[Bobbi]

in reply to: Newly Diagnosed…Would Love to Talk About Shared Symptoms #1067286

Uptooearly asked some questions about what is going on. I’ll try to give a basic answer. If there are other, specific questions, please ask.

Essentially, when we have Graves disease, our bodies overproduce thyroid hormone. Excess thyroid hormone causes us to lose muscle and bone, and interferes with the proper functioning of just about every system in the body. In short, it makes us very sick.

There are two basic ways to fix the problem of excess levels of thyroid hormone. The first is to take a drug we call here an antithyroid drug (ATD). There are two basic ones: PTU (propylthiouricil) and methimazole. These drugs act as a chemical barrier to the production of thyroid hormone.

The second way to fix things is to remove all or part of the thyroid. The removal can be done chemically, using a radioactive isotope of iodine (I131) or surgically. RAI is the most commonly used way to remove thyroid cells here in the U.S. Iodine is used in the body ONLY in the thyroid, so when we take the pill (or sometimes liquid) the RAI goes into the thyroid and not any other part of the body. Any of the RAI that does not get accepted into the thyroid is eliminated from the body within a couple of days. The RAI has a very short life span and is essentially gone from the thyroid in a little over five weeks, but while it is in the thyroid, it destroys thyroid cells. It has been used and studied for over 50 years, and has a good safety record.

There are a variety of reasons why doctors might recommend one treatment option over another. Some of it has to do with the medical condition of the individual patient. It is unfortunate that you cannot communicate well with your endo, to find out why this treatment has been recommended to you. But I can tell you that my mom had RAI back in the early 1970’s, and I had it in the late 1990’s. It made us well again, and we regained our health.

What you can expect from the RAI is a sore throat for a few days afterwards. Mine was almost insignificant; other folks report more discomfort. And, about one week after RAI (give or take) damaged thyroid cells release stored quantities of thyroid hormone. We call this period "dumping" and it makes us more hyper than our normal hyper levels. Your doctor may give you instructions to take additional medication during this time. Sometimes, though, people do not need added medication. Again, it’s up to the doctor. After three or four days of the dumping, you should expect to see gradual improvement in how you feel. We can expect to go hyPOthyroid after RAI( and surgery),but this is handled by taking one replacement hormone pill a day. This pill is chemically identical to our body’s own T4 (thyroxin — thyroid hormone), is used in the same way.

If you have other questions, please feel free to ask.

[Bobbi]

in reply to: HAD RAI Treatment at 9am Today #1067205

I was told dumping takes place at "give or take" a week after RAI. Whether it is sooner, or later, for you, it is good that your doctor gave you instructions for how to increase the beta blocker during that time. They can make you feel more comfortable.

I had RAI the week before Thanksgiving, about 13 years ago. I remember that I was feeling pretty decent by Christmas, although a bit tired.

Wishing you good luck, and good health soon,

[Bobbi]

in reply to: This weakness has me worried #1067225

We lose muscle while hyperthyroid, but muscle slowly comes back after we regain normal levels of thyroid hormone. Also, excess amounts of thyroid hormone interfere with the functioning of what muscle we do have, so it does not work well. The combination leads to weakness that should go away once you are appropriately treated. The muscle that comes back is not strong muscle, so once your doctor has cleared you for exercise, you should establish a sensible program of exercise to rebuild your muscle strength. Otherwise, the weakness could persist even though the muscle is back.

If your eyes are dry, you should be putting in drops — the type that are called "artificial tears." You should not allow that dry, scratchy feeling to go on for any length of time. If you should get a scratch on the cornea (a speck of dirt blows in, etc.) , it takes forever to heal when we have dry eyes, so keeping them adequately lubricated is very important. If you are unsure when you are at the store just which products are "artificial tears," you can ask the pharmacist to show you which brands to select from. They come in different "strengths", including one that is a bit like petroleum jelly consistency for night time use.

Good luck,

[Bobbi]

in reply to: RAI Dosing? Please help! #1067228

If your daughter had the uptake and scan, the nuclear med doc does not need to feel her thyroid to know how big it is — that already showed up on the scan.

It does sound like the nuclear med doc was less than diplomatic. But given the information at his/her disposal, the dose calculation may indeed be somewhat automatic. Or he may have reviewed your daughter’s results prior to the conversation and arrived at his calculations before you asked the question.

But, no the typical goal is not to try for euthroid. That is incredibly difficult to achieve. And when it falls short, the patient remains hyperthyroid. Even if it IS achieved, it does not mean it is permanent. The disease is caused by antibodies — and antibody levels rise and fall for no well-understood reason. The only way to prevent hyperthyroidism again is to "ablate" — i.e. destroy enough cells to render the patient hypothyroid. Then, a dose or replacement hormone is used to balance us out.

[Bobbi]

in reply to: Need encouragement on my choice for TX. #1067242

Getting treated, one way or the other, is an absolute requirement. Which one you choose depends upon you and your doctor.

