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in reply to: Symptoms after RAI #1170111
Hi, NikkiDay:
Of course you don’t feel well! You have been, and are, ill. About one week — give or take — after RAI we become more hyperthyroid than we were before as all the thyroid cells that have been damaged by the RAI release their stored supplies of thyroid hormone into the body all at once. It is a bit of a siege for your cells. Being hyperthyroid does cause us to feel fatigue, so fatigue isn’t necessarily a sign that you are now hypo, especially this soon after the RAI. The way I could tell the difference — at least in my case — was that when I was a bit hypothyroid, I could alleviate the fatigue with light exercise. ANY excercise while hyperthyroid, just made the fatigue worse. But, since you are two weeks out, perhaps your thyroid levels are lowering, and your body — used to being revved — is recognizing the comparison.
Second: do not expect to feel instantly “normal” when you finally reach normal levels of thyroid hormone. It takes months AT normal levels of thyroid hormone for your body to heal. So, try to look for improvement over time; progress. It will help you to feel better during the healing process to be aware of improvements, rather than fixing on some remembered normal that may take a long time to regain.
I do hope you are feeling better soon.
Hi, vrider, and welcome to our board. I’m sorry you are feeling so terrible.
The problem, from my point of view, isn’t that your doctor seems to be going only by the numbers. It’s that the doctor appears to have stopped thinking about what is causing your symptoms. You don’t mention that your doctor has looked for anything else. Perhaps he/she has and you didn’t mention it. It is, unfortunately, possible for those of us with Graves to turn up with another disease, later on in life. And the symptoms of a lot of diseases are shared. It’s one of the reasons many of us — me, as well as you — endured Graves a lot longer than necessary before the diagnosis. Those of us with Graves see those symptoms as "GRAVES!!," but sometimes it is indeed something else. So, what we need in a doctor is not someone who simply says, "It’s not your thyroid." The doctor can say that, but then needs to say, "But let’s see what it might be." And if the doctor doesn’t say that extra bit, WE need to say it to them to get their thinking jump-started. Anyway, I hope your new doctor is more help to you to figure out what IS going on. And, fingers crossed here that it is simply a function of taking slightly too much replacement hormone. Some of us (hand raised here again) have "some" thyroid tissue left after RAI. It’s not enough all by itself to make us hyper again, but with the addition of the replacement hormone, occasional dose changes need to be made.
Anyway, I hope you get your problem fixed and are feeling well again, soon.
in reply to: Recently diagnosed: 4 weeks on the meds #1170068Hi, Barbsie, and welcome to our board.
It can take some months AT normal levels of thyroid hormone for us to feel healed and normal. And you may not be there, yet. When we first go on the meds, there sometimes needs to be adjustments done to find just the right dose. Our doctors try to guess, based on the results of the tests we were given, but sometimes we need a touch less, or a touch more. So you need to be a bit patient. I don’t know what time your doctor suggested that you come back for blood tests to determine how your mjeds are doing, but if you still feel rotten at the end of another month, call and ask for them.
There is no special Graves diet, but when we are hyperthyroid ingesting kelp (which is very high in iodine content) is like throwing gasoline on a flame. Alga ditto. I’m not sure about the reason for abstaining from soy at the moment. But other than that, what you need are nutritionally good foods to try to replenish your body with the vitamins and minerals it needs to regain strength and health. Some people will tell you to avoid certain veggies that contain a chemical that can (in huge quantities) cause goiter formation. But it would be physically impossible for us to eat enough of these veggies (called goitrogens) to make any difference whatsoever. And they are things like broccoli which have really good nutritional content. So, don’t worry about anything other than the items specified by your own doctor.
As for the trip. You could talk with your doctor about what you are planning. If you are going overseas to lay on a S. Pacific beach, there is likely to be no problem. If you are planning to climb mountains, it’s probably not at all a good idea right now. Anything in between really depends upon what you think you can manage. But having some FUN can make a huge difference in your morale so try to figure out whether it is possible to still go and have some fun. Or whether some other vacation might be better this time around.
