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Old 10-13-2011, 09:54 AM   #1666
mrsklamc
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The detailed low iodine diet can be found at thyca.org.... I find it odd that she only mentioned seafood, but I am no doctor...
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Old 10-13-2011, 10:24 AM   #1667
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The detailed low iodine diet can be found at thyca.org.... I find it odd that she only mentioned seafood, but I am no doctor...
I agree! Maybe the radiation department will contact me with specific details.
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Old 10-13-2011, 10:51 AM   #1668
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Originally Posted by kimmie View Post
I agree! Maybe the radiation department will contact me with specific details.
kimmie - glad you liked your endo. Hope your ENT visit goes well today.

I would seriously question the diet instructions you were given. If you want to give the RAI the best chance of being effective, then you definetly need to do the LID diet for 2 weeks.

My advice - pig out on everything you love right now before you start the diet. That way it wont be so hard when you have to do it etc. If there are any remaining summer type fruits and vegs. you like that are fresh, you might want to pick some up now and freeze them, since they are a big part of the diet etc.

Also I guess you could ask the radiation are you getting a pill or liquid RAI. My radiation oncologist believes in giving an anti emetic pill before swallowing the rai pill because she said once someone actually threw up the rai pill.

I stayed in the hospital overnight when I got the RAI. That was my choice. My rad. onc. says most people dont do that. But I had the highest dose , 200, and plus I was dealing with a draining stomach wound from another surgery after the TT.

Actually I am glad I stayed overnight. My dh deals with radiation at work and he says its the best place to be etc.

Guess it also depends if you have young kids, pets, family etc. Take that into consideration, if you live very far from the radiation place etc.

During the diet its over the 2 weeks that most people average losing 10 lbs. First time I did the diet I lost 20 and the 2nd time I lost 10.

My rad. onc. has her own diet I had to follow, its a combination of the lid, nih and her own not to have stuff etc.

Sorry you have to go hypo and not get the thyrogen. Guess I am blessed. My rad. onc. is the 6th largest user in the US she said.

You will get through all this, one step at a time and we are all here to help you too. Hang in there. Wishing you all the best.
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Old 10-13-2011, 11:11 AM   #1669
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Thank You luvmarypoppins!

I am sure I will get a call from the radiation dept about the appointment and I would guess the 2 week diet. I did go to the thyca.org site and looked at the diet. I am bummed about some of the foods to eliminate, but oh well. I want the best recovery I can have, so I need to be really good. lol
My endo said it would be up to radiology as to whether they would keep me overnight or not, she said it depends on the amount given etc. We do not have small kids at home but we do have a small dog! I think maybe staying overnight would maybe be best. I have 2 girls and a husband to worry about exposing.

I am going to go look again at the foods I could have and its a good idea to pick some up and freeze them!

What are some of your favorite things that you all just loved eating while on the lid diet?
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Old 10-13-2011, 11:42 AM   #1670
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I was very different each time I did the diet. The first time I had lots of 'lunch in foil' (in the LID cookbook)...DH made me spaghetti....homemade salsa and salt free organic chips from Trader Joes. Also, we bought an ice cream freezer and DH made me strawberry sorbet and no bake cookies. LMP's dietitian allowed raspberry sorbet by Haggen Das (sp?) though. Oh and after the last dose of radiation I was so sick and my friend made me chicken noodle soup from scratch from a chicken she bought at whole foods. Meant so much, it was the only thing I could eat after the 200 dose of RAI. (I'm sure yours will be lower, mine had spread to lymph nodes)

This last time we made cinnamon pull apart rolls from the LID cookbook and many days I ate those with some salt free PB and jelly. I also had celery with the salt free PB and craisins...for some reason the last week that really got me through. DH grilled burgers on the grill for me, too, I would eat them with salt free ketchup made my heinz- I stirred iodine free salt into the ketchup because with no salt it tasted terrible.
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Old 10-13-2011, 11:46 AM   #1671
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Quote:
Originally Posted by mrsklamc View Post
I was very different each time I did the diet. The first time I had lots of 'lunch in foil' (in the LID cookbook)...DH made me spaghetti....homemade salsa and salt free organic chips from Trader Joes. Also, we bought an ice cream freezer and DH made me strawberry sorbet and no bake cookies. LMP's dietitian allowed raspberry sorbet by Haggen Das (sp?) though. Oh and after the last dose of radiation I was so sick and my friend made me chicken noodle soup from scratch from a chicken she bought at whole foods. Meant so much, it was the only thing I could eat after the 200 dose of RAI. (I'm sure yours will be lower, mine had spread to lymph nodes)

