[Bobbi]

in reply to: Newbie – Side effects of methimazole? #1062571

I used to be a high school teacher, as well, so I know precisely what you mean. Do try to pace yourself. Just because you get to normal levels of thyroid hormone on the medication, it doesn’t mean that you are instantly "well" again. The body needs time to heal AT normal levels. So, figure out what is necessary and what isn’t, and prioritize.

Wishing you luck,

[Bobbi]

in reply to: Newbie – Side effects of methimazole? #1062569

The symptoms of GD can remit spontaneously, but typically that type of event lasts months, or years, not days.

What happens every single time we take a medication of any kind, is that the body breaks the medication down into it’s usable chemicals, and eliminates the unuseable chemicals that result from the process. Sometimes the unuseable ones are toxic to the body, and if we do not eliminate them soon enough, we get what are called "side effects." So, it is possible that the methimazole gives you side effects. And, the way to figure out if what you experienced is related to taking the methimazole or not is to stop the drug for a few days (as your doctor recommended), allow the body to eliminate whatever is left of the original doses, and then start it up again and see if you start feeling horrid again. But you might not. What you experienced could have just been a nasty coincidence.

I never took methimazole, but PTU disagreed with me completely. I felt horrible the whole time I was on PTU. So, it is possible for some of us not to tolerate the antithyroid meds. Most of us tolerate them reasonably well.

I hope you are feeling much better, and soon.

[Bobbi]

in reply to: Recently diagnosed with Graves Disease… #1062562

Hi, Brianna, and welcome to the board.

I have read that since the development of soft tissue imaging machinery (MRIs, CATscans, ultrasounds, etc.) that many doctors have begun to believe that all of us have "some" eye muscle changes. I don’t know of any comprehensive studies, random and double blind, to confirm that. What is known, for sure, though, is that getting "some" eye muscle changes does not mean that the person will develop full-blown, awful eye disease. The majority of people who develop the visible symptoms of the eye disease — double vision, a bit of protrusion, etc. — do NOT go on to have disfiguring eye disease, nor do they go on to have disabling eye disease. So, if you start to see signs of TED, do not panic. (Easier said than done, I know, from experience.)

Periodical eye exams are beneficial, no matter what one’s medical history, so it might be worth your while to make an appointment with an opthamologist. This is the MD who specializes in the eyes. If then you begin at some point in time to exhibit symptoms of the eye disease, you will have established a "base line" with an opthamologist, who will be able to monitor the development — or lack of development — of any TED issues.

Wishing you luck with the methimazole. But a point: being hyperthyroid in any degree whatsoever is a setback and is bad for your body. We lose muscle and bone while hyperthyroid. If it turns out you cannot tolerate the drug, please act sooner, rather than later, to eliminate your thyroid. There are huge numbers of us that live well without our thyroids.

[Bobbi]

in reply to: Hypo post RAI #1062582

It looks like your doctor is gradually increasing your replacement hormone, rather than jumping in with an educated guess of where you’ll "land." So it might take longer than it took others of us. Typically, we get a dose change and have to wait a minimum of six weeks for additional blood tests to determine how that dose "took." There is a lag time involved between the dose change and the body actually "registering" the dose change. Waiting six weeks to three months for the blood test check helps to assure that you won’t go onto a hormonal roller coaster, too high, too low, too high again. There are benefits to gradually increasing the replacement hormone dose, but one drawback is that y ou will stay in hypo territory a bit longer than if the higher dose was guessed at.

Typically, though, it takes months AT normal levels of hormone for your body to heal, so you should look for gradual improvements over time, and not expect that just "getting to" normal levels of thyroid will make you feel well all at once.

I hope you notice lots of little improvements, and soon.

[Bobbi]

in reply to: husband to new graves patient #1062596

The fact that you recognize that your wife is ill, and want to help is huge, Tim. Many of us have families and friends who don’t get it. Because we typically don’t "look" ill until we’ve been sick a while, they don’t understand that we’re really sick. Your wife is really lucky to have someone who does in fact "get it."

We’re all different in what we need during our sick period. Have you asked her what you might be able to do to help? Typically, we wives don’t want our husbands to try to "fix" us. We don’t want you to tell us what treatment option we should do, for instance, or dictate in other ways. But having a sounding board is important; and knowing that if we cannot do X today (make dinner/wash dishes/etc.) that someone willingly "has our back" can be really helpful emotionally.

Others may chime in with their feelings on this issue. I do wish you good days ahead and hope that you wife recovers quickly. And, yes, we DO typically get well again. It just takes a bit of time.

[Bobbi]

in reply to: adjusting replacement hormone downward #1062628

Hi, craftylady. You are a long, long, long way from having to worry about a second RAI. My experience of over 12 years with replacement hormone is that it needs to be adjusted from time to time. Last year, for instance, I had to have mine raised. There have been times, though, when I had to have mine lowered. And then a year or so later, raised again. There can be various reasons, most of which have nothing to do with having too many thyroid cells. 125mmgs is still a significant dose of replacement hormone. Sometimes, our diets have changed a bit. Sometimes, we are taking more/less water with the dose. Sometimes, other medications/supplements have been added/subtracted. Sometimes our other hormones change (menopause, for instance, or birth control) and that throws things off a bit. While it would be nice if we could settle into one, standard dose that we never ever have to change again, the reality is that sometimes changes are necessary. But they are a lot easier to manage than rampaging antibody issues.