It is not uncommon to go on the methimazole (or PTU) with the diagnosis. The thyroid not only makes thyroid hormone, it also stores it for future use. (This is basically what is released during "dumping" after RAI — the stored thyroid hormone. The damaged cells are not making much "new" hormone any longer, as they die out, but they do dump their stored supplies.) So, going on an ATD like methimazole can lower the overall amount of thyroid hormone available to the body, and make us safer and more comfortable post-RAI. That said, typically we do have to go off the ATD a week or so prior to RAI. That is to open up thyroid cells to the radioactive iodine. If the cells are blocked with the ATD chemical, they cannot take up as much iodine. So the whole thing is a balancing act. They want to get the overall levels of thyroid hormone down, but allow for enough RAI to get into the cells to do the work it needs to do.

The methimazole does start working instantly to block the production of new thyroid hormone, but you may not feel it right away because the stored supplies are still available and being released. It can take a week or two to "feel" a change.

Given your symptoms, your doctor may have instructed you not to exercise. (You may not even feel like it!) But if you have a rocking chair, you could sit and rock, and that can provide the muscles with some, small "exercise." I also did gentle stretches when I couldn’t walk well, to keep my leg muscles "toned." I don’t know if it did much, but I felt like I was working to keep me healthier, when I couldn’t strength the muscles any other way.

I do hope your treatment goes smoothly, whichever one you choose, and that you are feeling better soon.

[Bobbi]

in reply to: Countdown to RAI….. #1067231

Her doctor would need to know about the flight home issues, if for no other reason than to give her a signed note to hand to the TSA officers screening passengers. It doesn’t happen often, but at least one person posting to this board in the past set off the radiation detector at their airport. It was recommended at that time that recent RAI patients get a note explaining the treatment. Whether it is OK to be on a plane with others that soon after RAI is also the doctor’s call.

Being hyperthyroid is truly awful on the body. She has to get the proper fix as soon as possible, whatever that fix is. It’s one thing if the ATD is working well, as you have apparently experienced. But since that is not the case with your daughter, she is wise to pursue another course of treatment. While we are hyperthyroid we lose bone and we lose muscle. The heart is muscle. You don’t want her heart weakened. And losing other muscle LOWERS our metabolism so that we cannot eat as much without gaining weight. Typically, effective treatment for the hyperthyroidism, over time, causes weight issues to normalize, but there is an initial rise in weight typically. But we have to work to regain strong muscle — by exercising once our doctors clear us for that.

I have never heard of the scan lowering, permanently, thyroid levels. If the fix were that easy, we would all love it. The scan iodine is a different form of radioactive iodine, which exists for an extremely short period of time. And, the measured dose is small. It does not damage thyroid cells. So, no, don’t cling to that possibility.

[Bobbi]

in reply to: 2 1/2 post RAI..feelin’ good. #1067236

Oh, yes, LIz, being on prednisone really causes the nerve jangles and insomnia. It’s like a double whammy when we are still hyperthyroid.

I do hope you are feeling much better soon.

[Bobbi]

in reply to: New to Graves and struggling with life… #1075401

Well, I didn’t do such a great job with that Anniess.

Essentially, to post a new question, there is a "New Topic" button at the top of the list of posted questions when you enter the NGDF.org list.

As to whether or not you can go hyperthyroid after successful RAI, yes. If sufficient thyroid cells remain after RAI, then they can be revved up by antibodies, and they can make the dose of replacement hormone you are on too much. And, thyroid cells can die off (that is the natural progression of the antibody attack), so that you might need more replacement hormone than you are used to. That is why we need to be checked at least once a year: most of the time things tend to be stable, but conditions have been known to change.

I hope you are feeling better, soon.

[Bobbi]

in reply to: New to Graves and struggling with life… #1075400

"anniess":1nplntv6 wrote:

Would somebody tell me how to ask a question on this site? Here is my question: can my thyroid go overactive again once I have taken the radioactive isotope? I took the isotope in 1993 or 1994 and have been on thyroid replacement hormone successfully since then. But now I require ever-decreasing amount of hormone, and my doctor noticed an increase in the size of my thyroid. (I went from 90mg of Armour Thyroid to 100 mcg Levothyroixine and my TSH is at 0.089. All my doctor wants me to do is be rechecked in six months. Should I see a specialist before then?) I am worried. Thanks for your advice.[/quote:1nplntv6]

[Bobbi]

in reply to: EYE DISEASE #1067245

Since the development of soft imaging techniques (MRI, ultra sound, etc.) doctors are finding more and more of us with "some" eye muscle changes (due to the processes involved with TED). In one article I read, it was thought that all of us could have "some" eye muscle changes. But the vast majority of us do not develop the horrible eye disease. We may get some symptoms, but not the debilitating, disfiguring ones.

Dry eyes go hand in hand with thyroid diseases, for some reaons. Be sure that you are putting artificial tears in your eyes to counteract the dryness. These are not the "get the red out" types of drops, nor are they the drops for allergic conditions. There are a variety of products, some thicker than others. But keeping your eyes well-lubricated can help prevent damage to the corneas.

