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in reply to: Swollen Lids & Headache? #1171956
Sleeping with the head of your bed elevated (on bricks, for example) can help.
Using baggies of frozen peas on our eyes can help a bit with the swelling.
There are non-prescription sunglasses that protect our eyes from light from the sides and top, as well as the front. One of the brand names is “Fitovers.” Typically, you can find some types of them at pharmacies.
in reply to: One month Post RAI #1171952I think it helps a lot to keep your focus on what is “better.” It takes time at normal levels of hormone for our bodies to heal, but focussing on what is better helps tolerate the wait. ; )
About five weeks after my RAI, my TSH showed that I was very mildly hypo. I felt terrific. My doctor told me that that was the “worst” I would feel, and she was correct.
I understand that TSH lags. From what I’ve read, it is supposed to lag a bit. But I believe it lags in BOTH directions, and that is just the way things work.
Being mildly hypo, in my opinion, is significantly better than being hyper.Be sure to ask both your doctor and your pharmacist about the correct way to take replacement hormone. This includes not taking it within four hours or so of other supplements (vitamins or calcium for example).
in reply to: stopping meds – what to expect? #1171942I haven’t been through what you are experiencing, but I do wish you good luck and a long remission.
in reply to: Sorry, but I need to vent! #1171815The way it works is like this:
When you have too much thyroid hormone in the body, the pituitary lowers its production of thyroid stimulating hormone (TSH). When we have huge amounts of thyroid hormone in our blood, the production of TSH goes so low that any normally functioning thyroid cells will “shut down,” as a result. With Graves, we don’t have any normally functioning thyroid cells to speak of. On the uptake and scan they will be lit up like a holiday tree, because they will have taken in as much of the RAI as possible. But when you have an “autonomous node” (which is like what you are describing) normally functioning thyroid cells will be turned off, and will not take up the RAI. The only place in your thyroid that will take up the RAI are the cells in the malfunctioning node. The RAI damages the cells that take it up, but not any surrounding cells that do not take it up.
in reply to: HELP: Could it be a misktake???!!!….. #1171930Hi, Jennifer: I don’t know about the watch and wait issue. The information that I have read, from doctors writing articles in the old ATF newsletter, for example, was that they were finding that even “subclinical” levels of hyper had been shown to have adverse long-term health implications. For example, while we are hyper we lose bone. For some reason, the bone-munching cells in bone work harder and faster while we are hyper than the bone-building cells in bone. So, we are at risk for early osteoporosis, the longer we are hyper. Muscle wastage is also an issue.
I think it may be more difficult to modulate the meds if the level of hyper is minimal, but letting it go on may not be wise, either.
in reply to: ACK! Could we get a diagnosis please??!!!!! #1171879Shirley, from what I’ve read, post-partum periods are one of the major risk times for developing Graves. And that post-partum thyroiditis often is a precursor to a full-fledged Graves developing.
Alexis: It is very difficult to know what to do, when you get different medical personnel telling you different opinions. So, I am giving you hugs, and hoping that whatever course you select, it turns out to be the right one for your health.
in reply to: HELP: Could it be a misktake???!!!….. #1171927I would point out that you wrote “TSG 3.910”. We all took that to mean TSH, not TSG — including you, jamcam66, I think. I tried to do a bit of research to see if there was any medical test that could be so labeled and couldn’t come up with anything appropriate, so it is likely that that was just a typo and the report was for TSH (and the TSG was your typo). However, keep the possibility in mind, when you talk with your endo, that the test result really was for something labeled TSG. And if that is the case, would you please write back and let us all know what it is?
in reply to: Relapse about 4 months after RAI #1171914I can empathize with you JoeSunny. A few months after my RAI treatment, and after being put on replacement hormone, I was gradually weaned from replacement hormone, as I kept going hyper. I began to call my thyroid “T-Rex” or “Arnold” (after the Terminator character that went through the truck fire — translate RAI — and came out skeletal, but still lethal.) I don’t quite know what was going on back then, but after spending a couple of months completely off replacement hormone, I gradually had to start increasing it again. The bottom line is that it is all a process. We DO have to wait a minimum of five or six weeks before having our blood tested again. It is the nature of the beast. Try to stay patient, and positive. Not easy to do, I know.
in reply to: Ovarian Cysts / Thyroid Imbalance Link? #1171902To my knowledge, the scientific literature does not support the idea of there being a connection between an imbalance of thyroid hormones and the development of ovarian cysts. I.e., it does not happen to enough of us for it to be statistically significant.
