[Ski]

in reply to: tsh as you get close to normal levels #1065817

TSH definitely lags ~ I’ve heard up to six weeks can pass after changing a dose before TSH really reads *true* ~ but there’s also the fact that switching doses can trigger a period where we feel up/down for a little while. It sounds like your doctor is doing the right thing ~ I would continue on that path until six weeks have gone by, then see what the lab results are, and proceed accordingly. It’s part of the particular torture of thyroid disease, all this waiting while we feel SO CERTAIN we know what to do immediately, but it’s necessary to make sure we aren’t always chasing a moving target. We have to be at one dose long enough for the body to fully metabolize our reaction to it, test, then change to accommodate. You can at least know for a certain fact that you will not spiral into the hyperthyroid heights you attained while sick. And for now, take it easy.

[Ski]

in reply to: Eye questions #1065819

For those with severe TED symptoms, it is actually rather common that their eye doesn’t shut all the way at night, and it is ESSENTIAL to your future sight that you do something to cover the eye while you sleep. It can cause a great deal of damage not to. At our last conference, one of the doctors pointed out that using tape to hold something over the eye can actually be counterproductive, because the tape itself can pose a threat if it comes loose. I know there are some posts on here with the recommended eye covering, you may want to do a quick search for those ~ I haven’t had to take advantage of it myself, but I think one of the best solutions I’ve heard is to ring the eye with a thick line of vaseline (over the brow bone and top of the cheekbone), then put saran wrap over that, then use a sleep mask to hold it in place. You could do the saran wrap just on the eye that isn’t closing, you wouldn’t have to use it on both eyes. You may also want to use the nighttime eye gel in the eye as a lubricator, because even covering the eye doesn’t keep it from getting dry.

[Ski]

in reply to: Newly Diagnosed GD — Sad and Scared #1065864

I am tired and just worn out and really need to get my sleep in order. In my case I have trouble falling asleep or go into a deep sleep then wake and cannot fall back.

Hi Dave,

The sleep issue is one of the most difficult ~ when you’re hyperthyroid, it’s kind of like trying to swim with no water. The chemical imbalance makes it extremely hard to rest, and yet our body is exhausted from the hyperthyroidism. Very weird feeling, I know. While your sleep patterns are disrupted, you may want to make some modifications ~ first, lower your expectations. Do not expect that you will be able to have that "good night’s sleep" you remember so well. You may have to perform certain rituals in order to train your body to rest ~ take a hot bath, keep the room dark, don’t read or eat or watch TV in your bed, use it ONLY for sleep ~ and if all those things fail, sometimes you’ll just need to get up and do something quiet for a little while until you feel tired. Remember that resting your body in a dark room is almost as good for your body as full-on sleep, so try not to feel frustrated when that’s all you get. Rest WHENEVER you are able, you’ll benefit from it. If you need to go to sleep later in the night to avoid waking up FAR too early, do that. Adjust for now, and things will come back into the proper balance as your levels come into the normal range and stay there.

[Ski]

in reply to: Newly Diagnosed GD — Sad and Scared #1065859

Hyperthyroidism does make your skin dry ~ there are a host of symptoms that can go along with hyperthyroidism, you should look them up.

You absolutely should not be playing something as cardio-heavy as soccer. I know it makes you sad, but it could go VERY badly. I know you want to see next summer. It IS that important.

[Ski]

in reply to: So mad I could SCREAM…. #1065823

I try not to get political here, but this is exactly why we’ve needed to have SOME kind of standard of healthcare for ALL U.S. citizens at ALL times ~ everybody passes the buck to each other and scratches their head until YOU are out of pocket and then they say well, so what? It didn’t come out of THEIR pocket, that’s the only goal they have. I am so sorry you’re having to fight for this, it’s ludicrous. I’ve seen both of my siblings fight this fight since they were laid off, and it almost seems as if they are entrapped into situations where they might slip up and lose coverage. You have to be right on top of your game to follow the rules (they do not make it obvious), and (as you’ve found) sometimes they "ignore" the rules so you lose coverage anyway, then there’s no recourse. It is AWFUL.

