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in reply to: Just diagnosed w/ Graves – need some reassurance #1170517
A P.S. In case your doctor didn’t warn you: about one week after RAI (give or take) as thyroid cells start to die off, they released their stored supplies of thyroid hormone into your blood, and you will feel really hyper for a while. It is not thyroid storm — in thyroid storm, thyroid cells are continuing to make hormone and dumping it into the body. In this case the cells are dying off, not making new hormone, so the amount of time you feel more hyper than usual is limited to a few days. Some of our doctors give us instructions for increasing the beta blockers for a while. These drugs help to ameliorate the feeling of being hyper, and they protect the heart. But not all of us need to be on these drugs, so if you aren’t on them, don’t worry. Just be prepared for more hyper for a bit of time.
in reply to: Just diagnosed w/ Graves – need some reassurance #1170516We all make the radiation dose into a really big thing. But it isn’t. Think of the dental tech that has to leave the room to turn on the xray machine to look at your teeth. It isn’t that the dose of radiation on that xray is so high as to endanger her/him. It’s that radiation doses accumulate over a lifetime, and today’s dental xray is added to all the dental xrays that he/she performs in the course of her job. THAT might put her over the top eventually, so she leaves the room. The recommendations are to help keep unnecessary radiation away from other people. That’s all. You are not glowing, and you don’t need to fret about the distance you maintain from your coworkers unless you have them very close to your neck. Don’t hold small animals or people against your neck for a while. Otherwise, relax. You are not Typhoid Mary.
Hi, and welcome to our board.
It doesn’t matter that you have not lost weight — some folks actually gain weight while hyperthyroid. What matters is your blood levels of thyroid hormone…and yours are off/hyper. Basically, the body weight goes back to normal — or near normal — once our thyroid levels are put back into the normal zone and controlled there. If you are eating properly, in the proper portions, you should be just fine. There may be “some” fluctuation, but it should not be anything extreme if you are watching what you eat, and getting appropriate exercise once your doctor clears you for it. But while you are hyper, and your heart rate is elevated, exercise can be dangerous. So, wait for your doctor to give you permission to go back any strenuous exercise.
in reply to: Diagnosed yesterday as having GD #1170456After reading the last post, I realize that a comment I made could be misunderstood, Ginger. I do consider my doctors my best source of advice. But when I am researching online, it is necessary to look for official, medical websites like the Mayo one, rather than any general blog or self-help board.
in reply to: ELECTRONIC READERS-Kindle, Nook etc #1170471The main issue for us with the ereaders, Shirley, is whether they are backlit or not. Some (the iPad type of thing) are backlit, like the computer screen. This is thought to be harder on the eyes than a reader like the Nook or Kindle which requires an external source of light. So those of us with the eye issues often find it harder to use the iPad as an e-reader. Also, backlit screens are sometimes difficult to see in sunlight. The Kindles and (I think) Nooks work just fine out-of-doors.
If you are trying to find an ereader to buy, it would be better to look at both Nooks and Kindles, and figure out which one has the features you prefer. I love my Kindle, but I didn’t comparison shop — my husband gave it to me for an anniversary present.
in reply to: Diagnosed yesterday as having GD #1170452I checked out that source you supplied, Ginger, and I have some difficulties with it. I’ll supply a couple of counter-arguments to two of the things I read there.
First: The usual purpose of RAI is to make us hypothyroid. It isn’t a “side effect.” Yes, some doctors will try to give us just enough RAI to make us “euthroid” (i.e. have normal levels of thyroid hormone). It doesn’t work most of the time. By “work” I mean, we either are not given enough to eliminate the hyperthyroid condition and continue with the hyper problems, or we are given too much and we become hypothyroid. It is extremely difficult to find THE dose of RAI that will leave a patient euthroid. So, most of us opt to “ablate” (destroy) the thyroid and go directly to hypothyroid, and be placed on replacement hormone.
Second: ANYBODY with one autoimmune disease (regardless of what it is) is more likely to develop a second autoimmune disease than someone in the normal population. The increase in likelihood isn’t huge, but it is, apparently, statistically significant. So, since you’ve been diagnosed with Graves, you carry that extra, slight possibility even if you choose surgical removal of your thyroid or ATD (antithyroid drugs).
