[Ski]

in reply to: One year from RAI #1065516

T4 above normal should be addressed, definitely. Talk with your doctor ~ I’m sure they’ll have some opinions based on how much above normal it is, but consult at least for now, and make sure to test again when the doctor suggests you have it done.

[Ski]

in reply to: I’m Post OD – Day 5…Pls Share your Comments #1065408

Sounds like you’re doing pretty well, considering how soon it is, and I’m so glad to see you here posting about it ~ pain level is SO personal, as long as you feel your pain is managed by what the doctors have given you, I’m sure it’s okay to stay on the regimen, and please don’t refer to yourself as a wimp! No fair, you listen to you, you know, no one should talk about you like that. ” title=”Wink” /> It would seem that you’re doing everything right, so (as always with GD and TED), patience, patience, patience. As I used to tell my kids when we were on road trips, "closer every minute!" ” title=”Very Happy” />

You’ve been on a long, difficult road, and you’re nearing some real relief, so try to look ahead and you’ll find it easier to get through today. We’re here, thinking of you!!

[Ski]

in reply to: OCTOBER CONFERENCE DATES, QUESTIONS #1065414

Typically the event begins with a reception on Thursday night, we have sessions and meals Friday and Saturday, a banquet Saturday night, then some early sessions Sunday, breaking up after lunch. I am not involved in this year’s planning, but that may help you decide on flights and hotel nights. Factor in your change of time zone, if that applies to you ~ the sessions are really interesting, and I never want to miss a thing, but that means I’m busy all day long both Friday and Saturday. You would want to feel good for that, to get the most you can out of it. Typically there are some people either arriving a little early or staying a little late, so they can see some of the area, and occasionally there are organized events offsite just for entertainment, or casual groups of people connect during the conference and plan something for Sunday afternoon.

I hope that helps!

[Ski]

in reply to: Just diagnosed with Graves #1065433

You’ve hit it right on the nose ~ that’s our biggest challenge. How can we serve the patients who don’t know what they have? Or, like you, those who have some idea, but can’t get anyone to listen? We also suffer from the perception some doctors have, that everything on the internet is bad info ~ so they hear us say that we’ve "done some research" and they shut down. And one more issue is that not everyone who has "our" symptoms has Graves’ ~ that’s why it can be so hard to convince a doctor that this is what we’re dealing with. Its symptoms mimic many other conditions, and for some reason there’s an odd hesitation to running one little blood test to see. It’s not even an expensive test! Unfortunately, that’s the rule, in the stories I’ve heard, rather than the exception. Most of us have had at least one "brush off" before someone listens to us, others many MANY more, spanning a great deal of time. It can indeed be incredibly debilitating, when it goes on for a long time.

At any rate ~ we’re glad you found us, and I’m sorry you need to go through this, but you’ve found a good source for info and support. Welcome.

[Ski]

in reply to: new to GD/probably electing surgery/looking for support #1065454

Remember that we have basically two populations here on the Bulletin Board: those who are newly diagnosed, and those who have had an unusual amount of difficulty. That means the posts you find here can be skewed toward illness, rather than successful treatment. I mean, how many people would seek out a support board to say that they had a great treatment, all went well and they feel fine? I’m sure you see what I mean. So definitely don’t try to use the percentage of complications with patients on this board to try and make some sort of guess as to how common those difficulties are in the overall patient population. Ask your doctor or find good studies ~ the treatments we use have been in use, and carefully studied, for a very long time. RAI, more than 60 years. ATDs are a little more recent, but we still have some very good, longterm info. TT has been done the longest. So there are some really good empirical studies on each. The fact that each of these treatments may have a downside is not in question, so the fact that someone can say there’s a CHANCE of a bad outcome simply cannot remove that treatment as an option. We do not have an absolutely perfect option, that’s just the way it is. Right now, since you’re using ATDs and finding some relief, give yourself a moment to let the whole thing settle in, do your research, and I think by the time your appointments come up, you’ll have reached a decision you’re happy with. If not, you can also move the appointments out, probably without much fanfare.

[Ski]

in reply to: new to GD/probably electing surgery/looking for support #1065450

We have actually addressed the possibility of voice issues quite a bit, along with the possibility of losing or damaging the parathyroid glands (which affect the body’s calcium levels) ~ but as Shirley says, the bottom line is that an experienced surgeon who has a low complication rate is your best defense against any of these issues. I understand there is a device they can attach to your vocal cords during surgery to "warn" the surgeon that they may be coming too close, but I don’t know much about it. Our conference docs have consistently told us that getting a surgeon who does THIS specific surgery a lot is the best resource, because while other surgeons may say to you "oh, it’s just another surgery," they are wrong. The structures near the thyroid are very complicated, and it takes a trained hand to deal with them successfully.

I think the encouraging thing is that we haven’t had many people post with problems in their voice after the surgery. That’s a good sign. Just to be fair, I should mention that one member from Scotland did have a "rough voice" for a period of time after her surgery, and I think her surgeon told her it may not fully resolve. She did not LOSE her voice, though I know that paralysis of the vocal cords is a very remote possibility. I don’t want to promote anxiety, but I do want to be fair and let all the facts out, as we know them.

[Ski]

in reply to: Switched Endo’s continued…but I Guess I’m just crazy!!!! #1065495

It is truly frightening, the lackadaisical approach that can be exhibited by our own doctor’s office staff to OUR health. That can be our first lesson ~ watch out for yourself, know what’s going on in your own body, because sometimes you actually need to enlighten your healthcare providers. Sad but true. I’m so glad you’re finding your way, and I do hope you find some relief, SOON.

[Ski]

in reply to: new to GD/probably electing surgery/looking for support #1065448

I am SO GLAD you found us! Sorry to hear you’ve been going through this, and with your particular set of issues it must seem like complete torture.

