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first time I-131

cboo1974's picture
Posts: 57
Joined: Oct 2008

On November 18th I go in for my first I-131 treatment. Some things that my oncologist and what I've read from other posts on here are different. Like some of you say that you stay on the LID until a couple days after treatment and that you need to be on it for the body scan. I was told that the day that I go into the hospital for treatment I no longer need to stick to the LID and can eat normal again, same with the full body scan I can eat normal before I go in 10 days after treatment for that. I'm just wondering if anyone else has gotten this advice. I'm not sure if it's because I have not gotten on a permanant thyroid replacement because after my surgery I was just put on 25mcg of cytomel so that it gets out of my system quickly. If anyone has any insight I would appreciate it.

straussu's picture
Posts: 26
Joined: Dec 2007

I had I-131 in August for a recurrence of my thyroid cancer that was treated with a thyroidectomy 14 years ago. I had to stay on the LID diet for 5 days after treatment to make sure the radiation made it to the thyroid cells. I never had I-131 14 years ago. I don't know about the medication you are taking. Sorry I can't be more help. Good luck to you.

Posts: 3
Joined: Nov 2008

I had papillary cancer and full thyroidectomy on Sept 3rd. I was on low iodine diet till Mon when I started the treament. I've confined myself to a hotel room for 3 days. I too did not have to continue the diet. I will be getting another scan on Nov 17th.Then Synthroid starting on on the 18th. I have nausea. I thought I would have more energy but I don't. But after my first night my salivary glands both under my chin and under my jaws were huge and tender, Other than that it's been ok. Just drink lots of water and take lots of laxatives because you'll need that. Good Luck and God bless.

erolyn's picture
Posts: 21
Joined: Dec 2008

I just had my I-131 today. Unfortunately they told me to stay on the LID for another week, just to make sure the RAI takes as well as possible. I also was put on cytomel right after the surgery, but I've been off it for two weeks and will be until my next scan on the 14th, when I'll be off the diet and start taking both cytomel AND synthroid for a week and then just the synthroid.

My salivary glands are also really swollen...does anyone know how long this is supposed to last? I'm sucking on the lemon drops but my jaw is still really sore, and it's kind of hard to eat. The doctors didn't explain this very much...

Posts: 3
Joined: Feb 2009

I have to take RAI. I was wondering what dose you had. I was told that I am taking a low dose of 2 millicures. I can't be by anyone for only 2 days. I have to be on the LID though for 4 weeks before! Are people taking 100 millicures? That sounds like a lot!

I was also wondering how tired people got? Where you able to go to work? So far I haven't had any hormone in my body for 3 weeks and I am feeling fine. BTW I had a total thyroidecomy 3 weeks ago.

Thanks for any replies :)

Posts: 3
Joined: Aug 2008

I took 150 millicures; maybe my dose was high beause I was in stage 3 of follicur cancer. My thyroidecomy was 7/31/08. I have not been the same since because I gained 20 pounds, I am always tired and my joints ache. Everyone is different so you may not experience what I did but I was able to go back to work after 3 weeks. I am seeing a new doctor tomorrow, and I hope she changes my medicine from Synthroid to Armour. I hear that's much better.

Posts: 3
Joined: Mar 2009

I was diagnosed with a papillary carcinoma in February and had my RAI scan and ablation last week. Tuesday afternoon I received 4 mCi I-123, and had the scan first thing Wednesday morning. I then received 200 mCi I-131 for the ablation, and stayed on the LID until last night, 72 hours after the dosage. Next Thursday I go in for my I-131 scan.

I didn't have any trouble with swollen or painful salivary glands, but my back hurt tremendously. I do have mets to my lungs, spine and ribs, and I like to think that the pain was from the I-131 treating the bone mets, although the nuclear medicine doctor thought it was more likely my lymph nodes.

My understanding from reading the Thyca book is that a treatment dosage of 100 to 150 mCi is standard.

fintia's picture
Posts: 31
Joined: Mar 2009

I am getting a higher dose.. 200.. and I hope this thing can get killed becasue the doctor told me that a human being can have a 500 dose, counting the treatments you've had altogether in a lifetime.. so far after this treatment it's going to be 300.. so I would onyl have like 2 more chances of getting RAI done? Maybe I misunderstood? Someone has heard this before? Like how many treatments your body can take?

My Papillar Carcinoma is on the Stage 3 were it moved outside the Thyroid to a fibroadipose tissue..

Posts: 10
Joined: Oct 2010

I need a buddy who has been through this. Can we be friends?

Posts: 186
Joined: Oct 2010

Hi. I wrote you on another comment. We are at the same stage of treatment - I might be a bit ahead of you. Write me anytime -

Cant wait to be well again!

Posts: 507
Joined: Apr 2010

i had my RAI on the 5th of May.

they let me off the LID 8 hours after my dose.. it all depends on the hospital i think

honestly i still feel like i am recovering from RAI ... or maybe my body's warenty just expired...

it is a day by day recovery but i tell you that first meal even though it was hospital food was great.

bigest thing i say is lots and lots of water/ice and tons of sour candies (multiple types) to get your salavary glands flushed out of risidual RAI... I still have drymouth all the time i didnt do a great job on useing the sour candies i guess.

and remember you are a survivor

Posts: 32
Joined: May 2010

I had my RAI (165 mc) on Monday. I was fine for about 8 hours then my glands swelled up and were very painful. I was sucking on sour candies even though my doctor said not to and drinking water like crazy. Tuesday was bad and Wednesday even worse - sore throat, extreme swelling in my neck and total exhaustion. It was hard to drink a lot on Wednesday because all I wanted to do was sleep and swallowing was difficult. I saw my oncologist today and the reading was still too high, 7 at 1 meter. I go back tomorrow afternoon for another reading and hopefully release from the restrictions. My doctor has me still following the LID. I've been off levo for 5 weeks and on the LID for that long, too. I have the post ablation scan on the 30th.

I have stayed very upbeat and positive until yesterday. I felt like I had hit a wall and just want to be done with this. It is not like me. I am the ultimate Pollyanna. I expect that being hypo has a lot to do with my discouragement.

How long does it take for you to feel normal once you are back on levo? I'm hoping not long.

Posts: 507
Joined: Apr 2010

well for me I was mostly recovered after a few days being back on the thyroid meds... exausted but mostly back

to be honest I cant say for sure if you will ever get back to feeling normal... I still feel off and wondering about every new ake and pain

i still have a metalic taste in my mouth as well as sever dry mouth and one of my salavary glands bugs me alot.

remember you dont recover instantly and everyone i have talked to says it takes a diffrent amout of time for everyone..

Posts: 32
Joined: May 2010

Thank you for your input.

I was "released" from the post RAI restrictions yesterday and I'm back on my levo. My doctor said I should feel the results of being back on my thyroid meds pretty quickly. I have my post treatment scan on Thursday. I also have the metalic taste, but am so happy to be able to eat a normal diet that I am ingoring it and enjoying food again.

I know what you mean about feeling normal. I was fine after my initial diagnosis and TT. For over three years I really never thought about cancer or being a survivor. But after three more tumors and two more surgeries I feel much more vulnerable. It really is a big help hearing from others and sharing our thoughts and experiences.

Take care and thanks again.

Posts: 507
Joined: Apr 2010

think of the positives not negitives

you have a metalic taste in your mouth.. (so do i) but guess what.. I have not wanted to ADD salt to ANYTHING cause of that taste.. so its helping me keep my salt level lower

and the scar from the thyroid removal is a definat conversation starter if you want to show it off.

try to look at things in a positive light and everything will be ok

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