[Bobbi]

in reply to: Questions about Ted #1063670

Yes, TED is definitely horrid. When I was diagnosed with Graves disease — I was hyperthyroid — the medical community still called the eye disease GRAVES opthamopathy (sp?). People with the eye disease were told they had "Graves." But by the time the eye disease appeared in me, doctors and researchers had started calling it THYROID related opthamopathy. Or thyroid eye disease. I asked one of my eye doctors about the terminology change, and he told me that they were finding the eye disease in various types of thyroid illnesses, and not just hyperthyroidism. So, apparently, some doctors and researchers at least, think that you can have TED without having "Graves. " It doesn’t matter what it’s called: to paraphrase The Bard, skunk cabbage by any other name is still skunk cabbage.

Be sure that you are properly lubricating those dry eyes. It will help protect your corneas from scratches.

And the soft tissue swelling around the eyes is one of the more minor symptoms of TED. There are fatty "cushions" in the tissue around the eyes, and as the eyes are pushed forward by the swelling muscles, these fatty cushions become more pronounced. Whether or not the swelling will go away over time depends a lot upon how supple your skin is. Mine is old, and saggier than it was when I was young. It doesn’t recover from swelling like it used to.

[Bobbi]

in reply to: motivation #1063697

Caffeine boosts are undoubtedly a really bad idea. I know you are tired. Being hyperthyroid does that to us. Our bodies are working too fast 24/7. There’s no such thing as "rest" periods, which is why our sleep patterns get disrupted so easily. But making your heart work faster, your body work faster, when it is already working too fast, really isn’t going to help pep you up, and it might make you feel worse actually.

The antithyroid meds (a.k.a. ATDs) like PTU do typically work right away to block the production of new thyroid hormone. Unfortunately, the thyroid cells store thyroid hormone and until those stored supplies are used up you may not feel a whole lot of difference. Then, you and your doctor will have to calibrate the dose of ATD to find just the right amount. If you take too large a dose, over time, you will become hypothyroid. Too small a dose will leave you hyperthyroid. So plan on three weeks to a month before you start to feel any real difference.

Meanwhile, just pamper yourself when you can. I hope you are feeling much better, and soon…..

[Bobbi]

in reply to: Diet Support #1063704

James wrote you some really good info, but I would like to add a couple of comments. First, while there are plants that contain a compound considered a goitrogen, when I did research on this particular issue I found that it would be physically impossible for a human being to ingest enough of these plants to actually adversely affect their thyroid function. Inasmuch as these foods (like broccoli) are jam packed with other nutritious compounds, avoiding them is not only not neccessary, it is also probably a bit unwise. As James mentioned, we most definitely need food with a high nutritional content. And I’m talking only about goitrogens, here. Kelp is in a category of its own and it IS possible to take in enough to throw your thyroid out of whack. But I know of no studies that have shown that reasonably sized portions of broccoli or even kale, etc. can hurt.

Second, the issue with dairy puzzles me. During the time you are hyperthyroid, you are loosing bone. The cells which build bone are not as active as the cells that take bone away while we are hyper. And, as we age, we are loosing bone as well. Dairy products are an incredibly important source of calcium, and one the body most easily incorporates. So, before you eliminate dairy, I would advise you to double check your source and their information. I personally am skeptical of supplements, even calcium supplements. I KNOW what nutrition a glass of milk contains, basically, but supplement manufacturers are not controlled, and what the specific content of their pills might be has been shown to vary widely.

[Bobbi]

in reply to: RAI 2 weeks ago #1063724

Thyroid cells not only make thyroid hormone, they store it for future use. When thyroid cells are destroyed after RAI, they release that stored supply of hormone into the body all at once. About one week after RAI — give or take — this "dumping" of thyroid hormone into the body causes us to be even more hyperthyroid than before the treatment. This episode is limited in duration because the thyroid cells are not manufacturing NEW hormone to dump, just the stored supplies.

