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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..

shortstuff00
Posts: 27
Joined: Jan 2008

hello, So yes I had hot flashes but they go away. I had them after my treament but once I was on my meds they stoped. I was on 125 and just droped to 112 I was having the heart thing going on. I hate that its so scarry. I asked for that shot before my last treament because I had no energy too. He said no because its horamonal not a vitamin thing. But I do have energy now, it goes up and down. You have a nodgule in your neck?????? How big is it. Wendy you might have to have treament again. noooooooo Did they do a altrasound on it????? Let me know.

I wish you the best
Betsy

wknox
Posts: 20
Joined: Oct 2008

Hey good to hear from you, thanks. Yes, she thought she felt something in my neck my appt is wednesday for ultra sound & needle aspiration. Hey, another question my hair is falling out bad! I called the doc but I missed her responds, however in her message she spoke of just the imbalance of the body being off then on the meds. I hope is stops soon, its so thin, scary thin!
It was wonderful to hear from you. I'll let you know next week what happens. Thank you. I hope you are well, you are an angel for sharing such vital information. Thank you a ba- zillion. Wendy

shortstuff00
Posts: 27
Joined: Jan 2008

Hi Wendy

Im sooo sorry, I hope every thing turns out good. My Doc just lowerd my dose I was on 125 now im at 112 and I hate it when I change my meds I always get a Headache and a rash. My hair falls out some times too. It sucks because I had thick hair too. Hang in there and let me know.

Betsy

wknox
Posts: 20
Joined: Oct 2008

First and fore most you need to be informed. Shame on your Endo for not preparing you. Personally I would search for another doctor who you can talk too. With that being said I would call the Endo office; many times the doctors become complasive to the needs of patients. Call the front desk ask them what you should be doing. Many times the front desk will direct you. Download the low iodine cookbook. Your going to become hypothyroid and its no picnic. Eat only when your hungry as you metabolism is extremely slow. Ypu must realize this is a PROCESS its not like the common cold that comes and goes rather quick, you may not feel good for some time, be patient and pamper yourself. Be good to your body. Eating good healthy foods and drinking lots of water to flush out your system will help. Your body is receiving a foriegn element.
You can drive yourself to treatment but its always nice to have someone who is close to be with you for support. For 5 days you really shouldn't sleep with your partner and stay 5 feet apart, your body is radiated and gives off Gamma waves. Focus on your health, lots of showers with good soap the radiation is pouring out of you, open those poures and let it out. Water to flush your system out. Orange Juice to get your viatmin c level up. Sucking on lemon drops help your saliva glands to remain open.Dont expect your taste buds to be very cooperative for a while. Think of your body like it had has an intruder and under attack its your job to try and defend! I'm not sure I covered all your qusestion as Im sure I probably didnt but I hope I have offered you some insight to this. Call on me anytime I will do my best to guide you through this. It will get better but it will get worse before it gets better. Wendy

kelly-575
Posts: 24
Joined: Nov 2008

Thank you for responding to me. Nobody seems to want to help so thank you. I was just wondering when you had time could you tell me a little more info on the questions I had about sanitizing and what I do do keep things i touch not radiated, like my bed and phone? I did ask you alot of questions in my previous posting but I just feel like i need to know so I can get a grip of this.. Thank you very much

shortstuff00
Posts: 27
Joined: Jan 2008

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

kelly-575
Posts: 24
Joined: Nov 2008

Thanks everyone for answering my questions. It has made me feel better. I was also curious about how if your in your rrom all the time how does you room not get radiated? did you guys clean and sanitize it afetr radiation?

kelly-575
Posts: 24
Joined: Nov 2008

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?

kelly-575
Posts: 24
Joined: Nov 2008

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?

valvester
Posts: 3
Joined: Feb 2009

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
Posts: 4
Joined: Feb 2009

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's picture
cboo1974
Posts: 57
Joined: Oct 2008

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
Posts: 4
Joined: Feb 2009

Cindy,

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

Dana

hamster_53
Posts: 12
Joined: Jan 2009

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

kelly-575
Posts: 24
Joined: Nov 2008

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
Posts: 24
Joined: Nov 2008

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
Posts: 24
Joined: Nov 2008

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
Posts: 24
Joined: Nov 2008

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
Posts: 12
Joined: Jan 2009

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

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