no iodine diet how did you feel.

124»

Comments

  • kelly-575
    kelly-575 Member Posts: 24

    RAI
    Goodmorning all,
    I am sorry I did not reply to Kelly over the weekend but I have had a set back . My Aunt had to be put in the hospital down in NYC for a bad lung infection. She is battling lung cancer and her sister my mom has an inoperable growth down between her rectum and vaginal wall. I was told to avoid stress but hey this is real life . My eyes were killing me ,I think I may have a cold , and my throat was so swollen I had to crack the PTU pills just to swallow them.
    Being the primary care giver and having this disease isn't a good match. Anyway Betsy to answer your question Yes I do have my thyriod they want to try RAI first then see what happens. I have been on medication PTU for months also Lipitor but now they have added a beta blocker because my resting pulse is 110. My body is running a race even in my sleep .Oh My God Wendy can I relate with the hot flashes or in my case wake up in the middle of the night feeling like my body is a furnace . I go outside even though it is 8 degrees and just sit on my porch for a minute or two. I think I have a better understanding of global warming lol.Cause I am burning up at times. A s for being scared sure I am because it's unknown and lets face it going to have radio active stuff put in your body is scarey. I have found that reading the emails and calling food companies asking questions ,so I know what to cook and eat has kept my mind off scarey to ANNOYING this has got to be the worst diet ever given to a person . Oats, apples, carrots, peeled potato, sugar Hmm I feel like I am shopping for a horse . I have to go use my eye drops they are still popping and it hurts . Take care for now , kathie

    Hello I was just wondering if when I am on the iodine diet if you are allowed to drink regular water?

    Thank you
  • kelly-575
    kelly-575 Member Posts: 24

    RAI
    Goodmorning all,
    I am sorry I did not reply to Kelly over the weekend but I have had a set back . My Aunt had to be put in the hospital down in NYC for a bad lung infection. She is battling lung cancer and her sister my mom has an inoperable growth down between her rectum and vaginal wall. I was told to avoid stress but hey this is real life . My eyes were killing me ,I think I may have a cold , and my throat was so swollen I had to crack the PTU pills just to swallow them.
    Being the primary care giver and having this disease isn't a good match. Anyway Betsy to answer your question Yes I do have my thyriod they want to try RAI first then see what happens. I have been on medication PTU for months also Lipitor but now they have added a beta blocker because my resting pulse is 110. My body is running a race even in my sleep .Oh My God Wendy can I relate with the hot flashes or in my case wake up in the middle of the night feeling like my body is a furnace . I go outside even though it is 8 degrees and just sit on my porch for a minute or two. I think I have a better understanding of global warming lol.Cause I am burning up at times. A s for being scared sure I am because it's unknown and lets face it going to have radio active stuff put in your body is scarey. I have found that reading the emails and calling food companies asking questions ,so I know what to cook and eat has kept my mind off scarey to ANNOYING this has got to be the worst diet ever given to a person . Oats, apples, carrots, peeled potato, sugar Hmm I feel like I am shopping for a horse . I have to go use my eye drops they are still popping and it hurts . Take care for now , kathie

    Hello I was just wondering if when I am on the iodine diet if you are allowed to drink regular water?

    Thank you
  • hamster_53
    hamster_53 Member Posts: 9
    kelly-575 said:

    Hello I was just wondering if when I am on the iodine diet if you are allowed to drink regular water?

    Thank you

    RAI water
    Yes you can drink bottled water, but look at labels some of the waters have flavors ,or salt added. I know this diet in not a low sodium diet but some comapnies use iodine. So just read ,read , or go online and look up the brand . Every comapany I have called is more then willing to tell me if the product is good for a no iodine diet.Poland Springs is a no salt water.
    Good Luck ,Kathie
  • hamster_53
    hamster_53 Member Posts: 9

    DOWNLOAD DIET
    I knew you had graves disease when you mentioned your eyes but I was afraid to say that because the name. My neck started hurting like I pulled a musle and I saw a bunch of docs but no body would do anything. I finaly had a MRI and they called me and said they saw somthing and I had to go see a surgen. My family has a history of thyriod problems. My sister had cancer in hers and had hers removed about 20 years ago. I went in and they took both sides out because they both had cancer in them. I had treatment 2007 at xmas and again 2008 before thanksgiving. I have to get tested again in July, I think its all gone this time because I feel better after this treament. We are still working on my meds to get the right dose. This sucks but thank god its cureable. Just remmber that. I dont have a co pay They pay 80 I have the rest. Once you start the meds you will feel soooo good. So have you had surgery????? Do you still have your thyroid??? About eating you can still eat all day all fuit is good and also there are all kinds of nuts you can eat too. Unless the peanut thing. There is candy you can find too. I have spent hours in the grocery store looking for food to eat. The diet sucks I hate it. Like I said if you want to talk while you are having your treatment so you wont be alone. I just put gloves on and used my computer. I have a great oncologist. My little sister has 4 boys and they all have thyroid problems.

