Well I'm officially off my thyroid meds and on a low iodine diet in prep for my RAI. My Endo says she wants my TSH up around 30 and that it's going to make me feel really bad!!! That's great since she just got my meds up to where I feel like I'm 20 again (I'm 52)!
So those of you who have been through this what can I expect? She says I can do the isolation thing at home. I'm confused by this. Won't I contaminate my home? Do I need to do a decontamination of my home afterwards? Can I use my computer? She said basically to stay away from the kitchen, my dog and my daughter.
And what's up with this "low iodine" diet? NO CHOCOLATE, NO CHINESE, how am I going to live?
oh youll live just not that great without all the foods your used to
i tweak alot of things to my taste
get no iodine salt and alot of natural seasoning cumin cylantro curry its alot of reading labels so start now ate alot of chicken with basmi rice its the best i guess and the vinegar raspberry dressing not bad good luck i just did this 3 months ago now on my way with all the med adjusting all going well
Last edited by moderator2; 09-05-2008 at 04:33 PM.
Reason: posted disallowed website(s)
How old is your daughter? If she is young, I would try to get her or you out of the house, especially in the first 3 days.
I stayed at my parent's house for a week, you shouldn't sleep in the same room as a spouse for the first week, and depending upon your dose, in the same bed the second week.
You are like an x-ray machine that is on. However, a cleanser, or soap and water wipe away any radioactivity residue. So, throwing your sheets in the washer when you are done, wiping down the fridge handles, and whatever you touch, washes away any radioactive residue.
The radioactivity will leave your body in sweat and urine. I met with a radiation safety officer before so I understood what I could and couldn't do.
In terms of the diet, you can eat some of the sorbets (avoid anything with red lake #40 coloring), and you can probably have dark, non milk chocolates (non dairy) if you check the ingredients.
Don't eat out, and buy the non iodized salt, and you will find yourself eating lots of fruits and vegies---it's pretty healthy.
It's great that you found a med. level that works for you---so as soon as this is over, you will be done! Good luck!
Thanks for the reply Reece. My daughter is 21 so no problem there. My Endo is guessing that my dose will be around 100 mci, since I had a TT. The cancer was small (1 cm) and contained within the thyroid (1mm border).
I was really more joking about the chocolate and Chinese food! I'll survive!
How long does it take after you stop the med before you notice a big difference?
Hey Fishfork SO GLAD I'm on the other side of RAI now and can offer some insight. I had RAI 4 weeks ago. There's a thread called "RAI questions" that I started as I was prepping for my RAI. There's qute a bit of conversation between me & my buddy Desert Rose (we had RAI within 3 days of eachother), but there's also some good info & support within that thread. I'll post a quick reply to the thread so it bumps it up on the board (easier for you to find).
You mentioned your doctor warned you that you're going to feel bad. Well, that is what I would advise you about. Not to be a downer, but just to let you know that you ARE going to feel pretty bad.............but.............then you will feel better And there are lots of helpful folks on this wonderful board to offer you support. Going completely hypo, I felt an incredible fatigue, unlike any fatigue I've ever felt in my life. You just have to............get through it. It helped me to just remind myself that this was all necessary prep in order to have the best outcome of the RAI treatment.
Everybody is different, but for me I had LOTS of nausea with the RAI, metallic taste for a good month (just got my sense of taste back a few days ago), and until the synthetic hormones kicked in, I just felt like I had my butt kicked...............hard BUT - I am here to tell you you will get through it! There's light on the other side!
I chose to isolate at the hospital, but that was mainly due to complications from my TT which included bi-lateral vocal cord paralysis which gave me pretty bad stridor (lucky to not have had a tracheostomy). I wanted to be in the hospital in case I had swelling in my throat since I already had a restricted airway going into the RAI. If I have to have another RAI, I would choose to isolate at home. Just my 2 cents.
Best of luck! Feel free to ask any questions. This board has truly been a God send for me. There are lots of great, caring & knowledgeable people here!
Almost forgot - I have 3 dogs & 2 cats. My "baby" is my 10 pound toy rat terrier who is a rescue. I made sure to stay away from her, and slept away from her that first week. My concern was that even if my radioactivity was "safe" for a human, that her 10 pound body probably couldn't handle it. Just FYI
AND.......the other thread "Very Hypo in Prep for RAI" was another one I started that may be helpful...........best!!
Last edited by TC08; 09-05-2008 at 10:51 PM.
Reason: Added info
Thanks all, I'm now day three without meds and already starting to feel bad!
I'm still confused about the home isolation. For those who did RAI at home, did you stay in one room or roam the house? I'm thinking about just staying in my bedroom, then washing up afterwards, but that would be a pain! Can I go to the fridge if I want something? How will I know my radiation level - do they lend you a Geiger counter? I'm beginning to think that doing this in the hospital would be better, although I'm not sure if my insurance would pay for that.
Since your daughter is an adult, you don't have to get yourself too crazy, but I would suggest keeping the pets away from you as much as possible.
I was with adults, and I would pretty much spend most of the time in one room, try to walk around the first 3 days when nobody is around. If someone is around, try to stay 6 ft. away, and wipe down the handles after you use them. I didn't, in those first 3 days, sit together with anyone for extended periods.
The hospital will give you instructions. They will likely not give you a geiger counter, but much of this radioactivity depends upon your dosage. Drink a lot so that you will know the radiation will be leaving your body.
You are probably getting hypo, and sitting around in a room all day watching dvd's and tv will probably suit you just fine for those first 3 days.
