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There are some eye symptoms that are directly related to thyroid hormone levels that can make us think that our eyes are actually bulging, when they are not. These symptoms typically go away once we get our thyroid levels controlled back in the normal zone. The major one I’m thinking of is upper eyelid retraction. The excess levels of thyroid hormone cause the muscles in the lid to pull back (retract). It leaves us with a slightly gaping stare. When we are restored to normal thyroid levels, the retraction often goes away.
Actual exopthalmus (bulging eyes) will not, as far as I know, go away with the normalization of thyroid levels. It typically needs the "hot" phase of the eye disease to be over before any true protrusion moves back toward normal.
I don’t know how true this is, but I remember long ago (when I was going through the eye disease) that someone posted that you could tell the difference (somewhat) between lid retraction and actual exopthalmus by looking at what part of the white of the eye was showing. If there was pronounced white around the TOP of the colored part of the ey, that was often due to lid retraction. If there was white showing on the BOTTOM of the colored part of the eye, this would be more an indicator of protrusion due to the bulging muscles. I used to scan my eyes a lot, looking for the white exposure, as I went through the hot phase of the disease.
As to whether or not you need worry about radiation or surgical intervention, no one can tell you — and probably not even your eye doctor at this point. It may comfort you to know that the vast majority of us do not get any significant eye muscle changes with the TED. A good number of us get "some" changes, but they do not, typically, require medical intervention. I had at least two years of TED issues (and the accompanying panicky feeling), but when the hot phase ended, my eyes returned to (mostly) normal. So, try to stay as calm as you can about it. I do know that’s very hard to do. But since there are no preventive measures possible, being under an opthamologist’s care, and having the doctor monitoring the development of the disease is the most important thing you can do for yourself at this point in time.
Ski will probably get back to you about the specifics from this year’s conference. I did not attend, so I cannot address those issues.
in reply to: GD and stomach issues #1074465ATD is one of the shorthand terms we use here on the board. It stands for AntiThyroid Drug, specifically meaning any drug which acts as a chemical block to the production of thyroid hormone. In the United States that means either PTU or methimazole (Tapazole). In the UK that typically means carbamazole. But the term ATD is useful because despite there being different chemicals used, which means they interfere in slightly different ways, the side effect issues, etc. are pretty much the same.
in reply to: Allergic to PTU…Headed for RAI…What to Expect? #1074457Egad, no wonder I felt so rotten while on PTU! I have maintained for over 12 years that I had a strange reaction to it — it’s the reason I chose RAI. And, I, too, am allergic to sulfa (although I did not know it back then).
I wish you good luck with your RAI. I had a good experience with it. My doctor was on top of things, and started replacement hormone right away. That is important. But, even when I was hypothyroid (even starting replacement right away we didn’t quite keep up with all of the changes) with a TSH of 12 or 13 I never, ever felt as bad as I did hyperthyroid, and on PTU. I hope your experience is as positive.
in reply to: suffering post partum graves! #1074474I assume that since you have a diagnosis, you are on some form of treatment. If not, you absolutely MUST go back to your doctor and start some form of treatment. It is very common for Graves to begin postpartum. It doesn’t matter, though, what triggers it, treatment is essential.
I do not understand why on earth you should feel guilty, though. Being hyperthyroid makes us incredibly ill. You are not "weak," you are sick. You may not "look" sick, but you have been hit by the metabolic equivalent of a semi-trailer. Nothing in your body works correctly when thyroid hormone levels are wonky. Nothing. Our treatments do work to bring us back to health, but while you are ill, you need to take very good care of yourself (as well as that baby).
If you have specific questions about the various treatment options, feel free to ask. The moderators here have been through what you are going through, and we have extensive files of information.
Take care,
in reply to: incurable but entirely treatable #1074515Antibodies circulate in the blood, and can be found in other bodily fluids. I’m not sure about their presence in the lymphatic system. But antibodies are extremely specific about their targets: they do not employ a shotgun approach but, rather, a surgically precise approach. Many of us also have antibodies for the eye muscles and lower leg tissues, as well. In that, you could talk "syndrome", but only very small percentage of the Graves’ population turns up with severe eye disease/pretibial myxedema. The vast majority of you will never experience them.
What each of us needs to expect is WELLNESS. We have been made ill by the excessive levels of thyroid hormone in the body. Successful treatments will eliminate that, or control it (in the case of the ATDs).
There’s no reason for you to explain chapter and verse about why you cannot schedule this person right now. All you would need to state is that you have commitments for the next two (three?) months, and ask if you could call her back then to schedule something. If it were a friend, it would be one thing, but strangers do not have any right to know.
