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in reply to: Six Years Gone! #1064199
I loved reading your message, Carys. No, this disease doesn’t define us. Thank you so much for telling us all that.
in reply to: Itchiness and funny eyes #1064321Well, I’m glad to hear that the lamp was damaged more than you! That could have been ugly.
As to the itchiness/hives. They are a symptom of an allergic reaction to something. What that something is, however, may be difficult to pin down. They most definitely can be caused by a reaction to a medication; they can also by caused by an over sensitivity to heat/sunlight. You need to discuss them with your doctor. Allergic reactions can get worse over time, not better.
in reply to: Hopefully end in sight! #1064326I wish you good luck with the treatment, teacherhelper.
As far as the steroids taken with RAI go, there was a study a number of years ago (it was reported in a January issue of the NEJM- New England Journal of Medicine — maybe 2001, or thereabouts), that suggested that RAI taken in conjunction with RAI would prevent any temporary worsening of the eye disease symptoms that might be caused by RAI. Since then, I think the study may have fallen into question, but to be on the safe side, many doctors prescribe steroids around the time of RAI in their patients who have significant eye symtoms already.
in reply to: Question about pets/animals #1064334We do not necessarily have a compromised/weak immune system (as with AIDS, for example, or as if we were taking immunosuppressant drugs). If the antibody attack is making you ill — as it was when you were hyperthyroid — then, yes, you might expect to have to be more careful around illness. But if your thyroid levels are controlled in the normal area, and you are otherwise healthy, your immune system will protect you as well as that of a person who did not have Graves.
in reply to: Could use some advice or good thoughts #1064371I certainly can understand, Thila. If I had had a bout with melanoma, I, too, would be somewhat skeptical of RAI, and I would spend quite a bit of time questioning the doctor about it.
As for your specific question about RAI and your high school students. I131 — which is the form of radioactive iodine used in our treatment — is a) very soluble in water and b)relatively short-lived (a half life of 8.1 days). So, because of the solubility issue, any RAI that is not captured by thyroid cells within the first day or so after we take the treatment is excreted from the body, primarily through the urine, but also through saliva and sweat. After a couple of days, any excess RAI is gone, and only the RAI that is left inside thyroid cells remains in the body. We are told take in sufficient fluids, to double flush the toilets for a few days after RAI, and to use plastic eating utensils, not to share anything that goes in the mouth, to double wash sheets, for this reason.
Then, the issue becomes one of the remaining radioactive material which is at our throat level. We are told not to hold small animals or children — because we would be holding them up by our throats, right? We are told to keep a distance of a few feet from adults and older children, for at least a week. After a week, half of the radioactive material in our thyroids is gone. These recommendations are largely to prevent anyone else from receiving a dose of unnecessary radiation. RAI has not been shown to harm US and is unlikely to harm anyone around us, either. But we know that radiation exposures are cumulative over a life –todays’ sunburn adds to yesterdays chest xray, etc. etc. –so we are given specifics to help avoid giving someone else exposure. I mention all of this because many folks time their RAI for a long weekend (unless they have really small children). By the time they go back to work, they have eliminated the excess RAI from their bodies, and they keep a small distance between themselves and co-workers (or students) for the next week.
in reply to: Refresher on Normal Levels please #1064342TSH is a "running" average of our actual thyroid hormone levels. As far as I can tell, that requires it to be slow, especially when we are newly treated. If it has been repressed for months because of too high a level of thyroid, it will take some time for that running average to adjust to the new reality. It is a source of frustration because we want things right YESTERDAY(!) after being sick for so long, and having validation quickly that things right is important to us. But, over all, having a measure that looks at the whole picture — not just one slice of it — as the TSH does, makes more sense to me than looking at one specific thyroid hormone, and the inactive hormone at that. (T4 must be converted into T3 in order for the cells to utilize it.)
And, be very, very careful with the idea of taking cytomel (T3). When you take it, your body is being given a huge boost all at once. It is immediately active(once absorbed) , even if your body doesn’t need the boost at that point in time. It has a very short life span (the half-life is three-quarters of one day), as well. So you are introducing something akin to a high caffeine drink directly into your veins. I tried it, because I was having issues that my endo and I thought might be cleared up by taking it. I was on a half pill of the SMALLEST dose, and it appears to have caused heart issues, over time.
in reply to: Could use some advice or good thoughts #1064368It makes me angry that people are still trying to scare others away from a perfectly good treatment option — i.e. RAI. I do understand why some folks do not want to try it, but if you HAVE to remove your thyroid, please know that RAI has been used for a long, long time and the studies that have been done to actively LOOK for problems arising because of it, haven’t found anything. In fact, one study that looked at the death certificates of people who had had RAI — tens of thousands of death certificates — found that the predominant causes of death in the group could be related to having been hyperthyroid, not to the RAI. If the methimazole is not handling your hyperthyroid issues, you need to try to listen objectively to your doctors, and stop listening to scare mongers on the Web.
