Forum Replies Created
-
AuthorPosts
-
in reply to: Graves’ in “seniors” #1174665
I’m a bit confused, maryelled. Why should doctors “move out of textbook mode?” I, personally, am a very numbers-based, fact-based person, and I find it comforting to know that millions of folks have been treated for Graves over the years by X, Y or Z treatment and gotten well again. Eventually. The thing is, I think that it gets harder as we get older to RECOVER from being hyperthyroid, just as it gets harder to recover from any serious illness as we get older. It’s frustrating. (I’m approaching 70.) I recovered in a week from laproscopic gall bladder surgery when I was in my fifties, but it took me six weeks to recover from a similarly non-invasive procedure about five years ago. It takes us weeks/months AT normal levels of thyroid hormone to truly heal. It is not simply a question of getting to normal levels and feeling wonderful all at once.
in reply to: Professional weight loss help #1174684I have not sought professional help, gatorgirly, other than to get exercise help. On the diet front, by eliminating sugar (AND artificial sweeteners) I have pared off 17.5 pounds in the past year. If I were able to give up things like french fries and my daily glass of wine as well, I assume I would have lost more.
I basically substituted fruit for sugar/sweeteners and was not expecting any great weight loss. Boy, was I surprised!! I have come to view sugar (and artificial sweeteners) as toxins, and addictive ones at that.
I do wish you luck,
in reply to: One Day After My RAI #1174575You may expect to experience a soreness in your throat area. The thyroid “resides” in the throat, and as the RAI works to destroy thyroid cells, it causes some inflammation and soreness.
About one week — give or take some days — after the RAI, you can expect to feel more hyper than normal. Thyroid cells not only make thyroid hormone, but they store it for future use. So when the cells start to die off, they released their stored supplies into the body. This period of increased hyperness usually lasts but a few days.
Congradulations on being on the road to recovery from you Graves. I hope you are feeling much better soon.
in reply to: Day 2 RAI Treatment #1174213Yes, mariaboo, thousands upon thousands of us get the correct dose of synthroid (or other replacement hormone brand) and get back to normal life. Just because you read about problems online does NOT mean that problems are the “norm.” This board, and others like it, are skewed to “not normal.” People who get healthy again disappear, and only infrequently pop in to offer moral support.
in reply to: Worried mother of adolescent #1174503I would definitely talk with the doctor about the pale and clammy, and ask for another blood test to check his thyroid levels. We start out on a dose of the antithyroid medication (methimazole) that is a rough guesstimate by the doctor about how to get the thyroid levels rapidly under control. The methimazole interferes with the thyroid’s ability to produce hormone. But sometimes we get too big a dose, and it makes us hypOthyroid, and we have to adjust the dose down. Or, conversely, too small a dose, and we remain hyperthyroid and the dose must be adjusted up. Checking the blood every few weeks is appropriate until a dose is found that seems to control the thyroid levels in the normal zone. Even then (when it seems we’re controlled in the normal zone), we need to have periodic blood checks to make sure things are stable. The problem is caused by antibody action, and those antibody levels can change for no well-understood reason.
in reply to: RAI or Thyroidectomy #1174499There is a permanent post on a top section of the bulletin board which lists the pros and cons of surgery and RAI, mariaboo.
As for RAI making you more hyperthyroid, yes. About one week after RAI, as the thyroid cells are damaged by the iodine isotope, they release their stored supply of thyroid hormone. They are not making new hormone, however, so the period of time when we are more hyper than normal, perhaps, is limited to a few days. The most potent of the hormone released (T3) only has a half-life of three-quarters of one day — in other words 18 hours. So, when that is released, there are 18 hours of more intense hyperness. If the cells die off at different rates, that hyperness can last a few days. But, in my case, my endo prescribed a beta blocker to help with the heart symptoms, and I was told a dose increase it to during the thyroid cell die off. I only had to increase the dose for two days.
I mention all of this because for me, at least, knowing WHAT is going on, and how long it might last, helps with the fear. I hope it helps you, as well.
Yes, to both hives and itchy skin — from different posters over time. I experienced the itchy skin during my bout with Graves, which was, in my case, due to excessive dryness. But itchy feeling on the skin and elsewhere on the body might also be due to a drug reaction. I itched everywhere including my eyelashes with a drug reaction a couple of times. The only way to know, is to consult with your doctor, and I wouldn’t wait until the appointment to call.