If you used to enjoy giving those parties, I would recommend that you set a date in your own mind for when you want to start them up again, and then actively work towards regaining strength so that you can go back to presenting them. I used to have to drag myself out for a daily, 15/20 minute walk, but by doing so I felt better, and was able to recover much faster than I would have if I had simply waited to feel good And I "pumped iron" for a while, too. Basically, we need to do our own "physical therapy" after treatment. By gradually increasing exercise we re-strengthen muscles and regain our energy. Another thing I would do to step up the energy, was to put peppy music playing on my stereo. If there was rock and roll playing, I would find myself doing little dance steps, or walking faster. It helped to get me over the hump and out of the slump.
in reply to: What took me so long? #1074491If you think about it, nrssully, what is making you feel so unwell is the hyperthyroidism. So being about to cure that is HUGE, no matter how you "cure" it. Also, I believe it is only about 1% of the GRAVES population that gets either severe eye disease or pretibial myxedema (which seems to go hand-in-hand with serious eye disease) — so I hope you don’t fret for long about the other, remote possibilities.
And I hope your treatment works soon to make you feel well again.
in reply to: New to Blog, RAI, TED and Steroids #1074478Hi, Rob, and welcome to the Board.
Side effect issues regarding the steroid. Obviously, the dose you are put on will matter. Also, the length of time the doctor wants you to take it will have an impact. For the best explanation of the side effect issues possible, you might want to talk with your local pharmacist (is it "chemist" in Australia?) You could also use a search engine and look up "prednisone side effects," although I don’t necessarily recommend it: the one I just found had truly ugly photos to show the worst of the possible. The one thing the article did state, however, was that not everyone who takes prednisone/corticosteroids produces all ofthe side effects. (You want to be sure you are searching a corticosteroid, and not an anabolic steroid, btw. They are different beasts.)
As for your energy levels post RAI. One of the problematic aspects of things is that you will have to go, briefly, hyperthyroid again and that might take away your energy for a while. Typically, our doctors stop the ATD (like carbamazole) a week or two before the RAI. (And, sometimes, stop eating certain types of sea food which are high in iodine.) But stopping the carbamazole will mean you will feel hyper symptoms returning. Also, about one week after RAI , the thyroid cells that are damaged by the treatment start to die off release any stored supplies of hormone into the body, pretty much all at once. So for a few days, starting a week or so after RAI, there will be an even greater level of hyper symptoms. Then we gradually feel them subside as the treatment effect is more fully realized. But how long that period will be for you is not something predictable.
Sometimes the doctors start up the ATD again for a while after RAI to help with the symptoms, and sometimes they also prescribe a beta blocker for the same reason. My endo did prescribe the beta blocker, but not the ATD after RAI. But a return to carbamazole might limit your energy problems to a much shorter time. (Not all doctors do prescribe the ATD again — mine did not. So you might want to discuss this with your doctor, if only so that you are better prepared psychologically for the experience.)
My own experience was that after about three or four weeks, I was feeling more normal again. My endo was alert and started replacement hormone just as I was going hypothyroid, about six weeks after RAI. Getting the replacement started at the right time is also an important factor in how soon you will feel your normal energy levels return.
I hope this helps. And I wish you good luck with your treatment.
in reply to: What took me so long? #1074487The type of logic that you ascribe to the surgeon could just as easily be turned back on him: he wants to operate to keep himself in business….. I don’t, however, think that good doctors try to keep people sick so that they have job security, neither do I believe that good surgeons suggest surgery to give themselves an income.
If you have a cold nodule, the odds of it being cancerous (or ever being cancerous) are slim. But, if it is going to cause you to fret, obviously you might need to surgically remove it PROVIDED that your thyroid is controlled enough to make surgery reasonably safe. If your endocrinologist has recommended against surgery, I suggest you get a second opinion from another endocrinologist. (Nobody online is qualified to recommend treatment to you.)
in reply to: Update with questions????? #1075059To answer — or try to answer Kimmie’s question:
A bit of background might help. T4 has a half-life in the body of six and three-quarters DAYS. It is converted to T3 as the body needs it in various organs. The liver is one of them. So there is a T4 "pantry" if you will. We store it for a while, and use it, like canned goods from a pantry.
T3 has a half-life of three-quarters of ONE day. It is the form of thyroid hormone that is used imemdiately in the cell. It is the intense, instant form of thyroid hormone. It is not stored for need, it is used when you take it. It’s like the coke that you drink as soon as you open it: if you leave it out for a few hours, it goes flat.
So, when we take T3 by pill form, giving ourselves a slug of it all at once, we may be introducing too much of it, or introducing it at a time when it isn’t needed, etc. The problem with T3 is a bit like the problem diabetics have with insulin replacement: they take the insulin when they take it, not necessarily when their blood sugar situation requires it. As a result, there is more wear and tear on the body, and the body wears out earlier than normal. Especially with a situation of over-stimulation of the heart, T3 replacement can overstimulate the heart, causing problems.
