Graves' disease radiation therapy Tuesday!!

I had this procedure in the mid-90's so don't remember all the details. I hadn't been on medication beforehand. I don't remember feeling or doing anything different right after the treatment. I do know my hormone levels declined very slowly; I needed surgery but couldn't have it until my T-4 was within normal parameters, so they had to give me PTH even after the treatment to hasten the process. As soon as I had the postponed surgery, I went off the PTH because of the bad side effects.

As soon as my levels dipped below the norms I was started on levothyroxine and have been on it ever since. I would assume you might be off all medications for a period of weeks or months, but then will be on hormone replacement.

Hope this helps.

You're most welcome. I'm going to give you a link to a site that has additional information. It includes a list of precautions you may or may not be asked to observe after your treatment. As I said, I don't remember my doctor giving any restrictions other than to keep my distance from young children and pregnant women for a week.

www.thyroid.org/radioactive-iodine/

After your treatment you will probably slowly become hypothyroid and will need to take replacement hormone. A small price to pay for being able to sleep at night and not feel like your heart is jumping out of your chest, IMO.

I've been on ATD's since Nov. 2013 and my doctor has lowered my dosage down to 5mg per day from 20mg. He wanted to do the RAI back then and I too opted to wait because of a small house and awful winter. As far as informed, this is the most info I've been given. On Tue. A.M. I meet with a radiologist at 10 and after he has counseled me they order the pill from Lansing, MI. I am supposed to take it at 1 or 2 pm that day. My Dr. is on long term leave so I've been turned over to his partner. Haven't seen her yet and won't until a month after treatment. I'm sick of all the hassel with blood tests every month and my white count going dangerously low. Not many options left but the RAI. My symptoms are coming back..thank you for your reply and the support group....dr's office didn't know of any support groups.....

Hi Nervous. I thought I'd replied but maybe I didn't.
When you see the radiologist, don't let him/her leave till you feel comfortable. The radiologist should have all the answers as to the precautions you need to take and for how long. Make a list now of all the questions you shoud ask. Don't feel that any question is stupid.

Now there is the other half of this and that is how your endo will manage things. Ultimately, you will come to a point where you're going in for labs maybe twice a year to tweak your dose of thyroid replacement but you are still in for somewhat frequent labs till you settle down. It really depends on how you react to the RAI and a good endo will help the descent into hypo go as gently as possible. Not everyone needs to go back on ATDs after RAI and if they do, they will need good monitoring. Then there's making sure your endo won't base your replacement dose on TSH alone but T3 and T4 as well. Most people just need the T4 replacement but it's good to have an endo who appreciates that some people need T3 and will pay attention.

You asked at the beginning what the side effects to RAI are. The major one is, you should feel better ;-)
Seriously though, there is a slightly increased chance of developing thyroid eye disease, and if a patient already has TED of it being exacerbated. Good post RAI monitoring will go a long way to decreasing the risk as your hormones come back to normal.

By their nature, the people one meets on support boards tend to be the ones with difficult experience. There are many people who are happy with RAI and with their endo's management. But I've seen so many people railroaded into RAI, myself almost included. Without taking the time to become fully informed, many have regretted it. Thyroid is an interesting thing. Patients have to be really proactive because there are a lot of endos who don't give their patients competent care. Most of the focus of endocrinology is diabetes. And most thyroid patients are hypO, not hyper. So we're in a minority. And for various reasons doctors will nuke thyroids immediately so they don't deal with hyper, they now deal with hypo. It's not easy to find a doctor who is willing to even try ATDs and once you get one, who knows how to monitor patients on them.

But from what you write, you seem to have been given a fair trial on them. Though one more question: do you have nodules? And for anyone here who's dealt with RAI, if a patient does have nodules does that impact how the RAI is given, dosing, etc.?

CFS..
Thank you for the info. Yes you did answer my post and I forgot to mention a thank you to you. So, thank you for all of your info. I did have quite a few questions this am for the radiologist tech and he said the head honcho will tell me more tomorrow. You'd think they would have a printed out informative brochure about both hypo and hyper but my doctor's office doesn't. I asked why not and they stated that they probably should. They been in Traverse City for years. Yes, I do believe that diabetes is a priority to them. All kinds of info in the waiting room about that. Today I had the 123 pill and the preliminary scan. Tomorrow another scan and then I meet with the head radiologist. That's where we decide if I get the big 131 pill or not. I guess it depends on the results of my tests....Thank you again and I will keep posting my progress for other newbies....KMineau

I'm doing well and happy that the drama is over. They gave me 16.1 whatevers?? which is the bottom of the high dosage. I was very tired on Tues. and slept well that night. Last night was a different story. Tossed and turned. Upset tummy and didn't want to drink the required gobs of water. Today I feel okay and don't seem to be glowing. Thank you to all who replied to my inquiry. The Rad. Dr. was very nice and very informative. Never got an answer from the endo Dr. about why I couldn't stay on Methiimazole as long as I would have to be on medication the rest of my life. Rad. Dr. explained that the side effects of that medication are ten times worse than the radiation pill and the hypo med. that I will probably be on. Apparently, liver and kidney damage are a biggie with Methimazole....anyway, doing great so far....will post after I go off this darned diet....Saturday will be a nice juicy steak with a big glass of milk and maybe I'll use some salt....Bye and best to all, KMineau

My endo studied under the dr. who discovered anti thyroid drugs. He maintains that true reactions to ATDs are very rare. My very anecdotal experience, on thyroid boards, is that reactions aren't as rare because doctors aren't dosing patients properly.

The reason I 'm bringing this up is because in other specialties doctors aren't as bent out of shape over the liver numbers. (Suppressed WBC is nothing to fool around with.) Go on the GI forum and you're likely to hear that GIs let patients stay on immunosuppressants till the liver numbers are up to 5x normal. I haven't heard about kidney damage.

However, there are risks of reaction, however rare. OTOH, synthroid is extremely safe and I don't think there is such a thing as reaction to it, though I could be wrong. I've just never heard of it.