[Bobbi]

in reply to: Fairly new to Hyper & GD…..going crazy…. #1169986

Hi, Nicolefsu, and welcome to the board.

It is good that you have an endo you feel comfortable with now. We need to establish a working relationship over the long haul, so having a doctor you can talk to is important.

Your current dose of methimazole (which is the generic name for Tapazole) is significantly smaller than the dose you were on before. It is possible that the higher dose was a problem for you. What is important, though, is that the dose you are on has brought your thyroid hormone levels into the normal zone. If it hasn’t, you might need a dose adjustment. Stomach issues (although not, usually nausea) can result from too much thyroid hormone revving up the digestive system. Your doctor will undoubtedly ask you to come in periodically to check your blood levels of thyroid hormone to make sure that you are inside normal.

Our emotions do go wonky with excess thyroid hormone. It is important that you know that because we must distrust our knee jerk responses to things until we get well again. It is easy to damage relationships by flying off the handle, for example. And excess levels of thyroid hormone can make us anxious and nervous. That said, you are ill, and having anyone tell you that you are exaggerating, etc., is not only not helpful, but it’s likely not to be true. We have to spend months AT normal levels of thyroid hormone for our bodies to heal properly. Just taking the pill doesn’t bring instant health. It has to be the correct dose, OVER TIME. And the way to tell its the correct dose is to have periodic blood tests making sure that you are still within the normal levels for thyroid.

So, try to be patient with yourself, and work with your doctor to make sure you are on the right dose of antithyroid drug. And take good care of yourself on your off-work hours.

[Bobbi]

in reply to: Pros/Cons about treatment plans #1169996

Hi, Mammaof2. As Kimberly said, there are pros and cons for any treatment. And there are pros and cons for the types of forums we have here on the web to discuss treatments, etc. One of the major things against a forum like ours is that it is weighted towards illness messages, not health messages. Once people get well again, they typically stop posting all the time to forums like this one. Go in, and check our messages from six months ago, then a year ago, then….well, you get the picture. You will find the stories are almost exactly the same, but the names have changed. The people who are here are different now from the ones who were newly diagnosed, struggling with treatment options, a year ago. Once they get well, no matter what treatment option they chose, they stop posting all the time.

I mention all of this to try to dissuade you from judging RAI strictly on the basis of messages you find online, particularly on other boards which don’t try to provide perspective. One of the "cons" to RAI, for example, is that it is not an instant fix: it takes time for the thyroid cells to die off, which adds to the time it takes for us to find the right, permanent dose of replacement hormone. The process can take 6-12 months, and people get impatient and vent. (It also takes months to find the right dose of replacement hormone once you have had surgery, but with surgery, you don’t have to wait for thyroid cells to die off — they’re instantly gone. That shortens the process by 6-18 weeks, but there are other potentially negative factors associated with surgery to weigh. )

Going back to the first part of this message, there are real, rational pros and cons to each of our treatment options. They ALL have been demonstrated to return us to health, over time. Shirley chose surgery; Kimberly chose the antithyroid drugs; I chose RAI. We are all healthy again. We are really lucky that this vicious disease we have has verifiably successful treatment options. So expect to get well again. But know that it will take months, no matter what treatment option you choose.

[Bobbi]

in reply to: Getting Through this.. #1170022

Hi, supermom, and welcome to our board.

First off, you absolutely MUST treat the hyperthyroidism. Being hyperthyroid is potentially lethal, and even when it isn’t, it drains the body of strength, and weakens it — especially the heart. I empathize with you, because I, too, hate taking pills, but this is a situation in which you absolutely must take medication of some type or other. And, also important, you must take the meds the way the doctor instructs, so that when you get new blood tests done, the results will give your doctor the proper information about HOW the meds are working. If you tinker with the meds on your own, your doctor’s hands will be tied, and you will have a much harder time of getting well again.

