[Ski]

in reply to: RAI in two weeks… #1067852

Hi Nick,

There are lots of RAI success stories here (I am one), and we recently had a thread on this exact topic (positive outcomes from RAI), so take a look for it. If you can’t find it, I may be able to hunt it up and link to it, but I’m stopping in for just a moment right now (working today and getting ready to travel, on my way to a reunion and then the Graves’ Disease conference in Charlotte!).

Negative outcomes for RAI typically have more to do with difficulty getting regulated, or feeling badly at the "normal level" when a doctor proclaims "you are WELL," and you are not well. Your normal POINT in the enormous normal RANGE is what you need to find ~ the goal afterward is not just to clear your levels into the normal range and then celebrate. Again, lots of posts on this topic here, look around a little and I’ll bet you find them. It’s a process, and it’s worth drilling down to find the precise point at which you feel great, because it’s all about how you will feel every day from now on.

Typically we need to stay away from people (at least six feet away) for the first 48 hours, due to the fact that our body is flushing out the RAI that is NOT taken up into the thyroid (through our fluid waste channels, urine mostly, but also a little bit in sweat and saliva), and we don’t want to expose anyone to even a little bit of that. It wouldn’t have an enormous impact, but always better to be cautious. Once that period of time has passed, you just need to be aware that cuddling your little one up to your neck needs to be kept to a minimum for some period of time ~ the half-life of I131 (the treatment isotope of RAI) is 8 days, so every 8 days, the amount that’s in your body reduces by half. First, look at your dose (10 millicuries), then look at your uptake percentage (let’s pretend it was 75%, for purposes of working this out). That would mean that, after the first 48 hours, your thyroid would have retained 7.5 millicuries of the RAI. After six more days (the 8-day mark since the dose), your body would retain 3.75 millicuries of RAI. After 8 more days, your body would retain …. (calculating, calculating) about 1.9 millicuries. In this way you can keep a kind of tally as to how much remains in your body, and you can limit your son’s exposure accordingly. At first, make sure that if you cuddle him tight up next to your neck, it’s for very short periods of time. As the weeks pass, you can relax and keep cuddling for longer.

LOTS of information here on just this topic, so I’m glad you found us! Good luck with your RAI ~ remember, it’s been used for 60 years, effectively and safely. Thyroid cancer patients routinely receive doses 10 or 20 TIMES what we do, and it’s still considered safe.

Remember too ~ it won’t have a rapid effect. Everything with Graves’ takes time, but at least you know you’ll be rid of the future "spikes" in thyroid hormone like coming out of remission.

[Ski]

in reply to: graves eye disease #1075692

Thanks for the kind words, and I’m so glad it helped! I haven’t been going through BAD times for twelve years, that’s just the time that’s passed since the first step I took on this road ~ for the most part, I have felt pretty good. If you take the entire experience and picture it as one big pie, the segment that was "awful" was a really small slice. Since my levels came into the normal range and stabilized (many years back, now), I’ve really felt nearly normal. ” title=”Very Happy” /> Take heart! Information is power, and knowing what you’re in for is half the battle.

[Ski]

in reply to: graves eye disease #1075690

Hello, and welcome!

The first thing you should know is that the thyroid disease and the eye disease paths have no relationship to each other, so treating one does nothing to help (or harm) the other ~ well (let’s get too complicated right off, shall we?) unless you have RAI, in which case there is a chance it can worsen the eye symptoms temporarily. You’re having surgery instead, so at least it shouldn’t make the eye symptoms worse, but it will not resolve the situation either. In addition to that, your chances of having very severe symptoms of eye disease are incredibly small, so try not to worry about that. For the most part, they have found that all of us with Graves’ Disease actually have SOME level of thyroid eye disease, but in some it is so very tiny that we don’t even notice.

