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Any advice before RAI treatment???

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi, I am 3 weeks post completion thyroidectomy for papillary ca. Basically feeling good, I am an athlete.....continuing with my running etc (sometimes feeling like I'm in slow motion . I have been off the Cytomel now for over a week and my RAI is on the 11th of January. I would appreciate any advice from those who have already been thru it. I constantly search the web for info!
Thanks

emma54
Posts: 59
Joined: Aug 2009

You will probably need to stop running (temporarily) soon. I overdid it with activity before my RAI and it was not good. You should rest. Good Luck! You will be fine.

usljh10
Posts: 85
Joined: Apr 2009

Are you staying at home during your RAI?
Lisa

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Yes, I will be at home. Have read lots of info online........haven't yet heard what my hospital recommends. Any person recommendations??

Sandy

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Thanks for your comment. What did you feel? Why do you say you over did it? Thanks again

emma54
Posts: 59
Joined: Aug 2009

Once I got off the Cytomel in preparation for the RAI, I gradually started to feel more and more fatigued. I am a swimmer and could not possibly go to the pool. I also have my family that I take care of and I did not stop cooking, cleaning, laundry, paying bills, (plus I had a small part-time bookkeeping job). So I dragged myself through these activities and my blood pressure spiked dangerously high. I was at the point where I could not get up, so my husband and girlfriends turned on the air conditioner in my house (it was a nice summer day) and rubbed me down with ice and just stroked my arms to relax me. I had to stay in bed until my RAI which was only 2 days away. The doctor wanted me to go to the hospital if my blood pressure did not go down, but it did because of the great care I received from my hubby and friends. After RAI, I stayed in my bedroom and my hubby did everything. So all I am saying is that if I can help anyone on this site and I hope I can, I hope I can help you by telling you to honestly allow yourself to take it easy before you collapse like I did. Just rest. You owe it to yourself and you will be up and about in no time. I am so glad you wrote back because I've been thinking about you all day!

Oh just want to add one more thing. Perhaps you will be one of the many who are not affected by the depletion of metabolic hormones in prep for the RAI. That would be great, however, if you feel that fatigue just go with it.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Once again, thanks for your reply. Since I've been going thru this I have been searching the web for others involved in sport...........to hear their experiences. I think that I have been listening to my body, but am still pushing. Today I did a blood test , and we'll see what my TSH is, maybe it hasn't gone up much yet and therefore i feel ok. Anyway, thanks

Sandy

andreapj
Posts: 6
Joined: Jan 2010

I had RAI (154 mCi) on Dec. 18. I teach high school. I knew that I would need to change my usual activities, i.e. I spend all day with teenagers and then grade papers for three hours every night. Despite the financial hit, I worked part-time from when I returned to school post surgery until finishing RAI. It was the right decision. I felt progressively worse in the three weeks I was off cytomel prior to RAI. The changes were incremental and cumulative. This is a time in your life when it is okay not to push yourself.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

well my TSH is up to 22 and I have one week to go. Thank you for your advice. I understand what are you are saying, just good to have it reinforced.
So far so good

Cheated
Posts: 4
Joined: Jan 2010

Hi,

I had the RAI a year ago. I, too, felt pretty good the 2nd week. At about the 2 1/2 week mark, however, I could sense a huge change coming. The best way I know to describe it is that I felt like I was walking through quicksand, or walking against water. I remember thinking that I was probably walking at my normal rate of speed, and to anyone else I'd look normal, but inside, I felt like I was trudging along with a force pushing me backward. Also, I noticed my concentration level beginning to slip. At work, I would have to double-check things that I otherwise did pretty routinely. I had the labwork done at that point and my TSH had shot above 50. So, just be prepared for changes ahead.