After you’ve been on the meds for a while, and you start feeling better (hopefully), you can give yourself some space for trying to decide whether or not you want to stay on these meds, or whether you would prefer to have your thyroid removed (surgery or RAI) and go on replacement hormone. That, too, is a pill, but it is one pill a day and it has no side effect issues if you are on the proper dose of it. (If you look up replacement hormone in a pill reference book you will see side effects listed, but if you look at them closely, you will see that they are either symptoms of hyperthyroid or hypothyroid. The replacement hormone is chemically identical to our body’s own thyroid hormone T4, so the issues surrounding taking it is simply one of dosage.)

Yes, Graves people can get flu shots. I get one every year, and that included the year when I was first diagnosed. But your doctor is the person to tell you whether or not at this moment, this year, it is advisable for you.

[Bobbi]

in reply to: RAI treatment #1169998

Hi, JaneG, and welcome.

Any RAI that does not make it into your thyroid in the first 24 hours or so, is dissolved in body fluids, and excreted from the body. If you had an uptake and scan, you received a percentage uptake number. So, say it was 56%, what that would mean is that you could expect that your thyroid will take up 56% of the dose you are given. RAI is very soluble in water, so we eliminate excess amounts of it from the body rather quickly. But when you receive your dose, your doctor (or nurse/tech) will give you recommendations for how best to handle things so that those around you are not exposed to UNNECESSARY radiation. Typically we are told to use plastic eating utensils, paper plates, flush the toilet twice, double wash sheets, etc. I emphasized the word "unnecessary" above, because the amount of radiation others get exposed to is not harmful, all by itself. But radiation exposure has a cumulative effect over our life times, so minimizing unnecessary exposures is good practice.

There is, typically, soreness in the throat for a week or so after the RAI starts to work. It is, after all, damaging tissue in the body, and there is inflammation associated with it. I was not particularly bothered by the soreness — it was minimal for me. But others have reported more intense soreness than I experienced, so there is obviously a range involved.

Also, approximately one week after RAI, as thyroid cells have been damaged beyond repair, you will experience more hyperness than usual. This is because the damaged cells release their stored supplies of hormone into the body — we call this episode "dumping" here on the board. The cells are not making new hormone, so this isn’t like thyroid storm (where the cells continue to produce hormone while they dump it), but it can make you more uncomfortable than you would like for a few days. Your doctor may prescribe something to keep you more comfortable during this time.

Then, you simply have to put on your cloak of patience and wait for the process to fully work. Your doctor will recommend a time for you to come back to check your thyroid levels (typically around 5 weeks or so). We typically suggest that if you start to experience bothersome symptoms of hypothyroidism, that you call and see if you can move that appointment up. It is best not to go too hypo, if you can help it. That said, I have experienced minor levels of hypo (up to a TSH of about 13) and felt fine — but I think on the gazelle to lounge lizard scale of life, I tend to land on the lizard end, so I don’t mind minor levels of hypo. ; )

Wishing you good luck and good health soon,

[Bobbi]

in reply to: So Many Questions! #1169090

There are possible, plausible explanations for why you are experiencing voice difficulties, that can be associated with thyroid. First off, the nerve that services the vocal cords runs through the thyroid, raising the possibility that it could be pressured by growing thyroid tissue. Secondly, we lose strength, throughout the body, when we have too much thyroid hormone — it’s possible that loss of strength in our muscles, etc., could be a factor. I noticed improve voice issues when I finally got my thyroid issues under control, but that might not hold true for everyone.

[Bobbi]

in reply to: New to GD, and have some questions #1169134

One comment to dcollmar — when we have RAI or surgery, we do lose our natural thyroid function. But we are not "hypo" if we are on an appropriate dose of replacement hormone. Replacement hormone IS thyroid hormone. It is a product that is precisely the same as our body’s own T4 (in most cases) and it is utilized in precisely the same way as our own T4.

The key issue about whether or not to stay on the antithyroid meds, or to remove the thyroid must be made on whether or not your levels of hormone are adequately controlled by the meds without adverse side effects. If the meds keep your thyroid level in the normal zone, without side effects, fine. If they do not removing the thyroid can help you to regain your health.