We need to be VERY careful what information sites we use online. Anyone can say anything. Anyone can take a picture that makes them look like a doctor and say anything. A study done a few years ago, found that 80% of “medical” information on the web was wrong, and some of it dangerously so. So, get your major info from “official” sites — the Mayo Clinic for example is a good site for information on TED. That sort of thing.
Second, with boards like ours, keep in mind that the majority of people posting are newly diagnosed, like you. Or people who are suffering complications. People who get well go back to living their lives – they do not spend hours a day on bulletin boards dedicated to sickness. That said, Ski and Kimberly and I have gotten well. We stick around to try to add a bit of perspective. The Graves Foundation insists that support group moderators (whether online or in real groups) be from the pool of individuals who have gotten well again for that very reason.
As for your eyes, and your worries there. Some changes we experience with our eyes have to do with elevated levels of thyroid hormone. These go away once we are returned to normal levels. For instance, the upper eye lids tend to “retract” (pull tight) when we have too much thyroid hormone. This gives the appearance of protuberance, that “Graves stare.” But it isn’t necessarily the eye disease. Typically once we are restored to normal levels, that stare goes away. Thyroid disease also causes chemical changes in the quality of our tears. Normal tears are viscous (gooey might be a good substitute for that bit of medicalese), and sit on the eyeball, lubricating it constantly. But with thyroid disease, our tears become watery, runny, and do not stay on the eyeball lubricating it. As a result, our eyes dry out and the body manufactures MORE tears to try to compensate, but they do not work as well as normal tears did. Since you are experiencing this you need to get some “artificial tears,” available in your grocery store or pharmacy, and make sure to apply them regularly, especially when your eyes feel dry, but more often, if possible. These drops are not the “get the red out” types of drops, nor are they the drops marketed for allergic problems. They are “artificial tears.” Some come in one-dose packets (which seem to be favored by our doctors because they contain no preservatives), others come in multi-dose containers (which are cheaper). Regardless, using the artificial tears will protect your eyes from scratches. Dry eyes do not heal well from scratches. I spent MONTHS once with a scratch on my cornea because I would forget the artificial tears after a couple of weeks and the healing would be put back.
To answer another question you asked — it is not the norm for us to experience multiple “hot” phases of the eye disease. It is theoretically possible, but not likely.
in reply to: RAI Questions #1170417I have to emphasize what Kimberly pointed out about the predominance of sick people on these websites. If you go back through our archived posts, you will see that the stories remain the same, but the names of the people posting change every few months. Only rarely do we get someone posting here who has gotten well again. We DO see that, but not often. Once people get well, and get back to living their daily lives, they do not spend time reading these bulletin boards.
That said, both Ski and I, as moderators here, had RAI. And we got well again. It took longer for Ski than it did for me. I was given an “ablative” dose of RAI. What that means is that my doctor, with my consent, wanted to eliminate my thyroid. Ski’s nuclear med doctor, without her consent if I remember correctly, decided to try to give her a dose that would make her “euthroid” (i.e. normal levels of thyroid), and it didn’t work, so she had to have a second round of RAI a while later.
Anyway, RAI does work. It is a process, though, and many people are impatient with that process. For someone who wants more instantaneous results, surgery is quicker, but there are also other side effect considerations to weigh with respect to surgery.
I wish you good luck with your decision. I hope you are feeling much better soon.
in reply to: Low Iodine Diet – I now feel better!! #1170278I hope you are on the mend, and permanently, soon. I’m sorry you are feeling so crumby right now, though.
Hi, Suzanne and welcome.
The only way to know what is a “normal” level of thyroid is to get a copy of your blood test report and look at it. Different labs will have slightly different ranges of normal because they may use slightly different analyzing techniques. When you look at the test, there will be a number for where your test fell, and then there will be — typically – some sort of indicator whether it is “in range” or “out of range” (and if out of range, whether it is high or low).
There are a few bits of terminology that you need to learn that will help you to understand more of what your doctor is saying. Here are some of them:
T4 (and “free T4) – refer to a thyroid hormone molecule with four atoms of iodine in it.
