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in reply to: Waiting…………. #1169255
The meds you were put on — most likely — were what we call antithyroid medications (or ATDs). They act as a chemical block to the thyroid cells being able to make new thyroid hormone. But the thyroid also has stored supplies of hormone, so it takes a while after starting the pills before we can tell that we are less hyper than we used to be. Your body has to use up the stored supplies first.
The meds (methimazole or PTU, whichever your doctor prescribed) do start working immediately, and they provide some people with total relief from their hyperness. Kimberly, one of our moderators, has been on them for quite some time.
As far as the weight goes, it does seem unfair, I know, when you gain rather than lose while hyper. But the main reason we lose (or gain) weight is that we lose actual muscle while hyper, in addition to the revved metabolism, and having muscle means we can eat more without gaining weight. You undoubtedly feel weak right now, too, yes? So, when your thyroid levels get normal again, some, if not all, of that muscle starts to slowly come back. Those of us who lost weight see weight gain. And you might, too, temporarily. Muscle weighs more than other tissues. But it’s GOOD weight to gain, because it raises your metabolism. The typical pattern is for our weight issues to go back to normal over a period of time. Some of us have more trouble than others regaining our normal weight. You may have to be really careful for a while about what you are eating.
in reply to: New to this… #1169250When we go in for RAI, we have to go off the meds for a week or so, and a good part of what you are currently feeling is what it’s like to be really hyper — it is awful, I know. But you have taken a step towards being well again, permanently — at least as far as thyroid issues are concerned. So, you have put yourself on the road to being well again. It takes time AT normal levels of thyroid for your body to heal, so do not expect to feel well all at once again — just little by little.
In about a week, your hyperness should peak as damaged thyroid cells release their stored supplies of hormone. If you get really uncomfortable, you might check with your doctor about whether or not there are meds you can take to alleviate some of the symptoms. But this increased hyper period doesn’t last long because the cells that are dumping their supplies of hormone are not making new hormone.
I do hope you are feeling much better, and soon.
in reply to: Coping with rage #1169265Not to make your complex situation even more complicated, the reality is that even if your thyroid levels returned to normal by mid-October, that would not definitively mean that the diagnosis was post-partum thyroiditis. It could also mean that Graves had gone into remission for a while. The issue remains, what you should do now, in this moment. You have chosen to put things off, hoping to avoid taking a drug that MIGHT adversely affect the baby. It can, but it typically does not. But in the now, in reality, your deferral of treatment is already having real consequences for the baby. You started this topic because you feel horrible about the rage the baby’s cries cause. That’s a real concern.
I truly understand your ambivalence. I, too, would be very concerned about taking the antithyroid drugs while breast feeding. I get it. But I think my response to you is based in part on the fact that I had a mother who flew into rages, and who,it turned out later, had Graves. Some of my worst memories are associated with those rages, even though my mother didn’t hit me during them. So, I feel I must speak for the child, your child, as well as for you. Babies DO survive on formula. And, the antithyroid drugs do not always adversely impact the baby’s thyroid function. There are alternative choices you can make which might be better than the one you have currently made. The alternatives are not perhaps ideal, but there are alternatives.
in reply to: Coping with rage #1169261I feel very strongly that whatever your reasons for putting off treatment are, they are now irrelevant. Our children learn from example. Seeing parents reject them, in fury, isn’t good for them — and that IS how children interpret things. Our children internalize things. Your child will not understand why you are tense and furious, she will blame herself. Make it a point to get your thyroid levels under control — that is step one. It doesn’t happen quickly, overnight. It takes weeks, and the longer you put things off, the worse it gets.
As for how I coped with the anger when I was suffering the thyroid imbalance, I verbalized to my family things like: "I am really really angry right now, but it is not your fault. " My kids were, obviously, older.
