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no iodine diet how did you feel.

wknox
Posts: 20
Joined: Oct 2008

can any one offer insite on the two weeks prior to RAI treatment. Ive been having strange symptoms, like my hands swelling and an immediate weight gain of 10 lbs. any one else have any strange things happen. cant wait to hear from you..

gmthul's picture
gmthul
Posts: 19
Joined: Sep 2008

I have had strange symptoms as well, but I think it is from the lack of levothyroxine, not the low-iodine diet. I have had chronically low calcium levels since my surgery, but now they are critical and I have had to eat Tums like candy to keep the tingling and muscle cramps at bay. I have also struggled with weight gain. Another survivor told me to eat ONLY when hungry and to eat about 1/4 your normal portion, then wait 15 minutes and only eat more if you are still hungry. So far using that method I have managed to lose weight instead of gaining during my hypothyroid phase.

Good luck.
Gen Thul

shortstuff00
Posts: 27
Joined: Jan 2008

I feel tired and get very board of this diet. I have been on it about 4 times now. I just eat lots of fruit and salads. coming off the meds make me very emotional.

take care
betsy

wknox
Posts: 20
Joined: Oct 2008

thank you for your respose its so important to have asupport group. wknox

meagz
Posts: 5
Joined: Mar 2008

I remember getting really tired of the diet and also gaining a lot of weigh, feeling really tired and depressed. Especially during my isolation after the rai, cause i was lonely and eating abnormal food.

but then a friend suggested a cookbook you can find it at www.thyca.org or just search under google (low iodine diet) and its like the 4th option.

Anyways it has a lot of really good ideas, ways to make things more appetizing. By no means does it replace salt but it helped a lot.

you can also use kosher salt (its not iodized)

hope this helps those of you that are going through this. I know its hard and frustrating so stay strong!

My best wishes to you all!

Meagan

wknox
Posts: 20
Joined: Oct 2008

thank you for your response. its so important to have a support system.

wknox
Posts: 20
Joined: Oct 2008

hi thank you for your kind words of wisdom. im coming up to the isolation stage. somehow we will get through this as im going to try and stay in my home with the family staying secluded. thanks again. w knx

shortstuff00
Posts: 27
Joined: Jan 2008

When do you have your treatment? I am having mine on the 24th of this month. This is what I keep in my room to help me. I keep water bottles lots about 24 and I take Phylips of Magnisa, cramp free so I can keep it out of my bowels. You dont want it sitting in your bladder or your bowels. So the first day I drink tons of water and clean my self out. Then next day its lemon drops. That helps get it out of your saliva glans. I eat them all day for about two days. The first couple of day you want to take a lot of showers too. Get it out of your skin. Ok now its the third day and I start to eat real food wooo hooo and take calcium pills and drink lots of orange jucie. This helps with your potasium and calsium levels. When you start eating it wont taste very good but every day will get better. oh you need a good hand soap for the bathroom to wash your hands alot. We do every thing paper like paper plates and and platic knives and forks so you can just throw them away. Let me know if you need any help with any thing. Hang in there it goes by fast. I read books and catch up on tv. I will have a computer in my room this time so I can talk to family.

You are in my thoughts

shortstuff00

wknox
Posts: 20
Joined: Oct 2008

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

shortstuff00
Posts: 27
Joined: Jan 2008

I was hard being away from my family. My son was at collage in florida and I live in oregon. He came home for xmas on the 23 and I had my treatment on dec 26. After 3 days you can come out of your room but you need to stay 5 feet away from family. No hugs. So I would come out for a hour or so and sit in a chair away from them but in the same room. That was nice. But after the 7th day hugs all day. I only eat off paper plates because of the radiation. I was told to put them in a trash bag and when I was done they had to be sealed up for one month before they could be thrown out. We talked through the door and played games though the door. I have a ds hand game and my son had one and you can talk on them, write notes. We did that all day. I would wake up and my husband would be in my room by the door watching me. I would tell him to get out because it was not safe. He said he was just checking on me. So he didnt follow the rules all the way. He would come in to make sure I was ok. Take lots of showers and you have to wash your cothes and sheets. Some times if you dont take anough showers and change your sheets you can get a rash. I did not want that. I think I got a little one. Oh on the second or thrird day your jaws hurt not bad just a little from the treatment, just keep eating your sour candy and it goes away. Dont expect food to taste good for about 3 to 4 days after that is normal too. I went in right after xmas so I didnt get to have the big xmas dinner and when I did I didnt taste good. But it goes by very fast and you will be out and having so much fun with your family again. Its not so bad you will see. I would call them when I was hungry and it was nice being feed all the time. I think I was cold too. When you go and take your pill they will go over every thing again.
Are you still on the diet???