Since it’s the weekend, and you may not be able to get through to talk with the doctor to a PA (but try — if it’s an allergic reaction waiting might not be desireable), you can try using a VERY good moisturizer and see if the problem is dry skin. Even petroleum jelly, applied to WET skin, can provide good moisturizing. Any moisturizer, to do its best, needs to be applied over wet skin.
in reply to: After RAI treatment, what to expect #1174348The point of RAI in today’s world is to completely eliminate the thyroid (“ablate” is the term), and then go on replacement hormone. In previous decades, doctors sometimes tried to give the “Goldilocks” amount of RAI to make the patient not hyper, not hypo, but “just right” (euthroid). That didn’t work most of the time, if euthroid was the goal. So, to get us well faster, they typically try to ablate nowadays.
It can take some months of tinkering to find the proper dose of replacement hormone. The replacement hormone is very finely tuned thyroid hormone. So, if we get too much of it, we become hyper again. Too little and we remain hypo. We have to wait a minimum of six weeks after a dose change before having new blood work, in order to avoid going on a hormonal roller coaster. (If the blood is tested too soon, the actual level of replacement needed might not be evident.) We have to be patient during these times.
And, while the replacement hormone starts being used right away in the body, we cannot expect it to be a “feel good” pill. It takes time AT normal levels of hormone for our bodies to heal after the illness that hyperthyroidism caused.
When I had my RAI, I became very pro-active about weight issues and eliminated sugars, and lost weight. I’ve recently done that again, with the same good results. I allow “nutritional” sweets — i.e. fruit, primarily — but ruthlessly eliminate any sweets that are empty calories. It does make a difference, for me at least. By eliminating empty calories, I’ve lost almost twenty pounds in the past year. It comes off slowly, but it is staying off. I hope you are feeling much better, and soon.
in reply to: Just diagnosed #1174271Some people have the antibodies for both Hashimoto’s and Graves, which creates huge problems. The antibodies can “take turns,” making it difficult for you to get regulated at normal levels of hormone.
Taking levothyroxine can make you hyperthyroid (a technical term for too much thyroid hormone), but it cannot, to my knowledge, trigger Graves.
It is not at all unusual for us to have “some” signs of the eye disease. But having some signs does not mean that we will go on to full-blown awful eye disease. If you are concerned, getting evaluated by an opthamologist can be helpful. Our endos do crude eye examinations (asking us to follow a pencil or finger moving around the perimeter of our vision), but they do not treat the eye disease.
in reply to: First Normal Labs Since RAI #1174245Please keep in mind, gatorgirly, that just getting to normal levels of hormone does not mean you necessarily feel your old self. We need to be at controlled normal levels of hormone for months in order for our bodies to heal properly from the problems created by too much, then too little, thyroid hormone. We need to regain muscle, muscle strength and stamina again and that takes some work.
I do hope your upcoming surgery goes well.
in reply to: Surgery to remove thyroid? #1174264Hi,
I have been living on synthroid for the past 15 years or so. I feel fine. As do most of the friends I have who have had their thyroids removed (several of them for thyroid cancers) and who are living on synthroid. Synthroid is chemically identical to thyroxin (T4), which is converted into T3 in various parts of the body, and is used in cell metabolism. “Hypothyroid” is technically a term used to mean that the body has too little thyroid hormone in it. If you supplement with replacement hormones like synthroid, you become “euthroid,” i.e. you have normal levels of thyroid in your body.
The surgery does run the risk of damaging the nerve that services the vocal cords. There are some precautions that surgeons can take to prevent this, but it is one of the possible adverse side effects of surgery. The key is really to have a well-qualified thyroid surgeon remove your thyroid. Someone who does lots of thyroidectomies every year, and who has a low rate of adverse consequences.
There is controversy about weight issues. Some folks cannot lose weight. Others, like me, are at a normal weight if we eat properly and get the right amount of exercise. (I sometimes lapse.)
I also had the eye disease, so I sympathize. Keep in mind that it does go away. And I found that I looked better if I smiled (yes, I did some “mugging” in front of the mirror), so I began to fret about it less, and smile more. ; )
Take care,
in reply to: Dependent on Hormone Pills #1174134It would probably be better to go with sources published in reputable journals that require peer review.
in reply to: Possible to be Hyperthyroid 6 months post-RAI? #1174167Hi, and welcome back. I’m glad things have been going well for you.