This last time we made cinnamon pull apart rolls from the LID cookbook and many days I ate those with some salt free PB and jelly. I also had celery with the salt free PB and craisins...for some reason the last week that really got me through. DH grilled burgers on the grill for me, too, I would eat them with salt free ketchup made my heinz- I stirred iodine free salt into the ketchup because with no salt it tasted terrible.
Thank You for the ideas!
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Old 10-13-2011, 01:08 PM   #1672
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Here was my diet stuff

I pigged out on everything I coudnt have before the diet, especially dairy.

Breakfast: I hate oatmeal but I did make a batch in the crockpot from a recipe that was on the budget board here. Only used the steel cut oats as they cook better they say. I think I used Silver Palate. Only thing that helped me was putting pure maple syrup on it and pecans. I also cooked it with the apples and cinnamon. Just heated it up when I wanted some more.

I usually just ate a banana.

Lunch - Usually salad with a grilled chicken breast or I alternated that with what Micayla said about the lunch in foil, or I made some stew and used that too. Also did a lid type soup. At the end I was so sick of salad the last few days I think I just had peanut butter and vegetables. You need to mix it up and put it in the refrig, since its natural the oil will seperate etc.

Dinner - Here is where I mixed it up. I always went with color on the plate and not the same stuff etc, so

Meats: Chicken,beef or pork, only fresh

Starches - Basmati rice, I just made a bowl to use during the week
Fresh sweet potatoes, red potatoes, just pulled off the skins after cooking.
No Yolk Egg noodles

Birdseye Steamfresh NON SAUCED vegetables are fine. Alot of store brands use salt, so they are a no go. You must read all labels before purchasing.

Snacks - all nuts, walnut,pecans, and almonds, you can pop popcorn in the microwave in a brown bag. I think es gave me that one from posting here and I bought mini packs of raisins, craisins etc, just to feel like I was special.
Unsalted matzoh, I live in NY, very easy to get here.

By the end of the second week I was tired of cooking 2 seperate meals for my family. I would have my dh and the 3ds eat by themselves in the kitchen. I would usually eat myself before. I didnt want to feel like I was missing out on stuff.

I also bought gingerale in those little bottles, like a "treat" for me and then the sorbet. I think edys brand has raspberry and hagen das has mango and peach? l also I got martinellis PURE apple juice, expensive.

I didnt cook but if I did some stuff on the lid I would like the homemade aplesauce and banana bread. I know the lid says cocoa powder but I was not allowed to have that, see my drs. own rules etc. Chrstine donated her wacky cake recipe to the lid cookbook so if you can make it thank her!

I made a stew with onions, vegs. etc. That was l lbs. of stew meat, so you have to divide the meat for 4 meals, only 4 ounces each. Some diets will let you have 6 ounces.

I also had to only have distilled water too. sigh.

I made a chicken breast with orange marmalade on top, basmati rice and birdseye steamfresh sugar snap peas, close to chinese as I could get etc.

Mock spaghetti stuff - no yolk egg noodles, a hamburger pattie and onion,tomatoes and peppers. I know some diets say you can have pasta but mine said only very little so I just stuck with the no yolk.

If you are going hypo you might want to cook some stuff now. Ask Micayla, she went that route the lst time. I would makel soup and applesauce now etc. freeze it. My dh is not a cook and I didnt want to ask people from my church because I had them do meals twice for me, once after the tt and then when I had the bowel obstruction before the rai. So I got through it, ptl. You will too, Hang in there. I am sure it seems pretty overwhelming, but its really doable.

As Micayla said, Trader Joes might have stuff, you have to read the labels.
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Old 10-13-2011, 01:16 PM   #1673
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kimmie,

Even if your rad department doesn't recommend the diet, you should probably do it. Most endos/radiologists are on board with it these days and it just makes sense, can't hurt you, and can only help.