You condition is temporary. The treatments typically work well to give us back our health over time. Try to keep that thought in mind.
I hopeyou are feeling much better, soon.
How quickly you heal depends entirely upon how hyperthyroid you were, and for how long. If it was caught quickly, you should expect to regain strength and stamina relatively quickly once you get back to controlled normal levels of thyroid hormone.
in reply to: Just diagnosed with TED… SCARED #1170083Hi, and welcome to our forum.
Yes, a diagnosis of the eye disease is scarey. I do understand. The important thing for you to understand right now, however, is that a doctor telling you that you have thyroid eye disease (TED) does NOT mean that you will go on to have horrible protrusion, and possible blindness. The eye disease is completely inconsistent in how it manifests itself from one person to the next. Having "some" eye disease symptoms does NOT mean it will inexorably progress to horrible. In point of fact, I’ve read articles in thyroid association newsletters that suggest that we ALL have "some" eye changes associated with the eye disease, but that most of us do not exhibit pronounced symptoms. Also, it has been suggested in some research, that RAI [i:xkb0qzbu][b:xkb0qzbu]temporarily[/b:xkb0qzbu][/i:xkb0qzbu] can increase symptoms of the eye disease in a small percentage of patients. It does not cause the disease — the disease is already there, but not apparent until the symptoms are aggravated by what is thought to be an immune system response to the RAI. Any immune system response will increase the severity of autoimmune diseases.
So, you said your specialist diagnosed the eye disease. If that was your endocrinologist/thyroid specialist, then make an appointment with an opthamologist (an MD specializing in eye diseases). The opthamologist is the medically trained doctor that should monitor your eyes from now on. He/she probably will not "do" anything for a while. The treatment options that we have available to us have very bad side effect potential, and they are not used unless it is necessary to protect your [i:xkb0qzbu][b:xkb0qzbu]vision[/b:xkb0qzbu][/i:xkb0qzbu]. Why wouldn’t it be necessary? Remember: some eye disease does not mean inevitable bad eye disease. But the doctor will be following your eye disease for the next couple of years.
The eye disease goes through what we call a "hot phase," during which symptoms appear and progress. A terrifying time. Then, the progression of the symptoms stops, and there is typically a period of time when the symptoms severity reverses. The cold phase. How much alleviation of symptoms there is varies from one person to the next. In my case, I had protrusion and a rather maddeningly intermittent doubling of my vision. (Maddening? It meant I saw double, but not constantly, so no prisms could be added to my glasses to provide me with consistent vision. So I could not drive safely. I think I would have preferred a slightly more severe doubling. No, probably not. But it was horribly frustrating.) The symptoms progressed over a period of about 18 months to two years. Then, they began to go away. Now, ten years later, the protrusion is significantly less, my eyes close at night, for example, and I only get doubling if I am quite tired, or if I have had an alcoholic beverage. Note: my opthamologist just watched and provided no additional medications or interventions. The disease went away without them.
So, try to keep in mind. Having some symptoms doesn’t mean you will have a steady progression to horrible. You might, but there’s no way to tell. Worrying about all the possible horrible scenarios will only ruin your day. They probably will not develop. So try to take one day at a time. Deal with what IS, not what might happen, as much as you can.
Many of us here have had the eye disease, and discussed it. Shirley and I are the main ones here now who can talk to you about it. But we have archives, and through the years there have been a lot of posts about TED.
in reply to: Newly diagnosed post surgery! #1170092Graves is an autoimmune condition where the body has produced antithyroid antibodies that cause the thyroid to over-produce thyroid hormone. Hyperthyroidism is what made you so terribly ill. Once your thyroid is removed, the only way that you can be hyperthyroid ever again, is if you are taking too much replacement hormone. So, to answer your question, from my point of view at least, you still "have" Graves (your body is still producing those antibodies at some level or other), but the likelihood of the antibodies ever making you ill again is almost nil. There is typically "some" thyroid tissue left after thyroidectomy, if only to protect the parathyroid glands which sit at the four corners. So, there is "some" thyroid tissue (but not much) that can be influenced by the antibodies. So, if those thyroid cells become overactive, or underactive, you might need to adjust your replacement hormone levels in the future, to stay at "normal" levels of thyroid hormone. But typically, we get well again, and stay well despite the ongoing presence of those antibodies.
in reply to: looking for answers #1170100Eyelid retraction — upper eyelid, that is — is often associated with too high a level of thyroid hormone. And, it often goes away once thyroid levels are controlled back in the normal zone. It is not necessarily an indicator of the eye disease. It makes our eyes appear more prominent — that "Graves’" stare — but they do not have to be protruding to produce the effect.