Take care

shortstuff00

shortstuff00
Posts: 27
Joined: Jan 2008

Yes I had a total. They took both sides. I had cancer on both sides.

ladybug61
Posts: 2
Joined: Jan 2009

i am still so new to this process-that i get lost in alot of it. but you guys talk about making meals ahead of time-i guess what i dont understand is this for your family to eat after your treatment or do we still have a special diet afterwards.
and i guess after your treatment is when you started to really notice that you wanted to sleep all the time -is that right?
thank-you
darlene

Stephanie6
Posts: 10
Joined: Oct 2010

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.

erolyn's picture
erolyn
Posts: 21
Joined: Dec 2008

so I just got done with RAI (HOORAY!!!) and started my cytomel/synthroid today, but I'm still having some symptoms that concern me.

I've been having mood swings and they're getting worse...I'm really really happy sometimes, and then kind of depressed. And I could handle all that, if it weren't for the fact that for the past few days when I wake up, I'm actually depressed to the point of physical pain. Like I feel sick to my stomach, and my chest hurts and it takes awhile before I can move. Is this normal? I mean I know there's nothing to be done about it but wait for the drugs to kick in, but it's kind of starting to scare me. Also I go back to college in a few days, and I don't know how I'm going to wake up and go to my classes like this...any insight here at all would really be appreciated.

kelly-575
Posts: 24
Joined: Nov 2008

Hello I am recieving my rai in 3 weeks. I am also working and going to school. School is difficult due to being tired all the time and foggy minded but you will be able to do it. You just gotta fgorce your body!!! I have a couple of questions for you. Before your radiation did your doctor tell you how to prepare yourself and what you need to do during the isolation time. Also did you have to drive yourself to the hospital? Also could you leave your room at all and did you have to wash your sheets and blankets daily? One more question, what did you do to your bed to prevent it from getting radiation.

Thank you so much,
Kelly

kelly-575
Posts: 24
Joined: Nov 2008

Hello I am recieving my rai in 3 weeks. I am also working and going to school. School is difficult due to being tired all the time and foggy minded but you will be able to do it. You just gotta fgorce your body!!! I have a couple of questions for you. Before your radiation did your doctor tell you how to prepare yourself and what you need to do during the isolation time. Also did you have to drive yourself to the hospital? Also could you leave your room at all and did you have to wash your sheets and blankets daily? One more question, what did you do to your bed to prevent it from getting radiation.

Thank you so much,
Kelly

kelly-575
Posts: 24
Joined: Nov 2008

Hello I am recieving my rai in 3 weeks. I am also working and going to school. School is difficult due to being tired all the time and foggy minded but you will be able to do it. You just gotta fgorce your body!!! I have a couple of questions for you. Before your radiation did your doctor tell you how to prepare yourself and what you need to do during the isolation time. Also did you have to drive yourself to the hospital? Also could you leave your room at all and did you have to wash your sheets and blankets daily? One more question, what did you do to your bed to prevent it from getting radiation.

Thank you so much,
Kelly

kelly-575
Posts: 24
Joined: Nov 2008

Hello I am recieving my rai in 3 weeks. I am also working and going to school. School is difficult due to being tired all the time and foggy minded but you will be able to do it. You just gotta fgorce your body!!! I have a couple of questions for you. Before your radiation did your doctor tell you how to prepare yourself and what you need to do during the isolation time. Also did you have to drive yourself to the hospital? Also could you leave your room at all and did you have to wash your sheets and blankets daily? One more question, what did you do to your bed to prevent it from getting radiation.

Thank you so much,
Kelly

kelly-575
Posts: 24
Joined: Nov 2008

Hello I am recieving my rai in 3 weeks. I am also working and going to school. School is difficult due to being tired all the time and foggy minded but you will be able to do it. You just gotta fgorce your body!!! I have a couple of questions for you. Before your radiation did your doctor tell you how to prepare yourself and what you need to do during the isolation time. Also did you have to drive yourself to the hospital? Also could you leave your room at all and did you have to wash your sheets and blankets daily? One more question, what did you do to your bed to prevent it from getting radiation.