Also, the CA-125 test has so many false positives built into its results as to be unreliable when it comes to diagnosing the presence of ovarian cancer. I realize that chain emails online suggest it should be used across the board, but even being in a certain portion of our menstrual cycles can lead to elevated levels on that test. Whether or not the test is of use to any individual patient should be determined by the physician on a case by case basis.
in reply to: Why is RAI so controversial on the internet? #1171854Actually, I think the “failure” rates for RAI and thyroidectomies are about the same. At least, they were the same when I was diagnosed and treated 15 years ago. The reason is that if too much thyroid tissue is left after either procedure, the antibodies can stimulate it to produce too much hormone. Some doctors, when I was first diagnosed, tried to produce “euthroid” conditions (i.e. normal thyroid levels) with RAI, or sub-total thyroidectomies. This is always a fragile guess. Sometimes too much is taken out any way, and replacement hormone is needed. Sometimes too little is taken out, and the patients remain hyperthyroid. I once spoke with a surgeon, for example, who believed he could guess quite accurately about how much thyroid tissue to leave behind. Nowadays, given the failure of these euthroid attempts, it seems like most of our doctors go for “ablation.” That term means the utter destruction of the thyroid; not leaving thyroid tissue behind. With ablation there are fewer failures.
As mentioned in a previous poster, determining how much thyroid tissue to take out is a bit of a guess, based on the size of the thyroid, and the percentage of uptake (both factors provided by the uptake and scan tests). But I only had 8 millicuries, and I was hypothyroid in 5 weeks and on replacement hormone. (I had a rather high uptake, and a rather small thyroid.) So, we probably do not need a set dose six times higher in all cases.
Hi, and welcome to our board.
First: Web sites like ours are dominated by people who are really sick. Once people get well again, they do not spend their time writing on boards that deal with illness. They get back to their lives, only occasionally dropping in, if that. In other words, these sites are skewed towards illness, and problems, not happy ever afters. If you doubt that, please use our search system to go back a year or so, and look at what was being written then. And who was writing it. The stories remain the same. The names of people posting change.
GDATF tries to keep some volunteers who have gotten healthy again to work with support groups, and on this board, in order to keep perspective. I am one of them. Kimberly is also one of them. James (who drops in infrequently) is another. Ski is another.
We DO get well again unless we have been undiagnosed for so long that permanent damage results. The treatments for Graves work to control our thyroid hormone levels in the proper place, and our bodies heal. There was an Olympic track runner a decade or so ago, (whose name I forget — Jackie Joyner perhaps?) who came down with Graves/hyperthyroidism, got treated, and was able to return to the next Olympics. We do get well again. We have to “follow the rules” with regard to our medications, and get periodic “well checks” to make sure our thyroid levels are in the normal zone. But it is a very treatable disease.
in reply to: Finally, starting to see the end of the ride… #1171866Hi, and welcome to our board.
It is truly appalling that you have been suffering for so long, untreated. And one thing you must keep in mind, as you go forward, is that it takes time at normal levels of thyroid hormone for your body to heal from being hyperthyroid. The longer we are hyper, the longer that healing time can take. So do not expect to feel well right away, even if your numbers stay controlled in the normal zone. I think of it in terms of hurricane winds. (I live in hurricane country part of the year.) Hyperthyroidism is like a metabolic hurricane. And just getting rid of the winds does not mean that things are instantly back to normal. It takes time to rebuild communities, and it takes time for the body to rebuild. But we can get there most of the time — back to feeling normal.
While the antithyroid drugs like Tapazole typically work well to interfere with the body’s production of thyroid hormone, there is a balancing act involved in making sure that we are on the proper dose of it. Antibody action can cause our bodies to need higher, or lower, amounts over time. So one dose does not necessarily work forever, and dose changes need to be taken into account. We can move between hyper and hypo, through no fault of our doctors.
That will also hold true if you have thyroid surgery, and are placed on replacement hormone. Your body might need more, or less, of the replacement from time to time. It’s important for our blood levels to be monitored at appropriate intervals. Typically, while we are being first treated (by either antithyroid meds or replacement hormone) we have to get blood tests every two or three months. Once a more stable level has been achieved, blood tests once a year might be the appropriate spacing. But we will ALWAYS need to be monitored. So, going forward, pay attention to getting your levels checked when you feel “off.”
Try, also, to make adjustments with how frequently you drink water. If you are experiencing frequent periods of dehydration, you need to carry a water bottle with you. And use it.
One thing to keep in mind in the face of criticism from family and friends, is that we need to be our own BEST friend while we are sick with wonky thyroid levels. Once we are well again, OK. We can listen to their comments. But while you are sick, treat yourself the way you would advise your best friend to be treated, if he/she were feeling the way you do. We are sometimes our own worst critics — but we need to cut ourselves some slack until we get back to controlled, normal levels of hormone.
I do hope you are feeling better soon.
Antibodies have VERY specific functions. Just as any old key will not open any old lock, antibodies can only interact with the specific protein combinations that they were formed to “attack.” Our antithyroid antibodies affect thyroid tissue, not brain tissue.
Antibodies have VERY specific functions. Just as any old key will not open any old lock, antibodies can only interact with the specific protein combinations that they were formed to “attack.” Our antithyroid antibodies affect thyroid tissue, not brain tissue.
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