As far as the actual RAI, I wish I had known some things going in. First, if you are accustomed to swallowing a pill by first placing it on your tongue with your fingers, then drinking the water, prepare yourself that you may not be able to do that. They told me not to touch the pill itself, so I had to toss it back in my mouth from the little cup they provided, which was not easy for me to do without feeling like I would choke on it. Also, I got two pretty rotten side effects, which they tell me are rare, but lucky me, I got both. So, just in case, I'll give you the heads up. I was terribly nauseous in the first few days after taking the RAI pill. What makes it worse is that you are supposed to be drinking tons of water to flush it out of your system, but with nausea, you really don't feel like drinking. I would suggest asking your doctor for an anti-nausea prescription, just in case . If this isn't possible, make your own preparations. I actually took migraine headache pills because they help my nausea, even if I don't have a headache. You can get Excedrin Migraine, Target brand, or whatever you choose. Also, Dentyne Ice Peppermint gum, or peppermints, leftover candy canes, could help. Though it may sound silly, look up pregnancy morning sickness online and get some anti-nausea ideas there. If my memory serves, I believe Ginger is one of the items that helps with nausea. The other side effect I had was that I lost my taste buds for THREE weeks. That was weird, and crummy. I'm sure everyone is different, but the only food I could even remotely get some flavor from was canned spaghettios (like the kids eat) - the Franco American brand, and those cinnamon rolls that come about 6 to a package and are covered with white icing. Perhaps Dolly Madison brand, I'm not sure. I have never been a person who is very into food as I'm a picky eater, but even I struggled with losing my taste buds because something with as strong a flavor as tomato soup, would just taste like nothing, and almost felt like it was cold on my tongue (even though cooked), almost as if the RAI pill had burned a layer right off my tongue or something. I'm sure that is not the literal, medical event that took place, but that's the only way I know how to desribe it.

Aside from those physical changes, I approached the whole RAI process VERY cautiously because I had a 6 year old and a 1 year old at the time. I was not taking ANY Chances coming into contact with them. I wore clothes I could throw away, and ate with a limited number of the same plastic utensils, and basically didn't let anything I touched cross paths with what my family touched. In other words, I wasn't putting my clothes into the same washer as theirs, use the same dishwasher, etc. But again, I was approaching it with as healthy a sense of paranoia as you can. Mostly due to my baby, who would need to be held, etc. I did not come near her until they "scanned" me as having ZERO radiation left in my body. Technically, they tell you you can sit next to your family members again at around the 3 day mark, but I spent the entire 8 days away from them until I had nothing left in me that could be hazardous even a tiny bit. I know this is just my personal feeling, and not what doctors advise, but it is what made me feel most comfortable, so I'd say to you, just do whatever your own comfort level allows. If you want to be extreme, don't let anyone tell you not to be, but if you are much more care-free, then just go with that and help yourself have as pleasant an experience with this as you can. Obviously, none of this is pleasant, but make it easy on yourself wherever you can.

I hope the RAI takes care of it for you and you are Cancer free from here on out.

Best wishes

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Thank you so much for taking the time to write all that you did. Thats what these boards are wonderful for. I am starved to hear other peoples experiences. Well, I am scheduled for the RAI next monday. I was told that they would do it if my TSH is over 30, so hopefully, I will not feel as you did...........but I have already had some similar feelings, like moving in slow motion.
I have older kids, so I think it will be easier in the house too. Most of the day they are out at school etc, so I don't need to stay in one place. I was told that they give anti nausea meds preventively (as you suggested).
Did you such on candies? I have read that some people recommend that.
I have a positive attitute, my endocrinologist said something like , today Thyroid cancer is treated more like a chronic disease than a cancer...........sort of liked that.
Again
Thanks

butterfly11
Posts: 6
Joined: Jan 2010

I wish you the best of luck will you please let me know how it is I to soon will need RAI after my second surgery. I will Pray for you

Redneckimber's picture
Redneckimber
Posts: 23
Joined: Dec 2009

Hi Sandy,

I wanted to share with you my experience with the RAI as well. My reaction was similar to others listed here. I was given 3 pills, which totalled 150 mci's. They came out of what looked like a space ship! lol.. They handed them to me in a cup, you cannot touch them. Soon as you swallow them, they will make you stand up and they will measure your radiation levels with a Geiger counter. It's crazy!! Within a few hours I was very sick! I became extremely ill over the next 8days! After the initial 3 days of isolation (I gave myself extra days paranoid I would damage my husband) It was impossible to drink lots of fluids with all of the nausea. I was taking nausea medications around the clock and they did not help me, when I was not vomiting, I had severe nausea and awful stomachaches and pains. I went from the bed to the bathroom and that was about it for 8 days! I could not even have anything cooked in my home, the smells of everything made me very sick. No food smells, no perfumes, not even soap. It messed up my senses pretty bad. It all subsided except I still cannot taste everything yet. That was 19 days ago! Almost 3 weeks later and I still have a nasty metallic like taste in my mouth and my stomach just recently started acting normal again. The best tasting things are things with lemon/ lime flavor in them. 7Up was actually the only drink I could handle during those days. My husband actually called the dr because I was so sick, and the only thing he said is that it had to run it's coarse and to keep taking the nausea meds'. Good luck and I hope these things do not happen to you, but you do have to remain isolated and be sure not to prepare anyone’s food other than your own and use all plastic or paper utensils and plates. Throw all of it away after each use and wash your clothes separately from your families. Limit your contact with things for the first few days. Sour candies were recommended to keep your taste buds working. Good luck. Everyone reacts differently.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