Thank you so much,
Kelly

wknox
Posts: 20
Joined: Oct 2008

yes im still on that lovely no-iodine diet; the diet you wish you could brake but you know you can't. If only every diet could be so demanding we'd all be thin lololo..... May i ask are you getting ready to repeat the no iodine to be checked or do you still have cancer? Its ok if you dont want to answer i know its personal. I would like to thank you so very much for "all" your woderful information.
After the body scan and radiation tomorrow we'll stop and get the milk of magnesa, oj and more lemon drops. TTYL.God Bless WKnox

shortstuff00
Posts: 27
Joined: Jan 2008

My doc dont know if its cancer or just tissue left from the first time. My blood test come back with no cancer cells. but my scan said yes????? So they had me go have a ultra sound and they didnt see anything. I was having surgery on my neck, I was getting my c 5-7 disks removed and then new ones put in and then fuse them. I asked that doc to look at my thyroid to see what he saw when he went in there because he went in right above my thyroid scar.... He said no wow so I dont know what is there????? Cancer or just tissue. They are giving me the same dose that I got the first time so it must be something there.... So now I have two lovley scars to tell stories with lol. I try to come up with funny ones or scarry, It depends who im talking too. lol

take care

shortstuff

wknox
Posts: 20
Joined: Oct 2008

Hi Shorty. How are you? Day 4 for me after receiving my Radioative pill. Thus far, hot, cold. tired, awake, a little upset stomach. I return Wednesday for my body scan. On Friday I start back on synthroid and cytomel, I can't wait..Just wanted to say Hello. Very bored today as everyone is either working or in school. TTYL.Wknox

shortstuff00
Posts: 27
Joined: Jan 2008

woo hoo Day 7 for me. ok I had a hard time. This time was very rough. I took my pill on the 24th and it was hard. My jaws hurt so much and they swelled up. I ate my sour candy but wow. It really ate my tummy this time. I think I still dont have my taste back. I can eat now but it dont taste good and my stomic still hurts. This was new and weird on the third day my eyes swelled up????? Like I said its day 7 and im still feeling bad. I started my synthroid on day 3 so hope it starts working. I think because I just had neck surgery and then my treatment 10 days apart was too much at one time. I hope this weekend I will feel good and get out of the house. Im so tired but you know how that is. I will go back to work Nov 7th and I work at Target so I need to get up and going because this is our busy time..... I have my scan on friday. I better have killed it this time, I really dont think I could do this a third time... I wonder why they had you wait on your synthroid????? I was told to start mine on the third day. hummmm Well good luck now we wait 6 months and start this again. I pray that they see nothing in 6 months.

God bless you
Shortstuff

wknox
Posts: 20
Joined: Oct 2008

hey girl how are you feeling. we havent spoke since October. i just saw my endo dr. and low and behold she found some nogel i have an ultra sound and needle aspiration at the end of the month. hey got a question. did you ever have hot flashes after all this treatment? im burning up, help. oh my repeat no iodine and the uptake are in april. my neck feels really funky hard to swollow sometimes is this normal. caint wait for your response. ttyl. w knox

wknox
Posts: 20
Joined: Oct 2008

Hi shorty im so sorry your having such a time of things this time, i cant beleive your ready to go to work. I cant seem to get moving.
My balance is off a bit as is my sight, taste, everything. I dont think i'll repeate any of this. The diet wasn't bad but as they say "The Cure is Worst than the Cause"..I took your advise and did a laxitive after i saw my full body can and were it all ended up.
Shorty, your in my thought and prayers, may peace be with you. Please take care, Wendy

shortstuff00
Posts: 27
Joined: Jan 2008

Ok im still hafe dead. I still have no taste and having trouble keeping food down. I still have been hafe in bed or on the couch. I still dont feel good. I hope to be able to start working on the 7th, but I dont know. It takes you meds about a month to get in your system. Then your doc will lower or raise it. Make sure you get your blood taken every month to see your levels and get your meds right.

Wendy I asked if anyone has done this three times and I was told yes. I told my guy that has done all my scans and gave me all my radio active iodine pills that I would not be seeing him any more after my scan on friday. He laughed and said see you in 6 months. I said no im done. wow I could not make it though it again.

Let me know how you do on your meds and good luck on your next set of test in 6 month.