Keep in mind that replacement hormone IS thyroid hormone. It is also a type of drug that has to be very carefully calibrated to the specific individual. So, if you are on slightly too high a dose of it, you can become hyperthyroid again. That has happened a couple of times to me over the past fifteen years. We change the dose, slightly, and things are fine again. In my experience, this type of situation was never as horrid as full-blown hyper (with undetectable TSH), and it was quickly “fixed.”
Another, less likely possibility is that “some” thyroid tissue remains and has flared. But given the tendency of today’s doctors to totally ablate the thyroid, that is much less likely. Back when I had my RAI, doctors were just starting to totally ablate, but many people were given lower doses to try to keep “some” thyroid tissue. They sometimes had to have a second dose of RAI. I don’t hear of that happening as much in recent years.
in reply to: Dependent on Hormone Pills #1174124While it is true that the Graves patient (with thyroid) carries a small dose of radioactivity in their thyroid region for a few weeks, the cancer patient is eliminating the majority of their significantly larger dose of radiation through saliva (kisses), sweat (the bed), and urine for two or three days. Perhaps longer, I don’t know, given the dose that they take how long it takes for them to eliminate it from their bodies. And they do this more than once in many cases.
This also happens to us (the saliva, sweat and urine) as we eliminate any RAI that does not get taken into our thyroids. That is why the precautions that we are given often include more safety measures during the first week after taking the RAI.
It sounds like you are listening to alarmists, and amateurs, and not your doctors
and other medical personel who have studied RAI. Do you avoid dental xrays? Well the dental technician has to leave the room before turning on the machine, after all. Do you fly? (We are exposed to radiation in airplanes.) My point: “some radiation” exposure levels are acceptable levels of radiation, and other levels are not.How much radiation are we talking about? It varies, which is why you might need to ask your doctors objective questions if you continue down this path. Objective question: what can I compare this radiation dose to? You might find that the comparison is totally acceptable to you. Or not. But asking the question can help you make an objective decision.
It might help you to understand more of the process. I can give you my example: I was given 8 millicuries, based on my level of hyperactivity (65% uptake — if I remember correctly– in 24 hours) and the size of my thyroid (small). So, after two or three days, 65% of the 8 millicuries should have been lodged in my thyroid, or approximately 5.25 millicuries. So, the next question, would then be what does that equate to in, say, barium upper GI xrays or the radiation I would be getting going through an airport scan and taking a five hour flight, etc. So, if you take your uptake numbers, and the amount of RAI that you would be given, you would have a number that you could ask your doctors to compare to something you would know more about.
Then. RAI has a very short life span as radioactive elements go. According to your article, the half-life of I131 (the treatment type of RAI)in a hyperactive gland is 5 days. So in 5 days only half of what made it into your thyroid is still there. So, in my case that would have been two and an eighth millicuries. After 10 days, one and one-sixteenth millicuries would have been left. And so on. I have read that after five or six half lives scientists consider the radioactive element essentially “gone” because there is such a tiny amount left. So, in our case, that is a touch over one month.
Having a doctor’s letter if you plan to travel is a precaution. Most of us do not set off the radiation detectors in airports. It totally depends upon the airport detecting system. We are NOT emitting large quantities of radiation. Point in fact: the radiation that we do get has been shown to be safe for us. Study after study after study has been done to look for problems and found very very few. It may not be utterly, completely and totally safe, but what medical intervention is?
The bottom line: all of our treatment options are incredibly safer than remaining hyperthyroid. We typically get well again, which does not happen if we remain hyperthyroid. So do consider the pros and cons of each treatment option. Do listen to the advice of your doctors particularly when they give you medical reasons why they think that one treatment option might serve you better than another. But do not fret endlessly over safety issues unless your doctor specifically tells you that one option is much more medically dangerous — for YOU — than another. Some of us have livers that cannot tolerate the ATDs. It is not rational to risk a liver — which we need for life — to save a thyroid (which we do not need). Some of us have underlying heart problems, and it might be much safer to do long-term ATDs than to risk RAI (which causes us to be temporarily much more hyper than normal). Etc. Or surgery. The task is to be as objective as possible. It is not easy to do that, I know, but you will serve your needs much, much better if you can try.
I think it is safe to say that having surgery to remove your thyroid is NOT guaranteed to prevent the occurance of TED. Talk with Shirley on our board.
-
AuthorPosts
