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in reply to: RAI 14 WEEKS AGO #1062019
No, please, Zach, do not do that. 150 mg is a huge dose of synthroid. It is also three times as much as your doctor recommended. Sythroid IS thyroid hormone. It will make you hyperthyroid if you take too much of it. And you cannot tell how much you need by guessing. It needs to be carefully calibrated. Please talk with your doctor. It could be that he started you out on the conservative side of things, and would be willing to try a higher dose. But it might be that based on your labs, he thinks you won’t need a big dose, andhe’s guessing more or less where he thinks you’ll end up.
in reply to: RAI 14 WEEKS AGO #1062017I’m not sure what you mean, ZachB, by "self-medicating" but if you mean you are tinkering with your dose of synthroid, STOP. I truly do understand that you do not want to feel crumby longer than necessary. None of us do. But the mechanism by which your doctor will be able to find the correct dose of replacement hormone for you requires that you remain on a specific dose long enough for a blood test to measure its effect. This is typically six weeks to three months. If you test too soon, or tinker in between, the blood test results will not be valid. You need the test to be valid to avoid going on a hormonal roller coaster and to get to your own special dose of replacement as quickly as possible.
in reply to: long term effect? #1062004Certainly, there’s no point in fretting about something we cannot change. But there are some known issues for those of us who spent any time hyperthyroid.
First of all, we have lost bone. What this means, going forward, is that we are likely to develop osteoporosis earlier than we would have without the hyperthyroidism. That doesn’t mean we WILL develop it. Some folks have very dense bones and therefore may never have been in line to develop osteoporosis before their deaths. But getting your bone density checked at some point is not a bad idea. A study a few years ago found that a larger percentage of those of us who have been hyperthyroid suffer hip fractures as we age. This is nothing to take lightly. So looking after our bone health is a good thing to do. And taking any calcium supplements if ordered by the doctor. And getting weight bearing exercise on a regular basis. This means walking, jogging, playing tennis, etc. Weight bearing exercise. Swimming, for example, while excellent exercise, will do nothing much for our bone density issues. Riding a bike, ditto, unfortunately. Pumping iron, however, may have some bone density benefit.
in reply to: Post-Thyroidectomy Antibody Levels #1062034The problem with continuing to test for antibodies is that there is no "cure" for the antibodies. When I asked my endo about another antibody test, her response was that antibody levels rise and fall for no well-understood reason. There is no medication to treat specific antibodies, and any treatment for antibodies in general suppresses the entire immune system.
When it comes to the eye disease, most of us do not get horrific eye disease, even if we do not take out the thyroid. Most of us get "some" eye disease. And testing for antibody levels really isn’t going to direct the course of treatment. So, if antibody level tests aren’t going to provide information that will help, why incur the expense?
Obviously, if you want to pay for those tests, it should be your right. Sometimes, though, if a doctor "accepts" a specific insurance, that company’s contract with the doctor limits their ability to order tests beyond what is acceptable to the insurance company. That has happened to me two or three times. It’s frustrating.
in reply to: TED-anyone had a palatal graft to lower eyelids? #1062041You might try sending a PM to Dianne Wiley (sp?)– my spelling may be off, but that is close. I vaguely remember her having some surgery to the lower eyelid, but I don’t know if it was the same one you are talking about.
in reply to: Hyper to Hypo…and now what? #1062046You are assuming that you were "extremely" hypo or hyper, but the doctor’s behavior — at least recently — does not suggest to me that you were. There are individuals who are on a much higher dose of methimazole than 5 mg. According to my drug info, 5 mg. every 8 hours is prescribed for "mild" hyperthyroidism. There are people who are on 10 mg. or even 20 mg. If you had gone "extremely" hypo on 5 mg of methimazole, your doctor would, most likely, have taken you off the drug completely. The fact that he/she didn’t suggests that while you WERE hypo, your doctor felt that only a small change in medication would handle things. Extreme hypo are numbers that we typically don’t see when we’re well-monitored by our physicians. Apparently minor adjustments in your meds are causing more than minor swings in thyroid levels. That is troublesome.
in reply to: Great I have Leukopenia #1062053Thyroid storm is a relatively rare event, so I would suggest that you not actively fret about it. (Yeah, I know, easier said than done, right?) You might try rearranging your life temporarily to really bring down your stress level. Bring in tv dinners. Get some other family member to do the chores for a week. Arrange for entertainment that makes you laugh — like putting on a dvd of a comedy movie that you particularly like. Avoid situations that cause you stress. Does the nightly news make you want to yell at the television? Turn it off. That sort of thing. Your current situation is temporary. But everything you can do to help yourself right now, is a step in a positive direction . As Shirley pointed out, your medical team seems to be working together to provide you with good care.
