Hi and thanks for the information. My dr. wants me to due that radioactive thing to kill the thyroid. I do not want to do that. I'm scared. I have not been normal for the past 4 yrs and I don't know what I will be like if I do kill it. Any advice?
It is possible for your Endo to give you a small dose of RAI, which would kill part of the thyroid. Once in a great while a patient can go with no drugs for several years if this is done. Eventually, the thyroid starts to slow down and then meds are needed.
I am waiting for RAI to totally kill my thyroid, because my hormones cannot be controlled with meds, like you. We've been horsing around for a couple of years and I can't get stable.
I'm ready to get rid of mine. It is nothing but trouble.
I understand your concern. Once the organ is gone, you can't get it back. But you've been on the Hyper side of life for four years. That's a long time. you haven't been well either, have you?
TSH suppressors like Methimazole are not drugs you can take long term. They are usually tried for a year or two and then discontinued. Sometimes the thyroid will straighten up and function normally after this, but not often.
Radiation therapy (RAI) is the next choice. They may give you too much and then you have to take Synthroid, or they may kill it completely and then you have to take Synthroid.
But you've been taking a drug for four years that is hard on your body, isn't working, and you don't feel well. The worst thing that can happen is that you will be stuck with a different drug and you won't feel well.
It may take a year to do the RAI and find a drug dosage that brings your TSH into balance. It might even take two years. You may exchange some symptoms making you miserable for some other symptoms that will make you miserable.
But you may find your way back to good health. No promise, there is no guarantee, but it may happen. It's a hard decision to make. You can't take it back. But after four years of trying one thing, and it hasn't worked, it's time to try something else.
Just my opinion. It's a decision you have to make. It's your body.
Start a topic asking for experiences from people who had RAI and get input from people who have done it. Some of them are feeling great. Some of them are still struggling. Talking to others who have had it done may help you decide one way or the other.
Thank you so much for your input. My brotherinlaw had the RAI treatment and now he gets sick alot and he's always cold. I don't know what to do anymore. I was very low at one point and I hated it! I would rather be hyper. I want to be normal, I don't know what to do. I hear horror stories about RAI.
I did RAI 11 years ago. My thyroid is still in my throat and it is still functioning. People are under the misconception that RAI totally ablates the thyroid and right away. This is not true in all cases. It depends on how sever the issue is and the RAI dose per your doctors goal in what the treatment should do.
I have had no problems with the treatment. RAI does not cause the problems. The problems might stem from wrong levels/dosage, the illness itself (once Graves', always Graves') or some other health condition. It also takes a while to heal once at the correct level.
There is a lot of scary and misinformation out there. If you are going to search for info., go to legit sites such as, government, thyroid org., thyroid associations, and medical. Not forums with scare tact's. If you want the scoop on the positive side of RAI google graves disease and rai, lot of positive support and warm friendly people.
There are disadvantages to all three hyper/Graves' treatments and they are not a 100% win win situation but they are the best out there and offered for now. However my RAI did its job and stopped my uncontrollable weight loss, it saved my life. Surgery is too evasive for me, unless I am on my death bed and ATDs would not have stopped the weight loss.
One thing is, that you do need treatment and probably sooner than later, regardless of which option you chose. I wish you luck in your decision, its not an easy one.
Wow 11 yrs ago? I never even heard of graves until 4 yrs ago. This is crazy! I don't know what to do.
Has anyone ever died from RAI? I'm chicken ****. I don't like the way I feel now and the fear of not knowing what I will feel like if I do RAI is scaring me.
Before treatment there was a 50% death rate. There has been no record of anyone dieing from having RAI for Graves', nor has RAI for Graves' caused any other adverse health issues.
Although the dose that is given for Graves' varies, it is equal to a day out in the sun or one dental
I think I mentioned, RAI does not have any side effects, but the disease dose and you will have them with all three treatments. After a month or so of treatment, most people say they feel better after RAI then they did before, although not a 100% because it takes time to heal.
There is no certain dose of RAI that is given for Graves'. My dr completely killed my thyroid and it was not a dose like "one day out in the sun" or "one dental x-ray". Mine was very large, drink not a pill, and I had to be away from people for 2 weeks. VERY difficult considering I had a 3-year-old at the time, but worth it in the end to be rid of hyper symptoms. Took mine less than 6 months to competely die.