I also took the stress off myself by finding other ways to do things, anticipating stresses (planning/cooking Thanksgiving dinner, etc.), so that I eased up on myself. I did not do a lot of things I normally would have done. I prioritized to remove added stress. The way to do this that I have suggested to lots of people over the years is to imaging that your best friend feels as lousy as you do right now, and then imagine whether or not you would insist that she do X, Y or Z. Typically, if we saw our best friend standing for a half hour doing dishes, while feeling as awful as we do, we would offer to help; we would make her sit down. Treat yourself as well as you would treat your best friend. That might mean paper plates are used. It might mean TV dinners. Not great, but better than wearing yourself out, because when you start to get worn out, your emotions will flow more uncontrollably. Try to analyze when your child is getting cranky, anticipate, and handle things to minimize the issues. Is it because you are busy, and ignoring her? Can you do things differently for a bit? (Remember this is temporary until you can get well again.) Is it when YOU are particularly tired/frazzled? Is there a good friend who could watch the child while you take a half-hour nap? I’m just free-thinking here. None of these may apply perfectly, but perhaps it can give you some ideas of how to short-circuit the rage times.
I do hope you are much better and soon.
in reply to: Success stories with RadioIodine treatment? #1169598Hi, HonestBabe:
I, too, am an absolute success story about RAI. I went from being hideously ill with hyperthyroidism, to hiking in the mountains. Not all at once, obviously. But over time, I regained my health — and, since I have Graves, my RAI dose was intended to eliminate the majority of my thyroid. My mother had Graves, and RAI, and never had an ill day due to thyroid after her treatment, as well. I have three friends who had to have their thyroids removed due to thyroid cancer. Their doses of RAI were significantly higher than ours, and these friends are also living healthy lives on replacement hormone.
The issues are different, however, with hot nodules. In your case, if I understand it correctly, there is a discrete (sp?) cluster of over-active thyroid tissue cells, and the rest of your thyroid, the healthy part, is essentially shut down (due to the TSH levels being so low). As a result, when someone in your position takes RAI, it is absorbed into the hot nodule cells, not the normal cells (which are shut down). Whether or not you would need to supplement with replacement hormone I don’t know. But there should still be normal thyroid tissue left after the RAI.
Methimazole is in a class of drugs known to pass into breast milk, and therefore it has a theoretical ability to adversely impact your baby’s thyroid function. Whether or not the dose that you need to be on to have "normal" levels of thyroid is a threat to your baby is something for your doctors to tell you. Personally, I would double check with the pediatrician to discuss the risks, if any, to the baby — in some cases the baby has to be tested for thyroid levels to make sure that it is not being made hypothyroid.
As for the vertigo, call your doctor. It may be something easily taken care of, or you might have something else going on — like an inner ear infection/virus — that could benefit from medical intervention. Obviously, being dizzy with a small baby is something you don’t want to persist.
in reply to: Grave’s disease and singing #1169317The nerve that "operates" the vocal cords runs through the thyroid. I don’t know if RAI damage to the thyroid could possibly affect that nerve — at least temporarily — but given that you have had RAI so recently, it is a thought. The initial stages of RAI involve a wound, of sorts, to the thyroid cells, and if any scarring is involved, temporarily, it might impact that nerve.
In addition, however, being hyperthyroid does impact our muscles, which weaken. You might be observing the results of that issue, and it may just take time for you throat to regain strength and stamina — like the rest of you.
If you have a voice coach, it might be worthwhile to discuss these ideas with your doctor so that you could find out if there’s any validity to my speculations, and then take them back to your coach to help you work through the problem.
in reply to: RAI Treatment #1169285The two, typical reactions to RAI will be a sore throat and a brief period of extra hyperness approximately one week after you swallow the RAI. The extra hyperness occurs as dying thyroid cells release their stored thyroid hormone into the body.
As to how long it takes for the full impact of the RAI to demonstrate itself — it varies. I went hypo within five weeks of my RAI. Other people take months. It can help to pay attention to the symptoms of hypothyroid (cold intolerance, constipation being the main ones) so that if you detect them you can call for blood tests to confirm. It’s preferable not to go too hypo, if possible. That requires monitoring things at reasonable intervals — which your doctor/endo will indicate.
