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in reply to: Having RAI in 3 weeks…LOTS of Questions… #1067808
Obviously, going off the PTU for three weeks won’t be a picnic, but there are things you can do to make life a bit easier. Your doctor might prescribe a beta blocker during this time and that can alleviate symptoms. Not all of us can take this type of drug, but if you can, it might help. Also, I recommend, strongly, that you listen to your body and treat yourself the way you would want your best friend to be treated if they felt the same way. In other words, if your best friend felt this way, would you urge him/her to run the vacuum, clean the garage, whatever it is that you have decided you absolutely MUST do. If your answer is "no" then you don’t expect if of yourself either. This period of increased frailty is temporary. Pampering yourself through it can help.
Weight issues typically normalize over time. Eating well (i.e. healthy foods in appropriate proportions) will help you to assure that over time your weight balances back to the right spot.
Hair probably will fall out a little more than normal for a while, but not due to the RAI. We do not receive radiation in the percentage that cancer patients do. It is a mild dose localized to the thyroid. But being hypothyroid, and dropping from hyper to hypo, puts the body under enough stress that our hair suffers temporarily. I was shedding as badly as my collies for a while, but I still have a head of thick hair.
As to when you can jog again, ONLY your doctor can tell you. Listen to absolutely no one else. You might, however, be able to do gentler exercise, like walking much sooner. Excessive levels of thyroi dhormone have an adverse effect on muscles, so do listen to them at first. You might need to pull way back to avoid shin splints, etc., even though you will be feeling well. The muscles need to be gently restrengthened typically.
Synthroid, and the other replacement brands, ARE thyroid hormone. They are chemically identical to our own thyroxin, and they are metabolized in the body the way our own thyroxin is metabolized. There is no reason why you should expect to be anything other than normally healthy on the replacement hormone. Eventually (the body needs time to heal). Whether or not you can have future surgeries depends on your overall health, not whether you are taking syntrhoid, etc.
RAI does not increase your chances of developing autoimmune diseases. However, the fact that you already have turned up with one autoimmune, means that you are more likely than a person without autoimmune problems, to develop another autoimmune disease. The increased risk is not huge, but it is statistically significant.
I do wish you good luck with the RAI. Please know that it can make you well, and eliminate the possibility of becoming hyperthyroid again — ever. Long term studies have demonstrated that "being hyperthyroid" carries significant risks for future health. RAI has been shown to be reasonably safe.
in reply to: Hyperthyroidism & Hyperparathyroidism??? #1067805While it is possible for one person to have more than one physical problem at a time, or in sequence, just what is going on must be determined by a physician. We patients are not necessarily well-enough trained to diagnose ourselves. And certainly, if we go online and look up the symptoms to a variety of illnesses, we might very well find ourselves with those symptoms. There is a common problem with early med students, for example, very similar: as they learn more about disease symptoms, they begin to wonder if they could have them.
The thing is, diagnosis is not easy. Doctors, with lots and lots of training, sometimes misdiagnose patients. Even so, I think your best bet is to take these issues up with your doctor. There can be so many different explanations, and people online trying to help, might only muddy things up for you.
I do hpe you are feeling better soon.
in reply to: Greaves..and babies..and greaves and surgery? #1067803His doctor would be the main person to listen to with respect to whether or not his health is good enough to withstand the surgery contemplated. I can say that many of us have healed from the Graves hyperthyroidism problem and gone on to have other surgeries safely. But each individual carries their own group of risks so the doctor must be your main guide.
As to whether or not children would develop Graves: It is understood that there is a genetic "predisposition" to thyroid disease somewhere. A relative might not have had Graves, but might have had other thyroid issues. With Graves, there is no direct genetic link like you would find with things like eye or hair color, etc. But our children are more likely (by a relatively small percentage) to develop thyroid disease than children whose parents have no such problem.
I wish you good luck with your upcoming marriage.
in reply to: Anyone else with muscle pain #1068003One of the effects of too much thyroid hormone is muscle loss (and associated muscle weakness). When we regain normal levels of thyroid hormone, the lost muscle slowly returns, but it is not strong muscle until we have toned it, worked with it.