I will keep you all informed.........I'm on my way to buy 7 up and sour candies!!

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

an update:
my TSH did go up to about 75 and surprisingly I felt pretty good. I was working, swimming, doing most things.
The fateful day, thanks for the description of how to take the pill, pretty strange the whole thing. Took the pill and then they said "ok, you're in isolation, go home!" like do not pass GO do not get $100. Ever since I have pretty much been isolated in my bedroom. As far as how I feel...........just a tinge of nausea (had anti nausea pills), but the main thing is the fatigue. I suppose that as my TSH was rising, I was out of the house and on the go and then boom, I crashed!
Good news is that today I started the Eltroxin, 50mcg which I'm suppossed to increase until 150 until I see my endo, so I'm hoping to begin getting some strength.

sandy

lesley1
Posts: 3
Joined: Aug 2013

Hi, I wanted to say first off it has been encouraging reading your post. Some are very discouraging and I try to avoid that. While reading the post on your link one thing keeps popping up.  the LID.  I specifically asked my dr. about this, he shook his head and said no, I don't need to do this....but everything i have read says I do. I had a total thyroidectomy.  no nodules removed. one tumor that was malignant that they knew about and one of my small 7mm ones that was hot on the scan showed malignant.  I will be having an RAI on the 30th. I haven't had any thyroid replacement meds whatsoever since surgery not was I on any before surgery. So I am thinking this is why he said no to the LID? that my body would be starving for it (30th will be my 30 days post op)  Also, he told me to not be around my 3 1/2 year old for 2 weeks ( will be getting 100 millicurries) and this FREAKEd me out considering he has only spent one night away from me and that was for the first time 3 months ago.  I went over and spoke to the nuclear med tech and she said no. That I needed to stay away from him from the friday of my treatment to that tues. night and then have no physical contact with him once i got home (i will be staying with my dad) and how i needed to use trash cans  with lids on them to dispose of all of my plates utensils whatsoever and clothes.  to store them their for 2 weeks before disposal.....I am on information over load right now so any insight from anyone would be greatly appreciated. Keep in mind, information overload!! So baby steps please, this is all very very new to me. Thanks again, Les

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Lesley,

You're running into a problem we've talked about before here, "Is what I'm being told to do correct?"  There is no good answer, you need to to be as safe as you feel comfortable being.

As for the LID, a few other posters have said their doctor recommended against, but almost everyone has said their doctor recommended for.  When I went through this two and a half years ago, I found a study on the internet that said there was no direct evidence that the LID helped the RAI therapy do its thing.  However, the same study recommended a 1 to 2 week LID and suggested further study was needed.  I followed a 2 week LID that was not as strict as some I've seen here, but still it was pretty complete.  I talked to my endocrinologist about the LID and he didn't seem all that concerned about how well I was following it.  I'm sure he was aware of the study and I guess he figured since I was asking him about it I would probably follow it as much as possible.  (I still have the instructions if you're interested in what I did.)

As for your confinement (for lack of a better word), this in particular is a matter of how safe you feel following any particular guideline.  If you think there is little risk, then you don't have to stay away that long.  If you want to be extra careful then follow your doctors suggestion or stay away even longer.  I didn't have the problem that you are since there are no children home anymore, but I did talk to my endocrinologist specifically about this.  I-131 has a half life of something like 8.5 days (if I remember correctly), which means half of whatever quantity is in your body will break down every 8 days.  It's not that bad because your body excretes 98% to 99% of the iodine you ingest in 24 to 48 hours (almost all in your urine, a very small percentage in your sweat and other excretions).  One of the things your nuclear medicine people will do is a post RAI scan to measure the percent uptake of I-131.  For me this was 1.3%, so 98.7% was gone after 2 days when they did the post RAI scan.  One of the things I did was drink a lot of water for the first few days (I'm not sure about how long, it was 2.5 years ago) after they gave me the RAI.  I guess this helped flush the excess I-131 out as quickly as possible.  To sum up, the most important period is the first two days when almost all of the I-131 you take is excreted.