Sometimes our doctors warn us of this, and give us a medication to help alleviate the symptoms during this time. Not everyone can take the meds however. But if you need to, call your doctor to see if he/she will prescribe something tide you over through these next few days. It might help to know that the T3 that is being dumped only has a half-life of 18 hours or so. What that means is that at the end of the first day, half of it is already essentially "gone" from your body. T3 is the most potent form of thyroid hormone. So its impact is over much quicker than the effect of the T4 being dumped. What that means for you is that the worst of the symptoms should be gone in a few days.

[Bobbi]

in reply to: Possible recurrence 16 years post surgery? #1063718

Wow — you have been through a whole lot in the past few months! Is it any wonder that you are feeling "off?"

To deal with your question — "Graves" — in the sense of the autoimmune disease — never goes away. The antibodies that caused you to become hyperthyroid long ago, typically persist. But antibodies are very specific to a "target." Antibodies against chicken pox virus, for example, do not kill off common cold viruses. Our Graves antibodies target the thyroid cells, causing us to overproduce thyroid hormone. But removing thyroid, as you did, helps to prevent hyperthyroidism from recurring. If you had enough thyroid removed long ago, you might need occasional adjustments in the amount of replacement hormone that you take, but you should not expect a total, rampaging recurrance (sp??) of hyperthyroidism. Since you have had your levels checked and they’re within the normal range, your hyperthyroidism has not come back.

I had to rebuild my house after Hurricane Andrew in the US long ago. It’s hard. If you can, just take one step at a time, view your progress (however slight) and pat yourself on the back each step of the way. You will get back to normal someday. I do wish you good luck.

[Bobbi]

in reply to: Can GD ever go away? #1063728

I have heard the term "cure" used by doctors with respect to hyperthyroidism when the thyroid has been removed. In other words, you can permanently stop/cure hyperthyroidism. Since that is what makes us so very ill, having that type of perspective can be helpful, I think. But GD — the autoimmune situation — must be looked upon as "permanent" or "chronic" as well. We must forevermore have our thyroid levels checked because of the possibility of becoming ill again if we have a thyroid, and because medication doses might need adjusting. We do indeed regain our health typically regardless of how we choose to go about treating things. It’s sort of a "is the glass half empty or half full" type of situation. How you, individually, choose to evaluate things is important to whether or not you will ever feel "cured." Personally, I feel cured. So I look at the half-full glass.

[Bobbi]

in reply to: Hyperthyroidism and the Boston marathon #1063749

I don’t think you should use the term "hyper" loosely. We talk about kids being hyperactive, for example — or "hyper" — and what we mean is high energy (among other things). It is one thing to have high energy levels. I have pretty high energy levels — and I’m fourteen years out from my RAI. And old at that!! Having "hyper" levels of thyroid hormone is something vastly different from having high energy. You can have high energy without having excess amounts of thyroid hormone in your system. In point of fact, having excessive amounts of thyroid hormone makes us tired: we cannot sleep; ALL of the body’s systems are racing too fast AND inefficiently at that.

I doubt that you could have been functioning as a racer at such a high level had your thyroid levels been too high. There’s some aspect of too much thyroid hormone that interferes with the quick recovery muscles need to keep functioning over time. An example from my experience might illustrate this point. I had been power walking with friends in the Spring of 1996. My husband and I planned a trip out West to visit national parks and hike. By the time we got there in July, I couldn’t hike — my legs just wouldn’t go. When I got back home, I had heart palpitations and a racing pulse, so my GP sent me for a thalium stress test (cardiac). After about five minutes on the treadmill, the cardiologist had to help hold me on the treadmill because my leg muscles gave out. All that, and I had been power walking three months earlier with NO problems. So I think you should expect to get back to "your" normal energy levels once you are regulated in the normal zone of thyroid hormone, and once your body has had a chance to heal.

[Bobbi]

in reply to: MORE INFO ON TED #1063806

I just reread one of your posts, Susan, and realize that I missed one of your questions. Ski addressed it, but I would like to add my bit to it, too.