It's a real drag though....
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Old 10-13-2011, 02:02 PM   #1674
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I always feel like I am whining when I post because I am no where near where the most of you are.

I started my new levels but I am still having a hard time with the exhaustion and sleeping. Enough so that I have been benched from driving, showering, and exercising alone. I never know when I am going to fall asleep and it comes on so quickly. DH has put a harness on the couch now so when I fall asleep the laptop does not fall to the ground. I am grateful for that as I would be lost without it. It has been just about a week or so on the new dose. I have had a few days with hours of "good" time, and have pushed myself to make dinners each night, have pushed the laundry through and am back to making lunches for my boys. Now this would seem normal for most, but it was a long hard road just to get to this point.

Last night while heating up dinner, I made some pumpkin bread for the family to share. Funny how something so simple made me feel useful. I am still quite worried as to how far along I will be for our trip in December. I can only hope for the best.

I keep you all in my prayers and I am keeping Kimmie's recovery close and near that it gets better each day.
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Old 10-14-2011, 07:54 AM   #1675
kimmie
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Quote:
Originally Posted by luvmarypoppins View Post
Here was my diet stuff

I pigged out on everything I coudnt have before the diet, especially dairy.

Breakfast: I hate oatmeal but I did make a batch in the crockpot from a recipe that was on the budget board here. Only used the steel cut oats as they cook better they say. I think I used Silver Palate. Only thing that helped me was putting pure maple syrup on it and pecans. I also cooked it with the apples and cinnamon. Just heated it up when I wanted some more.

I usually just ate a banana.

Lunch - Usually salad with a grilled chicken breast or I alternated that with what Micayla said about the lunch in foil, or I made some stew and used that too. Also did a lid type soup. At the end I was so sick of salad the last few days I think I just had peanut butter and vegetables. You need to mix it up and put it in the refrig, since its natural the oil will seperate etc.

Dinner - Here is where I mixed it up. I always went with color on the plate and not the same stuff etc, so

Meats: Chicken,beef or pork, only fresh

Starches - Basmati rice, I just made a bowl to use during the week
Fresh sweet potatoes, red potatoes, just pulled off the skins after cooking.
No Yolk Egg noodles

Birdseye Steamfresh NON SAUCED vegetables are fine. Alot of store brands use salt, so they are a no go. You must read all labels before purchasing.

Snacks - all nuts, walnut,pecans, and almonds, you can pop popcorn in the microwave in a brown bag. I think es gave me that one from posting here and I bought mini packs of raisins, craisins etc, just to feel like I was special.
Unsalted matzoh, I live in NY, very easy to get here.

By the end of the second week I was tired of cooking 2 seperate meals for my family. I would have my dh and the 3ds eat by themselves in the kitchen. I would usually eat myself before. I didnt want to feel like I was missing out on stuff.

I also bought gingerale in those little bottles, like a "treat" for me and then the sorbet. I think edys brand has raspberry and hagen das has mango and peach? l also I got martinellis PURE apple juice, expensive.

I didnt cook but if I did some stuff on the lid I would like the homemade aplesauce and banana bread. I know the lid says cocoa powder but I was not allowed to have that, see my drs. own rules etc. Chrstine donated her wacky cake recipe to the lid cookbook so if you can make it thank her!

I made a stew with onions, vegs. etc. That was l lbs. of stew meat, so you have to divide the meat for 4 meals, only 4 ounces each. Some diets will let you have 6 ounces.

I also had to only have distilled water too. sigh.

I made a chicken breast with orange marmalade on top, basmati rice and birdseye steamfresh sugar snap peas, close to chinese as I could get etc.

Mock spaghetti stuff - no yolk egg noodles, a hamburger pattie and onion,tomatoes and peppers. I know some diets say you can have pasta but mine said only very little so I just stuck with the no yolk.

If you are going hypo you might want to cook some stuff now. Ask Micayla, she went that route the lst time. I would makel soup and applesauce now etc. freeze it. My dh is not a cook and I didnt want to ask people from my church because I had them do meals twice for me, once after the tt and then when I had the bowel obstruction before the rai. So I got through it, ptl. You will too, Hang in there. I am sure it seems pretty overwhelming, but its really doable.

