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So is the low iodine diet worse than rai ?????????????

MarinMark
Posts: 139
Joined: Aug 2011

Saw this in another website..... there are so many complaints about the low iodine diet and how it "sucks". But it looks okay to me. Will see when it starts. Seems people think it is worse than rai.

So really, are most people having no symptoms from the rai ? I hate nausea. Haven't had nausea in 30 years.

amorriso
Posts: 186
Joined: Oct 2010

Think of it this way...by the end of your RAI you can eat anything you want! For me the diet was harder...oh how I missed my pizza and cheeseburgers...(yes I confess - I like burger king cheeseburgers) - its the first thing I had after my scans!

I remember getting a needle to help prevent nausea with my first RAI - dont think I got one for the second. But I wasnt nausated at all anyway.

Just heed to tips and advice you've been given on this forum - you'll do fine.

Andrea

teamwink
Posts: 97
Joined: May 2011

Yes, I found the diet worse - I eat very well, but restricting things was tough (dairy, etc). I couldn't simply refrain from going out to eat due to family/kids, so I had to go and eat nothing while watching everyone else eat, which did suck. The RAI didn't feel bad at all - I kept waiting for something to kick in but it didn't. It was odd how normal I felt during that time.

MarinMark
Posts: 139
Joined: Aug 2011

"Just heed to tips and advice you've been given on this forum - you'll do fine"

Which tips ?

nasher
Posts: 507
Joined: Apr 2010

have you found a coffee creamer yet?

its not what you can have that makes the LID hard its the but I like... and I want...

I didn't get nausea from RAI but I did get it from vertigo (happened later in life)

LID sucks more than RAI cause of a simple fact.

you take the RAI and are done with it... everything after comes after and you have no real control of the RAI... LID... you have at least 3 meals a day (and snacks) for at least 14 days and now and then you just want something on the no go list.

MarinMark
Posts: 139
Joined: Aug 2011

Nasher--- I purchased some canned coconut milk last night. Haven't tried it. Coffee-Mate The Original tastes great and the company and a few friends tell me it's iodine-free. Why is sodium caseinate not allowed on some LID lists ?

From the Mayo Clinic list:

" Liquid and powdered
nondairy creamers may be
used as milk or cream
substitutes if they do not
contain carrageenan."

nasher
Posts: 507
Joined: Apr 2010

Foods high in iodine are: fish, sea vegetables, cranberries, eggs and coconut oil.

humm looking up coconut milk... it looks like coconut milk is ok but not oil... not sure about it all.

MarinMark
Posts: 139
Joined: Aug 2011

"Foods high in iodine are: fish, sea vegetables, cranberries, eggs and coconut oil."

Whole eggs, yes. Not egg whites. Whites are listed as okay, right ?

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

if you buy those cartons of egg whites, be sure to read the ingredients - some have other stuff in them that are not LID compatible. or, you could always separate the whites from fresh eggs yourself.

MarinMark
Posts: 139
Joined: Aug 2011

"100% Liquid Egg Whites". No other ingredients.

wired1966
Posts: 3
Joined: Oct 2011

From this Food database, coconut milk has only 0.7 µg iodine per 100 grams
http://www.fineli.fi/food.php?foodid=29014&lang=en

KYGirl71
Posts: 25
Joined: Aug 2011

I had nausea with only 5mci of rai, I can only imagine what it will be like with the 50mci I will receive on the 18th. I hate, hate, hate, the LID, I can't eat anything and have lost 12 pounds in like a week and a half! Not that losing weight is bad, I'm just starving!!

KYGirl71
Posts: 25
Joined: Aug 2011

Why am I going to be on the LID for longer than 14 days? I have been on the LID for 16 days and must remain on the LID for another 12 days and could be longer pending blood work on the 14th. I am in high vent mode (trying not to cuss on here). I am just completely frustrated right now and moody as h***!!!

sunnyaz
Posts: 582
Joined: Oct 2010

I know this is frustrating because everything we eat normally has iodine. If you like salad you can try using lots of your favorite veggies and making a vinaigrette dressing with vegetable oil and Balsamic Vinegar. I found it very tasty and satisfying. Also, I loved frozen banana slices dipped in all natural peanut butter. I made fruit smoothies with frozen and fresh fruit such as pineapple and banana with a little bit of all natural fruit juice. Blueberries and banana's were very good too. Blend it with a little crushed iced. Banana's are also good frozen and blended to make banana ice cream. You can have pasta that doesn't have iodine, just check the label. I made it and put some no-salt butter with sauteed vegetables and some days I used all natural tomato sauce with sauteed garlic and onions. I even made meat balls and froze them to put in my pasta dishes. The all natural tomato sauce is available at Trader Joe's and the Whole foods stores. I actually found it in the health food section at my local Fry's (Kroger) store. Almonds and nuts without salt are a good snack too. I hope some of these idea's will help make this easier for you. You are almost there, keep your head up and look at the Sunny side!
Blessings,
Julie-SunnyAZ

MarinMark
Posts: 139
Joined: Aug 2011

Great suggestions. Forgot about bananas. Wow ! Nausea on 5 mci of RAI ? Must have been I123. I was told no one has side effects on 123. Maybe it was stress.

I love organic chicken breasts with wine vinegar, unsalted almond butter on matzo, and fried mushrooms and onions.