It is possible when we start feeling well again, to return, immediately, to pre-disease "normal" levels of exercise. This may be a bad idea from the muscle standpoint. Former joggers have complained on the board of shin splints as well as other muscle problems. We need to start out with baby steps, building up exercise levels slowly, and really listen to our bodies. What may have been "normal" prior to hyperthyroidism, may be excessive for a while after you regain normal levels of hormone. An example from my own experience: after RAI I went to an exercise physiologist to get a recommendation for exercise levels. He analyzed my muscle mass, tone, etc. etc., and told me I had eight percent (yes, 8%) of the "normal" strength of a woman my age. Obviously, it took me a while to overcome that deficit, and I could not start out exercising with the same vigor I had before becoming ill.
in reply to: New to Grave’s and think I’m losing my mind! #1067846Hi, and welcome to our board:
Excessive levels of thyroid hormone do indeed interfere with concentration, as well as memory and mood. And just about every other body function. Thyroid hormone is used throughout the body, in perhaps ALL cells, for cell metabolism and when things are out of whack absolutely nothing works quite properly. So, having come through thyroid storm, you can expect to be "off" for a while: you were hit by the metabolic equivalent of a semi truck.
I would recommend that you keep that image in mind when you contemplate your list of "shoulds" for the next few weeks. I.e., ask yourself, "If I had been run over by a truck, would I expect myself to do X? If the answer is "No," or "Do you think I’m crazy???" then you should pull back and resist the temptation to over do. It’s temporary. We do get well again. And we get well faster, typically, if we take steps to reduce activities and pressures in proportion to how we really feel.
Wishing you much better days, and soon.
in reply to: RAI in two weeks… #1067858A P.S. that I forgot to mention:
To my way of thinking, the whole point of RAI or surgery is to make us go hypothyroid. Trying to get us to "euthroid" levels of hormone is a shot in the dark. It sometimes happens, but it is impossible to accurately achieve it in any significant percentage of cases. This is due to the fact that our disease makes changes in thyroid levels so erratic and also because the doseage levels for RAI, while based on some type of math, are not yet an exact science. So, our doctors typically give us enough RAI so that we cannot become hyperthyroid again (i.e. we go hypo). This is called "ablation" of the thyroid.
Replacement hormone is used to raise our thyroid hormone levels back to normal, so that we are not hypo for long.
Good luck,
in reply to: RAI in two weeks… #1067857Hi:
I had to stop PTU one week before the RAI. But I may have been on a much bigger dose (I no longer remember those types of details, it has been so long). I was given 8 millicuries. I was hypo within two months and started on replacement hormone.
I remember being scared at the time, so I empathize with your feelings. The treatment was, however, a bit of a "let-down" after all the stress I put myself under before going into it. I just swallowed a pill. For a week or so, I had a sore throat, but not so sore that I needed medication. (Others have reported more soreness than I experienced.)
About one week after RAI, we go through a period of more intense hyperness, as dying thyroid cells release stored supplies of hormone. But these cells are not making "new" hormone, so this period of being more hyper than usual only lasts a few days.
RAI gave me back my health. I wish you the same, good results.
Even without the sore throat, if you have been ill for a while, and are still sick, you should check with the doctor. A simple blood test can determine if your white cell count is appropriate, and it might be. But you also might need some medications to help you through the illness.
I hope you are feeling better soon.
in reply to: Allergic to methimazole and PTU? …RAI? #1067965Regarding drinking alcoholic beverages while taking antithyroid meds: talk with your doctor, because it might not be a good idea. The ATDs are metabolized in the liver (as is alcohol) and have a known possibility of causing liver problems. Alcoholic beverages can cause liver problems. Taking the two together, especially if you are having hive reactions can show a potential problem.
in reply to: 2 weeks on levoxyl no change? #1068204I think you’ll find your doctor will increase your dose of replacement hormone! To help things along during this time, make sure to take your replacement first thing in the morning, and wait a while before you eat anything. That helps to get the maximum amount of the pill absorbed into your blood.
Good luck,
in reply to: H1N1 vaccination #1067918I agree with Nancy that this is most definitely a question your doctor should answer for you. I will add, however, a bit of my history. I have asthma issues and get the flu shot every year. The year I was on PTU (same immunosuppressive possibilities as Tapazole/etc.) my doctor gave me the flu shot, but divided it into two shots. Whether that made a whit of difference, I have no idea. But that was her solution.
Im not sure I can remember all the questions!