[Bobbi]

in reply to: Smoking and Graves Disease #1169353

To taserguy: get your friend to stop smoking while wearing the patch. Probably a cigarette or two wont’ hurt, but you can get toxic levels of nicotine if you are doing both, and your smoking is at asignificant enough level.

As a former smoker — it’s almost ten years ago to the day when I quit — I would agree with most of what Chris said above in terms of how to go about quitting. But the most important aspect of things for ME, was the recognition that I was an addict; that I couldn’t have just one cigarette. Most people are in denial about the addiction side of things, but until you recognize that you cannot have even one cigarette, just like an alcoholic cannot have one drink, you are increasing the odds of failure.

Also, for me, the help aid was an anti-smoking drug — a prescription. I tried all manner of other ways to quit, including hypnosis, but the prescription drug made the final difference.

Just as there are different treatment options for Graves, there are different ways people try to quit smoking. It doesn’t matter what you try, just try. Some may work better for some people than for others. It’s the quitting that is the goal, not the method used.

[Bobbi]

in reply to: Pregnant and questions! #1169208

Antibodies are not necessarily affected by any of our treatment options, so it is possible/likely that you still have them. When you remove your thyroid, however, the antibodies have lost their ability to ruin your health.

Typically during pregnancies, the mother’s body suppresses the immune system somewhat in order to deter it from creating antibodies to the baby’s tissues. As a result, even women with Graves who still have their thyroids can experience a remission as antibody levels lower. But, again, that shouldn’t be much of an issue for you. It can be a help for the baby, however, because antibodies can cross the placental barrier. Occasionally, the baby of a mom with Graves can be born with the mother’s antibodies affecting its thyroid function. This is a temporary condition because it isn’t the baby’s body producing those antibodies, it’s just residual antibodies from the mother. Nevertheless, it is fairly standard for your baby to be checked for thyroid levels at birth, just in case.

[Bobbi]

in reply to: Success stories with RadioIodine treatment? #1169602

Wishing you continued improvement, HonestBabe.

[Bobbi]

in reply to: I really need help!!!!!!!!!!!!!!!!!! #1169211

It is very difficult to make appropriate decisions while we are hyperthyroid, so it is very important that you find someone that you can talk with about your situation. Do you have a minister? A parent? A cousin? A best friend? You need medical help, and you need to find someone to get you to that help since your husband is unsupportive. You need to get to a doctor. You do not necessarily need an endo — the endo might be the best bet, but a GP or internist is totally qualified to prescribe the treatments as well. What you must not do is spend more time hyperthyroid. This is not your husband’s decision, by the way. You are an adult, you know you are ill, and you need a doctor to help you get well again. Now you just need to find a way to get to that doctor, even if it means taking a bus or a cab. Your children need you to be healthy, too. I realize that it may not be as easy as I’ve stated things, but it very much IS that important to you.

Wishing you good luck.

[Bobbi]

in reply to: teenage daughter has Graves? #1169218

Hi, and welcome to our board.

A bit of perspective: aspirin and tylenol can be toxic in too large a dose. The medications that we are put on for hyperthyroidism have side effects in only a small percentage of people who take them (I believe it’s less than 5%), as long as the dose is appropriate.

There are also other options sometimes for treating thyroid issues. For example, the thyroid can be completely removed via surgery. Typically, with adolescents the doctors prefer not to use RAI, but that is also safe, long term as far as anyone knows. I know that you can find tales on the web that contradict that last statement, but they are bogus. Long term studies of people who have had RAI show that BEING HYPERTHYROID is vastly more dangerous than any of our treatments, including RAI.

So the main issue is to stay on top of your daughter’s condition, making sure that her thyroid status is being checked reasonably frequently. If she stays hyperthyroid too long, it can have long-lasting implications for her health.