Then, you’ll start replacement hormone. It starts to work immediately, but you won’t feel normal right away, even if your first dose level is the proper one. It takes us some months AT normal levels of thyroid hormone for our bodies to heal from the damage done while we were hyperthyroid. Since you’ve been on ATDs, your body may have already done some healing. But it still takes some time. It helps, overall, for us to watch for "improvement" rather than any absolute "normal" while the healing is taking place. More likely, your initial dose of replacement will have to be changed. Some doctors start out with a conservative estimate, planning to raise the dose little by little until the proper level of replacement is found. If that is the case, you will have to wait six weeks to three months between blood tests to evaluate how the dose change worked. It is VERY important to wait the required amount of time, even if you think things might be "off." That is because the blood tests used can lag behind the reality. TSH, for example, which is the main test because it can detect really teeny amounts, is a type of running average, and it can lag weeks behind the regular thyroid hormones themselves. If you have blood tests too soon, and the test is wrong, it can put you on a hormonal roller coaster. That has, in fact, happened to me. It’s not ideal.
in reply to: Methimazole Hair Loss #1169294A dermatologist told me that hair (and nails) are considered non-essential by the body. When we are healthy, nutrients will flow to hair and nails. When we are not healthy, nutrients will go to other parts of the body first. If there’s anything left over, the hair and nails will get it last.
It is difficult to tell what is going on with our hair while we are hyper and hypo. When I was hyper, my hair was more brittle, and tended to break. When I was hypo my hair tended to fall out like my collie’s fur — in big clumps. When I was swinging wildly from hyper to hypo I had hair issues, too.
The problem for us is that we must be TOTALLY consistent with the meds prescribed or else our doctors cannot tell what is going on. It may be that you are on slightly too big a dose of the methimazole, in which case when you have your next blood test, your doctor will figure that out. (Provided that you don’t tinker with things, in the meantime.) You will not go bald, unless you have yet another autoimmune disease. So, try to hang in there. It is a process that can be frustrating, but we do get well again.
At one point in time when I was panicked, like you, I was told that yes, the hot phase could return. It’s not what I wanted (or what you want) to hear. I’m not sure how accurate that info is, so I would recommend that you wait until you get to an opthamologist who is knowledgeable. In the meantime, try to take deep breaths and relax. It turned out that I had another issue, which was easily corrected. Perhaps the same will be the case with you. I do hope so. But while you’re waiting for the doctor’s appointment, try not to fret, or imagine the worst. Also, perhaps cold compresses, or some other coping mechanism would help to alleviate the discomfort.
in reply to: Can I Get My Muscles Back? #1169310We lose actual muscle while we are hyperthyroid. When we get back to controlled normal levels of hormone (whichever treatment we use) the muscle slowly starts to come back. I’m not sure whether or not all of it comes back, but we do regain strength over time, especially if we work intelligently with the process. The important thing is to take baby steps at the beginning, when your doctor tells you that it is OK to start exercising again. LISTEN to your body, and start off very slowly. I went to an exercise physiologist at the local hospital for help, and he analyzed things and told me that I had 8% of the strength of a normal woman my age. Yes EIGHT. So, when I began "pumping iron" the "iron" were two, rather thin paperback books. You might be in better shape, but you want to start slowly to avoid straining muscles that have already been abused by thyroid hormone aberrations. Start with walks, rather than jogs. Keep things short and sweet and then pay attention to how you feel. Are you energized? Or pooped? Your body will tell you, if you pay attention.
in reply to: Please help me cope. #1169301Hi, and welcome to the board.
The initial stages of the disease (including diagnosis and starting the meds) can be frustrating. The key thing you must keep in mind is that the medicine (propylthiouricil — or PTU, which is easier to type) is not going to be magic, making you feel normal again all at once. None of the treatments will do that because while we are hyperthyroid, damage is done to various body systems. It takes time AT normal levels of thyroid hormone in order for our bodies to heal.