Betsy

wknox
Posts: 20
Joined: Oct 2008

Hi Betsy
I feel the same as you I dont care to go through this again either. It wasn't the diet it was the radioative pill and being hypothyroid. Like i said the cure is worst than the cause!
They have me on 150 synthroid and cytomel twice a day. I like the cytomel better than the synthroid as the synthroid gives me a headache. I still have no taste buds either and the buds i do have likes very rich, salty foods. Not something I usually eat.
I'm actualy beginnning to warm up and feeling less tired so I know the meds are beginning to work. I'm not ready to go back to work as my equlibrium is off a bit.
Betsy, I can't thank you enough for being here for me during a very scary time in my life. Your words were my strength, and I'm so grateful for you. If there is ever anything I can do for you please never hesitate. Thank you my friend. I'll be thinking of you when you go back to work and I'll be pulling for you! God Bless you, Wendy

shortstuff00
Posts: 27
Joined: Jan 2008

I just wanted to ck on you and see how you are doing????? I had a great ck up and I dont have to see my doc for two months wooo hoooo. I hope that is a good sign.

Betsy

hamster_53
Posts: 12
Joined: Jan 2009

I am scared and confused . Is it alright for me to hang out in my living room? My family and dog will be away for the 3 days.However when they come home will my house be a threat to their health ? Should I cover my couch ans bed with plastic ? Oh and I am aspirin allergic what laxitive should I use ? Help I go in Feb.6th .

shortstuff00
Posts: 27
Joined: Jan 2008

I used Milk of Magnesa. Use the one that is cramp free. Have bottles of water in your room so you can drink lots of water. I used Milk of magnesa about three times the first day. You do not want that stuff sitting in your bowles. OK now that you have cleaned out your system that will take away Potasium and calcium, so when you can eat normal food again wooo hoooo you will want to drink orange juice to help with that. that will also help with leg cramps. If you get legs cramps bad let me know and I have a way to stop that tooo. This really sucks and im so sorry you have to go through this. But I does get better. I will be here for you if you need to talk. If you need help with food I made up some fun stuff I will let you know some good food tooo. I have been on that wonderfull diet 5 times. I know how bad it is. Just make sure you make it all ahead of time because you are going to get soooooooo tired you are not going to want to make anything. I have friends come over to just heat up my food and help me. Because I will say it again, YOU WILL BE VERY TIRED. Its ok to just sleep and sleep. O take a shower a couple times a day just to make sure you get it out of your skin. You are not going to want to but do it. You might get a rash if you dont. Please eat sour candy the second day because your jaws will hurt and you need to get the stuff out of your saliva glands. You might not be able to taste food realy good for a couple of weeks after treatment. The second time I lost my taste for a month. It was a great weight loss programe. hahaha. But you will be fine it goes by fast and you can talk on the phone and the computer if you like. I wore rubber gloves when I used the computer and phone. I bought a big box at the grocery store.

Take care and again in here for you dont be scared.

Love Betsy

shortstuff00
Posts: 27
Joined: Jan 2008

You will be ok. Just wash the beding you are laying on and blankets. The house will be fine. I would not hold the dogs for 5 days. After 5 days you can sleep with your husband if you are married. I have had this treatment twice. I used paper plates and siverware so you can throw it all away. Make sure you have plenty of meals made up because you are not going to feel like making any thing while you have the treatment. I was on the computer the whole time while I was having mine, so if you want to talk I will keep cking on here and will visit with you. Just make sure you eat lots of sour candy the second day.

Take care
Love Betsy

shortstuff00
Posts: 27
Joined: Jan 2008

You sould have some one come and heat up your food for you. They can be in the house with you just go to your room. You will be to tired to cook your own food.

Sorry im writting so much just trying to help.

Betsy

hamster_53
Posts: 12
Joined: Jan 2009

Thank you so much for the information as I just got home from the hospital with a brown envelope full of info . However I found one or two items I can eat , and they tell me I would be cramping ,my jaws would hurt ,and just call to get motrin. Thank God I stumbled across this site and all of you . The diet I found online is a low iodine one I need NO iodine .I suppose I can live on water, tea , and rice cakes eww . I only weigh 108lbs now so I am worried about losing weight again. When I finally found a good doctor that told me what was going on I was down to 87lbs. My normal weight is around 109lbs to 103lbs .I am a very thin small boned person with concerns about calcium now more then ever. Betsy you have answered my questions and made me feel less alone and misunderstood . It is suprising to me that so many people think wow that's great you get to stay home and do nothing. This is no vacation it is a nightmare . Oh the reason I picked hamster as mt SN is because I am so tiny and already had big eyes well I now look like the hamster in that movie "bedtime Stories". I keep asking will my eyes get better but I never gat a straight answer from any of the doctors I am seeing.
Vanity can go out the window and I can change jobs once this over all I want is to feel better . I stop my meds on January 31st so I better go shopping and make some food I can freeze as I am alone and will be for awhile.
Thank You so very much,
Kathie

