I was told that OTC pain medications were fine - just read the label and make sure there is no red dyes in them (probably avoid the capsules and go with tablets). Welcome to RAI and the low iodine diet . . . it's a bumpy road.
Oh, you didn't ask but . . . watch for depression, it will sneak up on you!
Thanks for such a quick reply, I'm downin' the Motrin as we speak. I had to go online to ck the inactive ingredients and luckily for me, no red dye :)
I'm on day 2 off meds and the diet. Other than headaches and dry skin (which I thought was a quick onset) I'm doing okay. I have read soooooo many of your posts, I feel like I already know you. :) I can't tell you how comforting it is to read everyday, the success stories, the 'stay-strong' stories and always your positive, 'been there done that and beat it' attitude. I love it.
You'll do great but, as you've read, RAI is a rocky road - be prepared. I'm not sure where you live but the cold weather is NOT fun on the low-iodine diet. Take lots of warm baths and if you drink caffeine, up your dosage, it can help. One thing that helped me (especially with the deep muscle cramps) was Excedrin - it was okay with the low-iodine diet and has tons of caffeine but holding it in your hands won't warm you up nearly as fast as a cup of coffee or tea. :-)
Are you having RAI for cancer or another thyroid condition? When are you scheduled to be "nuked"?
I certainly appreciate every word of experience you share with me (us - the forum is awesome)...
I had a cancerous goiter removed in October. Unfortunately, they didn't know it was cancer, until 2 weeks after my surgery. When they removed the goiter/tumor, it was located smack in the middle of my thyroid, so they left both lobes and took the 'isthmus'. How lucky would I have been had it not been cancerous, huh? :)
Well, it was a Hurthle cell neoplasm, that was malignant. I had the TT Nov 16. They also found papillary cancer in one of my lobes. I've read a lot on hurthle cell, and I am very lucky it has not metastasized, mostly due to my age, I'm 37.
I will 'glow-in-the-dark' on Jan 10th. It's not been fun, you obviously know this, and because you DO know this and you DID make it through, with your chin up no less, I know it will be okay. I can't thank you enough for sharing your experience so openly.
Small world - welcome to the "I had 2 thyroid surgeries" club! :-)
Yeah, the Hurthle cells are a bit frightening but it was contained and it sounds like the papillary carcinoma was too. I'm so glad!! You'll have to let me know how big your radiation dose is when you get it. The technician thought I was crazy until I told him my sister and I were keep tabs for the next family newsletter (I was kidding but this *is* Utah so he probably took me seriously).
Can you imagine that: "over the past few years all five girls had thyroid surgeries, four had cancer, two were radiated -- but on to the important stuff . . . the new carpeting in the living room looks smashing and we had a great crop of tomatoes!"
That would so be my mother! :-)
Hang in there - you'll kick this stupid cancer's butt and being isolated for a few days is a great way to get some rest. (Are they going to hospitalize your or ship you home?)
You have age on your side too and your humor. Yup, "chin up" - that's what thyroid patients do best!
Welcome to the RAI and LID club.I am in final days waiting on insurance to give green light for The Pill and The Scan.Come here all you want and need.This forum has been great.I am so thankful for the support I have gotten here.
I will be hospitalized, mostly (I think) cuz I have three small children - 9, 7 and 4 yrs old. I'll let you know the dose, I can hardly wait (ha ha...funny again!). Really, I liked one of your posts when you called it the last battle of this terrible war - the one that makes me the winner.... I'm so ready to do this, and it has nothing to do with being off meds or this dumb diet, at least not yet!
Again, I can't thank you enough. I know what you mean - my kids, at least my 9 yr old and 7 yr old are scared for their momma...and we have talked to them, but it's a hard ticket to sell. I think they'll be better, when I'm better and we don't have to talk about the 'c' word anymore, God willing. :)
I wish you well with your upcoming treatment and so sorry to hear you had two surgeries so close together but so glad they properly found the cells and you will be having treatment and on the road to recovery and winning this battle!
My surgery is 1/9 for right lobe to be removed for atypical follicular cells in a 1.cm nodule. I have two nodes on the right lobe and the left lobe has a tiny 2mm node that will be untouched unless something shows up during surgery or final biopsy.
Ahhhh I have to admit that there are so many on this board that went into surgery with benign FNA's and ended up with final biopsies showing cancer (caught early) that I really will be surprised if mine is completely free and clear of the Big "C" cells ... I am ok with whatever the outcome will be and the posts about RAI really have given me a total understanding of the entire process from soup to nuts which is always a good thing to have going into surgery and being prepared for any news.
Yeah, kids tend to keep it all inside. Mine are doing ok .. in the beginning I stressed it isn't the Cancer that will kill you and that sunk in 1-2-3 and relieved some of their fears as one of their dear friend's mom is battling Stage IV breast cancer. I keep them informed on their level of understanding (mine are 16, 13, 9 & 8) with reassurance that being proactive is so important in life in every aspect.
You mentioned your children and this brings up something I should have though to post before (hang on, it's long):
My son is a tough guy who doesn't show his emotions much (he's 15) and my RAI scared him to death but I didn't know it.
He was in all the craziness a few years ago when all of his aunts, his only sister, and his mother all had our thyroids out. He was watching in the background as we all discussed our cancer. He didn't blink when I dragged his sister and him in for ultrasounds. He took everything in stride and was by my side through both surgeries.
However he became very moody and angry last month when I went off my meds and had RAI. It took a lot of coaxing to get him to admit he was scared to death that I might die from cancer. He said everything went so fast and was so crazy during all the surgeries it didn't have time to affect him and, because they removed all the cancer, he thought it wasn't an issue anymore. He told me he didn't think it could come back and kill me until the RAI.
I've raised him on my own practically his entire life. He was facing some issues that kids shouldn't have to think about (what if my only parent dies) and he was doing it all on his own. His grades dropped and he became very angry and moody - in short, depression.
I had been so consumed in work, *my* feelings about this, insurance issues, etc. that I only gave him the cursory overviews of the entire process. He didn't ask anything else and I didn't push and I SHOULD HAVE.
Long story short, please make sure you talk to your kids through this. It's amazingly difficult to have to explain cancer to a child but I learned the hard way that they are watching and *listening* a lot more than we know. The don't have this forum or the knowledge we do so they may be thinking the very worst.
Just had RAI on Wed. Today is Sat. Was just reading on this site about RAI prep....low Iodion diet and off meds. Was not told about this...quit my tapozole on the sat. before and am supposed to resume it on Mon. But...the night before my treatment..I had salmon...was only told not to eat or drink the day of the rai....I am now concerned that it may not work....this is my second go-round with rai....wish I had known about the low iodine diet before...makes sense!! Any thoughts??
I just turned 28 on Tuesday and was recently diagnosed with Graves disease. I have been on the stupid RAI diet for about 6 weeks (prep for the uptake scan, treatment along with medicine and then ultimately the RaI) and I'm totally over it! I had the RAI treatment on Thursday the 11th, and now I'm still waiting to eat! I'm curuious how long you were all told continue the diet after your treatments? I've read so many different things, my doctor told me 5 days after, and now I'm just frustrated!
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