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Since the advent of soft-tissue imaging techniques (ultrasound, MRIs, etc.) doctors have found more and more of us to have "some" eye disease, Sue. One article I read suggested that 100% of us could have "some" eye changes due to thyroid eye disease. If there is significant eye disease already present, there is a sound argument against RAI, because in a small percentage of patients there has been shown to be a temporary rise in symptoms of the eye disease after RAI. The study I read suggested that RAI stimulated the immune system temporarily in ways that surgery did not. This same study however showed that taking prednisone eliminated all temporary increase in antibodies after RAI. So, if there are reasons why a patient could not do surgery, then RAI might be a possible remedy if prednisone could be tolerated.
Your doctor is going to be able to help you figure your way through this decision. And I wish you good luck.
in reply to: Lab Results, do I have Graves? #1066516Hi, Kaylasly, and welcome to the Board.
I am sorry — but we are not qualified to interpret your lab results, or recommend treatment. We leave that up to the MDs.
in reply to: Scared and Frustrated #1066621One thing that may help is if you try to block your emotions (briefly) from this decision you are making. Make a list of known, factual pros and cons for both RAI and surgery, and try to put things into perspective. Stick as much as you can to facts, not fears. For example: Neither RAI sucess, nor surgical success depends in any way upon a good result with the antithyroid meds. Your endo may try to address your fears about RAI with factual information you need to hear to make a wise choice for yourself. You might shut him/her out if you allow fears to rule.
Second, start researching surgeons in your area. In order to have a safe thyroidectomy, and have the highest chance of not having damage to parathyroids or your voice, you need to go to a surgeon who (1) does a lot of thyroidectomies and (2) has a small percentage of adverse outcomes. Depending upon where you live, that may be easier (or harder) than for someone else. The thyroid cancer support group (ThyCa) online can provide help with finding a qualified surgeon in your area.
I wish you good luck with your decision, and hope you are soon on the road to good health.
BMSol:
It can be really dangerous to exercise hard while hyperthyroid. The main reason is the heart, because having too much thyroid hormone causes the heart to beat too fast (and it’s inefficient when it is beating too fast), and can cause the rhythm of the heart to go wonky. Arrythmias are very dangerous.
A second reason is that the muscles do not recover as easily from exertion as they would when we are at normal levels, and we can get pulls, sprains, and shin splints.
So, when you feel like the hyper symptoms are returning, even though you are on the antithyroid medication, you should ramp down your exercise levels until you get a blood test. If you are coming off your runs exhausted for a couple of days, your body is telling you that you are doing too much for the moment.
in reply to: RAI treatment #1066535You did ask about the side effects of RAI.
Basically, a sore throat. I didn’t even need to take pain meds for it, although some folks have reported greater pain from a sore throat than I experienced.
And, about one week after RAI, there was a brief period of really intense hyperthyroid symptoms. These lasted two or three days, max. This is a phenomenon we call "dumping" on this board. The thyroid not only makes thyroid hormone, but it stores it for future use. When thyroid cells are dying off after RAI, they "dump" their stored supply of hormone all at once. They are not making new hormone, so the period of time when we feel more hyper than normal is brief. And this is not to be confused with thyroid storm, because in thyroid storm hormone gets dumped willy nilly but new hormone is constantly being made, so there is no limit to the amount of hormone pouring out of the thyroid.
Those are the "side" effects. Some people will tell you that going hypothyroid is a "side effect." I do not because to me that was the PURPOSE of having RAI. And we do not remain hypothyroid forever, because replacement hormone (which is chemically identical to our own thyroxin -T4 ) works to help us maintain normal, euthroid levels of thyroid hormone in our bodies.