Again, it's all about your comfort level.

Alan

PS I've never asked, but I think the problem with the I-131 treatment is less about the radiations you emit than the fact that you're excreting I-131.  I-131 in very large doses kills thyroid cells, in very small doses it can cause thyroid cells to become cancerous.  You could ask the nuclear medicine people this question, I would think that they would know.

lesley1
Posts: 3
Joined: Aug 2013

Thank you so much for your reply. It eases my mind a lot.  I have a tendency to over think things but that helped a lot.  

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Lesley, you're welcome,

To give you an idea of what I did, I was more concerned about the LID than my instructions asked me to be.  Some here have said that the LID was a big problem for them, but for me it wasn't.  I didn't follow any particular cook book (there is at least one that you can find on the internet) but I was very particular about the ingredients I used to cook with and the prepared foods I ate (almost no prepared foods as they almost all have salt in them, iodized salt.)  The biggest problem for me was a lack of grain fiber in my diet while I was on the LID.  I need around twice the normal dietary fiber as most people just to be close to regular.  When I was on the LID, my primary source of grain fiber, high fiber bread, wwas on the forbidden list (all bakery bread has some salt in it, iodized salt.)  Some people have posted here thar the LID was a big problem for them, but I was able to do it with minimal side effects.

My confinment after RAI was much less of a concern than it will be for you.  As I said before, their are no children at home anymore, so I didn't have to worry about that.  But, I was careful to stay away from children for much longer than the guidelines said.  I also stayed away from friends who had small children at home.  After two and a half years I can't remember exactly how long I did this, but I think it was about a month.  Other than that I didn't really vary my schedule all that much.  Hiked as much as I had before, read as much and wasted time on my PC just as much too :)

Alan

cshobie1
Posts: 6
Joined: Jan 2010

Hi Sandy
I'm getting ready to start my thyroid scan on Monday. I had a TT 10/97 & hi dose RAI 12/97 so was not too excited to get the news my thyroid tissue was back. Twelve years ago, when I was admitted for the final high dose, I was taken to my lead lined room. The med tech held out a little lead looking cup for me to drink out using tongs to increase his distance from me. Yeah, I thought, this stuff is safe to drink! A pill sounds much more appetizing. I am very glad the need to go off medication is history as I swore I would never go through it again. Will find out soon enough re repeat surgery & ablation. Never vomited, but I felt worse during the lead up to the ablation off my cytomel. My TSH was >150 when I was admitted. Lived on ativan during those weeks and was still working 40hr+ each week (I'm an RN, and had been in oncology for 10+yrs at the time) Took at least 6mos to get rid of the silver taste to everything.

I do worry about the fact that nowadays I will be sent home instead of admitted. I sent my kids to CA to be w/their dad back then. Now I have dogs, cat & birds plus a husband to worry about. I am wondering if since the prep isn't as bad as previously, if that's why you were so sick with the RAI? Really not looking forward to any of this...thought I was done.

Carol

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hope it will be easier this time. Today was my first day "out" and boy was I happy. So far, so good, I haven't had any major side effects. I am now on 150mcg of eltroxin and hoping that it will quickly get into my system.

sandy

kb55
Posts: 7
Joined: Feb 2010

Hello Sandy. I am on day 14 of being off my synthroid, in prep for upcoming RAI treatment. I've been reading your posts and see that you did't seem to have experienced any major problems with the RAI. Just wanted to check to see how you have done post RAI & how you are doing now. I am scheduled for labs on the 22nd & if my TSH levels have reached 30, we plan to proceed with RAI on the 25th or 26th. Would love some feedback from you on how you are doing now.
Thanks

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Today I am exactly 5 weeks post RAI and feeling good. I am taking 150 mcg of eltroxin.....and have not experienced any major side effects. After about a week, post RAI, I felt like I had an after taste in my mouth, but that didn't last.
As I've written in other posts, i do alot of sports, and for me thats the best indicator of how I'm doing. I am pretty much back to what I was doing pre TT, swimming, running, biking. I won't say that it feels exactly the same, but pretty close. This saturday I am running a 10K!
I think the hardest part is the Pre- RAI, I felt like a junky when I started the eltroxin! I am tired at night, but I'm back at work and doing everything!