"Once Graves' always Graves'", not so if they killed your thyroid or remove it. I am physician indused hypo for life. I will take the supplements for the rest of my life. Because of bad drs it took me 4 1/2 years to reach normal levels (.93) but am now living with it very well.
There are side affects to it, but there are side affects with any treatment you choose. I would weigh my options carefully and decide what you think is best. Like they said, taking the antithyroid meds is dangerous and damaging to your body. And AR-10 has been to he// and back not having his done soon enough, so he does know what he's talking about.
"Iodine is a natural substance your thyroid uses to make thyroid hormone, radioactive iodine (RAI) is collected by your thyroid gland in the same way as non-radioactive iodine. Since the thyroid gland is the only area of the body that uses iodine, RAI does not travel to any other areas of the body, the radioactivity is mostly in the form that can only travel very short distances of 2 mms. or so. This is less than one eighth of an inch. It does not even damage structures next to the thyroid gland itself, and the RAI that is not taken up by thyroid cells is eliminated from your body, primarily in urine. It is therefore a safe and effective way to test and treat thyroid conditions. Extensive studies have shown that patients who have been treated with radioactive iodine are not an increased incidence of thyroid cancer or any other type of cancer. Children and young adults who have undergone this form of treatment, have also been carefully studied, and there do not appear to be any increased cancer risks."
columbia.edu dept thyroid RAI. New York Thyroid Center
Radioactive iodine treatment of "hyperthyroidism" makes use of the thyroid gland's natural need for iodine to make thyroid hormone. The thyroid is the only part of the body that collects and retains iodine. In hyperthyroidism, the thyroid cells are over-stimulated and make larger amounts of thyroid hormone. The excess amount of hormones are secreted into the blood, and produce the symptoms of hyperthyroidism. When radioiodine is given, the thyroid gland cannot tell if the iodine is radioactive or not, and collects it in the normal way in proportion to the activity of the thyroid. Radioiodine thus accumulates in the cells that make thyroid hormone and remains there long enough to radiate the gland and to slow thyroid production. Radioiodine that is not retained by the thyroid gland is secreted rapidly by the body (within two or three days), primarily through the kidneys into the urine.
Treatment dose not cure the antibodies and the antibodies are the cause of Graves'. Graves' is genetic and they do not have a cure for genetics as yet. The treatment is for the "hyper" side of Graves' Disease, not
Graves' Disease itself. Once Graves' always Graves!
Even though the goals is to kill off all thyroid tissue there can be active cells left after RAI. The antibodies continue to do their work and this is why we need to continue to be monitored.
If you are not taking med. doses of 250 to 300, you will still have thyroid function. The thyroid secretes approx 250 to 300 mcg/mg of thyroid hormone per day.
Not everyone gets high doses of RAI. I have the normal dosage in my notes for all RAI treatment, including doses for cancer which usually gets at least a double dose. Like I said its up to the doctor and his intensions for your treatment.
Usually RAI is a non-event, meaning that one feels nothing unusual. One may get a slight sore throat several days later. One may feel extremely HYPER within a week of having RAI due to the mass dumping of excess thyroid hormones.
Good Luck and Happy Holidays
My information is from reading material gathered from reputable sources, my 20 years of personal experience and as a thyroid patient.
Give me a break! If the RAI ONLY affected the thyroid and nothing else there would be NO reason in the world to be away from people for any period of time. It is RADIATION!! Do not forget this and yes is does have side affects. If you would get your nose out of your old info and try some of the newer stuff put out especially by the thyroid patients you would see this.
Get so sick of you telling these people all this cr@p that they can read on their own when it does not tell even half the story. They come on here to get info and personal experience. If you had such a wonderful experience with all of this then you don't even have that much personal info to share in the first place. And I know you didn't because you've talked about your Graves' rages too often.
Also in a hyper state your thyroid does not take up as much iodine as it does if you are in a hypo state so a larger dose is needed.
The long term affects of RAI are not shown to be cancer but there are other side affects the radiation itself causes on your body.
All your research and 20 years of experience have not taught you much but to quote info that doesn't fit almost any thyroid patient who has been on here in the time that I have.