Now, there are two elements to the eye symptoms you’re experiencing. The fact that we have Graves’ will always render our tears less thick, less effective. For that reason, we will always need to protect them from dryness to some degree. If you use preservative-free artificial tears liberally, especially in situations that are hard on your eyes (under flourescent lights, using the computer, out in a strong wind), you’ll be glad you did. The drops you use today will help keep your eyes more comfortable tomorrow, so try and use them every so often even if you don’t necessarily feel that you need them right that minute.

Thyroid eye disease is a completely separate disease in which antibodies attack the tissues behind the eyes (either muscle or fatty tissue, kind of depends on the age of the patient), and those tissues swell, which causes the eye to "stick out" because it has nowhere else to go. In some people, the fluid comes out into the tissues surrounding the eye instead of the eye sticking out, I’m not sure why. The best doctor to determine your status with Thyroid Eye Disease is an ophthalmologist.

If you are experiencing symptoms of thyroid eye disease, it’s not quite as simple as having surgery immediately. The disease follows several phases ~ a "hot" phase and a "cold" phase, along with a period of a little of each in between. If you have surgery while your eyes are in the hot phase (this is defined as a period with high levels of activity, bulging increasing and decreasing with some regularity), you risk stimulating the antibodies and experiencing even WORSE symptoms following surgery, which can be a real problem, because then your options for fixing that situation are more limited due to the prior surgery.

In any event, it’s impossible for us to say what you’re experiencing ~ whether it’s just dryness, or whether it’s actually TED. My first symptom, the one that sent me to the doctor before I even knew I had thyroid disease, was puffy tissues around my eyes (made me CRAZY) and it was just from the hyperthyroidism ~ the swelling lessened pretty rapidly once my levels began to drop. That was NOT thyroid eye disease. I did experience some symptoms, much later on, of thyroid eye disease, but my eyes have pretty much gone back to the way they were when I started. My story began a long time ago (first symptoms – ack – 12 years ago!), but that’s another lesson of Graves’ Disease ~ patience is important, nothing happens rapidly, getting sick or getting well. Once you know where you stand and begin treatment, just remember that you’re getting CLOSER all the time. You’ll get there. Glad you found us!

[Ski]

in reply to: Conference / rides from the airport #1067933

Just a nooge ~ I haven’t heard from very many people, so I want to make sure you’ve all had the opportunity to "pair up" before you’re forced to spend the fare all by yourself! Send me a private message with the info above if you’d like to see about matching up your schedule with someone else’s and sharing the cost.

See y’all soon! ” title=”Cool” />

[Ski]

in reply to: Methimazole and white blood cells/compromised immune system? #1067871

It’s a possibility with both. There were recent studies indicating PTU carried a higher risk for children, so they now recommend only choosing methimazole for kids, but it still carries the possibility of reducing your white blood cell count. You should be alert to a high fever and really bad sore throat (together). If that’s what’s going on with you, call the doctor and ask to have a lab test run.

[Ski]

in reply to: TSH .O5 other levels normal??? #1067874

There are some good, basic books on thyroid disease in our recommended books list, but I see those haven’t made their way to the website quite yet. One is "The Thyroid Sourcebook," written by M. Sara Rosenthal, and it gets high marks for giving you basic info to get started. You can even get it on your Kindle, if you have one.

There is also a page for Frequently Asked Questions on the main site here that may help as well.

Still, the first thing you need to know is WHY your TSH level is out of whack. Your symptoms do sound like they could come from a thyroid imbalance, so it’s possible that your T4 level, while inside the normal range, is not normal FOR YOU. If you have historical thyroid lab results, it would be very helpful for you to get copies and compare them to the most recent results. Low TSH can be from several things, not just Graves’ Disease, so the intent would be to do more testing and research and find out what’s really going on inside your body.

You need your doctor to be a team member in figuring this out, so if your doctor dismissed the low TSH in favor of the other, supposedly normal, results, then perhaps you need to do research and find a new doctor as well. Any imbalance should be researched until you know exactly what’s going on.