As to the possible thyroid cancer issue — if you do find the biopsy results show cancer, there is a really good group on the web for support for you. I cannot remember if the end of the web address is "org" or "com" by the group is ThyCa. My husband had to have a mass biopsied long ago, and the ThyCa folks sent us some very good information.
I wish you good luck.
in reply to: Hair loss post treatment #1064388Hair and nails are a non-essential, as far as the body is concerned, so they are the first to lose nutrients when we become sick and the last to regain them once we are well. The more essential body parts/organs take what they need — if anything is left over, hair and nails are back to being nourished. When we are hypo, our hair falls from the roots in larger chunks than normal. And we do notice this. We do not go bald. The hair grows back, and once we are stabilized at normal thyroid levels again, we stop losing it as quickly.
What to do? Be gentle with the hair, and get very good nutrition. This won’t stop the process of hair loss, but it might well keep it to a minimum.
in reply to: Finally regulated, few questions #1064434My GP told me she felt an "average" of nine months after getting regulated was the time it took folks to feel pretty normal again. That is, at least in part, because it takes the various body parts time to heal from too much thyroid hormone. Sometimes, we expect too much of ourselves, too soon, and that can be discouraging. When I started working out again, I had very little strength in my muscles, and I needed to work up slowly to any semblance of "normal" exercise. So, from that standpoint, it may have taken even a bit longer. Also, we tend to "blame" thyroid issues on anything that feels "off" for a while, forgetting that before we became ill we got tired, cranky, (fill in the blank), too. We forget what true normal — which had ups and downs of its own — felt like.
I’m glad to hear you are feeling better.
in reply to: Doc Inconsistency / TSH issues #1064401The TSH is the "gold standard" with any of our doctors. But there is a significant range associated with normal TSH levels, so some of us feel better –sometimes — in one part of the range, than in another. I personally feel pretty good throughout the range. Tweaks can be made to the dose (i.e. minor changes ) to move our replacement dose around a bit while still being in the normal range. An example of a tweak? At my last annual thyroid checkup, I was within normal, but at the hypo endo of things, and my endo wanted to raise my dose of replacement just a wee bit. She put me on a higher dose four days a week, keeping the lower dose three days a week. It was too big a jump, and sent me off into hyper territory. So, we tweaked things back. I’m splitting doses, taking a different amount on the weekends than I take during the week. That’s an example of tweaking.
I have discovered over the years, that my endo responds much, much better to objective data about my symptoms than subjective ones. She is not going to respond if I say I don’t feel well. The typical answer is "Its not your thyroid." But if I can point out that my heart rate is up, that I’m not sleeping, etc. etc. she will indeed pay attention. So, keeping a symptom log can help if you think things are truly "off."
Addressing your other point: One of the major tenets of a doctor’s training is "First do no harm." If you happen to feel best while slightly hyper, you will definitely find resistance from a good doctor in keeping you at that level. It has been demonstrated, through studies, that even slight levels of hyperness ultimately eat up bone and undermine our hearts. So a doctor would be doing harm if he/she thinks your levels of replacement are too high. I’m not sure the same is true of hypo levels, but it might be.
As to getting copies of your lab reports — I don’t know where you live, but in the U.S. I have never, ever had a doctor refuse to give me a copy of the report. It may be different in other countries, but here, they comply immediately when I ask for a copy, without argument.
in reply to: RAI vs. thyroidectomy #1064423Both RAI and surgery had the same "failure" rate (i.e. need to repeat rate), the last time I checked. About 10% of the time the patient will remain hyper. That is due to the fact that sometimes not enough thyroid tissue is removed. With surgery "some" tissue remains to protect the parathyroids and the nerve the works the vocal chords. In thyroid cancer patients, this remaining tissue is removed via RAI, rather than surgically. With RAI, sometimes the calculations about how much of a dose is needed fails to remove enough thyroid tissue.
in reply to: RAI vs. thyroidectomy #1064421You have been taking in iodine all of your life in foods that you eat — it is an essential ingredient of thyroid hormone. Shellfish and contrast dyes contain other chemical contents besides iodine. I have heard other folks assume that the problems they have with these things are iodine-related, but I truly don’t see how that could be possible.