T3 (and “free” T3) – refer to a thyroid hormone molecule with three atoms of iodine in it.
The “free” reference indicates whether the test was looking for molecules that were “free” to enter into cell metabolic activities. It is not always necessary to look for free hormone.
TSH refers to Thyroid Stimulating Hormone. This is a hormone that comes from the pituitary gland, which acts as a “thermostat” on our thyroid cells’ hormone production. If the pituitary detects too high a level of thyroid hormone, it will lower its production of TSH. If it detects too little thyroid hormone, it will raise its production of TSH. It helps to think of a seesaw with thyroid hormones on one end, and the TSH on the other. As one end goes too low, the other raises up higher. So, typically when we are first diagnosed, out thyroid levels are high, and our TSH levels are very low, sometimes undetectably low.
The other term you might see on this board is ATD, which is shorthand for “antithyroid drug.” Methimazole and PTU are antithyroid drugs in the U.S. When we take them, they produce a chemical block to the production of thyroid hormone. We have to take just the right dose of an ATD to block enough thyroid hormone to keep us from being hyperthyroid, but not so much as to make us hypothyroid. So, when we are first diagnosed, there likely will be frequent adjustments of the drug necessary.
I hope this helps.
in reply to: I wanna cry plz help… #1170380Kneenah, you need to get your doctor — even a GP — to translate the medicalese into ordinary English. We might try to translate, and it might even sound OK, but it might not be the right interpretation. So, at your next appointment, take the results and have the doctor give you the translation.
I understand how utterly frustrated you are right now, but I would caution you to focus on understanding what your doctors are saying, make sure you understand, and make sure that they are continuing to commit to figuring out what is causing the symptoms you have. If you insist on a diagnosis, and it truly isn’t what is causing the problem, then often the doctor will stop working on what IS causing the problem. And that is no help whatsoever. You need to find out what IS causing the symptoms.
There are patients who have both Graves/hyperthyroid and Hashimotos/hypothyroid antibodies. It complicates their lives immensely. You might ask your doctor if that is what is going on. But it looks like they are still searching for answers, not committed. So, try to ask questions to clarify things. The fact of the matter is that if you are currently “euthroid,” (i.e. have normal blood levels of thyroid hormone) then it’s possible something else is causing your symptoms.
in reply to: Confusing lab test results #1170347A couple of thoughts came to mind — the first is that TSH typically lags behind our actual thyroid hormone levels. It is a “running average” so at any given point in time your T4 level might be within normal, but if it has been out of normal for a period of time, prior to the test, the TSH will still show lag.
Second. There are no values for T3 in your comments. T4 is a type of hormone that must be converted into T3 in order for the cells to utilize it. Moreover, it is the free T3 that is utilized in the cells. As a lay person, I do not know how to evaluate only using T4 numbers. My non-doctor sense of logic suggests that it might be possible for T4 to be lowish if more than the usual amount of it is being converted by the body into T3. But there could be other explanations, as well.
And, as to your list of symptoms: fatigue is prevalent with hyper as well as hypo. Muscle weakness is a hyper symptom, as well. And some folks who are most definitely hyperthyroid gain weight instead of losing it. Constipation is, typically, hypo. In short, SUBjective symptoms are less reliable a diagnostic tool than the OBjective blood tests, which we, unfortunately, are not qualified to analyze try though we might.
To find the truth, you need a doctor. But I can give you generalizations. When we have thyroid disease, the quality of our tears can change. Normal tears are gooey (the term is viscous, actually, but gooey works) and they stick to the eyeball providing lubrication. We are only aware of these tears when we are crying, but the tears are apparently on the eye, all the time, they just don’t “run.” When we have thyroid disease, tears run out of the eye much more frequently. It is, in part, due to the fact that our less gooey tears don’t lubricate our eyes as well as the normal tears did. They do not sit on the eye, unknown to us. They run. So, the eye dries out, and more tears are formed as the body tries to keep the eyes from feeling dry, itchy, what have you. So, the first thing you should do, if you are noticing unusually runny tears, is to get yourself some artificial tears at your local grocery or pharmacy store. This is a protective measure. If your tearing issues ultimately turn out to be allergies, you have done no harm. But if you have thyroid eyes/tears, then you will be helping to protect your corneas from scratches that can occur from the eyes drying out too much. It seems counter-intuitive, I know, to suggest that you put more drops in your eyes when you are seeing tears pretty constantly, but it can be an indication that your eyes are dry. And, these are not the “get the red out” types of drops or those marketed for allergic eye issues. These are “artificial tears.” If you have trouble figuring out which ones to buy from all the choices, consult the pharmacist.