Hope it goes easily for you, drink alot, suck on candies, read alot of good books and the week will be over before you know it.
Let me know how it goes.

Sandy
p.s I haven't been back to my endo yet, I will be seeing her in March.

kb55
Posts: 7
Joined: Feb 2010

I'm new at this & scrolled down as you suggested to read postings. Thank you for your update & like you, I don't seem to be experiencing any major symptoms with my rising TSH levels. I expect that to change any day now, but like you I'm trying to remain active, eating healthy, but I am following the low iodine diet, per my endo's instructions. Sounds as though your nausea wasn't too terribly bad, so I'm hoping to experience the same. I've stocked up on sugarless sour candies & chewing gum. Will also stock up on 7-up, just in case. I'm expecting to have the RAI on outpatient basis either Wed. or Thurs. of next week (25th or 26th), but that of course will depend upon the results of my TSH levels on Monday. I'll keep you posted & thanks again for your insight.
Kathy

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hope it is not too difficult for you. Just use the time for relaxing, reading, etc. Let me know how it goes

Sandy

amie
Posts: 6
Joined: Feb 2010

hi kath
are you done with your RAI? me? im scheduled this month at 26, hope you update me wuth your experience... thank you

smileyscar
Posts: 5
Joined: Mar 2011

I am going for my pre RAI shots tomorrow Monday, March 14, 2011, and the other shot on Tuesday. I will be taking the Iodine pill on Wednesday. I understand that I still need to continue on the LID. The info on the web are very contradicting. If anyone has a better more scientific website that really tells you the iodine content of food, it would really help me and others. Like everyone says, the doctors do not give you too much info. I was not even given a diet, I was told to look it up on Google. What kind of crap is that. We are already scared shitless, and we have to find it ourselves? We have to be our own advocates, unfortunately, because not even the doctors give a crap. It is just a job to them; and I am just one more person in their workday.
I will put a comment after my treatment for those who are as lost as I.

Thanks.
;)

sunnyaz
Posts: 582
Joined: Oct 2010

The best source for the LID diet is on the www.thyca.com website. It outlines the foods you need to avoid and the foods that are okay. It is in the cookbook that you can download in PDF format. This is what all of us Thyroid Cancer patients use as a reference. There are lots of posts on this forum relating to RAI treatment and the LID. You will mostly avoid Iodized salt, potato skins, strawberries, any type of pre-made foods, frozen or restaurant. I hope this helps. It has been my best friends for the last year and a half. Best of luck to you.
Sincerely,
Julie-SunnyAZ

smileyscar
Posts: 5
Joined: Mar 2011

Thanks Sunnyaz for your input on the diet. I do have the pdf and I found some good info on the Livestrong.org website too, but also some contradictions there. I guess it is all in the amount that you are supposed to use. I'll get better at it.

Anyway, to keep everyone up to date with the shot: today March 14, 2011, I had my first shot of Thyrogen and it went well. I had a slight headache about half an hour after the injection, and later I got a little weak. It kind of felt like a very mild feeling when you take Nyquil. After eating I got a little better, but still a bit tired.
Other than that, nothing else. I will get the second shot tomorrow, then wednesday, the iodine pill. Will keep posted.
Thanks everyone for listening. I hope at least it will help someone.

sunnyaz
Posts: 582
Joined: Oct 2010

You are welcome. The headache is normal. You can take Ibuprofen (as long as you aren't on blood thinners, Acetaminophen if you are)about a half hour before your next injection to combat this. Tired is normal too. Nothing you can do about that. It's only temporary. FYI, it's not just one pill. Depending on your dose, could be six or eight pills. I know they tell you to drink lots of water after your dose, just be careful not to go overboard and make yourself nauseated. About eight ounces every two hours is more than enough. Keep sucking on candies that make you salivate as long as you are awake. This will stimulate your salivary glands and reduce damage to them. Good luck and keep smiling! This will be over soon.
Julie-SunnyAZ

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi SandyKR,

I'm glad to hear your RAI went so well.