shortstuff00
Posts: 27
Joined: Jan 2008

So I have some meals for you to try. You take hamberger patties and lay them on tin foil and slice up potatoes and put that on top of the patty and them slice up carrots and put that on top and slice up onions put that on top. close the tin foil up and cook for 1 hour. I made like 10 of them. After they are done I put them in baggies and froze. They take like 2 min to heat up. I found no salt ketchup that I put on top. Or you can make up a salsa with alvacado onions and papya. I also made this, no salt corn in a pan with cooked hamberger meat cooked up with some no salt diced tomatoes with yummy herbs. Its like a soup its really good. I also made spaghetti Just follow a normal recipe but you can buy no iodine salt and use that. I used mrs. dash tooo on every thing. I also found no salt chips and I ate them all day with alvocado. You can find no salt peanuts I ate them all the time too. You can also find no salt peanut butter and crakers with no salt and I made little peanut butter and jam sandwiches with that. You can make big salads with chicken and use oil and vinegarett dressing. You can make rotisserie chicken with mrs. dash or fry up some chicken. The second 4th time on this diet I was sick of all food. I just didnt taste good so I did lose weight. I stated at about 140 and was down to 120. But I lost all my taste buds so nothing tasted good so you dont eat as much. But once they came back I was eating everything. lol lol I am at 132 now. I work at Target thank god they understand all this because I was out for 3 months the last time. I was so tired. But once you get on your meds and they get it right you will feel wonderful. Like I said start your meals now and have pleanty because you will want to cheat bad because you are so hungry. Please try to have some one come help you. I had friends come over and help me. You will want some one to heat up your meals. The first time I didnt and I eat oat meal for a week, lol lol I will never eat oat meal again. Egg white omlets are good too with veggies and I put surup on top just for taste. You can buy just egg whites in a carton, I bought a lot of this or you can just make scramble eggs with just egg whites and eat that with ketchup on top, again this is for taste. You jaws will hurt but it dont last, just eat lots of sour candy that will help. When you start your meds it will give you a head ache for a couple of days, this is normal. I know this sounds bad and im so sorry but you will feel better after its all over. They say the cure is worst then the cause.

You have friends here to help
Love Betsy

Oh your eyes that is part of a thyroid problem if you go on the internet and look up thyroid you will read about some times it makes your eyes big. I hope that helps. What kind of thyroid cancer do you have? Did you have both sides removed? I have papillary, I had cancer on both sides. I had mine removed Nov 2007 and had treatment on Dec 26th 2007 and had treatment again this year Oct 24th. I will be tested again in July. Just hang in there.

maggintex
Posts: 3
Joined: Jan 2009

Iam sorry I am new to all of this and didnt know how to post a comment except to reply. I had surgery on Dec 18th and they removed my entire thyroid, 2 parathyroids, along with 19 lymph nodes. It took us 2 weeks to get the results back because they wanted to get a second opinion. When they told us it was cancer I went back to the doctor and that day he told me to start this lovely low iodine diet!!! Which kinda sucks since everything I read says to prepare your meals before starting. I feel like I am going blind and just hoping I am eating the right things since its low iodine and not low sodium as everyone says, however nothing tells you how much iodine is in anything. I have joked with my mom that well if it has no flavor then it must be on the diet. Where did you find the kethcup and other items you were talking about? My other problem is that I am not a big veggie person which makes it much harder since we cant find foods to fix. This along with not being on my meds just makes me have no energy and feeling nauseous all the time. I am normally a very active person and this is the hardest part in dealing with this. I have been staying with my mom since the surgery but am planning on going back to my apt after the RAI which I am a little nerous about. do you mind if I also ask was dose of RAI you had? My doctor said I will be getting 29.9 since they took the entire thyroid, this is more of a precaution and to make it easier to tell if the cancer comes back in the future. I am really looking forward to hearing back from you, I have enjoyed reading all of your comments and appreciate you sharing what you have been through. Iam glad to hear things sound like they are getting better for you and wish you more good luck to come your way as for everyone else here!!!

shortstuff00
Posts: 27
Joined: Jan 2008

Hello, I had a dose of 100 both times. When I went back in 6 months later they saw something again so I had the same dose. Yes you get very tired, I was very active too, worked through the first time and I would go to work and come home and sleep. I think I slept for months. But once the meds kick in you feel better. The second time there was no way I was going to work again and took 3 months off. I think that helped me bounce back faster. Im on sythyriod now and take 112 I was on 125 but that was to high. I found all my stuff at the grocery store and trader joes. I was not prepared the first time and ate oatmeal for a week. I was on the diet the first time for a month and That diet sucks. This does mess up your eyes for while I was thinking I needed glasses. If you could stay with your mom, that would be good so she can help you. You will want her to heat up your food for you. Its just nice to have someone around while your having your treatment. It makes you feel sick and you will be more tired. Positive thinking helps, and as you see here you are not alone. I would have loved to join any glub but this one but here we are. Its just nice to know there are others going though the same thing. Its funny because we all feel the same way. The mood swings,tired,leg cramps.

