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Basically, Darcy, when we are hyperthyroid, our monthly flow becomes shorter and less. The more towards hypothyroid we go the longer, and more intense the flow. I don’t know where you are in the treatment process, but if your endo in watching your thyroid levels, and they are within normal, then you might need to consult a gynecologist for an explanation of what is going on. If, however, your meds are still being adjusted regularly, then perhaps you need to wrap patience around you, like a cloak, and wait it out. This is a “trial by error” sort of thing, and it can take some time, and many adjustments to get our levels just right.
in reply to: ATDs, RAI or TT #1171152Our doctors don’t test antibody levels because, currently, testing those levels does not produce any type of result that allows them to make more educated treatment decisions. Testing the blood for thyroid hormone levels and TSH levels is much more helpful in letting the doctor know what is going on. If testing antibody levels made any type of difference in treatment options it would be done all the time, no matter what the expense.
Any endocrinologist worth the money you pay them, is going to look at blood work to determine whether your treatment levels are appropriate or not. How we feel is not a completely valid indication of whether our levels are off. Before you developed Graves, there were periods of time when you felt tired, or were unable to sleep, or got constipated, or the opposite (cannot spell it:D). Everyone has periods like that. And they probably don’t have wonky thyroids. Conversely, just because you are feeling those symptoms does not mean your thyroid levels are necessarily “off.” They might be. They might be just fine, too. So, those subjective symptoms are not what your doctor will look at. A good doctor will check for you, will order blood tests. But they won’t raise or lower your meds based on anything but numbers.
There are other medicines that you can probably take to help with sleep issues if your thyroid levels are within the normal zone. Going without sleep is the pits. But it isn’t a good idea to tinker with your thyroid meds just to try to get to sleep. Talk to one of your doctors about the problem, and see if you can get an Rx for one of the current sleep meds that work really well.
People fall out of remission because Graves is an autoimmune disease, not because of anything they have done right or wrong. Antibody levels change for no well understood reason. If you know of someone with rheumatoid arthritis, for example, their disease will make them majorly miserable at times, and alleviate at times (remit). People with MS will have periods of rampaging disease, and then periods where the disease remits. It is the nature of an autoimmune disease. Remission, by definition, is a temporary alleviation of symptoms, nothing more.
It’s been quite a while since my RAI, but I think I had to avoid shellfish for a while before the RAI. The reason for this is rather simple: the only place in the body where iodine is used is thyroid cells, and it helps the RAI treatment to work better if those cells are “thirsty” for iodine. If they are loaded with iodine due to a high iodine diet, then less of the treatment form of iodine will make its way into thyroid cells. The RAI is very soluble in water, and any of it that doesn’t get taken into thyroid cells is eliminated from the body within a couple of days.
The RAI dose typically is determined by the level of hyperactivity — measured in the uptake test typically — and the size of the thyroid gland (not the size of the patient). The size of the gland has usually been determined by the scan done after the uptake. So, someone with a smallish thyroid, but a high uptake (as was my case) will have a smaller dose of RAI than someone with a lower uptake and a bigger gland.
in reply to: RAI Questions #1170423Understand, Lisa, that RAI has not been shown to “cause” TED. People develop TED whose thyroids have never yet gone wonky (and therefore, they’ve never done any treatments for hyperthyroidism). Shirley, here on the board, had her thyroid surgically removed, and DECADES later developed TED. It is more likely for us develop our symptoms of TED within about a year or so of getting treatment for hyperthyroid, and thus explains the rush to “blame” one treatment, or another, or blame going hypothyroid. The mechanisms are just not well-understood. At one point I read, in a Thyroid Foundation bulletin that with the advent of soft-tissue imaging capability doctors were finding so many of us with “some” eye muscle swelling, that they thought it was possible that all of us have “some” TED. Kimberly has kept a file of some of the studies, and will probably post the links for you, but it seems to me to be all speculation at this point in time. I got treated for Graves in late 1996. At that point in time the eye disease was still called “GRAVES” opthamopathy. Since then, its name has been changed to THYROID-related opthamopathy, and the explanation given to me by my opthamologist was that the name had changed because they were finding it in people with thyroid issues unrelated to Graves.
So, the bottom line is that you should work with your doctors to determine which treatment option will rid you of your hyperthyroidism with the best chance of success and the least impact on your overall health. Don’t pick an option solely based on trying to avoid the eye disease. If you already exhibited serious eye disease, then treatment decisions weigh that into the mix. Otherwise, your other health issues are the dominant consideration typically.
in reply to: Cancer Risks of Radioactive Iodine Treatment #1171064You need to look at studies that involve the radioactive iodine treatment, not other forms of radiation. And, if you look at a study, you need to look at how many people were “participants.” Kimberly has given you some to look at, including the one that looked at 35,000 people. That is a statistically significant number.
Before we had our modern treatment options for hyperthyroidism, approximately 50% of the patients died. Keep that in mind, and know that ALL of our options are safer than that by a long shot. If you cannot take ATDs, then choose one of the other options.
in reply to: Tapazole not working now what?!!! #1170946At one point in time, I had almost all of the various “complications” of Graves. I had a moderate form of the eye disease and pretibial myxedema, in addition to the wonky thyroid.