My heart goes out to you both. It’s hard enough to make decisions for ourselves when it comes to treatment, but making the choice for a child is an additional burden. I hope that she is feeling much better, soon.

[Bobbi]

in reply to: Will RAI always lead to some kind of Thyroid Eye Disease? #1169244

There was a study about — I don’t know 12 years ago? — that observed temporary increased symptoms of TED with RAI in 16% of patients observed. Patients who did RAI while taking prednisone, however, had no temporary increase in symptoms. That study, apparently has not been completely validated by other studies, and if Kimberly were online, she could respond better about more recent studies’ results. (Kimberly is on vacation.)

The thing is, there are always new studies. If they are peer-reviewed and published in respected journals, the results are tentatively accepted as valid, unless new studies come along that either refute or substantiate them. The problem for us, though, is that typically these studies have a very small group of patients involved, so results are not necessarily universal. So, we have to accept a certain amount of uncertainty when it comes to making our decisions, and that is never a comfort.

What is known: TED occurs in people who have never had Graves; TED occurs in people long, long, long after they get treatment — whatever treatment — for their Graves. Shirley, for example, developed the eye disease decades after having her thyroid surgically removed, and surgery has not been associated with increased TED in the studies I’ve seen. Obviously, others develop the eye disease closer to treatment, which makes them then blame the treatment. It doesn’t make it true. And it doesn’t help anyone in your position, who is trying to evaluate what is their best treatment option.

[Bobbi]

in reply to: 6 years in, I have questions #1169230

I’m not sure what to suggest, Antony, other than to discuss possible OTHER reasons for your fatigue with your doctor. Sometimes, we go into our docs convinced that whatever is going on is thyroid related. The doctor checks, says, "It’s not your thyroid," and ushers us out the door, thinking processes stopped. But we DO have a problem in these situations, and it isn’t helped by having the doctor stop thought. So, a follow-up question has to then be asked: "If it’s not my thyroid, then what IS it?" Sometimes, when nothing else turns up, the doctor might be willing to tweak the dose of replacement hormone a bit. Sometimes, something else turns up — for example, anemia, or something. So, the important thing is to get your doctor thinking about how to diagnose what IS going on.

As to muscle loss, that is not typically associated with too low a level of replacement. It can be associated with too HIGH a replacement dosage (one that makes us hyper again). As we age, though, we lose muscle, even if we are getting appropriate exercise. Whether or not you’ve lost too much to be within normal parameters though is another question for the doctor.

[Bobbi]

in reply to: Will RAI always lead to some kind of Thyroid Eye Disease? #1169241

The better question is probably does GRAVES always lead to some kind of Thyroid Eye Disease? And the answer is, most likely, "yes." According to an article written by a doctor that I read a few years ago in The Bridge, the newsletter of the American Thyroid Foundation, doctors were finding that we ALL had "some" eye changes associated with TED. Signs of the eye disease were found in autopsies; soft tissuing imaging like MRIs, ultra-sounds, etc. finds it in others of us with little or no sign of the disease. The vast majority of us do not develop significant symptoms, but if we were all examined closely enough, the article’s writer suggested it would be likely that symptoms of TED could be found.

People develop the eye disease before getting treated for hyperthyroidism; during treatment for hyperthyroidism; long after treatment for hyperthyroidism. Trying to control whether or not you get it by choosing one treatment option over another is not likely to be effective. Choose the treatment option that offers you the very best chance of eliminating your hyperthyroidism with minimal adverse effects for your health. That choice will be different for each of us. There are sound medical reasons why one person should choose/avoid some of our treatment options. But eliminating the possibility of getting the eye disease is not one of them.

[Bobbi]

in reply to: Waiting…………. #1169258

Part of the problem right now, tired 1231, is that it looks like your doctor is still trying to find the correct dose of the drug for you. We have to be on just the right amount. If we take too much, we become hypothyroid — that’s when hair starts falling out typically. Just try to be patient with the process — because it is a process, not magic.

Hang in there

[Author]

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