When are you having your treatment?

take care
Betsy

maggintex
Posts: 3
Joined: Jan 2009

Betsy,

Thank you again for your kind words and telling us all about your experience. I feel that I have got more information from you and others like Wendy from here than any place else. I go in for RAI next Tuesday the 27th and then for my 1st body scan on the 2nd and my 2nd scan on the 5th and then am hoping I will feel well enough to go back to work the following Monday on the 9th, since I have been out of work since my surgery on Dec 18th. I just keep thinking just another week and 2 days of this diet!!! Then hopefully I will get to feeling better. I have lost weight as of now, but I think that is also due to not eating since nothing tastes good. I have some questions for my doctor after reading what you have gone through and I thank you again for that. All he told me was that after taking the RAI I will be so bored but none of the other things as far as taking the Phylips of Magnisa, lemon drops, water, extra showers, or using the disposable utensils and plates. When you went back for your scan to see if it had come back did you have to go off of your thyroid medicine? And did you have to do this lovely diet before the scan?

shortstuff00
Posts: 27
Joined: Jan 2008

6 months after your rai you will go on the diet again but only for a week and you will have to get a shot to rid your body of Iodine. You will get the shots two days in a row. Thank god its only for a week of the diet. Then you will take a pill and get a scan. They saw in the scan that it was still there so I had to go on a different thyroid pill for a weeek and then no pills and had my treatment again. I will do this again in July, it better be gone this time. I weighed about 142 when I started and ended up at 120. I didnt eat because nothing tasted good. After the treatment I lost my taste buds for about 3 weeks so I didnt eat because you know what it should taste like but it taste like dried bread or cardboard. lol lol. If you dont have a thyroid you are hypothyroid and that makes you gain weight. So we do gain the weight right back. You will get to know your body and when you start to fell tired you will know your meds are wrong. I go in every 4 weeks for a blood test to make sure my meds are ok and to see if there are cancer cells. My meds never where right I would go up and down. My last ck up he said my leavels were great and I didnt have to go back for two months. That was a big for me. My wooo hoo. Your radioligest will tell you all about what you will need to do during your treatment. He or she will become your best firend. They sit you down before and talk about the pill and how you will feel. Trust me we all go thought the same things. I bought a note book in and wrote every thing down. They will give you paper work too, to bring home. All your paper plates and trash you have to hold for one month so it will be safe for the trash man. I just put it in the corner of our carport. I just made sure I didnt touch anything we had to reuse. Throw out your tooth brush and anything like that, when you are done. I will go by fast and you will back at work and EATING EVERYTHING.

My sisters doc told her its like a mini vacation when she had her treatment......... I dont know what they are talking about. They need to have this done and then see what they think.

Do your own research because this is your body and your life, If you feel your doc is not helping ask questions and look it up.

take care
Betsy

maggintex
Posts: 3
Joined: Jan 2009

Betsy,

I have to agree with you about the doctor. Mine told me you will be fine you will just be so bored and just from this diet and no medicine I feel like I am dying since I have no energy!!! I said the same thing to my mom, I have told her many times through this that I think these doctors should have to go through this diet even just for one week. My doctor is pretty good, its just his staff we have a hard time with. I did call today to ask him some questions since you said that you had the 100 dose and I am only going to need the 29.9 I was wondering if some things might be different as far as being around people. They said that they gave me the paperwork but they didnt so they are faxing it to my dad and he will bring it to me tomorrow. I just want to be prepared. The little amount of energy I do have now I dont know if I will have after the RAI so I just want to be prepared.

I am in the same boat about the weight loss. I thought well at least I am losing weight through all this which I needed to do. Its just not the way to do it. I have said the same thing. I am losing the weight because nothing tastes good and so I am not eating which is not good either. You said that you gained the weight back though once you got back on your synthroid right? I was hoping that even though they took my entire thyroid that since I will be on the synthroid to help regulate everything that I might be able to keep it off, I guess we will wait and see. Because my surgeon had to remove all the lymph nodes along with the thyroid, my taste buds havent been the same since the surgery over a month ago so I am looking forward to tasting food again. I cant believe I have been doing this for 2 weeks now...ony 1 more week to go!!!! yea!!!