The most important thing for you to keep in mind is that getting "some" symptoms of the eye disease does not mean that you will get all of them, or that your eye issues will become serious. I got the soft tissue swelling, and I went on to develop double vision, with only a slight bulging (protopsis) of the eyes. When the hot phase was over, these symptoms went away. I may still have a wee bit of the soft tissue swelling, but the only time I get double vision is when I am very tired, and I have no noticeable protopsis….(if that’s the correct spelling). So yes, the symptoms remit once the hot phase is over. How much they remit depends upon how much damage is done to the eye muscles during the hot phase. I was told at one point that I undoubtedly had "permanent" damage — not something you want to hear. But whatever that damage might be, it is hardly noticeable any longer.

[Bobbi]

in reply to: 2 RAI rounds…now TT…Help… #1063742

I have no information that suggests that having a total thyroidectomy would prevent the eye disease from occurring or, if it is already present, prevent it from worsening. You body has already created the antibodies that are running amok. Some folks even suggest that the eye disease is a "separate" (i.e. different antibodies) autoimmune.

[Bobbi]

in reply to: Very frustrating and need some serious help #1063930

One thing I have found helpful, Lavender, when my doctor tells me something "isn’t thyroid," is to turn things back by saying, "OK. Then what IS going on???" I mean, it doesn’t really matter what it isn’t, provided the doctor continues to puzzle out what the problem IS being caused by. As you have found, when the doc says, "It isn’t thyroid," he/she is essentially done pondering the problem. You have to get him/her jump started back to problem solving mode.

[Bobbi]

in reply to: 2 RAI rounds…now TT…Help… #1063740

One thing you need to know, Paula, is that there is nothing that regulates those TSI levels in any safe way. Yes, there are drugs which could lower the TSI levels, but they would suppress the entire immune system making us more likely to become very ill with something that normally the body would have fought off. Flu for example, or pneumonia could become a really dire threat in someone who has suppressed immune system due to medications. So it makes little point for us to pay attention to TSI — especially if we’ve already removed our thyroids. Those TSI levels will rise and fall throughout our lives for no well-understood reason. And there are alternative, safer treatments for us than immune system suppression for our problems.

[Bobbi]

in reply to: 2 RAI rounds…now TT…Help… #1063735

Hi, Paula, and welcome to the Board.

First off, I am really sorry you have had such a horrid time. Having wonky thyroid levels is bad enough, but when you get the pretibial myxedema AND the thyroid acropachy as well, you have been dealing with a lot of issues all at once.

Obviously, nobody here is going to be able to tell you for sure why you haven’t been able to get to a sustained level of replacement hormone. I will make some comments about "possibilities," and try to give you some insights — which you may already know since you have been doing research all these years. Nevertheless, sometimes something new might occur.

Typically, getting balanced out on hormone replacement requires a major amount of patience. Getting to the right level of replacement does NOT make you feel instantly good again. Some folks expect the pill to be a bit magical that way — i.e. if I am taking the right amount, why don’t I feel well? So, if I don’t feel well, I must not be taking the right amount. This type of thinking can actually slow down your recovery. But more about that later. The thing is that having wonky levels of thyroid hormone throws off all of the body’s cell systems. Some damage can occur (muscles for example: we lose muscle mass and it takes time AT normal levels of hormone for muscle to return), so we can feel weak/tired even though we’re at the proper level if our bodies haven’t had enough time to HEAL.

So, how can it sometimes throw off our recovery if we expect too much, too soon? A real problem develops if we get our blood tests too frequently. The TSH — which is what most of our doctors look at to see if we are at the right level of replacement — can take a long time to properly register our hormone levels. It’s a "running average" of sorts, so until you allow weeks to pass (typically a minimum of six weeks, but three months is better), you may not get the proper Final Answer. If you get tested too soon, and the full effects of a dose change are not reflected in the test, you could make a correction that would make things worse, not better — I think it’s a bit like putting yourself ona hormonal roller coaster.