    take care

    betsy

    diet and treatment today
    Hi Betsy,
    You were right about this diet sucking I never want to see another apple cinnamon anything for atleast a year or more. I bought a blender to mix bananas or other fruit because O.J alone gives me heartburn. I am drinking water like mad .but first I jumped in the shower and scrubbed my body raw. The new Tech I saw today told me rubber gloves are not needed only if your hands sweat then wash them . Next she tells me my dog can stay here with me , but becareful to limit my trash because the wildlife may get into it . I payed very little attention to this woman and am following the Endo's rules about my dog ,people coming here , and wearing gloves while using the remote .As for pain in my jaws she said try vodka lol but I am using lemon drops and another gum drop sour candy. Things I heard from you ,oh and she said don't use laxitives either .other patients may tell you things ie:gloves, laxitives,no dog but sometimes they aren't thinking right because of the various treatment and doses. I will tell my endo about her when she calls me. I meant to ask what do you do for leg cramps ? Other then that I am so glad I listen to you and made my food becasue I am wiped out and here alone. Not that any of this 'food" is appealing but atleast it's all made and just has to be heated up .As for snacks I baked a few things from that COOKBOOK and have candy ,chips, and byers all natural fruit bars those are good . Thank you for being here ,Kathie
  • valvester
    valvester Member Posts: 3
    kelly-575 said:

    hormone pills.
    Hello everyone I was just curious about what hormone replacement everyone was on and what everyone feels is the best . Also if anyone is takng a hormone for t3 also?

    I took Synthroid for many
    I took Synthroid for many years and switched to Armour Thyroid. I felt so much less tired on Armour Thyroid. Right now I am on nothing because I am getting ready for RAI.
  • d_in_oc
    d_in_oc Member Posts: 4

    need help
    OK dont be so scared. I know its scarry, you can touch things its ok. What I did was have wipes and that is what I used a lot off. I shared a bathroom so I wore the gloves so I didnt touch the door or toilet. You have to throw your tooth brush away after treatment.
    I also just made sure I had rubber gloves on all the time when I used the doors phones computers books and stuff like that. Your bed will be fine just wash the sheets and pillow case. Your body is going to suck the radiation to your neck where your thyroid was. All the reat will leave your body and disapate. Your main thing right now is to get on your food. Making food for you to make it though your treatment. You are going to get very tired and not want to cook or make food.

    If I missed something im sorry
    let me know if you need any more help

    Betsy

    RAI and prep diet questions
    Thank you to Betsy and everyone who has shared their experiences. I, too, am new to all this. Dec 11 I had a needle biopsy of an .08cm nodule, Dec 12 my doctor told me the result was "highly suspicious for cancer", and Dec 29 my thyroid and some lymph nodes were removed. Luckily it was small and hadn't spread to the lymph nodes.

    I'm about to embark on the next step, the low/no iodine and RAI and have about a billion questions. I realize you may have already covered some of them so forgive me if there are duplicates. Here goes:

    1. How long do you need to stay on "The Diet"? When can you go back to your normal diet?
    2. How often do you wash your bedding and is it just the sheets or also the mattress pad? What protects the mattress and your pillow?
    3. If I can't be near people after taking RAI why is it okay for someone else to drive me home?
    4. Do you have a recommendation for hand soap, shampoo, rinse, lotion, toothpaste, etc?
    5. Do you start the Milk of Magnesia the day you receive RAI? How much, how often, and how long do you take it?
    6. Any recommendations on what type of sour candy? How much do you think I should stock up? How long do you use it?
    7. Will I glow in the dark? (I thought we needed a little humor.)

    I don't feel like anyone who hasn't experienced this really knows what we go through. I've been told that if you're going to get cancer thyroid cancer is the best kind. And I'm sure it is compared to the other types of cancer but it's still cancer and a tramatic experience.

    When my doctor told me my thyroid should be removed all she said about RAI was that I "might" need it. Now I'm finding out that surgery isn't the end as I had expected. There's the diet, RAI, full body scans and who knows what else. (Well, I guess all of you who were ahead of me know!)

    I'm so thankful you're out there to help those of us just beginning this journey.

    Dana
  • cboo1974
    cboo1974 Member Posts: 56
    d_in_oc said:

    RAI and prep diet questions
    Thank you to Betsy and everyone who has shared their experiences. I, too, am new to all this. Dec 11 I had a needle biopsy of an .08cm nodule, Dec 12 my doctor told me the result was "highly suspicious for cancer", and Dec 29 my thyroid and some lymph nodes were removed. Luckily it was small and hadn't spread to the lymph nodes.