As for the swelling in your legs — you should ask your doctor what is going on. If you push a finger down on the swelling, and a dent remains, it is not pretibial myxedema. Pretibial myxedema is not a swelling as much as it is a lumpy growth, if you will. AT least that was my experience with it. The skin becomes more like the rind of an orange. But whether or not it is pretibial myxedema a doctor still needs to diagnose, and possibly treat whatever is going on.
in reply to: Question When to consider eye surgery for graves #1066527Hi, markwagner.
I identified with your post. I could have written it myself a dozen years ago. When my eye disease was causing my vision to fluctuate madly, and I was seeing two opthamologists who were "waiting and seeing" there were days I wanted to tear at my hair. If not cry.
I did use eye patches occasionally. (I absolutely could not drive safely without depth perception. Some folks can, but I could not.)
I can tell you that in my case, the "hot phase" lasted the average amount of time. I am told that it can sometimes linger for 3 years, but apparently the average is about 18-24 months. Once the disease started to abate, my vision improved, as did the "look" of my eyes. For the last 10 years or so, I only get double vision when I am tired, or hypothyroid (i.e. when I’ve needed a dose change of my replacement hormone.)
As far as I know, doctors will not do any type of surgical repair until the hot phase has finished, unless the optic nerve is threatened. The reason for this is that the conditions change back once the hot phase is over. Our symptoms remit. Whether or not they remit completely depends upon how much permanent damage to the muscles during the hot phase. I was told that I undoubtedly had "some" permanent damage at one point: i.e. that I could not expect any complete, pre-Graves remission. But, as I said, the double vision no longers plagues me. So, if I had insisted on surgery to correct my doubling of vision (which, like yours was not helped by prisms), I would have needed yet another operation, after things improved, to fix what the first surgery had done.
I know it is hard, right now. But things may improve greatly once the disease goes into remission. So hang on to that hope.
I wish you well.in reply to: Graves Disease & ADD in Children #1067354Inability to concentrate is one of the prime aspects of being hyperthyroid. We become "scattererd" in our thoughts, and need to work from lists, because memory suffers for a while. (This can also happen if we are truly hypothyroid, as well. Say, for example, after RAI or surgical removal of the thyroid.) So when a diagnosis of Graves comes in after a child has been diagnosed as ADD or ADHD, that ADD diagnosis should be suspect unless the child was given a battery of blood tests to rule out underlying medical issues. A blood test that included thyroid panels, that is. If the medications for ADD are stimulants, my heart goes out to the child who was put through that.
in reply to: Very Sore Feet #1066576Sore feet is not one of the regular symptoms of hyperthyroidism, and it is not to my knowledge associated with the antibodies either. The problem may be that when we are hyperthyroid none of the body’s systems are working properly, and it is possible to cause additional pressure to areas already under stress. In other words, if someone has any underlying problem already, the out-of-whack thyroid hormones can aggravate it.
in reply to: Went hypo..on levoxyl..when does it kick in? #1066726While it is good to be pro-active, susan, you also do not need to be afraid. The levels of hypothyroid that we typically get to are not severe, even if we wait the requested time our doctors suggest. One person’s experience here (mine) — one time, well into my replacement hormone regime, while I was still getting my levels checked every three months, and the dose adjusted, my lab tests showed up with a TSH of almost 13. And I felt just fine. I had no major symptoms of hypothyroid. Now, had I gone from hyper to a TSH of 13 in the first drop, I might have noticed a vast difference in how I felt, but I went from normal levels. Whether or not I would have felt awful, though, is not likely. I’m also pretty sure that if I had been feeling awful and gone in and had that TSH of 13, I would, now, be blaming that level of hypo for how I felt. But since I felt just fine –at a time when I was watching how I felt like a hawk — I have come to believe that we do not need to be afraid of minor levels of hypo.
