I've had 3 of them over the years and would have no qualms going for another if I needed it. The amount of radioactive iodine used in the test is just a tiny tracer dose. There's a lot of information that can be gathered from the test that can't be gotten any other way.
It is not the same as RAI ablation treatment where they use a large dose of RAI to destroy the thyroid tissue. It's just a scanning procedure that uses an internal dose of radiation instead of an external. Not a whole bunch different than an xray or ct or a tracer scan of any other organ.
My suggestion would be to check into it a little more and perhaps reevaluate your stance on it after you've gotten more information. I don't think you're going to find it as scary as it sounds.
I had one to diagnose Graves disease, it's no big deal. It's used to diagnose thyroid problems, it shows hot spots. Mine showed my whole thyroid was "hot", it also picks up nodules that might also be "hot". It's a very safe and accurate way of diagnosing what is causing your hyperthyroidism. Graves being by far the most common cause but cancer also has to be considered. It's in your own best interest to get an accurate diagnosis.
Thank you for your reassurance, but I still can't bring myself to do it, even after doing a lot of reading on the net. In fact the reading made me more leery--some people do have horrible side effects.
Surely there has to be another way. I see that pregnant and nursing moms can't do that test.
Meanwhile I am in no man's land. My doctor--a general practitioner--never called. Before I got the results, she had someone call me to tell me to show up for the RIU test. I declined, but they scheduled it anyway. The testing center was never called, I canceled when they called yesterday to remind me of my appointment. How's that for efficiency? Don't talk to your patient, don't give her the lab results, just have someone else call and tell her to show up for a test involving nuclear medicine.
So now it's been more than a week. I'm having difficulty sleeping--rapid heartrate interferes. I'm wondering what to do next.
I think I need a referral to an endo doctor, but I can't get a hold of my doctor, not even after several days. It seems I'm being punished for not being a good patient.
The benefit of the uptake scan (you can ask them to use rai 123 instead of 131 if you want something less), is that a doctor can determine if the reason you are hyper is:
1. Graves with a high uptake
2. A "hot" nodule spilling hormone
3. a viral thyroiditis with a low diffuse uptake
4. a hashimotos thyroiditis
If you read people's experiences in general on the internet, they will generally be negative, as most people with positive experiences wouldn't spend the time to post about them. There is also an option of an RAI 123 uptake which has a different level of radiation. If you really want to find out what's wrong and seek treatment, you might want to keep open to testing and not rule anything out, and discuss fears with the doctors who are administering
If there were another way, we'd tell you.
The risk of remaining hyperthyroid is far, far greater than the risk of this test. Sometimes you have to do what you don't want to do for the greater good. Life is full of situations where you need to assess your risk:benefit ratio. This is one of them.
While you are reading people's experiences of RIU tests, take the time to read what can happen to you if you leave your hyperthyroidism untreated. You are so much more likely to have devastating consequences from not having it treated than you are of having side effects from RIU. I think most people who visit these boards are very health conscious and a lot of us are hypercondriacs, so we understand your fear of having the test. I wasn't too thrilled about it myself but decided it was better than the alternative. I think the best thing for you would be to see an Endo and discuss the situation with him/her.
Cancer runs in my family too. Between my folks, they have survived 6 cancers of various types. Still, I have my various tests done - the ct's, the xray's, the raiu's and whatever when I need them. I need them a lot too cause I'm one who suffers the long term effects of untreated hyperthyroidism. As someone mentioned above, absolutely no fun at all. The effects of that are much more likely to kill me than any of the radiation exposure I've had. In fact, I've got survival rates to look forward to right now that are pretty equivalent to the one's I'd have if I had cancer. All cause of a silly little gland that never got treated proper. Sure, I think about all the radiation exposure as I'm looking forward to my 6th exposure just this year. However, I also know that I could pretty much offset that exposure by closing myself inside for a day and avoiding the sun. The amount of radiation exposure by current scanning methods is almost negligible nowadays. It's not something I would want to do everyday but I'm not going to spend all my time worrying about it either. I'd rather be well and the only way I'm going to get there is through diagnostic scans.
Are you sure you're reading stories regarding the rai uptake scans or are you reading stories of post rai ablation? Honestly, I've not run across a group of people who've had problems with the scans. However, I've run across a lot of people who are new to this and aren't aware that there's a huge difference between the two.