Do most people have nausea on I131 ? Or do most have no symptoms ?

iggymurphy
Posts: 34
Joined: Sep 2011

I am interested in this as well. I didn't take any pain medication after the TT because I knew it would make me nauseous. And of course threw up after the general anesthesia. The anesthesiologist came up to the hospital the next day to check on me (which is pretty rare) and said she has never seen anyone get so sick...they "gave me everything they were allowed to". I have 8 weeks before my RAI and want to be prepared.

Erin

ceanna
Posts: 11
Joined: Oct 2011

My endo had me on the full-blown LID for only 2-3 weeks before RAI, but cautioned me to begin to read all labels and cut salt before the diet officially started. That made it quite tolerable. Don't let yourself get hungry--snack on safe things--it seemed to limit carvings for those things not on list. There are plenty of good foods to eat but you do have to think before popping something in your mouth!!

RAI made me only slightly sick for about two days; I did not have any anti-nausea meds. You can't throw up within a day after RAI pill or you have to start all over again. I think it was more the idea that I was swallowing something radioactive than the actual pill. I did have a metallic taste in my mouth for weeks after, but sucking on sour candies helped a lot and it got better each day.

Remember, it's all short term. I kept telling myself I could do this in the short run because I wanted to live for the long run!!

MarinMark
Posts: 139
Joined: Aug 2011

What did you take for nausea ? Compazine ? How many days were you nauseated ?

Farzana25's picture
Farzana25
Posts: 24
Joined: Dec 2010

i had my total thyroid removed last year as i was diagnosed with papillary carcinoma. after one month i went through RAI. i was on low iodine diet for month at home. but at home i could not follow it..i was trying to avoid dairy and eggs.. seafood and salt... but once iwas in hospital they gave me totally salt less food.not a single bit. it was really hard on me.. i hardly ate anything for 3 days while i was in hospital... on top after the taking the RAI i was told to drink a lot of water.. too much water in an empty stomach really made me sick rather than the RAI itself

snoopy100
Posts: 9
Joined: Oct 2011

I would like any helpful information about LID . I think you can eat salt as long as it is not iodized. Can you have butter... since this is made from milk... I think not.
I am waiting for a drug called Thyrogen and then I will get RAI. I am afraid of nausea. Are there any other side effects. I would like to know before my treatment.

iggymurphy
Posts: 34
Joined: Sep 2011

No butter. That is the hardest part for me...I couldn't find any margine without salt or without soy. I was told nothing from a can either because they rinse cans in iodine.

the diet isn't too bad (says the girl on day 5). the first 2 days were hard but I found found a few things I really like: fajitas (with my extreemly expensive no salt injected chicken and homemade tortillas), calzones with homemade bread and sauce with lots of veggies, and peanut butter and jelly sandwiches(on homemade bread, unsalted peanut butter, and the one jelly I found that contains only fruit, sugar and pectin).

I work full time and have two very young kids so its tuff finding time to make everything from scratch, but I feel healthy.

My RAI is scheduled for next week so I don't know about the rest but good luck!

http://www.thyca.org/rai.htm

snoopy100
Posts: 9
Joined: Oct 2011

your information was very good especially about the cans.I did not know about washing cans with iodine. Are foods in glass jars O.K. ? Like apple sauce? I am on a wait list for Thyrogen shots and then I will have to go on LID. I am thinking that only homemade food is O.K. I bought jelly but it contains calcium chloride and citric acid along with what your jelly had. Does anyone know if this is O.K.Thank you again to all.

MarinMark
Posts: 139
Joined: Aug 2011

Had no side effects from any of these three. Fascinating experience.

sunnyaz
Posts: 582
Joined: Oct 2010

You made it through. So glad to hear you didn't have side effects.
Blessings,
Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

Remember that this is a Low Iodine Diet, not a No Iodine Diet. I used unsalted butter in minimal amounts. I used non-iodized salt. Read through some of the other posts to see what others have had to say about the LID. You will find some useful information. I posted some of my favorite recipes on some of those posts. If you can't find them let me know and I will re-post. Something to remember is that most foods contain iodine. The goal is to avoid those that are high in iodine. Seafood, Strawberries and rhubarb for instance are naturally high in iodine. Cheese is another food you will want to avoid. Most dairy products, because the equipment used to clean the machines that process the foods are cleaned with iodine. Check out the thyca.org cookbook but remember that not all iodized foods are listed. They don't list strawberries for instance and they are high in iodine. Do some on line research before putting anything in your mouth or your recipes. Also a good idea to make batches of food and freeze them so you will have them when you are on the RAI and in isolation. Makes life easier.

I also had Thyrogen injections before my treatments and I am very glad I did. Going hypo is very hard. No need to worry about nausea. The more you worry the worse it will be. MarinMark can attest that I am right about this. He worried a lot about it and it turned out he had no side effects from Thyrogen or RAI. He actually enjoyed the LID and lost some weight. The key to not getting nauseated is not to drink too much water after your dose. That alone will make you sick. It's best to keep sipping at a slow but steady pace. Input and output, just like a computer:) Don't overload your stomach with too much at once. The nausea thing is mostly mental. If you think you will get sick; you will but if you think you won't; you won't. There is nothing in the RAI that would make you nauseated.

The only slight side effect I had from the Thyrogen is a little headache after the first dose. I took Ibuprofen a half an hour before each of the remaining injections (six thyrogen injections in total) and I never developed the headache again. I went back to work after all of them and felt fine.

Good luck and don't hesitate to post if you have any other questions.

Blessings,
Julie-SunnyAZ

snoopy100
Posts: 9
Joined: Oct 2011

After reading your advice I feel much better about this procedure.
GOD BLESS YOU.
Barbara-snoopy100.

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