Specific LID questions

[Jellyz]

Hi, it's been a while ol' friends...I had to take a break from the community because I found my anxiety getting worse reading posts everyday!   Good news is that I'm feeling great, but going to do RAI in 2 1/2 weeks.  Day 5 off hormone and still feeling well.

I hope you're all well too.

I have specific questions about the LID.    

1.   Every piece of literature I have online and from my doc says 'non-iodized salt' for cooking.    I have found a few brands Mortons, Diamond, that have a regular salt and then next to it a type that says "not a source of iodine/iodide"  ...but nothing that specifically says "non-iodized"  ..Is the "not a source of iodine"  type the one I'm looking for.

2.   I guess I'll be eating a lot of egg whites for breakfast!    Is there a limit to the amount (i.e.  do the egg whites count toward the 5 servings of meat/protein every day that you're allowed)?

THANKS!
Jellyz

[Jellyz]

My endo said my TSH has to get to 30 or above....she said that should take 3 weeks and I said 'how come all these people are off hormone for 6 weeks' and she told me doctors just take their patients off for too long ...'to be safe.'   Liz94, I am SO sorry you got that sick...that is not good.  

Just to clarify, I'm off hormone for 3 weeks and LID for 1 week prior and a few days after.     I asked why so short on LID and she said the studies at my hosptial (Brigham & women's in Boston) have shown that the body's stores of iodine are pretty much gone after a week.   They tested people's urine for iodine after a week I guess.  So let's hope .  

Thanks for all the food suggestions...I printed out the LID cookbook and I'm going to cook up some recipes to freeze this week.    

I'm assuming that since oils are fine,  oil & vinegar is fine on salads (as long as no iodine in the vinegar)...and I can saute chicken in olive oil for the salad?    Potatoes are OK w/o the skin too, correct?   I used to do weight watchers, so the equivalents for the 'one serving' of bread sound similar.  One slice of bread = one serving.  

Snack ideas?? applesauce, unsalted peanuts,   veggies, fruit ...any other good ones?

[Liz94]

I had the RAI for cancer. I was off my meds for 6 weeks and followed the LID for the last two.  I don't recommend being off meds for any longer than you have to. My TSH was well over 200 when I finally got the RAI and I was a sick, sick woman. My doc assured me that this was "good!" "We want the RAI to work the first time!!"  Well, if the feeling of impending death is good, then I was good. Every part of my body hurt. I could not lift my arms, get up without blacking out for a minute or two, headache so bad I couldn't move my eyeballs, walk without my butt muscles screaming at me, yeah.....it was all GOOD!  It was so good I spent 4 hours in the ER convinced I was having a heart attack because my chest hurt so bad.  But, the good part is that the RAI worked, I scanned clean and I'm cancer free. It was a very hard 6 weeks but worth saving my life.  
I did ask my doctor if people can die from having a TSH as high as mine got and he said yes. He said that a lot of people who aren't in the best of heath have to be hospitalized because it's very hard on the body. Well, HELLOOOOO????  
As for the diet, I did not know you couldn't have bananas! Thanks Utahmomma, I ate one everyday!  I bought a food scale and went to the organic food store and bought chicken and steak and came home and weighed out my 5/6 ounces and bagged it up and made it easier. Then I grilled it and cut it in half and had half for lunch and half for dinner so I wasn't so hungry. Also ate a lot of baked potatoes with homemade salsa. And I found a spaghetti sauce at the organic store made with no salt and ate a lot of that with elbow noodles. Yum!  

[utahmomma]

Welcome to the wonderful world of confusing docs!  :-(

I was "supposed" to go off the meds and on the LID for 5-6 weeks but the threshold for RAI was a TSH of 35.  Mine was 76 after three weeks so they went ahead and nuked me.   One week sounds very quick - check with the nuclear medicine department at your hospital and see what their threshold TSH level is.  It wouldn't hurt to have your TSH checked every week until you hit that threshold.

Wasn't really sure how much a "serving" of bread is since I'm not supposed to eat it (diabetic - but I *love* it) so I checked a couple of sites.  What they all pretty much said is a serving is one slice of regular bread and 2 slices of lite bread (huh?).  Also a 1/2 cup of rice is considered a serving.  Here's one of those sites:  http://www.lowfatweekly.com/how_much_is_in_a_serving_bread_group.htm

Juice and fruits are fine (if your not diabetic - sniffle) but my hospital said to avoid bananas.  I really loved blueberries on the diet but they were out of season and very expensive.

Salads - yum.  No cheese, no meat, no dressing.   I ended up squeezing lemon on my veggie salad.  Helped a bit.

As for being off the hormone;  very cold, very (VERY) tired, very depressed.  Watch for that - it can sneak up on you.  I ended up being put on antidepressants because of it and am still on them.  In fact, a few associates should consider themselves very, very lucky I am still on them - :-)

Follow what the nuclear medicine department suggests more than your endo ('cause if you don't follow the nuclear medicine's directions it may delay your treatment) - just make sure you do whatever it takes to nuke this silly cancer stuff!

Hugs

Utah
papillary carcinoma '03

[Jellyz]

Thanks for the ideas...and Yes,  i meant to say, 5 oz, not 5 servings (boy, that would be nice).  I'm allergic to tree fruit, so I think i'm going to have to load up on the veggies, salad, egg whites, grilled chicken, etc..although I guess berries and smoothies sound really good too.   Juice & fruit except those few on the list are fine, right?   And it says 4 servings of bread/grain w/o iodine...i'm baking a couple of loaves of bread.   So that means 4 slices of bread... but how much rice for example counts as a serving?   1/2 cup?   I got basmati rice to cook up.  

I only have to do the LID for one week,  I see others have to do it quite a bit longer.  How long did you do it for?  Liz 94, did you have RAI for cancer or other?   how did you both do off the hormone,etc?  I have MI follicular cancer...so i'll be getting low dose unless my pre-treatment bloodwork shows big changes in TG.    my doc has me off hormone for 3 weeks...i see others off for  6 weeks!  i trust her, but i gotta tell you, i saw 4 endocrinologists before meeting her and liking her...but EACH doctor had a different protocol for treatment (length of LID,  length of time off hormone,   etc.)  That makes me nervous that 5 different docs are all different...

[utahmomma]

Hey, *there* you are.

I understand about the anxiety caused by being on this forum too much.  I'm just glad you pop back in to update us.

What Liz said is right but limit any salt, you don't want to stress out your kidneys and most salt comes from ocean/mines/Great Salt Lake (yeah, no kidding) and there is iodine in all of those areas.  Not added iodine but, still, a bit.   Fresh or dried herbs (with no salt added) work really well too.

I bought some of those containers of "Egg Beaters" (or similar brands) that were all whites - it helped.  Enjoy lots of fresh fruit too but my hospital wouldn't let me eat bananas.  :-(

Take care of yourself, reduce the stress, and hang in there on the LID!

((HUGS))

Utah

[Liz94]

I just finished that diet and my RAI and yes, the salt that says "Not a source of iodine" is what you can eat.  As far as the egg whites go, I don't think they count towards your 5 ounces (not servings) of meat per day. Lean meat has a small amount of iodine in it which is why you are limited to 5 ounces per day. But I think the yolks of eggs are where the iodine is, not the whites so you'd be fine eating the whites.  I hated that diet more than anything in my life but it definitely does force you to get creative!  I found out I like sweet potatoes and I had no idea!  And I lived on smoothies for breakfast made with lots of frozen berries, bananas and OJ in the blender. And you could add the egg white!