Hey Fishfork! As TC said, we were RAI buddies not too long ago. I did the home isolation thing, even with 200 mci dose, so here's a summary of what it was like for me. I DID leave home because I have a 2 yr old daughter. I stayed with my dad, sis and bro-in-law. For the first two days, be VERY strict about staying 7+ feet away from people. Wipe down surfaces you touch that others might touch, like refridgerator. Also in the first two days, I was told to wash my bed linens and clothes every day (be sure you do your own laundry) and flush twice when using the bathroom. Be sure to suck on lemon drops to help get the radiation out of your salivary glands. You should also not sleep next to your partner for at least a week. After the first two days, you can start to be around people for small periods of time and a good distance away. Hubby and I watched a movie on seperate couches on our anniversary
A couple pointers: look for low-iodine recipes, there are a LOT of options out there! I personally liked Kosher salt better than the no-iodine kind. If you're craving chocolate ice cream, try Haagen Daas' chocolate sorbet. And MAKE SURE you don't take a multi-vitamin with iodine in it!!!
I checked my vitamins and they all contain something I should probably avoid mostly soy! This low iodine diet is hard for me. I'm not the world's greatest cook and my gf can't be here 7 days a week! I'm used to eating out most of the time! From the sound of things I should just go get some meat and veggies and cook them without any spices! YUK
It's also hard trying to figure out when to "officially" start the low iodine diet! I was assuming it would take me 3 weeks to get really hypo with the last 2 weeks on the diet. But I'm hearing you all talking about 4-5 weeks. I guess I'll be able to judge better when I get my first blood work on Monday.
Last edited by love2fishfork; 09-09-2008 at 06:45 AM.
Spices, herbs are fine----oils are fine! Even salt without iodine (even mortons has it) is fine. Egg white omelets are good if you can't cook. Throw a potato in the microwave and bake it and eat it without the skin---buy a bag of salad, and you should be fine. I lived on chicken cutlets, which are so easy to throw in the oven or pan.
I was on the diet for 2 weeks prior to my RAI appt., and I had to stay on it two days after the actual RAI treatment, so it probably ended up more like three weeks.
The diet isn't as much for blood levels (although it will get you there quick) as uptake, you want the thyroid tissue to grab up the radioactive stuff so it will be destroyed, not your breakfast....
It's hard to remember now, but I think I was REALLY strict on the LID diet for nearly 3 weeks before RAI, which was 5 weeks after my TT. My TSH was a whopping 164 at 4 weeks post TT, but I was taking vitamins with iodine in it. Blah, soooo maddening to have to wait. Anyway, we know how difficult the diet it, but it's a super healthy one and there are things you can do to make it better. I made my own bread (thank goodness for bread makers), ate LOTS of fresh fruit, and ate chicken a LOT (curry chicken's a great way to go). I even made my own corn tortilla chips, salsa and quacamole! You can make LOTS of the foods you eat at restaurants as long as you don't use iodized salt or dairy. Don't be afraid to use spices, they're a lifesavor!
About being away from the kitchen, did the Dr. say just during your RAI? Because yes, you shouldn't be preparing food for anyone else or contaminate surfaces shared by others, especially in the first two days. I would wander into the kitchen to make breakfast or lunch when everyone was away at work. If you need recipes or food ideas, just let us know
I'm having difficulty trying to figure out if I should discontinue my vitamins. Obviously my fish oil needs to go, but my other vitamins contain soy or soy lecithin which I hear is ok. I take CoQ10, Saw Palmetto, D, C, and Calcium.
The diet thing is hard for me. I went to the grocery store and read every label in the store. Everything contains salt, and it doesn't specify if it's iodized or not. Salad is easy, but what about the dressing? I know I should stay away from buttermilk ranch, but what about the others? Is balsamic vinaigrette ok? And what about sandwiches? Bread has salt, and lunch meet is probably not good!
One last thing, I had a CT scan with contrast back on June 20th. I wonder if the iodine in the contrast will be a problem? I would assume that is gone by now.
The problem with store products is that you don't know if they have iodized salt or not, so you really have to prep things yourself to know for sure. I did find things though.
You can also try health food stores, but I warn you, there's a lot of products there with soy. I did find some non dairy biscottis without eggs that I lived on!
Also, check out low sodium products. There are lots of people with weird allergies out there, and sometimes their products work for us.
A lot of good fruits are still in season, you can put them in a blender with ice and sweetener or sugar for a snack too.
I bought matza crackers, and matza,(try the Jewish/kosher aisle, they have a lot of non dairy stuff too) and used that in place of breads. I made oil and vinigar and lemon with spices for my dressing, and ate lots of salads.
You can also grill and turn on the barbeque, make some veggies and meat that way if you hate cooking (it's still warm enough!)
Call and tell the nuclear med people about the contrast, so they can determine if it's okay, it likely is, but they should be aware.
I don't know about vitamins, I didn't take any, and I was eating so healthy I doubt I needed any.
One very important thing I didn't know, you can have soy lecithin and things with soybean oil (I wished i had known).
I promise, in a couple of months, this will be a very distant memory, you just have to get through each day as it comes.
Yeah, the shopping was hard for me, too. Try to find some recipes for a low-iodine diet (they are out there) and do as much cooking as you can. I made my own bread with kosher salt, used balsamic vinegar and olive oil as dressing for salad, and ate as many fresh fruits and veggies as I could handle. I don't remember the exact recipe (and I'm not at home), but I fell in love with a homemade poppyseed dressing. It was something like 1/2 c vinegar (a clear one, like rice wine), 1/2 c oil, 1/2 c sugar, 2 TBS dry mustard (recipe calls for prepared mustard but I wanted to be extra safe), 1 TBS poppyseeds, 1 TBS minced onions. I found everything easily in the spice/cooking isle and my whole family just LOVES this dressing now. Best of luck to you!!!