[Ski]

in reply to: 4 years post RAI Rx and wondering? #1067876

I’m so glad you found us! Figuring out where your thyroid hormone levels really ought to be can be a tedious process, and you’re smart to try and raise the red flag to those who can help. A symptom diary may help your doctor be more responsive to your questions. The range of normal thyroid hormone levels is really enormous, and that’s because many people in the world feel "normal" at many different points along that range. That means that YOUR normal is far different than just getting to somewhere within the normal range. You can easily change a dose level and remain within the normal range, and it’s worth it to do that to find the spot at which you function best. It IS time-consuming, but it’s worth it when you think it’s really about how you’re going to feel every day forever. I think we have a symptom diary in our bulletins, but in general you want to record things like food intake, sleep, fatigue, anxiety, and be specific. When we tell our doctor "I’m tired all the time," it doesn’t have the same impact as showing them empirical data indicating you sleep 10 hours a night and still feel the need for a 3 hour nap in the afternoon. I’m sure your situation isn’t quite that severe, or you’d certainly be getting more attention, but you see what I mean. No matter which way you agree with your doctor to try and move your replacement hormone dose, you need to wait at least six weeks after changing it before you can find out through blood tests how your body is really adjusting to that dose. You will likely feel a little up and a little down, alternately, for the first couple of weeks after you start taking a new dose, so if you’re still keeping a symptom diary to check how you feel, you may want to begin after the second week is over, then you’ll still have four weeks of data to discuss with your doctor over the new test results. If you really feel that you need a dose between two dose levels, ultimately, you can either take two doses, one above and one below, on alternate days, or you can go to a compounding pharmacy who can put it all together exactly right for you. The fact is that we build up the replacement dose, then use it days or weeks later, so taking alternating doses every other day doesn’t have the effect of making you feel up Monday and down Tuesday, it evens out and you end up feeling just right, if that’s the dose that’s exactly right for you. It’s worth the work, but understand what you’re in for (it won’t be fixed tomorrow), and if your doctor won’t discuss this with you, you need another. It’s that simple. Good luck!!

[Ski]

in reply to: graves eye disease #1075688

We can experience chronic dryness solely due to the autoimmune disease ~ our tears can become less viscous, more watery, and thus less effective in moisturizing our eyes. Some days, it doesn’t seem to make much difference, and other days, your eyes are exposed to many irritants (flourescent lights, computer screens, excessive wind), and they can be very uncomfortable. Oddly, when they get dry, they tend to produce even more tears, which are similarly ineffective in moisturizing, and so they produce even more tears. See if using preservative-free artificial tears (NOT get-the-red-out drops) helps at all. They are simply extra moisturizers, and when you buy them preservative-free, there’s no limit to how often you can use them. Under some conditions, you may want to use them every fifteen minutes. It also may help to buy thicker drops for nighttime, just to give some extra moisture boost while you sleep. You wouldn’t need the gels that the people with TED use, but a bit thicker eye drop may give you some relief. I hope that helps.

[Ski]

in reply to: New Here and Very Thankful #1067940

That’s great! Looking forward to seeing you there!

[Ski]

in reply to: Sending PMs – Issues with Out Box #1067883

They sit in your outbox until the person logs on and receives them, then they show as sent. (That’s how I know the spammers never come back ~ at first I was sending them polite messages to let them know why I deleted their posts, and five are still sitting in my outbox ).

[Ski]

in reply to: 2 weeks on levoxyl no change? #1068209

Sadly, another pretty common occurrence ~ I think it may have something to do with the amount of time we must wait between EVERYTHING, our doctors just lose track of us sometimes. Still, best to at least TRY to get to one who can keep up with where you are….. It’s so much better to feel as if our medical professional is along for the ride!

This is a pretty tough time in the treatment cycle, but do remember how far you’ve come, and know that you’re closer every minute to the real health you deserve. The waiting game is a given for all of us. Doesn’t make it any more fun to go through, I agree, but at least you know we’ve all been there, and we’re here, and you’ll get here too!