I am so glad that you were finally able to get your meds right, I can image how frustrating that can be for you and what a relief to get the good news!! They had to add OsCal to my meds because my calcium levels are low on top of eveything else, which is normal since they took two of the parathyroids too. Thats been the hardest though is taking all this medicine because if I take it on an empty stomach I get sick but then nothing taste good so I dont want to eat and yet I have to take them twice a day...I will be so glad if I never have to take another TUMS again!! I am 32 and feel like I am an old lady popping my TUMS like I do!! lol

I am going to sign off for now, I just dont have much energy today but I wanted to say hi and thank you again. I really cant express how much your knowledge, sharing, and words of encouragement mean to me. I hope you have a good day!!!

shortstuff00
Posts: 27
Joined: Jan 2008

I know how you feel. Im 44 and I felt like a old lady tooo. I fell so sorry for my boyfriend, He was cooking cleaning and washing clothes. He did every thing for about a year. It does get better, you will be eating again and feeling good. About the weight, we have no thyriod so we will have weight problems the reast of our lives. I weight 132 now, I am 5'4 so it shows more. I was up to 146, I go up and down all the time. But I have to work really hard to not gain a bunch. I know the energy thing is bad, but for now you are only going to want to sleep and sleep but once the meds kick in you will be out doing things again.

Hang in there

Betsy

kelly-575
Posts: 24
Joined: Nov 2008

Hello, I have read your postings and am hoping you could answer some of my questions. I got my whole thyroid tooken out dec 17 and my entire parathyroids. I am starting my radiation feb 25 and have no idea what I am doing or how to prepare for it. I went to the endocronologist yesterday and basically he told me nothing. Just asked me how I felt and told me that I will be on radiation feb 25. He didn't even tell me about the low iodine diet. I just know about it due to my research. So I feel very lost and confused right now and was hoping you could help. I need to know how to prepare for it. I live with my boyfriend and he will be in the same house with me. Is that ok? When I go to the hospital the day of do I have to go by myself? Can I walk through my house after the radiation or do I have to stay in my room. How long does my boyfriend have to sllep in different bed and use different bathroom? Do I wash my sheets and clothes everyday? and what about my bed? also what about my pillows and cell phone and tv remmote. Do they have to be covered with plastic? Am I allowed to go outside? When can I eat normal again? Can I still take my calcium and Vitamin pills? Do I have to throw away everything I touch. Will I be able to do my homework and reads my text book with out radiating it. One more question.. How does the radiation not radiate your whole room? Do I have to sanitize it after wards?

Thank you so much!!!!!!!!!!!!!!!!

shortstuff00
Posts: 27
Joined: Jan 2008

Hello Kelly, My name is Betsy I have some help for you. You will go and see your Radiologists they will talk to you about what to expect and what to do. I will tell you what I had to do. I had to go on the diet a month before my first treatment of the RAI you can find the diet on line anf down load it. You will want to start making food right away because you are going to get very tired. If you need help with food ideas let me know. Then you will go and take the pill. You can have someone with you. Its scarry the first time. Then you go home. oh wait what you will need in your room. You will want to buy milk of Magnesia cramp free to take when you get home from taking your treatment. You want to not have this RAI sitting in your bowles. You will want to have a bunch of water to drink too. I just used water bottles. You will want to get sour candy to eat the second or third day to help get it out of your saliva glans. Your jaws will hurt and this will help alot. You will want to take a lot of showers to get it off your skin. So for the first day you will be drinking lots of water and cleaning out your body. Then the next couple of days you will be getting it out of your saliva glands. Your Doc will let you know when you can start eating normal food again, WOOO Hoooo but it wont taste good because your taste buds will be messed up. You can be in the same house with others but you have to stay 5 feet away from them. I would be in my room with the door open so I could see people. I talked on the phone and watched tv. I just wore rubber gloves. Every thing I touched like books or my phone I worn rubber gloves. You have to wash your own clothes, you dont want any one touching them or your bedding. I ate off of paper plates and plastic silver ware because you can just throw them away. But anything like that you have to put in a trash bag and keep away from everyone for 1 month. If you can have someone there to cook for you that would be good because you are not going to feel like it. About the 7th day you will go in and have a scan to make sure it went to the right place. In 6 months you will do this again to make sure its all gone. But you wont have to go on the diet that long. You can walk around the house just be careful not to get by anyone. You can go out side too. You just want to be 5 feet away from anyone. You dont have to put plastic on your bed. I hope this helps, the diet sucks but it will help you. Dont cheat make sure you have plenty of food and snacks.