Anyway, the pros and cons of RAI vs. surgical removal of your thyroid.
RAI is not indicated for anyone who is pregnant, or who plans to get pregnant within six months. The RAI is out of your system before six months is up, but rarely are we completely healthy again by then, and it is always wise to be healthy (if possible) before getting pregnant. Also, our doctors like a few menstrual cycles to pass before we get pregnant, to allow the more mature eggs (which could have received a dose of radiation) to be eliminated.
RAI takes weeks to work completely. Many people see this issue as a true drawback. But RAI has few side effect issues, and does not incur the risks associated with surgery. There is no known increase in thyroid cancers after RAI. In folks with significant thyroid eye disease, RAI may not be advisable, because in a small percentage of cases it has been shown (in one study at least) to temporarily increase the severity of the eye symptoms. It does not CAUSE the eye disease.
Surgery is often the choice of people who have significant eye disease, or who, for other medical reasons, have been advised against RAI. There is a risk of damage to the parathyroid glands which sit on the four ends of the thyroid "butterfly," and the nerve which operates the vocal chords apparently runs through the thyroid, and damage to it can damage your voice. In the hands of a well-qualified surgeon, these risks are minimal. Aside from that there are the general risks associated with general anesthesia and infection that arise with any surgery. But surgery removes thyroid tissue immediately, and the recovery process is typically a few weeks quicker than it is for RAI.
in reply to: Urine flow…5 yr old-Potty talk =) #1064471"Being" hyperthyroid can weaken muscles. I’ve never heard of bladder issues associated with this weakness — more often it is arm or leg strength that folks complain about, or heart issues — but I throw out the possibility to discuss with the doctor.
in reply to: One year check-up, and some questions #1064444Well, for starters, odapoda, find out if you can have copies of your blood tests. In the US, we are allowed that; I don’t know what the protocol is where you live. But it can definitely help you better understand what is going on if you can SEE the results instead of just hearing "normal." That way you can see progress. If things are not quite normal, you will be able to see how much they are off and in which direction (hyper or hypo).
If you are still hovering in the hyper range near normal, or even at a normal range borderline hyper, that could explain why you are still feeling lousy. Even minor levels of hyperthyroid cause us to lose bone and muscle. Slower maybe than if we’re raging hyper, but hyper is bad no matter how minor it is.
Another thing that can be helpful, especially when you are feeling bad, is to take a friend or family member with you to the doctor’s appointment. I have sat in with a friend, who had a list of questions, and I wrote down everything the doctor said. When I typed up the list of responses, and gave it to her, she had forgotten some of the instructions and points. We DO forget. We are stressed; we are feeling lousy; whatever — we can miss points.
Even if you don’t do that, write out your questions, and even hand the doctor the list to make sure that all of your concerns are covered.
in reply to: Normal labs but feeling a little hyper? #1064455Sometimes, early on with a dose change, we can feel a bit jazzed, but after a while things settle in and we feel fine again. So making sure that you are waiting long enough for the pituitary end of things to settle in can be really important — that’s the six to eight week minimum. The TSH is a type of "running average," (i.e. it does not instantaneously show what is the current reality). But, according to my endo, because the lab test for TSH is so finely tuned, the blood tests for TSH are more accurate than the tests for actual thyroid hormone. More accurate? I just mean that the test can detect smaller amounts of it than can be accuratedly detected for the actual thyroid hormones. There can be fluctuations with actual thyroid hormone levels, as well, and the TSH levels those fluctuations off by being that running average. So, while it is annoying to have to wait those weeks when we are feeling somewhat "off," we can rely on the results when we do wait. That is one of the reasons why so many endos want the TSH test, and eventually stop testing for the actual thyroid hormones themselves.
Even though your endo suggested a rather long wait for you to return, the key will be her response when you go back and ask for new blood tests, if you are still feeling hyper-ish. If she suggests that you wait the full three months for the new test, that is one thing. It reflects the time span that it can take for TSH to fully settle in to a dose change. If she wants you to come in, so that she can observe your symptoms a bit, before ordering the new test, that is pretty standard as well. Until an endo really gets to know you, they like to see things for themselves. But if she just ignores your symptoms, and gives you a brush off (unlikely), then you know you might be better off with a different doctor.
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