HOWEVER, I must say that you need to pony up the $80 and find out where your levels stand. Keep the receipt and include it in whatever your lawyer needs to fight for your insurance, but do not let their timewasting keep you from getting care. Even if it means you borrow from family/friends, or charge it on a credit card, your health is priceless. [In addition to that, you won’t be able to blame any consequences on them if you know what’s going on, have a method for getting treatment – even if you must pay for it – and don’t take advantage of it. You must take care of yourself the best way you know how, and they can’t be held legally responsible because they wouldn’t pay.]

If you are hyperthyroid again, you can go back on ATDs, since they worked for you once before, so that you don’t endanger your health. I just saw a Wal-Mart commercial advertising 90-day supplies of generic meds for $10, so presumably that should include generic methimazole, IF you need it.

I wish you all the luck in the world on this one, you are definitely fighting against the titans.

[Ski]

in reply to: Newly Diagnosed GD — Sad and Scared #1065856

If you are currently hyperthyroid, NO EXERCISE right now. You need to achieve normal thyroid hormone levels, and remain there a little while, before it is safe to do anything more than gentle stretching and casual walking. The most important reasons are that (a) you are susceptible to arrhythmias while hyperthyroid, and they can spiral out of control when you are working out, which can actually be fatal; and (b) while hyperthyroid, our body literally *eats* muscle mass to satisfy the extra energy requirements the excess thyroid hormone creates, and exercising accelerates that process (muscle rebuilding is suppressed while hyperthyroid), so exercising does exactly the opposite of what you want, when you’re hyperthyroid.

All of us have faced this demon, so don’t feel badly about having it "top on your list." It’s just one thing you MUST get over, because treating your condition is far more important than your weight right this minute. Everything will come back into balance after the process runs its course, and you’ll be able to get back to where you want to be. Be CAREFUL now, in terms of your eating habits (and I know that’s extremely tough when you’re hyperthyroid), and you’ll come out the other side in better shape.

[Ski]

in reply to: Newly Diagnosed GD — Sad and Scared #1065854

There are a few elements to the weight issue, but it’s true, the medication does not "make" you gain weight. Some doctors like to presume that we’ve gotten used to eating a ton without gaining, and we just proceed on that route without thinking about it. I’m not sure I buy that, but it might play a part for some people. The fact that hyperthyroidism has been allowing you to eat more calories without gaining weight doesn’t necessarily mean that you’ve spun out of control, but it could mean that you believe you have a certain leeway when it comes to food, and the truth is you do not. For the best possible results, make sure the food you eat is valuable to your body ~ no wasted calories, eat fresh fruits and vegetables, whole grains, low-fat cuts of meat, etc. etc. ~ and don’t feel badly if you still gain a little weight. Hyperthyroidism "eats" muscle mass, which lowers your body’s ability to process as many calories, but when the hyperthyroidism begins to be corrected, the muscle mass begins to return. That’s GOOD. Your body needs that muscle mass. As your levels come into the normal range, you’ll be able to work that muscle and strengthen it, but in the meantime, sometimes we must live with a short period of time where our weight is higher than we’re used to. Balance will come back, as long as you’re aware of what’s going on and treat yourself the best way you possibly can. So it’s more about healing than it is about the medication. When you are first allowed to go back to exercising, it’s wise to get in touch with a physical therapist to make sure you don’t overdo. You have no idea how weak you may have become, and it’s easy to begin a cycle of pain that isn’t productive when exercise is allowed again.

[Ski]

in reply to: Newly Diagnosed — How Sick were You All? #1065833

Hi Chris,

The short answer is YES, we’ve experienced those same symptoms, and yes, we’ve returned to health. This is a perfect illustration of how it can get when we go undiagnosed for a long time ~ things just spiral downward and begin to include MANY more symptoms, each weirder than the last.

The depression you feel may have to do with the emotional impact of coming to terms with having a chronic condition, and that’s completely normal too.

Now here’s the thing ~ getting the levels back to normal is not all that needs to be done before you feel well. All the time that you were feeling awful, your body was deteriorating in small ways. Bringing your levels to normal is only the beginning, that’s the first time your body has been in balance since you began to be hyperthyroid, and the healing can finally begin. Getting to the point where you felt so awful didn’t happen overnight, and it won’t go away overnight ~ but it WILL get better, I promise you.