The dry skin patches on the foot and ankle, might be pretibial myxedema, which would need to be diagnosed by a dermatologist. Or they might very well be just dry patches. I have had itchy dry patches from time to time, and they are helped — I keep them under control — by using strong moisturizers suggested by my dermatologist. I actually use two moisturizers. I apply them to WET skin immediately after showers or baths. One is called AMantle, from Doak Labs. It goes on first. Second, I use an Origins product called Precipitation Extra. They really do a good job together. And there might be other products that would produce the same results. When things were at their worst, I would apply the moisturizers before bed and wrap my legs in plastic wrap, so that the moisture would be held in all night. That really helped too. Do NOT do this, however, if you are applying cortizone creams without talking with your doctor first.
in reply to: Anyone NOT gain weight after RAI? and VENT #1064902"ALL" of it does not come from muscle coming back. Sometimes people regain flab, as well. If you are eating properly…i.e. the right portions, and good nutritional value…you may see some of both for a while (or not — as was my case), but there will definitely be weight gain due to the muscles returning over time.
Kimberly may have more complete data than I do. But what I was told, at a conference long ago, was that the incidence of thyroid cancer is almost nil especially when our thyroids have been removed — even via RAI (which is also a treatment for thyroid cancer ). As for those who retain their thyroids, I have not heard of any connection between Graves and thyroid cancer.
In answer to your question, Cindy, my higher dose is in consecutive days. I don’t think it matters other than to help me remember when to take the higher dose. If there are specific days of the week to take the higher dose it is easier to remember. As long as you know what day it is.
” title=”Smile” /> Another rationale I’ve heard for going more hypo, over time, is that the over-worked thyroid cells wear out. That may be too amateur an explanation, however. On the other hand, approximately 10% of the population goes hypo as they age, so perhaps those of us who have seen an increase, over time, in the amount of our replacement hormone needs, would fit in that 10%.
Hi, Cindy. I am on two different doses. I take one of them five days a week, and one of them two days a week. We had to experiment. I started out on every other day, but that put me into hyper territory. I’ve been on that dose for a year or two now, with good results.
The reason it works as I understand it: T4 (which is the active ingredient in our replacement hormone) has a half-life of six and three-quarters days….so just shy of a week. That means that it is biologically available to the cells to break down into T3 for quite a while. It builds up in our bodies, and is used as necessary. By taking a slightly larger dose some days than others, you incrementally build up the amount stored in the body.
Hope this helps.
in reply to: Newly Diagnosed and New to the Board #1169686Being hyperthyroid plays havoc with our sleep patterns. I did not use any sleep aids, although going on beta blockers helped. You need an Rx for those, however, and not everyone can take them safely, so it’s something to discuss with the doctor.
My primary thought about the people who did your ultrasound was that they are extremely, excessively unprofessional. Making comments like that is truly rude and unnecessary. And, until you see your doctor, I would suggest you take it as an indication that they may not have known what they were doing, much less what they were seeing. As to what they saw — or thought they were seeing — I have no idea. I did not have any ultrasounds ordered during the diagnostic stage, and I cannot imaging what they would show.
Wishing you good luck with your doctor visit.
Hi, Theresa, and welcome to our Board.