in reply to: Graves Disease &TED difficult time : ( #1170315With the eye disease, you cannot hurt things — so far as I know — by taking other medications. You do need to make sure that whatever meds you are taking do not interfere with one another, but this is true of all meds. To check whether or not any vitamin or supplement you are taking could interfere with your meds, the best person to ask is your pharmacist. I do not know of any problems, but a pharmacist is trained in drug chemistry, and if perchance he/she does NOT know the answer, there are reference materials at hand that they can, and do, use to give us advice.
I took my normal pain reliever when I was in the middle of the eye disease. But, again, check with your pharmacist, because you might be on different meds than I was.
Please try not to panic about the eye disease. I know, that’s easier said than done. I’ve been there, and I panicked. I’m pretty sure every last one of us who have turned up with the disease have panicked early on in the process. But, insofar as you can, take a deep breath and relax, and deliberately DO things that help, in general, to keep you as relaxed as possible: put yourself in situations where you laugh; get some exercise that you enjoy; take warm bubble baths; etc. Getting “some” eye disease does not mean that you will go on to have horrid eye disease. It is totally unpredictable. Deal with what “is,” as far as you are able — not with “what might be.” What “is” is so totally enough to manage; what “might be” is impossible to manage.
Hugs,
in reply to: Levels normal, feel off! #1170328I sometimes wonder if it isn’t a little like post-traumatic stress syndrome. I was at ground zero in Hurricane Andrew, and it took me years not to flinch at the sound of wind or helicopters. Wind was, of course the storm. The helicopters flew over my house on a daily basis with news crews taking photos of the devastation or with supplies. So, with Graves/hyperthyroidism we were so very, hideously ill, and often we were the only ones who knew we were sick. The symptoms of hyper-/hypothyroidism are relatively common to the general population, too. Lots of people have occasional trouble sleeping. Lots of people get stomach issues. Lots of people get constipated. Lots of people have occasional bad moods. ETc. And the vast majority of the time it isn’t Graves . It’s one of the things that makes it hard to get that initial diagnosis. But we know those symptoms and associate it with our illness. So, when the symptom might recur, it’s like we’re thrown back into the dark days again. There is an emotional overlay that can take some time, and rational analysis, to overcome. I was diagnosed and “fixed” about 15 years ago, and I generally feel great, but I think “THYROID!” if I start having symptoms that I associate with hyperthyroidism. It’s a learned response. One positive aspect of having had the disease, for me, however, is that I do not take “health” for granted any more. I savor each day.
in reply to: GD and Quitting Smokeing #1170301I finally was able to quit smoking by recognizing the subtle — and sneaky — ways that my addicted brain tried to get me to start smoking again. I would be in a stressful situation where I normally would have smoked, and suddenly, all these rationalizations would start to come into my thoughts: just one cigarette might help; just one won’t hurt; yada yada. You haven’t been off the cigarettes for that long, and I bet there are residual urges still very much a part of your brain’s patterns. Especially when you are so uncomfortable in a panic attack, it is likely that the old urges will rear up. So, really, really try to hang in there. Over time, the addict brain gives up. But it takes more than a couple of months off the cigarettes to completely get rid of the urges.
Panic attacks have a finite duration — the body cannot sustain the elevated levels of adrenalin or whatever is going on, for more than 15 or 20 minutes. Knowing that helped me to weather the attacks when I was having them due to the Graves. Obviously, it would help if you could figure out how to STOP them from occurring — which is why Ski’s suggestion to have your thyroid levels checked is a good one.
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