Forum Replies Created
-
AuthorPosts
-
Hi, Marta:
Having nodules does not necessarily mean that they are causing the outpouring of thyroid hormone that leads to hyperthyroidism. Some nodules are "cold" – meaning they’re inactive.
If you want to be sure why you were given the Graves diagnosis, you need to get a copy of the report on your various scans, and discuss them with your doctor. If you see the word "diffuse" on the report from your scan, for example, this means that your entire thyroid ate up the test iodine (and this is an indication that it is Graves, rather than the nodule). But, even if it IS the nodule causing the problem, the treatment options are exactly the same. Hyperthyroidism MUST be treated, no matter what the cause. Left untreated it will play havoc with your health.
in reply to: Could it be my thyroid.. again? #1064692Hi, Alexa, and welcome to our board.
If it were me, I would take my pulse immediately upon waking up for a few days, and keep a log of the results. That is the "resting" pulse rate, I think. Anyway, it is a good indicator of whether or not your heart is working overtime. If that resting pulse rate is high (and what "high" means, I’m not sure, but when we first wake up, our pulse should be at its slowest — unless we’ve just had a major nightmare), then I would go into the doctor, and politely nag. When I was hyperthyroid — seriously hyperthyroid — my resting pulse was 108. Doctors are trained to look at numbers, but they also will consider "objective," verifiable symptoms data — like pulse rate, number of bowel movements a day, whether there are tremors, number of hours you can sleep, etc. — if pushed. (You could also keep a log of those symptoms for a week or so.) When someone is at the edge of normal — as your tests show — making slight adjustments in the replacement hormone dose can make a difference. Some of us are not "normal" at the very edge of the normal range. There will be symptoms. We need a doctor that will pay attention to those symptoms.
Additionally: a dose change does NOT have to be a whole step up or down in replacement pill (i.e. like going from .88 to .50). Some of us — myself and Ski and Jake, for example — take one dose most days of the week, and either a different dose on other days, or a skipped dose. Replacement hormone has a relatively long life in the body so it is possible to find doses between the pharmaceutically manufactured ones by alternating pills or skipping them.
in reply to: Side effects of coming off Methimazole #1064688Hi, Christine:
I’ve not heard of any "rebound" effects from coming off the antithyroid drugs. (Rebound, meaning that the symptoms it’s designed to suppress come back full force if you stop it too soon. This can happen with steroids and can happen with the beta blockers.) Your doctor — or pharmacist — might be able to better answer that question. If you find out anything helpful along those lines, please pass it along to us.
in reply to: New to site and have Question #1064696Gee, they kept you seven days!?! Obviously, the hospital docs thought something was wrong. How frustrating for you not to know what was going on.
RAI does not necessarily kill off every last bit of thyroid. Some of us can be left with "some" thyroid still functioning after RAI, but usually — hopefully — it is not enough to make us hyper again. But if there is enough of it, it can make it necessary from time to time to adjust our dose of replacement hormone up and down. If that has been your history, getting your levels checked might make some sense. I hope it is something that simple.
in reply to: First Appt with Endo! #1064735How can you have both Graves and Hashimoto’s thyroiditis? If that is, indeed, what you were told, your situation is complicated by having two different autoimmune thyroid conditions. One (Graves) causes you to be hyperthyroid. Hashimoto’s causes you to be hypOthyroid. You can have the antibodies for both conditions, and thus be diagnosed with both conditions, but you cannot BE both hyper and hypo at the same time, so typically what happens is that one condition will predominate at one time, but the other can predominate at another. Right now, your blood levels of thyroid hormone are too high, so you are hyperthyroid, and you’ve been put on medication to try to control that condition.
in reply to: PUFFY EYES SIX MONTHS POST RAI #1064756I honestly have no expertise to bring to bear on blood test results. I do know that there can be fluctuations, over time, even after RAI or surgery. It’s just that these fluctuations are easier to fix, typically, than when we have our full thyroids being impacted by the antibodies. I know many people who take one dose of replacement hormone for years and years. I often have to have slight adjustments. Most often, I feel just fine, but my standard blood work with the endo shows something she doesn’t quite like, and she ‘tinkers."
No, it is not likely that you will be given anything to bring down the puffiness, if it is the eye muscles pushing the fat pads slightly. The side effects of steroids is significant for women, and unless our eye condition gets horrid, our eye doctors prefer to let nature take its course.
I got more significant eye disease than just the soft tissue swelling. I had that, plus double vision. And after a couple of years, it went away. I still think I have that typical "thyroid eyes" look, but everyone tells me that my eyes look incredibly better. And the double vision went away — without drug or surgical interventions. it was a very long couple of years, but the disease does go into remission.
in reply to: Just found out I have Graves 3 weeks ago – Help #1064771Hoarseness can occur because any enlargement of the thyroid gland can put pressure on the nerve that operates the vocal cords. That nerve runs through the thyroid.