Now that I think about it, there's a little more to be considered when taking RAI than I have thought through.
It's not just "the only gland in the body to take up iodine is the thyroid, so it all goes there".
I'm going to put it in my mouth, swallow it, and get it into my stomach. I have sort of almost ulcers. Then it will slosh around and go into my small intestine, where it will be absorbed into my blood system. The RAI will enter my bloodstream, virtualy spreading through my blood stream over a relatively short period and then for maybe two or three days, until my radioactive blood has been filtered by my thyroid or my kidneys, I will be exposing my whole body to radiation.
I will pee radiation. I will sweat radiation. The blood going through my eyeballs will be irradiated.
Still, I took bigger risks when I was eighteen. LOL!! Lived through it.
Mostly wanted to say that I agree with everything DLA said and I still would encourage carendam to consider RAI. I'm going to do it.
Talk to a surgeon, like I did. He'll send you back to the Endo for RAI.
On page four there is a thread titled "New Range". In that thread you posted information by throwing out a bunch of quotes from two sources, comingling quotes to say what you wanted and then listing half a dozen sources.
You took two half paragraphs out of context and merged them to make your point. I posted one of the paragraghs in complete form and showed that it said exactly what you didn't want it to say. You glossed over that as if it didn't happen and wasn't important. Your reply to me did not even acknowledge a discrepency. You just said we were each entitled to our opinion.
In this thread you told carendam you had no trouble with the RAI. You compare it to a dental x-ray or a day in the Sun. You talk about RAI in terms of minimal dosage. When was the last time your dentist told you not to get within ten feet of pregnant women? How many people have to spend a week in isolation after a day in the Sun?
Then you feign sympathy for DLA and her "mental stability" in a hurtful way, in a blatent pot calling the kettle black fashion. Malicious and ironic are words that come to mind.
Liar is a strong word. There are other strong words that would also apply equally well, but I thought short and to the point would do. I am not proud to say such a thing to someone old enough to be my mother, but you earned it.
If you want to pull up that other thread and apologize or show me that I am wrong, I will apologize.
And you need to pick a story and stick with it. Either you have had a wonderful experience with your Grave's disease or you have not. I have seen you post many a time that it's been no big deal for you and you actually enjoyed being Hyper. "It felt like being in love." Is that every month?
Bringing God into this is weak and cheap, but he will forgive you. I guess if you're going to pick someone to hide behind, it might as well be someone important.
I don't want to get kicked off of this board. I don't want to argue with you all the time either. But I'd rather do either of those than sit by and watch you post erroneous information with a biased slant and call it fact.
You very blatantly stated that you know what forums I am participating in, so don't try to lie your way out of that one. And for you to state anything against mental illness is as AR said "ironic". I spent the entire day yesterday and will for at least another week now, that's right all thru Christmas, taking care of some of my family members b/c their son committed suicide yesterday morning b/c of a "mental illness" that they could not get the right medicines to control it. As I said this is a disease that takes hormone replacement just like thyroid. But of course you are too close minded and self indulgent to see this.
This morning I really feel sorry for you. You have to use God as a weapon. That is so sad. I am a Christian and no where in anything I have ever read has it been okay to use God in this way. God is love and forgiveness and all things wonderful. I know that He loves you, too, but unfortunately I am not a good enough person to "love the sinner, hate the sin" so I feel nothing but contempt for you.
There are lots of people on this forum who are sick of the way you twist information to make it say what you want on a given day and I am definitely one of those people. You need to tell these people the whole truth, not just the part that justifies what you want them to believe.
And I was NOT calling any one else a liar other than you. And I will not apologize for it. Just as AR has said, you will talk about how Graves' is like "being in love" in one post and then in another talk about the Graves' rages and how you would throw things and such. Also about how Graves' was going to kill you if you didn't do something (RAI) to stop it. You also do talk about how your numbers change all the time and it is a constant battle to keep the numbers where they are suppose to be and that you change doses all the time. This doesn't sound the least bit easy to me. If your numbers were under control you would only be going back once a year not every 6 weeks. And that is not just what my dr says. Almost every person on this forum who has gotten them under control the dr has said to come back in 6 months to a year. Obviously it is not the walk in the park you would like people to believe that it is.
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