If you have the eye disease already, there are (conflicting) studies which suggest that RAI can aggravate it. In some cases (which is why there’s no clear-cut answer). RAI doesn’t cause TED, but the symptoms of it sometimes worsen temporarily. Taking a course of steroids while doing RAI, apparently avoids the worsening issue. Surgery has not been shown to worsen the eyes, but surgery has it’s own pros and cons, and must be evaluated case by case.
As to “being” hypo. I am not hypo because I have normal thyroid levels. Hypothyroid is a technical term that means you have lower-than-normal levels of thyroid hormone. The replacement hormone we take IS thyroid hormone. It is chemically identical to the body’s own T4 (thyroxin). So, provided we are on an appropriate dose of it, we are not hypothyroid. I have been mildly hypothyroid from time to time in the past 15 years (needing an uptick in replacement dose), and have not felt horrid. In some cases, I didn’t even know I was hypothyroid. I know some folks have made an industry out of complaining about replacement hormone not being sufficient, because they don’t feel the way they think they should feel, but in my case — and in my mother’s case, and in the case of lots of my friends, including folks who have had thyroid cancer and all of their thyroids are gone — the replacement hormone works wonderfully well.
I mentioned my case in response to someone for whom the antithyroid meds were not working. That person continued to be ill. That makes little to no sense, because alternative treatments can work to return us to health. Since you haven’t tried the drugs yet, phuffman39, it is possible that they might work for you. They do work for lots of folks. But if they don’t, of if your doctor strongly recommends something else – for medical reasons that have to do with YOU — you don’t need to be afraid of losing your thyroid.
in reply to: Another labs question #1171041You won’t necessarily feel a low WBC count unless you pick up an infection and cannot fight it off. You wouldn’t want to wait until you “felt” it…..
As to liver issues, that’s a question for your doctors. If you are turning yellow, that’s a real indication that your liver is in peril. And, again, I don’t think you want to wait that long. But there might be slight elevations in liver enzymes that your doctor will tell you are OK.
in reply to: How Long Can I Expect to be Hypothyroid #1171044Just to add to Kimberly’s explanation — it doesn’t take weeks for the replacement to start to work. It is working right now. And, hopefully, building up. But you might need — ultimately — a slightly different dose, whether bigger or smaller. And you must be on a single dose for a minimum of six weeks (but preferably three months) before your blood tests will be an accurate portrayal of whether the dose is appropriate.
I think we sometimes think that the pill will make us feel well instantly. It does not. And it takes time AT normal levels of thyroid hormone for our body to heal from the months of wonky thyroid levels that it has endured.
Know that you will feel OK again. We do get well. We do feel well again. But it takes some time.
in reply to: I can’t stop yelling…rant. Sorry. #1171024Oh, wow, jrs, I’m sorry, but this is unfortunately one of those times when you have to wrap patience around you like a cloak. You’re only one month into the RAI. And, it’s good that you are feeling better. Even a little bit. Basically, what happens when we get the RAI is that our thyroid levels are all over the map for a while. You mentioned being incredibly hyper, briefly, for instance. Yes. As the damaged thyroid cells die off, they release hormone all at once. And then, you start to be depleted in hormone: hypo. Where you spent a lot of time in the past year. Until your thyroid levels are controlled in the normal zone, your body cannot “heal.” Our bodies are resilient. They do heal, but it takes time.
So. The yelling stuff. Maybe there is something you can do to put a bit of a wall between your emotional reactions and your verbalization. My parenting mantra — even without the Graves — was “I am the adult, he/she is the child.” Which I often had to repeat under my breath many, many times. Even before the Graves. Can you figure out some of the triggers and devise a plan for avoiding them? Don’t focus on your eight-year-old not listening (in general). Eight year olds don’t listen typically. That isn’t the problem. The problem is that you are having trouble coping these days. So, what is going on that he isn’t listening about? If you get my drift. Can you restructure things, in advance, to avoid the problem. Is whatever it is something that you can ignore — at least for the next few months? Can you remove the trigger altogether? (For example, right now the wind chimes are beating on your last nerve. Take them down. It’s temporary, but probably necessary.) If your son’s behavior while you are getting dinner ready (I called it the “arsenic hour.”) is a part of the problem, can you do dinner prep while he is at school, and refrigerate it? These may not be perfect examples of your situation, but they may help you to figure your way through things. At least I hope so.
This emotional issue we have is temporary. Our hormones are majorly out of whack, and it takes its toll. But our behavior can have long-lasting impact. And we can control our behavior, some of the time at least, by recognizing what is going on, and analyzing how to adjust ourselves to it.