You didn’t mention methimazole before. But if you are on methimazole, and have developed a seriously sore throat you need to get the doctor’s office to pay attention and check your blood. Sometimes the antithyroid drugs lower our white cell count and make it difficult to fight off infection. This happens very, very rarely, but it is one of those symptoms that merits a "call your doctor right away" warning on the drug information sheets we get when we fill a prescription.
Good luck, and feel better soon.
in reply to: whats going on? #1064742Several months after starting replacement hormone, I went hyper again — slightly, but definitely. So my endo lowered my dose of replacement hormone. A few weeks later, it had to be lowered again. It was lowered until I was finally taken off replacement hormone altogether for a couple of months. Then, I went hypo, and had to start the replacement hormone once again. It was frustrating. I began to call my thyroid "TRex" among other names.
Not all thyroid tissue is necessarily killed off with RAI. If there is thyroid tissue remaining, it can be revved up by raised antibody levels. This is typically temporary, but it is necessary to monitor things carefully. Usually, or perhaps the word is "hopefully," there is not enough thyroid tissue left for you to be hyperthyroid off the replacement hormone. Sometimes the dose of RAI is not enough, but that only happens in about 10% of cases, from what I’ve read. So as long as you are not hyper on a lower dose of replacement, or on no replacement at all, you are still in much better treatment condition than you were before the RAI.
Your doctor’s comment aside, you ARE scheduled for blood tests, so he DID listen. I do hope you get some relief soon.
A diagnosis of hyperthyroid is relatively simple: a blood test shows elevated levels of actual thyroid hormones (typically T4 and T3) and repressed levels of TSH (thyroid stimulating hormone). That’s all there is to it. If you have too much thyroid hormone, and too little TSH, you ARE hyperthyroid.
Now, as to what is causing it? There are a few things that can cause someone to be hyperthyroid, but the huge majority of times it is autoimmune Graves. Hyperthyroidism can be caused by an infection, but there would be signs of infection. It can also be caused by an "autonomous node" — essentially a contained cluster of thyroid cells that have gone berzerker. Whether or not this is the case can be absolutely demonstrated by the uptake and scan tests we are sometimes given. If it is an autonomous node the scan will show only small portions of the thyroid cells have taken up the test material. If it is Graves, the entire thyroid will be lit up with the test material. But the treatment options do not change. In fact, with an autonomous node, the treatment of choice is RAI. The healthy cells do not take up the RAI, only the node does. So most of the thyroid is left intact.
One thing to remember about ALL of our treatment options: If you have Graves — the autoimmune disease — NONE of the treatment options get rid of the causative agent — i.e. the antibodies. So while you still have a thyroid, if those antibody levels soar, you will need more of the medication. And if the antibodies lessen, you will need less. All methimazole does is block the chemical reaction by which thyroid cells take iodine from our diet and make thyroid hormone. Methimazole doesn’t target the antibodies.
It is IMPERATIVE for your long-term health to eliminate hyperthyroidism. Hyperthyroidism has a devastating effect on our health over time. If the drug treatment doesn’t work for you, and you find yourself facing either RAI or surgical removal of your thyroid, please know that we can, and do, live healthy lives without our thyroids.
I do wish you good health soon.
in reply to: Just found out I have Graves 3 weeks ago – Help #1064767The numbers are important, but so are the symptoms. You need a doctor who pays attention to both. (As a sidebar, though, you should not expect an endo to rush to change things just because you might be having "vague" symptoms, if those numbers look rock solid. I mention that only in passing, for future thought because it doesn’t sound like you are having "vague" symptoms.) The thyroid levels are a range — in some cases (like T4) a rather wide range. The way the labs came up with the "normal" numbers in the first place was by using statistics . Doing a test on a whole lot of people, and then analyzing the pattern into which the results fell, and correlating them with symptoms, the labs came up with a range of normal for their type of test. (Different labs can use different analytical techniques which will change the numbers, slightly.) Since I was diagnosed, however, doctors (and labs) have decided that their range was probably wrong (too wide) for TSH. They have now lowered the number at which they consider a patient hypothyroid, because they decided that more of the population was probably hypothyroid than originally believed. Anyway, because the numbers are a range, it is possible for some of us to have symptoms of hyperthyroid, if we are at the hyper end of the normal range, or have symptoms of hypothyroid, if we are at the hypo end of the range. We might not BE normal at the ends of the range. And I think our endos need to pay attention if this is the situation.