Blood tests are a definitive diagnostic tool for hyperthyroidism. You ARE hyperthyroid. That’s number one. Second, a scan, which shows the distribution of uptake, plus the ruling out of other possibilities (like viral infection of the thyroid) determines whether or not that hyperthyroid state is due to Graves. It does not matter how you feel. In fact, I think you should be overjoyed that it was caught before it made you hideously ill. Because if you let it go, it will, eventually, make you most hideously ill. Some of us can look back and detect periods of time prior to our diagnosis with Graves, when we think we were probably hyperthyroid. Not horrid times, but "off" times, or times when we would look at photos and realize we looked gaunt, and our eyes were somewhat bigger than normal (lid retraction, not the eye disease). But it can come and go. Antibody levels wax and wane for no well-understood reason, and since Graves symptoms are driven by antibody levels, there can be periods of being hyper followed by periods of normal. For a while. Then, enough damage will have been done to the body, that the next bout with hyper slams us to the mat. Don’t wait to be slammed to the mat.
I detect from your message that you have gained some weight, and think that might be an indication that you don’t really have Graves. But unfortuntely, some people do not lose weight while hyperthyroid. And, when their hyperthyroidism is treated, they have reported that their weight issues returned to normal, over time, just like the rest of us. The reason that a lot of people report weight gain, after treatment, is typically based, at least in part, on muscle issues. We lose muscle mass while hyperthyroid. Muscle goes away, making us weaker, and lowering our metabolic set point. Muscle weighs more than other tissues, but it also eats up more calories. So when we have a good muscle base, we can eat more than when we do not. When we regain normal levels of thyroid hormone after treatment, some (if not all) of that muscle starts to slowly come back. The scales will show weight gain. But, returning muscle is good weight to gain, not bad. Again, to repeat, because muscle eats up more calories, and we can eat more. It raises our metabolism. So, we have to endure a period of time when looking at the scale doesn’t really tell us whether or not we’re eating too much. It helps to be a bit proactive. After my RAI, I gave up adding sugar to things for a while, and I eliminated cookies, cakes and other desserts. Again, for a while. I did gain some weight, but my clothing size remained the same — i.e. returning muscle.
in reply to: time frames for surgeries #1169654I’m sure you will get some responses from folks who have experienced this sequence of surgeries. I would think that you would need to heal completely from the decompression before they could start the strabismus surgeries, and that may vary from one person to the next. If there is any tissue swelling caused by the surgery, it would adversely affect the results of the strabismus.
ARe you using a patch? Covering one eye eliminates doubling. It requires some mental adjustments (we lose depth perception if we are only using one eye), but it can tide us over until we get rid of the doubling altogether. Prisms on our glasses can also help some folks (although they were no help to me — I had to use the patch.)
in reply to: Newly Diagnosed and New to the Board #1169684One major issue many folks face is that they expect the meds (whether replacement hormone after removal of the thyroid, or ATDs) to make them feel well right away. It doesn’t happen. Kimberly’s doctor described it one way — mine another. But the gist — to me at least — is that being hyperthyroid causes damage to our bodies in varying ways. For example, we lose muscle mass. Taking an ATD, or replacement hormone, does not replace muscle mass instantly. So we continue to feel weak for a while, even though our thyroid hormone levels may have returned to normal. The same holds true with whatever problem was created by being hyperthyroid. It takes months AT NORMAL LEVELS of thyroid hormone for our bodies to heal. So, think in terms of a hurricane. Just because the winds are gone, there is still damage strewn about the place, and it takes a while for the damage to be repaired. We’ve been hit by a metabolic hurricane. We do get well again, but it takes time for the body to heal. You will see progress — improvements — along the way. Focus on them, and not on any absolute sense of "normal" that you may have for a while. And do try to cut yourself as much slack as you can to help your body heal as quickly as possible.
in reply to: thyroxine absorbtion #1169672Yes, JaneG, the instructions against calcium, etc., refer to supplementation. In other words, don’t take a morning vitamin pill and do not take calcium supplements with breakfast. Wait four hours or more.
Whenever you start a new medication, read the instructions with the pharmacist and have him/her explain what it means. They are the person trained to know what the instructions actually mean (because it is reasonable to assume you would need to avoid yogurt for breakfast, given that statement) and they can save you some misunderstandings as well.
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