Diagnosis, as you’ve found, is the most important element. Remember that your body has literally been under assault, and you need some real R&R before your body will even remotely resemble the body you remember. Learn all you can ~ this is a great place to start. We’re glad you found us, and I hope you begin feeling better very soon. Try to look for TINY improvements each day, and celebrate those. Know they will add up, and know that one day you’ll find yourself having lived a full day without even thinking about Graves’. It will be a while, but one day you’ll be there.

[Ski]

in reply to: Personal Update #1065901

Hi Whitni,

It’s great to see you back here, and feeling so much better! It’s amazing what normal levels and "normal life" can do for a person, you’re living proof. ” title=”Very Happy” /> Thanks so much for checking in, it is GREAT for those newly diagnosed to see that there is a bright spot ahead.

[Ski]

in reply to: burning calories??? #1065914

Muscle tissue, STRONG, healthy muscle tissue, burns calories while you’re sitting still. That’s how it helps your metabolism.

[Ski]

in reply to: How often to have TSH checked after normal. #1065925

Peggy,
Congratulations on getting to this point, and thanks for the clarification on your treatment! It’s just sad that so many of our stories begin with "after I was finally diagnosed"….. But it’s great to see the total arc of your experience in one post, it’ll definitely give hope to those coming in as new patients! Thanks again, and good luck!

[Ski]

in reply to: Question about Grave’s Eye Disease #1065964

TED symptoms can absolutely be aggravated by long periods of work on the computer. We don’t see it literally, but the computer screen constantly "redraws" the image we see, and that’s stressful on TED eyes. That’s why it’s usually recommended that anyone who uses computers a lot (not just TED patients) take a break every 15 minutes or so, look into the distance, at least look away from the computer screen. If you have TED, you may want to take that break even more frequently.

[Ski]

in reply to: How often to have TSH checked after normal. #1065921

Hi Peggy,
I just realized that mamabear and I both presumed you reached normal after doing what WE did for treatment (meds and remission for mamabear, ablation for me) ~ please enlighten us as to your treatment path to this point? ” title=”Cool” />

[Ski]

in reply to: How often to have TSH checked after normal. #1065919

As a general rule, you can check just annually after you’re stabilized at a TSH level where you feel comfortable, but you should know that certain things can affect your TSH levels (age, weight, different levels of activity, hormonal changes like pregnancy or menopause), so if you have an annual "schedule," but one of these things changes and you begin to feel symptomatic, it’d be a good time to check again. If your thyroid were "listening" to your TSH levels (like a normal thyroid would), then these things would self-correct, but since we who have lost our thyroids can no longer do that, we need to be vigilant ourselves. Typically, even these changes don’t cause such dramatic swings as you experienced while you were hyper, but that’s why we check at least annually, because we might not notice much change ourselves.

[Ski]

in reply to: Am I Not Doing Enought For My Graves? #1065939

Hi Dave,

Believe me, we’ve all been where you are. I know it’s frustrating, and harder still when you’re ill. I can tell you for a certainty that you will get better, healing will come ~ but it will be a long haul, no matter what your treatment choice.

I saw your other post saying that you are afraid of Graves’ ~ let me put that a slightly different way. Be afraid of hyperthyroidism, but not Graves’ itself. You can get to the other side of Graves’, you will feel better, your body will heal, and you will have a new sense of what it means to be healthy. The only way you can get there is to battle hyperthyroidism and end it. The fact is that your thyroid is overproducing right now, due to antibodies your own body has built (why, we don’t really know), and in the absence of any way to control the antibodies, we must solve the hyperthyroid condition somehow. ATDs can work, do work, and have worked for thousands, probably millions of patients. It takes time to dial in the right dose for you. If you find that they are toxic to you for some reason, then the only way to end the hyperthyroid state is to get rid of the thyroid. I know that sounds drastic, but it’s the hyperthyroidism that can be fatal, NOT Graves’ Disease itself. I hope that makes some sense.

Once again, I know this is tough. We all know this is tough. We’ll be here for you, because we do understand.

One quick note ~ remember that people come to these types of bulletin board for a few main reasons. Either they are newly diagnosed, or having trouble with their treatment. Remember there are millions of people out there who have been diagnosed and successfully treated who will never appear on this bulletin board, because they feel no need for such a thing. Sometimes we read the posts and think that everyone with Graves’ is miserable, but it’s simply not so.

Take heart, be kind to yourself.

[Author]

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