Take care Betsy

wknox
Posts: 20
Joined: Oct 2008

Hi Hamster I to found great comfort with this site and its members, especially Betsy. I had a totoal thyroidectomy and did the no iodine diet in October 08. I re-test in April and I'm dreading it. This year is going to be really busy. After the uptake it took me months to feel human again. If I can be of any help contact me. Hope your feeling well! God Bless. Wendy

hamster_53
Posts: 12
Joined: Jan 2009

Just one more thing what exactly is a good soap? I just read labels in my bathroom and kitchen only to find all my soaps have salt in them. Or milk, seaweed products. Got any names of brands you used ?
Kathie

hamster_53
Posts: 12
Joined: Jan 2009

Just one more thing what exactly is a good soap? I just read labels in my bathroom and kitchen only to find all my soaps have salt in them. Or milk, seaweed products. Got any names of brands you used ?
Kathie

hamster_53
Posts: 12
Joined: Jan 2009

Just one more thing what exactly is a good soap? I just read labels in my bathroom and kitchen only to find all my soaps have salt in them. Or milk, seaweed products. Got any names of brands you used ?
Kathie

wknox
Posts: 20
Joined: Oct 2008

Hello, I'm 45 and had a total thyroidectomy in Aug 08 it was papillary cancer only one side. You should be able to downoad the Thy Ca no iodine cook book, mine was sent in the mail. I used a few recipes my favorite were the nuts. Popcorn is a good filler as is rice cakes with topping. I usually ate oatmeal for breakfast and peanut butter on no iodine bread and a small dinner. Only eat when your hungry. I feel your pain. The diet wasnt so bad its when you become hypothyroid and your gaining weight and have no energy. It took me 3 months after uptake to feel human again. I'm suppose to repeat in April, I'm not sure I can do it agian. Let me know if I can do anything else to help. God Bless, hang in there it will go fast. Wendy

hamster_53
Posts: 12
Joined: Jan 2009

Hello ,
I just returned from the Stop&Shop grocery near my home and looked at labels .OY VEY the kosher foods had alot of sodium except for lovely cardboard saltless matzo. I was going to buy saltless peanut butter but now the news is talking about a recall. Damn this had to happen now ? So I suppose it's the pure jams smuckers makes called simply fruit ,and those hambuger veggie no bun wraps Betsy mentioned. Breakfast ,snack time will be rough I am one of those people that eat all day . I rarely have 3 meals it's more six minis .There is the rice cakes oh they looked inviting ,black coffee , and a fruit. Oh can we eat bananas? Or are they too easy so I need to peel some apples and make breakfast mush . I got my packet this morning I think somebody made an error or two they want a pregnancy test lolol I had my tubes burned 7 years ago and now I am 53 . Plus they said show up Thursday Feb.10,2009 for RAI in my world Feb. 10th is Tuesday. So I have some calls to make Monday morning. Also Betsy the oncologist did not say cancer out loud just come in on the 3rd of feb take a pill then come back the next morning for the scan. The endocronigist said it's graves disease but then sent me for a ultr sound and now all this crapola .You have me thinking about target I met a woman that had thyriod cancer and works there . She had nothing but support .Who knows maybe when this is all over I can apply at the pharmacy in my target . Again thank you and Wendy for being here for me I feel less alone . My family is far away and I was the caretaker for my mom before I became ill in August and was seeing a really bad doctor I was shrinking he said take lipitor and eat oatmeal . I said go to hell finally and found a good primary care person .That brings up to now 3 doctors and I got more info from you. Whats your co-pay? take care, Kathie

shortstuff00
Posts: 27
Joined: Jan 2008

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

hamster_53
Posts: 12
Joined: Jan 2009

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

wknox
Posts: 20
Joined: Oct 2008

Hi Betsy
Did you ever have hot flashes during your adjustment period for Synthroid. I have felt like a boiler lately. I jumped up to 175mg hoping that the increase in dosage would help. No such luck so I'm back taking 150mg.
Hey my last visit to the Endo she gave me a boost of B12, Sweet! Feeling wonderful except the hot flashes. Still have to see whats up witht he nogel in my neck I'll let you know. Always something. Wendy

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