~ the other meds you’re taking target symptoms, but they do not address the imbalance in your thyroid hormone levels. Talk with your doctor about how you’re feeling and see what they have to say.

    Ski
    Participant
    Post count: 1569

    All of our treatment options have their pros and cons. The medication, IF it causes difficulty, can be stopped and the complications will reverse. In the meantime, it is very much an advantage to go into RAI with normal thyroid hormone levels ~ that way, if you experience the "dumping" effect (not all patients do), the overall effect will be less. If you begin with relatively normal thyroid hormone levels, the dumping can only elevate your thyroid hormone levels so much. That may be the reason behind your doctor’s desire to lower your thyroid hormone levels prior to RAI.

    STILL, the happiest patients are the best informed patients, so do all of your research into all three potential treatments (ATDs, RAI, or surgery) before making an absolutely final decision. In the meantime, it’s typically recommended that we at least try methimazole in order to bring our thyroid hormone levels down and give us a chance to begin healing and thinking straight again. It’s impossible to understand how wacky our thought processes are until they’ve gone back to normal….

    Ski
    Participant
    Post count: 1569
    in reply to: Eye Disease #1069732

    As long as you’re seeing an ophthalmologist, you ought to be in good hands. Just a quick comment ~ when your vision is fluctuating, it’s possible that the issue is simply dryness. The extra tearing of your eyes is another clue ~ when our eyes are chronically dry, they keep trying to correct the situation with more tears, which may not do the job (when we have Graves’, our tears are insufficient to keep our eyes moist). Try using preservative-free "artificial tears" (NOT get-the-red-out drops) ~ they are eye drops in "single serving" tubes, and you can use them as often as you feel they are necessary without issue (that’s why we use preservative free). Using them often, you may feel better within a day or two.

    Ski
    Participant
    Post count: 1569

    Hi Lerina,

    Firstly, we aren’t the people to decide which surgery you need ~ we can give you some basic guidelines (for example, if you’re going to have to do all the surgeries, you need to do them in this order: first decompression, second eye muscle surgery, last eyelid surgery), but in addition to that, a picture wouldn’t even give a qualified physician a good idea of what surgery you need. They’d need scans and physical examinations to determine where your issues lie and how best to correct them. The appearance can be created by many variations of dysfunction, so you need to see an ophthalmologist (preferably one that is associated with ASOPRS, here’s the link [url:sdsrwap0]http://www.asoprs.org[/url:sdsrwap0]), and ask them how best to proceed.

    Ski
    Participant
    Post count: 1569

    The most interesting thing we learned at the latest conference was that Graves’ Disease is the most common autoimmune disease there is ~ as a family, autoimmune diseases are more prevalent than many "well known" diseases, but because there are so many different autoimmune diseases, it dilutes the attention of the scientific community. As a result, there is a LOT we do not know about how these diseases are triggered. We can have all kinds of suspicions, but the facts are very difficult to find.

    Ski
    Participant
    Post count: 1569

    Let me echo Peter’s sentiment ~ welcome, James! Glad to see your name in green!!

    Ski
    Participant
    Post count: 1569

    It’s going to be tough to know how you’ll feel on any given day for the next few weeks, so my advice would be to book yourself very gently during this time. Leave yourself windows for rest, in case you need it, so that you don’t feel as if you’re "neglecting" your commitments.

    Not a lot is likely to change in a BIG hurry, but things should get progressively better.

    I had EXTREME abdominal pain for a few days, and no one could ever get to the bottom of it, so I’ve always blamed it on the rapid drop in my thyroid hormone levels (though that may have had nothing to do with it). Whatever happens to you in the next few weeks, if some symptom is extreme, check with the doctor (general practitioner or endo, whomever you can reach). Don’t presume "it’ll pass," because you just can’t say that without a professional exam.

    Wishing you luck! Let us know how it’s going!

    Ski
    Participant
    Post count: 1569

    Hi Sharona,

    First let me put you at ease about replacement hormone ~ the replacement hormone itself is chemically identical to that which everybody’s thyroid secretes on its own, so it’s literally impossible to be allergic to replacement hormone. SOME people have reactions to the substances that certain companies use to bind that thyroid hormone and make it into a pill, so if that’s an issue for you, you can either change between the typical brands to find one you do not react to, or you can take the one with NO additives, so no chance of any issue.

    That being said, the hives are an allergic reaction, but we have heard that it is not always a dangerous allergic reaction. Some doctors have begun either lowering the dose or using prescription strength Benadryl until you are at a level of "tolerance" with methimazole. Typically the maintenance dose (after you get your levels into the normal range) is very small, and most people tolerate that well, even if they’ve had this initial allergic reaction. It used to be thought that any allergic reaction was potentially very dangerous ~ and of course that’s true ~ but the conventional wisdom was that the reaction would always get worse, and that has not been proven out in practice. So methimazole may still be a treatment option, if you’re willing to fight for it and give it another shot.

    As long as you begin treatment and pursue normal thyroid hormone levels, you shouldn’t get much worse. It takes TIME. Patience is essential. But you will definitely (eventually) heal. The eye disease is another conversation (as you probably know), but as far as the thyroid hormone issue goes, once you know what it is, and you are TREATED, things get a little better all the time.

Viewing 15 posts - 601 through 615 (of 1,548 total)