Thank you all so much for your concern. I'm thinking about all you've said and considering, as you've said, the risk ratio.
I saw my normal PCP yesterday. He's sending me to an endocrinologist, but unfortunately my appointment is more that five weeks away. I didn't realize how long the wait would be.
Meanwhile my doctor gave me a low dose of propranolol (inderol?) to take when my heart starts racing at 120+ beats per second. He told me not to take it otherwise though, as my heart rate was about 72 beats per minute yesterday. That's in the normal range, but high for me, as an runner I had gotten my heart rate down to 48.
Also I can' exercise at all, nothing, until I see the endo and my hyperthyroid is stabilized.
I think I'm going to climb the walls, but I'm trying to follow his instructions. I'm normally pretty active and work out at least three times a week.
As for the RIU test--maybe I was wrong, maybe I should ask them to reschedule. It would be hard to wait until the end of June for an appointment and then be told I need to take that test--and have to wait some more. So I'm considering it.
I was told when I made my endo appointment to call back, even everyday, to see if there was a cancellation. So I called this morning, someone canceled, and now I have an appointment for tomorrow morning
Great! make sure they do the full thyroid panel with the antibodies. Positive TSI means Graves. Ask for an ultrasound, they might be able to tell if your thyroid looks Hashi-like, possibly. I'm going for one next week.I had the uptake scan a few years ago and it showed no nodules,and a normal uptake of the iodine, but possibly high normal. I think I had them stumped but my new endo thinks it may have been a Hashitoxicosis back then, not just Graves.
GG, thank you so much for your help! It helps so much to talk about this, and realize that I am not alone. It also really helped to hear you talk about what you've been through, and what tests were done on you.
I saw my endocrinologist this morning. He said it's clear I have hyperthyroid. He thinks it is an autoimmune condition, but he doesn't think it's Graves because my thyroid is so small. He ordered blood tests--the full panel, gave me a med to start, but told me not to start until the iodine scan next week. He also ordered an ultrasound, also scheduled for next week. I will see him again in three weeks, and have blood work done three days before that.
So I'm on my way, and for that I am grateful. I'm still not happy about the RIU test, but then again, he said the radiation dose is extremely small, about the same as an X-ray.
Still no exercise. I can walk normally, etc, but nothing more. My husband is afraid to have sex because of the no exertion rule. I should have brought that up with my endo, but I didn't Also what about caffeine? I should write these questions down, next time I'll do that.
Yes, my thyroid is small too I was told. Sometimes you can have high levels of hormones and it's not just Graves but Hashi too, this is what he probably meant cause auto immune thyroid disease is one or the other.You can go through a hyper phase with Hashi where the thyroid releases hormones when dying off. Make sure you right from the start get copies of labs, you're going to want these first ones down the line, believe me, to compare them with other ones once you start the meds. I have all of mine, since the beginning. Learn what the ranges are and where you are in the ranges. Write down how you feel at each lab and you will be able to tell where you feel better, high or lower. I couldn't exercise at first, my heart would go too fast. They didn't put me on a BB either cause they said my pressure was too low and I guess my heart rate wasn't too high, but it felt high to me. With me at the beginning, before meds I would have bad days and days I felt okay. For the most part though the rapid heart,bounding pulse,Graves rage and really weird feelings were too much. I went like that almost 6 months before the doc put me on meds. He thought it was sub acute thyroiditis. Then he said T-3 toxicosis. He never really said Graves.(cause he didn't know for sure). Now my new endo won't really commit either and calls it auto immune thyroid disease, like yours said. It seems it's much more common than most docs think. To maybe have both going on.
GG, thank you so much. That's a great idea, to get a copy of all the labs. I'll do that. And thanks for the idea of noting how I feel at the time of the labs.
The blood work done today may rule out Graves, we'll see. I have the feeling that this is going to be a try-and-see process. Since my mom had the same symptoms at about my age and went into remission after a year, I have hope that I will do the same.
I don't feel rage, or even hyper, but instead a feeling of unease, and even depression. I normally can pull myself out of depression by getting the endorphin high from running, but even before they said no exercise I have not been able to run, I just haven't felt well. So I was walking fast instead.
I am going on. Surely I will start feeling better once I stabilize on meds. Here's hoping that will happen.
Again, thank you for all your help. If I could see you, I'd give you a hug, but instead I'll send you (((((hugs))):hug: