Day one of Low Iodine Diet and no milk in my coffee!

By Soupie
Today at 6:49 am
OK, so yesterday I went out and bought all kinds of low iodine/no iodine food to eat so I am not tempted. I went out to dinner with my husband to one of our favorite restaurants and had a "good last meal" for the next 3 weeks. It was delicious, especially the onion soup with a wedge of bread and swiss cheese. This morning, I had my coffee black, with just Equal and now I am drinking Earl Grey tea, black of course. I am planning on taking this one day at a time, and I have a calendar that I am physically marking off the days until RAI and milk in my coffee again. I am so very lucky to have all of you out there to support me through this, because though I have 2 close friends who have had thyroid cancer, neither went through RAI! Happy Monday!

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I am a huge coffee drinker and love cream in my coffee. I made the almond milk recipe on this site and it is actually really good in my coffee:)! I don't feel so deprived!

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hi i HAD MY ENTIRE THYROID REMOVED FOR CANCER LAST YEAR. I HAD THE I-131 RADIOACTIVE IODINE TREATMENT ;AST MARCH. PAST NOVEMBER HAD SURGERY TO REMOVE ONE OF MY JUGULAR VEIN AND SOME LYMPH NODES. TODAY STARTED THE I-131 TREATMENT AGAIN. MY MAIN CONCERN IS LOSING MY TASTE AS I DID LAST TIME. THAT REALLY STINKS! I HOPE AND PRAY IF I LOSE TASTE AGAIN THAT IT COMES BACK. THE 2 WEEK DIET ALSO STINKS

BABS

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So, I made it through day one and I made the chicken Pasta dish from the Low Iodine Cookbook for dinner. Not bad at all, actually, I liked it, but my husband said it was way to bland for him. He loves spicey food, so of course it would be to bland for him. Oh well, he supports me in most other things. Black coffee again this morning, a bit easier on the palate. I received a letter from my doctor regarding the RAI itself and how I would need an escort out of the building after the treatment, how I have to avoid all this stuff. It was like something out of science fiction. This is an interesting process to say the least.

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Too funny, I forgot to mention, we are being inundated with snow here in the northeast. One storm today promises more than 6-10 inches and another storm tomorrow is suppose to give us 12 - 18 additional inches. This on top of the solid 3 feet that are already on the ground since Dec. 27th with no melting. Anyway, the headline in the paper this morning was "NO SALT DIET!" I was hysterical laughing!

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I just went through my RAI treament 2 weekends ago and body scan this week. The diet is not so bad, I lost 15 pounds. Pretty good start for the new year. Oh by the way, non dairy creamer is allowed.

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Thanks HB4eva, do you mean like creamora? I will go and get some right away if that is the case.

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HB4eva, I just checked out the Thyca website and the Low Iodine Diet guidelines and it says non dairy powdered creamers are NOT allowed. Did you find one that is made without iodine? Do tell! I will forever be in your debt!

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I actually got the instructions from the dietician and the endocrinologist's office and it state that non dairy creamer was allowed. It does not have iodine in it and it is non-dairy. You might want to check with yours. I called directly because some sites say you can and some say you cannot. I used 1 tablespoon every morning of cremora. It did not affect my test. They also say it is a "low iodine diet" not a no iodine diet. Hope that helps. I like my coffee too!!!

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Hi
This my first comment on this site but really related to your message ,it is my first day on the NID diet aswell i have just returned from the supermaket exhausted from walking up and down the isles trying to find the right products . I am a vegaterian also so taking dairy out of my diet is going to be a real challenge but i ive got the shopping so i say bring it on, Its another step towards recovery.
Good luck with it

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I can't agree more, Hairdresser1. It is another step toward recovery. Also, HB4eva, I checked out lots of non-dairy powdery thingys, and I found that coffee mate has no dairy, or any salt at all. Thanks for the tip. I am once again able to enjoy my morning coffee. Even my husband used it this morning when he forgot to pick up milk yesterday. He wasn't thrilled with it, but it was tremendously better than black. Thanks so much for the tip.

Also, I have been baking and cooking up a storm lately. I made the honey white bread from the LID cookbook and also the cinnamon bread from the same cookbook. They are delicious. I also made some wheat bread and have brownies just out of the oven. Not quite Ghiradellis, but they are not bad.

I am almost through week one, and so far, so good. Actually, I have lost about 4 lbs, I will know when I see my primary care doctor on Monday, for a non thyroid related issue. The Coffee Mate in my coffee has made a huge psychological difference and making the LID breads and other treats, makes all of this seem less intimidating.

I get the first Thyrogen shot on Valentine's Day. Not that far off!

We will all get through this, especially with the support of each other.

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I'm not positive it's LID safe but I think it might be - look for the brand So Delicious Coconut Milk Creamer - it's a great alternative for coffee!

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Be careful with non-dairy creamers. The only safe one I know of is "Rich's" brand. Find a little carton of it frozen in the freezer section. Most non-dairy creamers (the powders or liquids) that I know of are not considered safe for LID. Melting a marshmallow in the coffee is another good trick...read the ingredients on the marshmallows first...Kraft Jet Puffed are safe. The almond milk works too if home made - but it's kind of thin.
You can use the marshmallows and Fleischman's salt free dairy free margarine to make crisp rice treats - just buy plain crisped rice at the healthfood store or aisle of your supermarket - ingredients: rice. Enjoy!

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I guess there are lots of alternatives out there. I don't like coconut, but that could work for others. I will look for the Rich's brand at the supermarket to day. As for Rice Crispy treats, what a find. I am leery to make them because I might just eat them all. I am being very careful, except for the non-diary creamer, I guess, and think I have lost about 5 lbs so far. I will know today when I see my primary for a mole removal. It never ends!

I really appreciate all the support from this site. Thanks all

One quick additional question. Did anyone else get really tired on the LID? Once again this weekend, I could barely function and did not accomplish anything I set out to do?

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I almost think I should start a new topic, since I am now on Day 10 and I will have my RAI on the 16th a week from today. I do have a question. When do I get to stop the LID? For those of you who have been this route, I would like to know. I had a Dr. appt. this week to have the second session of a mole removal, pre-cancerous, and I was happy because I was going to get weighed. OK, I know for women especially, this isn't a normal response and not usually for me either. But anyway, I figured with the LID I haven't been eating any junk and have watched all that I eat very carefully. The last year has been tough beyond the thyroid cancer. I was first diagnosed with a severely deteriorated disk between the 6th and 7th vert in my neck and I was pretty much not able to do much from March on and I put on 30 lbs. I wish I could blame the thyroid, but alas, despite 7 nodules, 3 malignant, my thyroid itself worked fine. Go figure. Anyway, I went to the Dr. this week and lo and behold, I gained 3.5 lbs. I was so angry, my blood pressure went up and the Dr. made a comment about that. He was great about the weight, normally he is a stickler about weight, and said, to just wait until this is over and then we will focus on the weight. I am seeing a nutritionist today and will be having the conversation. I should say that I had gastric bypass almost 8 years ago and lost 150 lbs, so a 30 lbs gain is a lot. Anyway, I am off to work and hope you all have a great day!

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I wish I knew when to stop the LID:)! I have been on it for 16 days and when I went for my Thyrogen injection on Monday the Nuclear med tech told me that not every physician has their patients do the diet. She told me it was up to my surgeon to decide when to stop the diet. So, I called my surgeon yesterday and she said the only reason they put their patients on the LID is because the Nuclear med departments told them too. She said she didn't know when to have me stop it. So, now I don't know what to do:(. I hope to get more answers today.

Good luck with your weight! I can't imagine how discouraged you must be after losing 150 lbs. Hopefully, after your treament, you will be able to get the extra 30 lbs off. Hope your neck improves!

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Jamk3463, I am calling the Nuclear Med Tech this morning, so maybe I will know and will let you know. As for the neck, I had spinal surgery last July and it is fantastic. No more pain, no more numbness, etc. It is just that I was so sendentary for so long, auggghhhhh! It is frustrating and my gastric surgeon is not happy. My PCP is really good since he knows all I have been through and is willing to work with me. Thank goodness. I am off to call Sean, the Nuclear guy and will let you know if I find out anything. Have a great day.

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Jamk3463, I spoke to the Nuclear Med Tech for almost 1 hour today and he told me I can end the LID after the Whole Body Scan 2 days after the RAI. He said this is standard since they want to make sure the iodine from the RAI has taken affect and that can't happen if you resume eating normally and consuming iodized food and salt.

He also told me that my husband doesn't have to stay in a seperate place, he was going to a hotel, just a separate bed for the first 3 or 4 nights. He said that since most of the radioactivity is gone within the first 48 hours, secreted through urine, we simple can't have really close contact for about 10 days. Sean said we can hug and kiss, but not anything further. Since the Radioactivity passes through bodily fluids, you want to minimize the passage. We can sit in the living room together and even on the same couch after the first 3 days. It was a great conversation and very enlightening.

Good luck and keep us informed how things go.

Susan

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Susan,

Thanks for the info. It is very helpful. My husband is going to stay in the basement bedroom and I am on the second floor. We just weren't sure for how long. Helps to know it only has to be a few days. My kids are going to stay at my parents from Thursday through Sunday. It doesn't even sound like this is necessary, but I would rather be safe then sorry.

It is good to know I need to stay on the LID for 2 days following my scan. I am hearing so many different things it is a bit overwhelming. I am having my whole body scan and RAI tomorrow. I was hoping to eat normally tomorrow but will wait 2 days.

Glad to hear your neck is better. I am like you, frustrated with the weight gain. I am hoping to start exercising and get back to a normal life soon. I am tired of feeling exhausted all the time. Good Luck!

Thanks again,
Kelly

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Hello,
i just "signed up". Thanks for sharing so much of your experiences. It was really helpful "listening in". It IS quite sci-fi. I had my thyroid removed last week and am seeing the nuclear medicine folks tomorrow morning. I have never been so ill-prepared for anything in my life. I'm usually a good self advocate in medical settings but I am astounded how much I don't know or understand. A friend of mine asked me today if this was all routine. All I could think is it's not routine anyone would chose! Looking forward to learning from all of you. Thanks, Pat

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You know Pat, this is my second go round with the lovely C word. I had breast cancer back in January 2007. There is no "normal" with this disease. We all experience it differently. Fear not, you are no less prepared than the rest of us. Do bring someone with you to the doctor, as my experience has taught me that you may try and listen to what is said, but honestly, given that you are living this disease, you won't hear much of what is said. Also, make sure you ask questions. We were told by my endocrinologist that when I have my RAI treatment, that my husband would need to stay in a hotel or somewhere other than home because we have only one bathroom. Well, today the Nuclear Medicine guy tells me, no he can stay home, we just can't share a bed. My husband was up in arms, "if I get sick, I am suing the hospital and that guy!" When I contacted the endo and explained the conflicting information and my husband's concerns, the endo is new to this hospital and isn't familiar with the routine there and yes, my husband can stay home, but in a separate bed for the first 3 days.

You will like this! When I was diagnosed last June, a friend told me "if you have to go shopping for a cancer, this is the one you would buy!" "Thanks," I responded, "I would rather skip that store all together!" You gotta laugh! Susan

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