And, last, if yelling is inevitable, I find it helpful to send “I” messages, and not “YOU!” messages. It minimizes the damage to the other person’s ego while getting the frustrations out. It is a statement of fact, rather than an attack on the person. Example: one busy day, my gardening work had been interrupted, and I hadn’t had a chance to put the gardening tools away. When my husband came home from work he said, “You never pick up the garden tools.” My response was, “Yes, I do. I pick them up all the time!!! I pick EVERYTHING up all the time!!!” Well, obviously, not that day. Now if my husband has accurately described HIS problem with an “I” message (“It really upsets me to find expensive tools lying around in the dirt outside…..”) I would have immediately apologized instead of trying to defend myself. So, when I was in the throes of Graves, I made sure to verbalize my outbursts with “I” messages. Typically, it was yelling something like, “I know this isn’t your fault, but I cannot cope with this dinner mess.” Or whatever. Jake, one of our first moderators, reported that he would yell “I love you” before whatever was getting on his nerves. “I” messages help.
in reply to: Is it still Graves after RAI? #1171014What does it mean “to have Graves” once our thyroids are removed? That really is the issue. And it is a debate intimately dependent upon how you define things.
What made you SICK was hyperthyroidism, caused by the Graves antibodies. So, if “having Graves” means “being” sick to you, feeling awful, then, no, you probably don’t “have” Graves any more. Without the thyroid to mess up your body’s metabolism, the Graves antibodies cannot do more harm to your health.
Yes, you have to take medication to have normal thyroid hormone levels. So, if that is what you consider “having Graves,” then you still have it.
Obviously, those of us with pretibial myxedema (which included me at one time), or Graves opthamopathy (TED – ditto) have seen the Graves-related antibodies do more harm than just the wonky thyroid levels. But the vast majority of us don’t get the skin and eye disease.
Personal take: since I don’t have a thyroid, and since the pretibial myxedema is gone, and the eye disease has abated, I consider Graves a part of my medical history, and not a current health devil to be battled.
in reply to: advice needed #1171011Just an added comment: resting heart rate evaluation needs to be compared to the individual’s own “normal.” Some of us have higher heart rates than others of us. Those of us who are athletes, tend to have lower heart rates than people who are not athletes. Some folks with heart disease have lower heart rates than they should have, due to the weakness of the heart muscle….. Unlike blood levels of thyroid hormone — which are typically given in a range — it is not an “absolute” type of thing.
in reply to: Tapazole not working now what?!!! #1170944I’m truly sorry that you have not been able to control things with the tapazole. So, yes, it sounds like you need to turn your mind to either RAI or surgery. Needlessly continuing an ineffective treatment is obviously not wise. Since your doctor has recommended RAI, I will tell you that it works, and that it gave me back my health. It also gave my mother her health back about 25 years before I did it. Long-term studies of RAI recipients have shown it to be safe.
You need good nutrition right now. Eat a well-balanced diet. And, personally, I think it helps in the long run to avoid “empty” calories: any food that does not provide nutrition, or much nutrition, but has a high calorie load. There will be some sites online that will tell you to avoid certain veggies that contain a chemical thought to cause goiter (enlarged thyroids). But it is physically impossible for a human being to eat enough of these foods to make any difference whatsoever. And these foods have good nutrition in them, so avoiding them isn’t wise.
Do NOT take kelp supplements: the iodine content in these supplements is extremely high, and it can throw your thyroid cell function off in unpredictable ways. As a result of this recommendation by my endo, I also avoided sushi that was wrapped in seaweed (kelp), but I don’t know if that was necessary or not.
Prior to RAI, or an uptake and scan test, you will be told by your doctors to avoid seafood/shellfish of certain types for a period of time. Seafood typically contains more iodine than other foods, and for the purpose of the test, or treatment form of RAI, you want your thyroid cells to have room to take in the required medication. This restriction is only a temporary measure. You need some iodine in your diet for a healthy body (unless you completely remove every bit of your thyroid), and you cannot control your graves by trying to eliminate iodine.
in reply to: Possible relapse but bloods only just off #1170929I was diagnosed, and treated, back in 1996 (!!), so I’ve been travelling this road a long time. And I’ve felt really, really good most of that time. What I’ve discovered though is that I cannot tell — even with all this experience — whether my levels are truly off or not with any degree of accuracy. Except for blood tests, and heart rate, our symptoms are mostly SUBjective. Feeling fatigue and anxiousness can be a relatively normal response to stressful times (the holidays, for example). I sort of liken my response to these symptoms as a type of post-traumatic stress reaction: I was so horridly ill hyperthyroid that when I feel ANY group of symptoms that reminds me of it that experience, that I kind of cringe inside. But most of the time, it is something else, and it goes away. It is important to get things checked by the doctor when you suspect you might be hyper, just as you have done. But sometimes we have to wait until the OBjective tests have truly shown what is going on thyroid-wise. Do not tinker with the meds on your own, either. Take them as your doctor directs, even if you think they aren’t quite enough. Or are too much. Why? Because you need to be on a consistent dose of them for long enough prior to a blood test for the test to reveal what is actually going on in your body. If you are tinkering on your own, raising and lowering the dose based on how you feel, you are making the blood tests less reliable. And, you might be making things worse. I do know how hard it is to wait a month or so, thinking that you need more (or less) of the medication. But the only way to know whether you are appropriately treating the condition is to follow directions, and wait.
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