As to which thyroid removal option is best for you, however, you need to listen very, very carefully to your doctor’s advice. Sometimes we have to do a treatment that is not our primary choice, for very good medical reasons. If you are going to override your doctor’s reasons, you need to be understand about the possible consequences.
I do hope you are feeling much better, and soon.
in reply to: Thyroid storm #1062062I think the main point about thyroid STORM is that the conditions are extreme. I read the link Shirley provided, and all that is true — but we can feel those same symptoms while hyperthyroid, too, so knowing the difference is not necessarily easy. When I was hyperthyroid, walking slowly to my mailbox on the street would elevate my pulse to 120 or so. But, then, if I sat down, it would go back down to a lower (but still too high) level — generally in the 90s. If you are in storm, medical intervention is needed to get the pulse rate down. That’s one example that may help you to understand whether or not your symptoms are just "garden variety" hyper (and awful) or a more serious symptom.
I hope you are feeling better soon
in reply to: Hyper to Hypo…and now what? #1062044You may know some of this info I’m about to give, but in case you don’t, I’m going to cover it all again, anyway, just to be on the safe side.
The methimazole acts as a chemical block to the production of thyroid hormone. We have to take enough of it so that our thyroid levels are "normal". If we take too much, we can become hypothyroid, and if we take too little we can remain hyperthyroid. But that’s all it does.
The reason that the thyroid is wonky in the first place is due to antibodies in the immune system against the thyroid. The methimazole doesn’t affect the levels of antibodies, and these can change for no well-understood reason. Some of us have antibodies that can make us hypothyroid as well as antibodies that can make us hyperthyroid, and that makes for potential swings between the two states. It would be nice if these two different antibodies simply would cancel one another out, but they don’t — at least not always. Whether that is what is happening to you, I have no idea. But because antibodies are the base cause, it is not unusual, especially at first, for someone to have to change their dose of the antithyroid meds from time to time. While you keep your thyroid, the dose of methimazole must be checked because how much you need WILL fluctuate. It probably shouldn’t be fluctuating quite as frequently as you are reporting right now, but it will fluctuate over time.
As to what specifically your test results are showing, we cannot tell. Different labs have different ranges for normal based on how they run their tests. So the best thing for you to do is to get copies of your blood work. EVERY time. On the test result sheet, the lab prints their range of normal, and they also print whether the specific results are out-of-range, high, or low. If you have your results in hand, you will see those normal or out-of-range marks and be able to tell more about what is going on. And, when you get them every time, you will be able to better track the course of your treatment.
I can understand your frustration. One thing I would do in your case would be to talk with my pharmacist about the methimazole. I don’t know much about this drug’s action or interactions with other drugs. But sometimes we can be doing something, unaware that we are interfering with the ability of a medication to do it’s best "work." I’ve never heard of having to be especially careful with how you take methimazole, but it wouldn’t hurt to ask the pharmacist, since the treatment doesn’t seem to be working optimally for you.
in reply to: Is there a better method over all others? #1062105I have just one comment to add. There can be medical reasons why one individual patient should avoid one or more of our treatment options. Usually, we are given a choice — at least at first. But not always. As much as possible, you need to listen carefully when your doctor makes recommendations. Ask follow up questions. In fact, it is sometimes best to take a friend or family member with you to the consultation with the doctor. When someone is ill, it is difficult for them to take in all of the information at one sitting. We forget things; we forget to ask follow-up questions when we don’t quite understand. The process can be overwhelming. So having someone there with us, to listen and take notes can be very helpful.
Wishing you good luck and good health soon.
in reply to: Back to the drawing board… #1062065If you had acute appendicitis, would you say that removing the appendix was "pretending" that the appendix was the problem when in reality the problem was the bacteria growing inside the appendix? There is no pretense about the fact that it is extreme thyroid activity causing hyperthyroidism. Yes, the underlying cause is an antibody . But, by definition, your thyroid is diseased just like that appendix would be diseased in the example. Unfortunately, just as in acute appendicitis there is no way to kill off the bacteria quickly enough and the organ needs to be removed, there is currently no way to selectively treat the antibodies causing hyperthyroidism. Any antibody treatment you might currently be able to choose will suppress your entire immune system, making you vulnerable to all manner of viral and bacterial illness. You would, in effect, be trading one disease state (hyperthyroidism) for another (immune suppression) that might be more difficult to handle.