Wishing you well,

[Bobbi]

in reply to: Graves Diagnosis but no distressing symptoms #1067247

Taking the ATDs can be a temporary measure that insures that your levels of thyroid hormone remain normal until you have had time to come to terms with your condition. Seeing an endo, given your swings between hypo and hyper is undoubtedly a really good idea. But do not put off the meds while you wait. The blood test is definitive for hyperthyroid. It definitely shows whether or not you have too much thyroid hormone in your body. And if you do have too much, you are losing bone and muscle, and you risk heart problems. The ATD can effectively counteract these side effects.

[Bobbi]

in reply to: Thryoid Arterial Embolization? #1067250

I wasn’t at the conference, so one of the folks who attended will have to answer that part of your question.

To address another part: there are no medical interventions with no complications or side effects. This procedure involves threading a catheter from the femoral artery in the leg into the arteries of the thyroid. Then a foreign substance ( something I believe was called polyvinyl alcohol particles — and my spelling is probably wrong) is injected into those arteries in order to block the flow of blood to thyroid cells. Patients are given local anesthesia to facilitate the procedure and drugs (antibiotics, steroids) to counteract side effects. Side effects in the study that I read were not life threatening, but patients did have other side effects (fever, sore throat, transient hypocalcemia (sp?) )despite the drugs administered. And several of the patients in the study had to have a thyroidectomy after going through the procedure because it did not help sufficiently. So, as with any other possible medical intervention for hyperthyroidism, the pros and cons of the procedure must be carefully weighed.

I have not been able to find out how many patients this procedure has been tried on. The study I read (published in 2002) had 22 participants, selected from people who could not tolerate the other, more traditional treatment options . So, while it may be a possible new treatment to choose from, I am not sure how soon it will become more widely used.

[Bobbi]

in reply to: New Here and this is what has been going on ! #1067253

Hi, and welcome to our board.

Having the Graves opthamopathy does not mean that you definitely will become hyperthyroid: some people have the eye disease all by itself or in conjunction with some other thyroid problem. But it does mean that your doctor needs to check thyroid function routinely. This is done by a simple blood test usually. If the blood test shows things are "off," then you would be sent for other, more thorough imaging types of tests.

Typically, blood test results come back within a few days. So if it has been longer than a few days since you had the tests done that the endo ordered, call the office back and ask to speak to a nurse, and ask what the results were. Also, ask that you be sent a copy of the results. Those tests are yours and you have a right to a copy. On the copy of those tests, the labs typically have a section indicating whether or not the results are normal or abnormal, and if they are abnormal whether they are abnormally high or low. This will help you to understand your doctor’s recommendations. I did not do this when I first became ill, and the doctor totally misread my lab results and told me that I was fine when I wasn’t. I doubt that your endo will do this, but, just in case, it is a good idea for you to see results first hand for yourself.

My second suggestion is that if those tests show normal thyroid levels, you give your doctor just a wee push, and ask them to please find out what IS going on. Why doctors sometimes need this push I do not know, but they sometimes assume that if a test shows nothing wrong, we need to be satified with a non-answer. When we’re feeling miserable, we need an answer that gives direction to how to fix things. While the pressures from the eye muscles might be causing headaches, etc., it is also possible for someone to have more than one disease at a time, and it is important to find out what is making you miserable.

I do hope you are feeling better soon.

[Bobbi]

in reply to: WBC low…what’s next? #1067256

Antibody levels change for no well-understood reason. So, someone can indeed experience fluctuations which require changes in the dose of ATD. The WBC lowering dramatically, though, is a worry — especially going into flu season. Typically, going off the ATD allows the white cell count to revert to normal, but your doctor may want to check again.

As to whether or not this spells the end of the ATDs for you is really for you to discuss with your doctor. I have no clue whether if it happens once it is 1)likely to happen again or 2) whether your doctor will be willing for you to risk it.

I hope you are feeling better soon.

[Bobbi]

in reply to: Grave and Bulging eyes #1067270

In my opinion, you will likely experience more control once your thyroid is gone, and you are on a stable dose of replacement. We are only "technically" hypothyroid — i.e. we would be hypo most definitely without the replacement hormone. With the replacement hormone pill at the proper dose, we have normal levels of thyroid.

People see weight gain on PTU as well as after thyroidectomy as lost muscle comes back. And as the body’s metabolism normalizes. RAI is no different, although the time lapse between it and actually being able to go on replacement hormone varies, and that can come into play. But as long as you eat wisely, your weight issues should become normal over time.

RAI has not been shown to "cause" the eye disease to develop. It does, in some cases, aggravate the eye disease. In the article I read in the New England Journal of Medicine, it was thought that since RAI was shown to cause an immune system response, that the increased levels of antibodies temporarily would aggravate eye symptoms in those with the eye disease. That aggravation occured in less than 20% of the patients. In patients with serious eye disease, ANY increase in symptoms can be a severe problem. But in most of us, it is not as big an issue.

I wish you good luck with your choice,

[Author]

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