There is a normal tendency, among all of us — myself included — to blame as much as possible of our health issues on our thyroid levels. Once you get thoroughly sick with out-of-whack thyroid levels, it’s hard to put it aside and accept that something else might be going on. Besides, if it IS thyroid, it is so easy to fix. Or, so we think. And we go to the endo, who does a blood test, and then says, "It’s not your thyroid." End of conversation. I have a terrific endo, and even she said that once to me. She was going by the numbers. But I did not leave it there. I said, "OK. If it’s not my thyroid, what IS it?" When an endo says it’s not your thyroid, their thought processes have stopped. You’ve come to them with a diagnosis that they’ve proven wrong. End of problem for them. You need to pass the ball back. From the patient’s point of view there IS a problem. It would be wonderful if it really was thyroid-related, but if it is not, we need the doctor to continue to reason through things to find out what IS going on. Endos are internists who have specialized in the endocrine system. And AS internists they have received the education necessary to work through other physical conditions.
So, it is important for our endos to listen to what we are saying and continue to work with us, if only to suggest that the problem might be better resolved by another type of doctor. If your endo is not capable of listening to you when you feel you have a problem, you might want to look for a new one.
in reply to: PUFFY EYES SIX MONTHS POST RAI #1064754Hi, Susan:
It depends upon what you mean by "puffy" eyes. I have had a couple of episodes of swollen eyes (think apricot sized) which were likely caused by different things. The first time occurred a couple of months after RAI when I had just gone hypothyroid — and, rightly or wrongly, I blamed it on the swing in hormones. That went away by itself. The second time, a doctor put me on prednisone for a week, saying it was an allergic reaction to something in the environment.
Then, there is the soft tissue swelling about the eyes that is sometimes a part of TED symptoms. Many people with thyroid disease, especially Graves, do get soft tissue swelling. It is often mild, and essentially what is involved is that there is some minor swelling — that isn’t quite the right word, I don’t think, but it’s all I can come up with now — of the muscles behind the eyes, which cause the eyes to move forward just a wee bit, and put pressure on the "fat pads" that surround the eye ball. When these fat pads get pushed from behind, it looks like puffiness. If your eye doctor does think it is related to TED in some way, do NOT panic. Since the advent of soft-imaging techniques it has become apparent that most of us get "some" minor eye muscles changes when we have Graves. But getting some issues does not mean that full-blown eye disease will inevitably follow. The full-blown disease is much rarer than the minor symptoms, which are often ignored because they are so inconsequential.
Hi, Cynthia:
Hashimotos is an autoimmune thyroid disease, like Graves. In simple, layman’s language, in Hashimotos the antibodies block the TSH receptor; in Graves, the antibodies stimulate the TSH receptor, making it think that it needs to produce more hormone.
Some people have the antibodies for both Hashimoto and Graves. You cannot be both hyper and hypo at the same time, so the people who have both diseases experience serious swings in their thyroid levels.
I hope you get some answers from the endo.
It’s necessary to be patient through the recovery process. When we start an antithyroid drug (ATD) like methimazole, it takes a while before we see results. The drug does start immediately to interfere with the production of thyroid hormone, but the thyroid not only makes hormone, it stores it for future use. So until those stored supplies of hormone are depleted we don’t notice any change. In addition, it is necessary sometimes to make adjustments to the dose of the ATD. If you get too much, you will become hypothyroid; if you are not getting enough, you will stay hyperthyroid. Those adjustments can take weeks to make. The bottom line is that until you are at CONTROLLED NORMAL levels of thyroid hormone for a few weeks, you will not necessarily feel like your old self. That day will come, but it takes months, typically, not days or weeks.
Wishing you well,
in reply to: Hyper again? #1064948Often after surgery or RAI there is "some" thyroid tissue left. That tissue can respond to antibody attack by revving up, and make a dose adjustment necessary in your replacement hormone. Sometimes we can go more hyPO, as well. That is why it is recommended that we get routine thyroid tests done periodically (like once a year once we are stabilized).
I hope you feel better soon.
in reply to: muscle weakness and fatique calcium???? #1064812Muscle weakness and fatigue are part of being hyperthyroid. We lose muscle while hyperthyroid. Also, from my experience (although I’ haven’t been able to find anyone who might know why) I could tell that my muscles didn’t function properly while I was hyperthyroid. If I tried to push exercise, the muscles would simply give out. Weakness? Or some biochemical issue? I don’t know. But the longer someone goes hyperthyroid, the weaker they get. Fatigue: the body is racing too hard, 24/7 while hyperthyroid. It’s working harder, but usually it is working less efficiently. We get tired. But, we cannot sleep as well as we need to, either. So we get more tired. When we start effective treatment, it can take a while for our bodies to get normal again.
Could it be calcium levels in your case? Maybe. My calcium levels were normal back then, but your’s might be off. Your doctor might be able to tell you that. But there is no quick fix for the fatigue and weakness. We just need to get normal, controlled levels of thyroid hormone for long enough for our bodies to heal. It doesn’t happen overnight unfortunately.
-
AuthorPosts