Another problem can result from taking other medications/vitamin supplements/supplements too close to the time you take your replacement hormone in the morning. You should take the replacement on an empty stomach, first thing in the morning, with a glass of water, and then wait AT LEAST a half hour before having breakfast. You should not take any vitamins or other supplements for about FOUR hours. There are minerals and elements in food and vitamins and supplements that can block the absorption of your replacement hormone, so consistently doing one thing (ie taking it first thing in the morning, etc.) can assure you that you are not, inadvertantly causing fluctuations in the amount of replacement that is absorbed. The main issue is being completely consistent about what you are taking when, and what you are eating, and how soon after, etc. The easiest way to accomplish the consistency is to take the replacement hormone all by itself, on an empty stomach, first thing in the morning and give it time to start being absorbed into the blood.

I hope these suggestions help a bit. They may be totally unrelated. But I do hope you are feeling better soon.

[Bobbi]

in reply to: early waking up and beta blocker #1063745

Two things are going on — the first is that your dose of methimazole was lowered, the second that you are trying to wean yourself off the beta blocker. I would check with the pharmacist about how quickly — or slowly– you should be weaning from the beta blocker. It may have something to do with how long you’ve been on it, what type of BB it is, etc. But you should keep in mind that the early morning waking, and the elevated pulse rate could be a signal that you might be hyper again. Or at the hyper end of normal.

Wishing you better health soon,

[Bobbi]

in reply to: Hyperthyroidism and the Boston marathon #1063747

Hi, Marciam, and welcome to the Board. What you have experienced is the slow deterioration of our bodies that occurs while we are hyperthyroid. You used to be able to run long distances; now you are having trouble climbing a flight of stairs. It will get worse without completely effective treatment. Even SLIGHT amounts of hyperthyroid levels of hormone, over time, destroy muscle and bone. We lose muscle. We lose bone. It’s important to get back to normal levels of thyroid hormone, so that your body can start to heal.

As to whether or not you will be able to compete in April, only your doctor will be able to tell you. I know of one (although there may be more) Olympic track athlete who developed Graves hyperthyroidism, and was able to come back and compete in the next Olympics. But, of course, those are spaced out more than Boston marathons are. The thing perhaps you should keep in mind is that we do get well again, and the Boston Marathon is held every year. So, if it happened that this next one is too soon, perhaps the one after that would not be.

Wishing you good luck,

[Bobbi]

in reply to: MORE INFO ON TED #1063801

At one point, my eyes got so swollen that the skin turned purplish mauve. At the time, GD/RAI was considered the culprit, and eventually the swelling went away, but I later developed other symptoms of the eye disease. So I thought the problem was related to TED. But twice since then I have had the huge swelling. These other times, allergies were diagnosed, and I was given a short Rx for prednisone to get the swelling under control. The last time this happened, two docs decided I was having an allergic reaction to a cat….

My point. Don’t be too quick to blame the eye disease. It might well be that something else is going on, which you could be ignoring by blaming the eye disease.

But, going back to your comment about not wanting to go out due to how you look. I hope you can get through those feelings and get back into the world. It will reduce your stress levels to have outside activities, and meetings with friends, etc. The time of the hot phase is way, WAY too long to hide yourself away. I do know how you are feeling. When my eyes first turned mauve, I looked like a battered wife. I went to a local department store’s cosmetic section and asked the ladies there for "industrial strength" make-up. (It absolutely helps to have a sense of humor when you’re going through this.) They helped a bit. I think, in retrospect, I would have been better off going to an actor , because I needed more than a little help. Now their stuff is definitely "industrial strength!" Anyway, I’m not being glib when I say I hope you can work through your feelings of self-consciousness soon. I know it’s hard. I also know that it’s necessary for our emotional health. And one of the lessons I took away from my Graves experience was that how I look is not who I am, nor does it reflect my worth. But it was a hard lesson all the way around.

[Author]

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