    I'm about to embark on the next step, the low/no iodine and RAI and have about a billion questions. I realize you may have already covered some of them so forgive me if there are duplicates. Here goes:

    1. How long do you need to stay on "The Diet"? When can you go back to your normal diet?
    2. How often do you wash your bedding and is it just the sheets or also the mattress pad? What protects the mattress and your pillow?
    3. If I can't be near people after taking RAI why is it okay for someone else to drive me home?
    4. Do you have a recommendation for hand soap, shampoo, rinse, lotion, toothpaste, etc?
    5. Do you start the Milk of Magnesia the day you receive RAI? How much, how often, and how long do you take it?
    6. Any recommendations on what type of sour candy? How much do you think I should stock up? How long do you use it?
    7. Will I glow in the dark? (I thought we needed a little humor.)

    I don't feel like anyone who hasn't experienced this really knows what we go through. I've been told that if you're going to get cancer thyroid cancer is the best kind. And I'm sure it is compared to the other types of cancer but it's still cancer and a tramatic experience.

    When my doctor told me my thyroid should be removed all she said about RAI was that I "might" need it. Now I'm finding out that surgery isn't the end as I had expected. There's the diet, RAI, full body scans and who knows what else. (Well, I guess all of you who were ahead of me know!)

    I'm so thankful you're out there to help those of us just beginning this journey.

    Dana

    Some answers
    Dana

    I can't answer all your questions but some I can.
    1. I found that how long you stay on LED (low idodine diet) all depends on where you are because the day I went in for RAI I was allowed to eat norml again but I've read where other had to stay on it longer. The best thing you can do is ask your oncologist.

    2. Not sure I had to stay in the hospital until radiation level was down far enough to be out in public for at least an hour.

    3. Once again I don't know about that because like I said I stayed in the hospital.

    4. as far as any of these products it doesn't matter what you use, but I was told that 3 weeks after I got home to throw out my toothbrush because at that point traces of RAI in saliva should be gone.

    5.I was never told to take milk of magnesia so sorry can't help with that one either.

    6.I stocked up on lemon drops but only took them the first few days, the doctor had showed me a technique to create more saliva. Which if you would like to know take your hand and use the inside part of it between the thumb and pointer fingers and start by your ear, add a little pressure and slide your hand down to your chin. I did this maybe 6-9 times a day and found that it really helped.

    7. haha, I had frineds ask me if I was going to glow in the dark.

    Thyroid cancer is cancer regardless if it is easier to treat. The process is not fun and it's just as hard for thyroid patients as any other cancer patient, we have to spend the rest of our lives with the threat of a relapse or getting a different kind of cancer just like all other cancer patients. Hang in there, your life has now changed but your strong and can get through it and deal with the changes.
    Cindy
  • d_in_oc
    d_in_oc Member Posts: 4
    cboo1974 said:

    Some answers
    Dana

    I can't answer all your questions but some I can.
    1. I found that how long you stay on LED (low idodine diet) all depends on where you are because the day I went in for RAI I was allowed to eat norml again but I've read where other had to stay on it longer. The best thing you can do is ask your oncologist.

    2. Not sure I had to stay in the hospital until radiation level was down far enough to be out in public for at least an hour.

    3. Once again I don't know about that because like I said I stayed in the hospital.

    4. as far as any of these products it doesn't matter what you use, but I was told that 3 weeks after I got home to throw out my toothbrush because at that point traces of RAI in saliva should be gone.

    5.I was never told to take milk of magnesia so sorry can't help with that one either.

    6.I stocked up on lemon drops but only took them the first few days, the doctor had showed me a technique to create more saliva. Which if you would like to know take your hand and use the inside part of it between the thumb and pointer fingers and start by your ear, add a little pressure and slide your hand down to your chin. I did this maybe 6-9 times a day and found that it really helped.

    7. haha, I had frineds ask me if I was going to glow in the dark.

    Thyroid cancer is cancer regardless if it is easier to treat. The process is not fun and it's just as hard for thyroid patients as any other cancer patient, we have to spend the rest of our lives with the threat of a relapse or getting a different kind of cancer just like all other cancer patients. Hang in there, your life has now changed but your strong and can get through it and deal with the changes.
    Cindy

    Thank you
    Cindy,

    Thanks for the quick response. I'm so glad I found this website.
    Check you private messages for one I sent you.

    Dana
  • This comment has been removed by the Moderator
  • Stephanie6
    Stephanie6 Member Posts: 10
    wknox said:

    Hi short stuuff, thank you so very much fo that information. I have my body scan tomorrow and i guess i'll GLOW the rest of the weekend, lolo... How was it trying to stay way from your family? I have three teenagers and a wonderful husband. I'm making meals today between naps of course. Who would have thought that the little heart shaped thing in your throat did so much work! I'm looking forward to more energy and more food options,definatly. I'm so cold lately, where you like that. Did you have a total thyroidectomy? This past Monday I had the first pill and scan, Tuesday I was showing 5% of still having cancer cells left. Back to the paper plates, did eveyone eat off of them or just you? Thanks for listening and the advise. God Bless you. wknox

    Scan
    This post is a few years old. How did you do? How many scans? I hope you are doing well. I begin my scan soon, but they didn't tell me NOT to eat anything. Just don't go over board.