I hope you are feeling better soon.

[Bobbi]

in reply to: Acupuncture/Chinese Herbs #1062632

Anyone interested in this issue should pay particular attention to the studies mentioned above. In the first one, there were only 13 (yes, that is correct, THIRTEEN) participants. And in the second, while there were thirteen assessments done of lots of other studies, the studies themselves were considered of "low" value (by the authors). The conclusion the authors drew? "However, due to methodological limitations, we could not identify a well-designed trial to provide strong evidence for Chinese traditional herbal medicine in the treatment of hyperthyroidism. Thus, we currently cannot recommend any single preparation or formulation for clinical use."

TSH floats. TSH is not a constant number, even in healthy individuals. So, trying something for a brief period of time and seeing that there have been "changes" in TSH does NOT mean that whatever is being tried is, in fact, changing the TSH for that individual. That type of reasoning is known as post hoc reasoning, and is considered false reasoning. Just because one event or occurrance follows another one in time, it does not mean (as many assume) that the first event caused the second one. We all tend to do this type of reasoning from time to time. I think the most common one is when someone eats something new, and then gets sick a few hours later and will never, ever want to eat that particular food again. With my mother-in-law, that food was shrimp. With me it was moussaka. (I have, in fact, eaten moussaka again but it was many years later.) But just because we all do it, it does not mean we should use this type of reasoning when it comes to our medical decisions.

With good scientific studies, lots of people have to submit to the EXACT SAME protocol. (This is an inherent problem for Chinese medicine because there are no "standard" or "exact same" protocols typically.) There have to be CONTROLS. One type of control is that some folks, the control group, are not given the same protocol, but are given a placebo (an inert substance that should have no therapeutic effect), and then the two sets of participants are compared to see if there are differences. (Having a control group is not something that would be done with only thirteen participants in a study.) More importantly, even the researchers do not know who is being given what. This eliminates the post hoc problem. If there are differences between the control groups, and it is seen in a significant enough part of the ppopulation studied, scientists then are more sure that whatever changed was in fact caused by what was done.

[Bobbi]

in reply to: Post-RAI Day Two #1062653

I think your boyfriend sounds terrific. I’m glad you have such support. Many of us don’t.

[Bobbi]

in reply to: Newly diagnosed Graves #1062659

Well, you’ve truly been given a lot to ponder, haven’t you! I am assuming that the "Graves" disease you are talking about is the one that has to do with the eyes. (You mentioned double vision.) If, on the other hand, you are also hyperthyroid, I would recommend that you get a second opinion about the wisdom of waiting three months for treatment. I’ll explain. The eye disease typically is not treated. So waiting isn’t likely to be an issue. The types of interventions available to treat the eye disease have significant negative side effects, so unless it is necessary to prevent blindness, we usually are given no treatments. OUr doctors monitor the progression of the disease, and only intervene if necessary. The eye disease typically runs a course of "hot phase" followed by a remission that typically lasts a long, long time. During the hot phase we get the soft tissue bulging, the double vision, the protrusion. Those symptoms typically abate somewhat once the hot phase is over. How much they abate depends upon how severely the eye muscles were impacted. In my own case, for example, I went from doubling of vision to no double vision unless I am very, very tired — with no treatment, just observation.

But, if you are hyperthyroid, it can be dangerous to wait UNLESS the treatment they give you for the myasthenia gravis suppresses your immune system. If it does that, then you might have a remitting of all the symptoms of the Graves (including the eye issues). There may be drug interactions that the doctors are worried about with treating both at the same time, but being hyperthyroid is not a condition that should be allowed to continue for any length of time. Being hyperthyroid causes muscle loss (we do get weak simply because of the excess thyroid hormone) and can adversely impact the heart. So, if you are hyperthyroid, in addition to having thyroid eye disease (TED) issues, double check about why the hyperthyroid treatment needs to be put off.

[Bobbi]

in reply to: question about after RAI #1062665

Having soreness in the throat area after RAI is normal. If you think about it this way it may help: tissue in the body has been chemically destroyed. When there is destruction of tissue, by whatever cause, there can be inflammation of surrounding tissues.

If it truly bothers you, or lingers too long, check with your doctor. But typically the only thing to do is ride it out with the help of painkillers like Advil, etc.

[Bobbi]

in reply to: Surgery- and vocal cord issue #1062669

The best source of information about this is going to be your doctor. The problem is typically not the vocal cord itself. The nerve that works the vocal cords runs through the thyroid, and during thyroidectomies, it can be damaged. That is one of the listed possible adverse side effect issues of surgery . Sometimes, the nerve is —for want of a better word — bruised, and will recover. Sometimes it is more severely impacted. Your doctor is going to be your best guide for assessing what is going on.

[Bobbi]

in reply to: Newly diagnosed and feeling out of control #1062667

Hi, and welcome to our board.