Remission is, by definition, a temporary cessation of symptoms . In our case, our doctors consider it a true remission if we maintain normal levels of thyroid hormone, without medication, for at least a year. Approximately 20-30% of Graves patients achieve remission once. Approximately 10% of those individuals achieve remission twice. So, translated, that means that out of 100 Graves patients, 20 or 30 will achieve a remissio on the meds. Out of those 20 or 30, when they relapse (and the odds are that they WILL relapse) only 2 or 3 will experience another remission.
in reply to: Hypo- and Hyper- at the same time? #1062078You cannot be hypo and hyper at the same time. The terms refer to the level of thyroid hormone that is in your body: hyper means too much, and hypo means too little thyroid hormone. So being hypo and hyper at the same time is a bit like saying that a gas can is both full and empty at the same time. It is impossible. Because some folks have antibodies for both Hashimoto’s thyroiditis and Graves, they potentially can fluctuate between the two states depending upon which antibodies predominate. Whether that is what is going on in your case or not would depend upon the results of blood tests for antibodies, among other tests.
Typically the "uptake" portion of the test is used to determine how big a dose of RAI would be needed to treat hyperthyroidism. It is the "scan" portion of that same test that shows WHY we are hyperthyroid. (We have been shown to BE hyperthyroid by a blood test, but the blood test doesn’t show why we are hyperthyroid.) If the scan shows that the entire thyroid gland is actively taking in iodine (and making thyroid hormone) then the diagnosis comes back as "Graves."
It is possible to be fooled by subjective symptoms. For example, on the list of symptoms for hypo is "fatigue." Fatigue is also on the list of symptoms for hyper. So, you can be fatigued whether or not you are hyper or hypo. I was never ever as tired while somewhat hypothyroid after treatment as I was while I was actively hyperthyroid. But if I had gone seriously hypo, perhaps I would have felt a similar level of fatigue. Anyway, we have to beware of subjective symptoms (symptoms for which there is no objective test).
in reply to: Need a simple answer…. #1062090The answer is not quite as simple as the question. What makes us SICK is hyperthyroidism. If you have RAI and eliminate the thyroid, you are removing an organ that is making you ill. Hypothyroidism is also an illness state, but it is much easier to "fix" than hyperthyroidism caused by antibody action.
Do we still have Graves disease? Well, we still have the antibodies that made the thyroid act up. And it is not completely known what impact these antibodies have on our eye muscles, and our skin on the legs. Some researchers tie the antibodies that made us hyper directly to the eye muscle problems and the skin problems. Others think that there are different antibodies at play.
So, yes, we may still "have" Graves. But we will no longer be hyperthyroid and ill. And as long as we are on the appropriate level of replacement hormone, we will not be ill at all. Although we might develop the eye disease or pretibial myxedema.
in reply to: hello im new here #1062134Hi, and welcome to the Board.
I’m truly sorry you were not warned that there would be worse symptoms for a while — that is always a horribly fearful time for people. Thyroid cells not only make thyroid hormone, but they store it for future use. When RAI starts to destroy the thyroid cells, they release all of their stored hormone into the blood all at once. So what most likely happened was that you became temporarily way more hyperthyroid than you had been before. Hopefully, you will see steady improvement from here on out.
in reply to: taking Levonyxl #1062188Just arriving at normal levels of TSH and thyroid hormone after RAI or surgery does NOT mean that you will feel normal. Your various body systems suffered damage while you were hyperthyroid. Muscle was lost for example ( and the heart is a muscle). It takes months AT normal levels of thyroid hormone for your body to heal. So be patient, please. Look for "improvement" not any absolute remembered sense of normal, and you will be pleased with the recovery process.
As for asking for T3 numbers. Or antibody levels. Or anything else. Your doctor is likely trying to ask for the most important numbers, the numbers he/she feels best reflects your thyroid issues, not "all" the numbers. This saves your insurance co (or you) $$$ in the long run.
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