Dumping lasts a very short time — relatively speaking. No, it won’t seem short at the time, but it really doesn’t last long. Essentially, when thyroid cells are destroyed, their stored supplies of hormone are released into the body all at once. The most potent form of thyroid hormone — T3 — has a half-life of three-quarters of one day (18 hours). At the end of 18 hours, half of it is gone. After five half-lives a substance is considered to be "gone", the remaining parts are so negligible, so that means after 3 and 3/4 days that potent, extraT3 is essentially gone. That goes well with my memory of things. My doctor told me to double up on my dose of beta blocker as needed during the dumping period. I took the double dose for two days. T4 has to be broken down in the body to form T3, and has a longer half-life (just shy of a week). So, while the excessive T4 lingers around longer, my memory of things is that after the T3 problem was eliminated there was a gradual dwindling of hyper symptoms over the 5 weeks after RAI.
You should not be pushing yourself now, to answer another one of your questions. You have been diagnosed with a serious illness and you need to be taking good care of yourself. It is temporary. We do get our health back. But if you want to "hurry" things along, so that you can get back to whatever it is you need to do, you need to step back during this treatment time and allow your body some breathing room and time to get about the business of healing. Buying a ready-made birthday cake is not the end of the world. Just this one year. I will give you a real life experience of my own. I had RAI the week before Thanksgiving! Talk about bad times to be out of commission! Anyway, Thanksgiving, I made the turkey and bought absolutely every other item for the family dinner from a gourmet grocery store — ready made. Even at Christmas I was still feeling run down. I got some friends to string the lights on the tree for me. I did not bake cookies or anything else. I put out some decorations and played Christmas music. And I enjoyed my children. My oldest daughter, after the holidays said to me one day, "You know, Mom, you really went all out this Christmas. It was really nice." My jaw dropped! ALL OUT??? It was a beautiful life lesson from my oldest: All those "things" that I had done all those years, all those "special" touches that I felt were so necessary were not. What had been special that Christmas right after my RAI was spending quality time with my kids and enjoying them.
So, cut yourself lots and lots of slack. If your best friend, or your child, felt the way you do, would you demand of him/her that she decorate a birthday cake (or whatever else you think you absolutely "must" be doing)? If the answer is "no" or even a grudging "well, maybe not," don’t you do it either. Treat yourself the way you would want your best friend/child to be treated during this healing time.
I wish you really good luck and good health soon.
in reply to: Any suggestions- Graves’ child behavior #1068034I think counseling is a good idea — but not necessarily just for your daughter. My background is a bit different from yours, because the cause was not Graves in my daughter’s case. But she was acting out, temper tantrum prone, making life as miserable for us as your daughter is for you. I got counseling for both of us. As mamabear suggests forcing someone to see a counselor will not necessarily achieve good results, at least right away. And, in my daughter’s case, I don’t think it did much good at first. BUT. The counseling helped ME immensely in two ways. First, it helped me to identify what my part of the problem was. Yes, our daughter’s behavior was the major stress, but my husband and I were part of the problem based on our response to her behavior. Learning how to separate what was her problem from what was our problem, why we were responding the way we were and how we might change that response, went a long, long way to solving issues. The second way the counseling helped was from the standpoint of the counselor we had for our daughter. While our daughter did not necessarily respond as constructively as I did (because she was, in essence, being forced), that counselor provided my husband and me with significantly helpful observations.
in reply to: looking for help with PTU treatment #1068116Thanks, James and Kimberley, for the update. My free levels were tested early on, so that must have been while I was on PTU. But they were not done all the time: only once or twice. But I am a bit of a dinosaur here: my RAI was (gulp) twelve years ago! So, you are probably right — there is a different scheme of things in today’s treatment world for those of us who are on replacement vs. those of you who are on ATDs.
in reply to: 2 months post RAI and HYPO, HOORAY! #1068076Congradulations, Lacie. You are on the road to health again.
I wouldn’t fret about going to spleep. I learned at one of our conferences about how people who have had thyroid cancer used to ( maybe still do) have to go off the replacement hormone for WEEKS in order to have periodic tests to make sure they didn’t have ANY thyroid cells left. Those folks had their thyroids surgically removed and then had large doses of RAI to try to kill off all thyroid cells. They would go much, much more hypothyroid than you are. I couldn’t imagine how awful that must feel! And it put things a bit into perspective for me.
Take care.
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