What the PTU does is act as a chemical block to the production of thyroid hormone. You have to be taking enough of it to prevent you from being hyperthyroid, but if you take too much, you can become hypothyroid. So there is a balancing act that must be continued the whole time you are on it. You must take it consistently, as prescribed, and not tinker with it if you feel too tired, or whatever. The ONLY way your doctor will be able to tell if you are on the correct dose is for you to take it consistently and then check it with blood tests. If, over time, the blood tests show that you have been within normal levels of thyroid hormone for a while, and you still feel significantly "off" you can discuss other treatment options with the doctor. Some of us have problems with the drugs, others of us can take them just fine. But it typically isn’t something you can tell immediately (unless you have an allergic reaction).
So, how to cope while all this is going on? We all have different ways of doing it. I think it helps to keep in mind that you have been hideously ill, and that it is going to take time to heal. So being patient, looking for improvement rather than some absolute "normal" can help. Treat yourself the way you would advise your best friend to treat him/herself if he/she felt the way you do. In other words, be your own best friend. Often we demand too much of ourselves, expecting to do everything we normally would do, without giving ourselves time to heal and get well again, and we get discouraged because we cannot do that without wearing ourselves out. Remember you’re ill right now. It will get better, you will see improvement eventually. We do get well again. Just not all at once, right away.
in reply to: Memory Loss and concentration issues? #1169323Well, something is wrong. That you know. But what you don’t know is why. When our thyroid hormone levels are out-of-whack we can have focus issues/memory issues. So, are your thyroid levels normal or not? If they are at the fringe (either high or low) you might want to talk to your endocrinologist about "tweaking" the dose to see if it makes a difference. When this same sort of thing was happening to me, my endo added T3 (cytomel) to my daily hormone dose. It seemed to work for a while, but then adversely affected my heart and I had to go off it. The big "BUT" was that my focus issues were the same when I went off the T3. So, it wasn’t necessarily what had helped.
But IF you have been talking with your doctor about your hormone levels being off, and he/she is responding "it’s not your thyroid," then you really need to push a bit and say something like, "OK, then what IS it???" Because it doesn’t much matter if it isn’t thyroid, but it does matter that you find out what is wrong. Sometimes our doctors stop thinking about the issue when they say, "It’s not your thyroid." So you need to get them to continue looking for answers. I do wish you luck,
in reply to: Story and Looking for Input #1169327If I read your note correctly, you are only on a beta blocker. I am not a medical expert — nor are any of us here at NGDF. We are patients with more (or less) experience with the disease than "newcomers." But it is my understanding (and this is something that you should check out with your doctors carefully), that all a beta blocker does is mask the symptoms. It helps to take away the tremors. It helps to prevent arrythmias (which can occur because of the excess levels of thyroid). But muscle and bone loss (also a result of excessive levels of thyroid hormone) would continue, unabated. I’m not sure that it is at all safe to continue hyperthyroid, without one of the definitive treatment options being put into play.
On another note: you should be commended for your perseverance in helping your wife through her extremely difficult time. We can be difficult when we are hyperthyroid — our emotions are completely volatile. And many spouses don’t understand.
I do wish you good luck with your treatment.
in reply to: New GD Sufferer. Feel better when? #1061242Hi, MilkMoney: I am so glad to hear that you are feeling so much better. And, yes, getting TO normal levels typically does make us feel much better. The issue I raised, though, was how long it takes typically to get back to normal. While I felt immensely better once my thyroid hormone levels were back at the normal level, I was weak as a pup. My normal strength and stamina required months to reestablish, pumping iron, eating well, etc. Be very careful when you start to go back to normal activities, especially normal levels of exercise, to test out your body’s strength and endurance. If you try to do everything the "normal" way right away, you might pull muscles, develop shin splints, etc., even though you aren’t doing a lot. You might be one of the lucky ones that caught things early enough so that there’s little to no damage like muscle loss. But it still cannot hurt to test things out slowly.
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