One more comment ~ you shouldn’t go up more than one dose level at a time (it triggers an "emergency" response in your body), so don’t think your doctor is giving you substandard care if that’s what happens. It’s safer for you. Oh, and oops, one final comment ~ it takes at least three weeks before you can even begin to feel, physically, how you are responding to a new dose. Our body needs to build up some T4 before it’s uniformly available when we need it. Until then it’s kind of like being on a teeter-totter.

Wishing you all health, soon! ” title=”Very Happy” />

[Ski]

in reply to: Is Doing nothing an option? #1068153

Hyperthyroidism is truly insidious ~ while it’s coming on, we just feel more and more active, as if we can accomplish anything, and then the bolts start to come off the truck, so to speak. The problem is that sometimes it’s really, really subtle, so we believe there’s nothing happening. The truth is that excess thyroid hormone is like sitting your car in the driveway, turning it on and leaving a brick on the accelerator. It’ll appear as though it’s running perfectly ~ for a while. Ultimately the stress on every part of the engine will start to take its toll, and you never know where it’ll appear first. Are the spark plugs weaker than the hoses, or will the radiator fail first? When we have excess thyroid hormone in our body, it is ravaging every cell in the body, because it is literally the fuel used for every cell in the body to function, and it’s overdoing it everywhere. The damage that does can be tough to see, and it may not even show up for years, in a form someone can quantify, but it’s FAR better to not have the damage occur at all.

There are, separately, several effects that occur when we’re hyperthyroid. The muscle wasting is one example ~ hyperthyroidism accelerates muscle destruction, and suppresses muscle creation, so we lose muscle mass in all our large muscles (upper legs, upper arms, chest). Remember, your heart is a muscle, so it is also susceptible to this muscle wasting, and that’s something that may or may not be fixable. Calcium is leached from our bones, and osteopenia or osteoporosis are a common result.

All this while we THINK we feel pretty well, because the changes have come on so slowly. It’s the "frog in a pot of water" allegory ~ when the temperature is turned up just a little at a time, we never recognize we’re being boiled.

I felt awful on Tapazole too, so I know what you’re talking about. The issue is that the next statement cannot be "okay, I just won’t do anything, I don’t like the other options." You NEED to be well, for yourself and for everyone who loves you. SOMETHING must be done to correct the problem, or you risk far more difficulty than you’ve had so far. So get to know the other options and come up with the one you are most comfortable with. You need to have normal thyroid hormone levels, or you will not be well, today or tomorrow or next month. The body does not just "get over" this on its own.

I had a period of time when I was subclinically hyperthyroid (my T4 read inside the normal level, but my TSH remained suppressed for nearly a year), and I was doing the same thing ~ I feel fine, my T4 is okay, I’m sure it’s just some weird anomaly ~ but once I recognized it as a problem (which it was), pursued further treatment (a second RAI, VERY RARE, do not worry that it will be necessary for you), and finally regained healthy, balanced thyroid hormone levels, I began to realize how unwell I was all that time. In some cases it’s only in retrospect that you’ll see how ill you really are when the levels are unbalanced, but believe me, it’s true.

[Ski]

in reply to: Debating Upcoming Conference… #1067889

Conferences (in general) are not my favorite thing, but the Graves’ Disease conference IS my favorite thing, EVER. I will leap tall buildings in a single bound to attend. It has always been the most fun, most informative, most supportive few days of the year ~ and I’ve been to quite a few. If you have ANY doubts, dispel them with a wave of your hand. You will be SO GLAD you came!

[Ski]

in reply to: From Hyper to Hypo #1067896

You’re only hyperthyroid when your levels read that way, but you are still recovering from a long period of hyperthyroidism, so you’re on the path (which includes some brief trips into hypo and hyper while you find the right level). It’s a tough road to be on, but every step along the way is better than not knowing, and remaining sick. Untreated Graves’ Disease is fatal 50% of the time, and any treatment you choose has far far far better odds than that.

[Ski]

in reply to: Rebecca Bahn’s Cinical Trial at the Mayo Clinic #1067900

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