I took T3 supplementation — a very teensy little bit (half of the smallest dose possible once a day) — for about two years. It started to affect heart function. A friend took T3 supplementation for several more years and was ultimately taken off of it, when heart issues became serious.
So, it is not something to take lightly. Folks who argue for T3 because the thyroid produces a small amount of it, in addition to the T4 it produces have not taken into consideration the huge problem associated with the fact that the thyroid’s production of ANY hormone has controls built into the system and that the thyroid does not produce its T3 only at 7am in the morning (or whenever we are taking the pill).
in reply to: Joint Pain??? #1074565Joint pain is not a symptom of Graves. It can be a symptom of a complication due to the antithyroid medication. So, if you are on PTU or methimazole, you need to tell your doctor.
We can experience more stress on joints if we continue to exercise while hyperthyroid. Because excessive levels of thyroid hormone weaken our muscles, we can experience injuries if we continue to run, or play tennis, or whatever, until our levels have been normalized, and we have the time and opportunity to retrain the muscle strength.
It is going to be hard for anyone online to tell you what is going on. Your doctor is going to be your best guide.
in reply to: Surgery, Change of heart :( #1074555What does your endo recommend? What is his/her best advice for you? That is the first thing you need to focus on. If you have questions about that advice, get a second opinion from another doctor. There can be very good medical reasons why someone is told to do one treatment over another, and only another doctor can weigh those reasons.
Second. I had a tooth pulled a year ago, and the consent form I signed (which I read, unfortunately) contained words about complications that were very disturbing. They listed all of the possible dreadful complications that were even remotely possible. Trying to determine whether something is likely, or whether something is simply mentioned because they want to be able to say that we gave "informed consent" is difficult, especially when our emotions are in over-drive. So, the hard part for you is to put aside the fear and try to look at the surgeon’s words objectively. If he/she was saying that the surgery would be way more difficult than normal, and that there was a strong likelihood of complications, then that is serious and you need to pay attention. If he/she was saying that thyroid surgery (while hyperthyroid) is complicated and that you need to do X, Y, and Z (all of which are in your control) to minimize possible complications, that is something else entirely.
Listen to your heart, and your brain. And talk with your doctors. They probably will not be able to completely alleviate your anxiety, but they do have the experience and the level of education that you need to guide you through this process.
Also — one last point. It is totally common for our doctors to pull us off PTU or methimazole a week or two prior to RAI. The drug will interfere with the ability of the RAI to "work" optimally. So they stop it soon enough to allow any residual drug from remaining in the thyroid at the time of the treatment. They may start the PTU up again fairly soon after RAI. But stopping it prior is SOP.
I do wish you good luck with your decision
in reply to: Nearly 3 yrs Off ADTs & Still in Remission! #1074583It’s great to hear from you again, Laurel, and especially great that you are doing well right now. Thank you, so much, for contributing this message to the people now on the board. As you may well remember, encouragement from someone who has had successful treatment is always important to morale.
The NGDF provides help for individuals who would like to start a support group, so you may find some information on the home page. NGDF also provides training before conferences. But I think they want folks who have gone through the disease, and are now healthy: it is not necessarily good for someone who is still in the throes of hormone imbalance and illness to take on the running of a support group.
in reply to: Treatment issues #1074596Shebaj, did your pcp give you a blood test and check your thyroid levels? Are you currently taking the PTU or other antithyroid medication? If not, go back to the PCP. Anxiety meds might, in fact, help with some of the symptoms that are plaguing you, if you are taking them IN ADDITION TO medications that control the levels of thyroid hormone. But if these were prescribed without doing a check on your blood, there is still a question about whether the treatment is sufficient for you. PCPs are knowledgable enough to prescribe antithyroid meds.
It can help if you start to routinely ask your doctor’s staff for blood test results, and keep the copies in a file. We patients do not have the knowledge or experience to INTERPRET these tests, but it is dead simple to look at the report and find out if the thyroid numbers are within the normal zone or not. If they are abnormal, the lab report will tell you that, clearly, and indicate whether the numbers are either "high" or "low". If your numbers are out-of-whack, you need something other than, or in addition to, the anxiety meds : something that will control you thyroid levels.
And, in the future, know that these antithyroid meds are supposed to make you feel well. That means that while taking them, they are controlling enough of your thyroid production to put your levels in the normal zone. But feeling well while on the drugs does not mean that you will feel well if you stop them. And, while you are taking these meds, you need to have blood tests done fairly routinely (every month for a while, then spacing things out), to make sure that the dose remains sufficient for you.
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