In addition: How we "feel", subjectively, is not necessarily related to the precise level of TSH that we have. People who loved the way they felt hyperthyroid (and, yes, there are some folks like that) may have a more difficult adjustment to feeling well while normal. They might even report feeling awful while at the low end of "normal." I felt so terribly ill while hyperthyroid, that a minor level of hypo (which allowed me a full night’s sleep) was a welcome change. Regardless. I make this point because I think it is a trap for us to feel that the replacement hormone pill is supposed to make us "feel good." How we "feel" is a subjective thing that depends on a lot more complicated set of conditions than just the TSH alone. And feeling completely well cannot be simply achieved by taking a pill.
The drug you are on is used to control the amount of thyroid hormone that your body makes. It acts as a chemical barrier to the production of thyroid hormone. How much any individual patient may need of this drug is estimated at first by the doctor, and after a few weeks, a blood test is used to determine whether the dose is correct, or needs to be adjusted. When you are on this drug, Tamara, you will need to have blood tests fairly often — at least for a while — to make sure that the dose is correct. If it is too much, you could become (temporarily) hypothyroid; if it is too little, you could remain hyperthyroid.
So, one possibility for your present problem might be that you are on a slightly wrong dose of the antithyroid drug, which will be helped by having your doctor make an adjustment to how much you should be taking. Heavier-than-normal periods, for example, can be a symptom of hypothyroid levels of hormone (too little).
There are, however, other conditions that can cause heavy, frequent periods, too.
So, your best course of action is to call your endocrinologist, to get a blood test. If that blood test shows that your thyroid hormone levels are in the right place, then you need to talk with your OB/Gyn or your GP about the periods to start looking for another reason.
in reply to: OD post-op beginning Day 0,1 #1066602I think it’s absolutely fabulous that you are feeling so well, so soon. Thanks for the update.
in reply to: Question about TSH #1066605I read an essay written by an endocrinologist long ago, which stated that there was a very wide range of "normal" for TSH, and that, as a result, he believed that it would be possible to tinker with someone’s dose of replacement to enhance how they feel, without sending them into either hyper or hypo territory. But in recent years, doctors decided that more of the population becomes hypo as they age than originally thought (and the ranges of normal are based on averages for the population at large), so they adjusted the normal range of TSH accordingly — ie they narrowed it. So I don’t know if the author of the article i read long ago would still consider the range of normal to be wide enough to tinker much.
I have read articles in which a doctor argued that since there are dangers associated with being even slightly hyperthyroid (i.e. bone loss and muscle loss) it makes it more appropriate to find the middle of the range, if possible. Apparently, minor levels of hypothyroid do not carry similar dangers.
in reply to: Scared and Frustrated #1066616It is always scarey to contemplate the removal of the thyroid. Even I had qualms about RAI, and my mother had been made healthy by RAI about twenty five years before I became ill with Graves. I had seen it work, and work well, but I was still very nervous about it.
The main thing you need to keep firmly in mind, as you mull over your options, is that people can live healthy lives without a thyroid. I have several friends who are thyroid cancer survivors, and I never would have been able to tell from their energy levels and overall health. They have had every last vestige (hopefully) of thyroid tissue removed via both surgery AND huge doses of RAI, and yet they thrive on replacement hormone. So, if your experience is leading you to tend towards removing your thyroid, do know that you can expect health as the end result.
I know that the decision you are contemplating is a tough one, and I wish you well.
in reply to: Lessons from Graves’ Disease #1066660If there is one lesson that I got from Graves that I would love to be able to box and pass along, it is this: Give yourself laughter. I discovered, at a moment when I was discouraged, frustrated, sad about what was happening to me, angry with family and friends for not understanding, that laughter made me feel better. I was watching a movie on TV, and it made me laugh. I felt better. Maybe not terrific or normal, just "better." A little less discouraged and frustrated. A lot less angry. And definitely less sad. So, I began to routinely give myself the gift of laughter by deliberately watching movies or programs that would make me laugh. It helped more than I can say.
in reply to: Kimberly is our newest BB Facilitator #1066640It is so great to have you committing to being a "regular." I’ve enjoyed your comments, and look forward to more.
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