Couple of quick thoughts ~ alternative/holistic medicine may be able to help you feel a little better as you go through your treatment and healing, but it cannot do anything to adjust your thyroid hormone levels. Believe me, if it were true, I think 100% of us here would’ve done it. There is absolutely NOTHING that suggests, scientifically, that holistic treatment can "cure" hyperthyroidism and/or Graves’ Disease.

The next thing is that I think you need to stop kicking yourself over what appears to be your choice of treatment. I know you haven’t fully decided, but here’s the real truth: all three of our treatment options can return us to health. We all have a myriad of reasons, physical and emotional, why we choose a particular treatment over another. NO ONE has the right to tell you that you made the "wrong" choice because you didn’t choose the same treatment they did, or feel they would, in your position. No one knows you better than you, no one has to live with the decision except you. All that is really, truly important is getting well.

Your decision process is definitely complicated by the disease and the treatment process ~ all the while you’re having other issues, your thyroid hormone levels are bouncing all over the place too. Remember that your body has not yet begun to heal from the hyperthyroidism ~ it can’t even start until your levels are normal, and stable. I would say you’re smart to consider RAI in light of your anxiety issues ~ it’s a long process, and wondering if/when can be hard for anyone. For you, it may just be too much.

Perhaps it’d be helpful to make a chart with the three treatment options, and write down your "pros" and "cons" for each form of treatment. Hopefully it will start to become clear, and that’s something you can look at and remember that you went through a real, objective process to make your decision. THEN you have to just put it behind you and move to the next step, healing and feeling better! It won’t be terribly quick, no matter which route you go, but we’ll be here for you throughout. ” title=”Very Happy” />

[Ski]

in reply to: Fundraiser in Pittsburgh, PA yesterday #1065487

That’s great to hear, thanks for letting us know! (And thanks for attending!) ” title=”Very Happy” />

[Ski]

in reply to: PTU and Liver failure #1065637

The typical goal of anti-thyroid drugs as a treatment option is to take them for at least one year, more likely two, before attempting remission, so the 90-day figures are likely pretty solid in that population. Anyone using ATDs just to normalize levels prior to RAI or TT would probably not be on them for as long as 90 days, and they’d have to go off them again for some time prior to RAI at least, so their treatment would be extremely short and may not even have statistics for the most serious side effects, since they wouldn’t have taken it long enough to even reach a problem state.

[Ski]

in reply to: One year from RAI #1065513

I have always felt weird for the first few weeks after using a new dose of replacement hormone, not sure why that happens, but it’s a pretty common phenomenon. I tend to feel a little up, then a little down, and after about four weeks, things settle down for the most part. The body doesn’t fully metabolize and adjust to a new dose of replacement hormone for at least six weeks, that’s just a fact, and the best possible way to find your proper dose is to make sure you wait that length of time each time you change doses of replacement thyroid hormone before you test. I wish it were as easy to fix a dose of replacement hormone as it is to decide upon a dose of sinus or pain medication, but it’s not. There are so many factors that play into it, and a little dose of "magic" (translated: stuff science hasn’t exactly figured out yet), so we have to do this dance in order to zero in on our dose. One of the best ways to help your doctor decide upon the correct dose for you is to keep a symptom diary ~ make note of the most prominent symptoms you’re feeling, and quantify and log them each day, then take the diary to the doctor at your next appointment, and discuss it. It’s much easier for you both to decide on the probable next steps when you can see that. At first, we just try to get within the normal range, but then we must see if we are at our best point within that range, and that’s where the diary comes in. When your lab results still show you outside the range of normal, it’s easy to tell what to do, though not so easy to know how far to go with the dose. It’s healthiest for the body to move one dose level at a time, because even if you’re proceeding in the right direction, it’s a shock to the system that triggers an escalation of some familiar issues if you move too far (hair and nails issues, mostly). So while it may seem that you’re moving far too slowly with this, it’s really the safest way to get where you need to be. Patience in all things Graves’. ” title=”Very Happy” />

[Ski]

in reply to: PTU and Liver failure #1065633

Truly, the most important element of your treatment is you feeling comfortable with it ~ the happiest patients are those who have made a fully informed decision. If you feel as if you are "settling," then maybe you need to think again. The actual statistics on people having increased eye symptoms after RAI are hotly debated at this point, but we do know that it’s possible. In one study, patients who took a concurrent course of steroids (a few weeks’ worth) had ZERO changes in their eye symptoms, so that’s something to consider, but of course you would have to weigh the potential side effects of steroids. (Nothing about this is easy, I’m sorry about that…) Given your current status (not hyper), you *may* have some more time to decide.

[Ski]

in reply to: Encouragement—for all to read….my current tsh level #1065504

Thanks for the update! For SO many reasons, so glad you’re here. ” title=”Wink” />

[Ski]

in reply to: One year from RAI #1065508

Thanks for the update! It is so important to have news from "the other side," for those who have just begun the journey…

[Ski]

in reply to: Treatment options if want I to become pregnant #1065579

There are people who have mild symptoms of Graves’, but there’s really no way to quantify a "mild case," because anyone who has GD has the potential for a severe spike in symptoms at just about any time. Typically at just the worst time, since stress stimulates the immune system, which would also stimulate the antibodies that make us hyperthyroid.

Methimazole is definitely not recommended while nursing, it would trigger a need for frequent testing of the baby’s thyroid hormone levels to ensure that it is not affecting them, and it could also be dangerous for their liver function. Testing often may minimize the risk, but the risk is definitely there. Smaller daily doses would minimize the risk as well, but babies are very tiny, so even small amounts have the potential to cause harm, and we know the drug crosses into breast milk.

[Author]

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