What you are describing is very common for someone newly diagnosed. Being hyperthyroid makes us hideously sick. But the treatments DO work to make us well again. It takes time for them to correct the problems created by being hyperthyroid for a while. The first step is getting your thyroid levels controlled back in the normal zone. You didn’t mention how that is being treated. (Propanolol does nothing to control thyroid levels.) Typically our doctors put us on an antithyroid drug (ATD) like methimazole or PTU. These drugs interfere with the thyroid cells’ ability to make "new" hormone. But the thyroid cells also store hormone previous made, so until those stored supplies are used up (and this typically takes a couple of weeks or more), you won’t feel much difference, even though the drug is working as it should. Once your thyroid levels are under control, by whatever means (ATDs or removal of the thyroid), your body will need a few months AT normal levels of hormone in order to heal.

So, try to be patient. WE get well by increments, not all at once. So watch for progress, improvements over time.

[Bobbi]

in reply to: 10 Days In….. #1062675

The methimazole is a drug that acts as a chemical block to the production of thyroid hormone. The trick is to take "just" the right dose of it. I think of it as the "Goldilocks" dose. If you are taking too much, you become hypothyroid. If you are taking too little, you remain hyperthyroid. And, how much any patient needs at the beginning (particularly) is a bit of a guess based on experience with other patients.

In addition, when we are given medications with Graves, we have to wait a period of time before new blood tests will show anything constructive. The medication has to have a chance to settle in, build up in the body, and then, the body has to register the changes. In our case, the pituitary gland acts as a "thermostat" for thyroid hormone levels. If the pituitary detects too little hormone, it increases the amount of its own hormone, Thyroid Stimulating Hormone (TSH) to try to prod thyroid cells into harder work. When it detects too much hormone, it reduces the amount of TSH. Our doctors use the TSH as a guide to how well our medications are working, and whether or not we need more, or less, of our meds. But the TSH number is sort of an average, a running average, of our thyroid levels and it takes a few weeks to accurately reflect dose changes of meds. That is why you are having to wait right now for new blood work.

Another wrinkle: The methimazole starts to work right away controlling the output of your thyroid cells, but the thyroid cells not only make new hormone, they store some for future needs. The methimazole ONLY affects the new supplies of thyroid hormone. The stored supplies are still there, and antibody action is causing the cells to release those stores until they are used up. So, until they are used up, we typically don’t feel much difference when we first start on the ATD (antithyroid drug — like methimazole). This could well be why you are still seeing symptoms of "problem" even though you are on a medication to correct it.

The whole thing is complicated, as you can probably start to tell from this post. One thing we patients with Graves have to develop — and it is sometimes extremely difficult — is PATIENCE. Nothing works overnight to correct the disease. Medication changes require weeks of waiting between blood tests, for those tests to accurately reflect the impact of the change. And then, hardest perhaps of all, even when we get to the right level of thyroid hormone again, it can take months AT normal levels for our bodies to heal from the damage done by being hyperthyroid. We DO get well again. But it happens in slow increments, not all at once.

I do hope you are feeling much better and soon.

[Bobbi]

in reply to: first signs of TED? #1062679

A "swollen" upper eyelid is not necessarily a sign that you should worry about worsening TED. I’m not sure what you mean by swollen, but the eyelids are truly sensitive to all manner of issues, and swelling can occur from an insect bite, from an allergen in the environment, or from some other cause that will have nothing to do with TED. "Soft tissue swelling" around the eyes is a listed symptom, true, but it is less "swelling" than it is a pushing out of the fatty pads that surround our eyes. And it doesn’t just affect the upper lid, usually. TED comes in many forms, but I would suggest that you use cold compresses, and see if the swelling doesn’t dissipate over a short period of time. There may be something entirely different going on in your case.

If the swelling persists, then you should see an opthamologist who can help you figure out what is going on.

[Bobbi]

in reply to: New here #1062749

Hi, Sooza:

To answer one of your questions, having "normal" levels of thyroid hormone while on the medication is to be expected. The drug you are on acts as a chemical block to the production of thyroid hormone. The juggling act your doctor is engaged in involves giving you just enough of the medication to keep you "euthroid" (i.e. normal levels of thyroid hormone). If you take too much of it, it will make you hypothyroid; if y ou take too little of it, you will remain hyperthyroid. So, with the "just right" dose, you will have normal levels of thyroid hormone.

Having normal levels again does not mean you are in remission. And how would you know if/when you were in remission? Basically, it goes back to that just right dose. If, over time, you need less and less of the drug to maintain normal levels of thyroid hormone your doctor will test taking you off the drug. If you can maintain normal levels for a year or more WITHOUT medication intervention, the medical community calls it "remission." That is a technical definition of course. You will see, online, in forums like this one, patients sometimes talk about being in remission when they’ve only been off the drugs for a few weeks. I am guessing that the reason our doctors may have a stricter definition is because stability of our thyroid levels is crucial to our health. Having a few weeks here and there of normal levels without drug intervention really isn’t stability. Yo-yoing between normal and hyper, or hyper and hypo, etc., is not good for the body.

[Author]

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