As Micayla said, Trader Joes might have stuff, you have to read the labels.
Thanks! I will keep reviewing this page for ideas. It does seem overwhelming right now.

christine you are right! I have an appt with radiology next week so I will get some answers. Like you said I will probably just do the diet anyway. I need to be sure any microscopic cancer left behind is zapped!
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Old 10-14-2011, 08:13 AM   #1676
mrsklamc
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Quote:
Originally Posted by Tinker'n'Fun View Post
I always feel like I am whining when I post because I am no where near where the most of you are.
Don't feel bad at all. It's miserable for your hormones to be off.
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Old 10-14-2011, 09:47 AM   #1677
luvmarypoppins
I am debating whether to put a new one back on his
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((Hug))
 
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Quote:
Originally Posted by Tinker'n'Fun View Post
I always feel like I am whining when I post because I am no where near where the most of you are.

I started my new levels but I am still having a hard time with the exhaustion and sleeping. Enough so that I have been benched from driving, showering, and exercising alone. I never know when I am going to fall asleep and it comes on so quickly. DH has put a harness on the couch now so when I fall asleep the laptop does not fall to the ground. I am grateful for that as I would be lost without it. It has been just about a week or so on the new dose. I have had a few days with hours of "good" time, and have pushed myself to make dinners each night, have pushed the laundry through and am back to making lunches for my boys. Now this would seem normal for most, but it was a long hard road just to get to this point.

Last night while heating up dinner, I made some pumpkin bread for the family to share. Funny how something so simple made me feel useful. I am still quite worried as to how far along I will be for our trip in December. I can only hope for the best.

I keep you all in my prayers and I am keeping Kimmie's recovery close and near that it gets better each day.

Sorry you are so tired, I am so tired myself and I feel like you, just pushing to do stuff. I asked my endo and she does not know why too and tues. I went to my gp and asked him to do a whole bunch of blood tests. I am having those in 3 weeks. It does take a while for the new dose to take effect, so hang in there. At least you have a great Disney trip to look forward too. We are going Nov. 29-Dec.4.

Hang in there. It will slowly get better.
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Old 10-14-2011, 10:00 AM   #1678
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Well I am done with the dr. and dentist this week.
Tues. as I posted, went to the gp, got a flu shot, b12 shot and asked him for scripts for the blood tests and mammogram. Covering all my bases.

Then I went to the dentist yest. Anyone have dental problems.? my teeth/mouth etc. def. got worse since the radiation. This time he fixed a tooth that chipped off a little just when I was eating a sand.

So in the last month I had the 6 needles in my eyes, 2 shots, 2 dental injections, and in 3 weeks I need another blood test to check the b12 level too and do the blood work oh and then...

Finally Nov. 7th I am getting that reclast infusion for the osteoporosis. I asked my endo and she told me no one ever got the severe bone pain. I read you can get it weeks later, well I better not because I will be in Disney. I am taking my stash of post op painkillers just in case.

I am so sick and tired of needles lately. sigh.
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Old 10-14-2011, 02:01 PM   #1679
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Hello! I'm new here. I've had Hashimoto's for the last six years and been on levoxyl all that time. I have swung from hyper to hypo and back so much so that I feel like a human yo-yo. I hate it!

Currently, I am on 112mg of levoxyl and feeling slightly hyper again (insomnia, fatigue, anxiety and um, well, diarrhea). My dr. is convinced that my levels as of this past Sept. are picture perfect:

TSH: 1.3 (range of .4 - 4.5)
Free T4: 1.3 (range of .8 - 1.8)
Free T3: 2.3 (range of 2.3 - 4.2)

This past May I was very hyper (TSH .1) and miserable so he lowered my dose from 137 to my current dose of 112.

I also learned a year ago that I have celiac disease as well which apparently is linked to autoimmune disorders (like Hashimoto's).

Any advice? I'm feeling pretty frustrated and weepy lately! This rollercoaster ride is one I'd like to get off of, lol! Thanks!
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Old 10-14-2011, 06:01 PM   #1680
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OK so the endo nurse calls to tell me my thyroglobulin is at 27 and it needs to be at 2. What?

Is this for the RAI!? She is calling me back once she talks to the doctor. I thought I would see the radiologist next week and then they would schedule the RAI for a few weeks after that, and then follow up with endo on December... I am a bit confused

Anyone?
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