In one respect mine will be easier, I will not have to go off Levothyroxine as a preparation. Instead, on the third week of LID, I will be given two Thyrogen injections Monday & Tuesday morning. Tuesday afternoon they'll do a Stat serum hCG TSH blood test to make sure my TSH levels are high enough, then a 2 mCi 123-I dose in preparation for a body scan Wednesday which will be used to determine the 131-I dose. Thursday @ noon more blood for Serum Thyroglobulin levels. Then @ 1 pm the 131-I treatment followed by a physicians appointment and resumption of a normal diet. One week later, a post treatment body scan followed by another physicians appointment.

Please forgive me for going into detail for the RAI regimen, but it seems that most people here are having to go off their thyroid replacement hormone in preparation for RAI. I thought it would be a good idea to tell everyone exactly what I will be experiencing. Unfortunately I don't know the amount of Thyrogen in the injections.

I will check back in to let everyone know what side effects I will have, if any. I've read that nausea is not that common but salivary gland swelling is.

Baldy

nasher
Posts: 507
Joined: Apr 2010

for my 1 year out scan I will be getting the thyrogen injections as well

Remember stay on the LID untill the doc tells you that you can go back to normal diet.

I dread my next run through on the LID but at least i will get the shots this time

thanks for the info and keep us informed on any problems with the shots

Craig

smileyscar
Posts: 5
Joined: Mar 2011

Hi to anyone listening:

I am already back at home from RAI. It went well. I did not get sick. The nuclear medicine doc told me he had not heard of anyone getting sick from it, so that made me feel better before I took it and it calmed me down. All I did was watch TV and drink water; a very boring vacation. For anyone curious like me: the room had plastic on floor where you would walk all the way to the bathroom and anything you would touch. They put plenty of water, ice and juices. I would have to throw away my food tray a red bin. They had another red bin for hospital garbage like gloves, thermometer plastic covers, etc., and two white bins for linens. The nurses would only come in when bringing you the meals, one breakfast, one lunch, one dinner. I recommend to keep a fruit or something from that meal for later as a snack. I know in my hospital I would not get any more food; only 3 meals. The only discomfort was the Intravenous thingy they put on my hand which was uncomfortable, but other than that it I was fine.

Regarding the food: they had it labeled LOW IODINE, no salt, but I don't think the kitchen knew what low iodine diet was. I was served broccoli once. I was given white bread with margarine "Promise" brand which is made "mainly" from vegetable oil, but also contains milk and salt. So I could not eat it either. So be cautious and informed about what meals you can and should eat. Nurses don't know.
The nuclear people came yesterday before I was released and measured the levels with a geiger meter, (I think that's what the guy said) and told me I could not go home yet. (that was at 12 pm) but he said someone would come at 4 pm to measure me again. His assistant came in at about 5 pm and measured me again and it was a 4, which I believe was low, so they discharged me.

I do have some metal taste in mouth, but other than that, I am good. I will post more later on what to do once at home, from the info they gave me.

Thanks for listening and hope it helps someone.

Smileyscar

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

Glad you are doing well. I had the same issue with food while in the hospital. They thought low iodine meant low salt. I had to explain what it really was and they still didn't get it.
But I did get sick from the radiation so I didn't eat much (and not from drinking too much water, only had one bottle before I lost my stomach).
And I'm an extremely picky eater so I packed a lot of food and had the nurses place it in the fridge and they would bring me some when I asked.
The funniest thing from my hospital stay was the look on my sisters face when she came to pick me up and I asked her where my clothes where (since you can't take anything out of the room with you). She forgot to bring me clothes. Luckily the nurses saved her and gave me scrubs to wear home. Every time I think about that moment and the look on her face it makes me smile. We laugh at it now.
It may take a little while to get rid of the metal taste but it does go away. And you will soon enjoy the taste of real food again.
Keep us updated.

sunnyaz
Posts: 582
Joined: Oct 2010

I didn't know that some places were still doing hospital stays for RAI. I was sent directly home after taking both doses. I am glad you are doing well!
Julie-sunnyAZ

smileyscar
Posts: 5
Joined: Mar 2011

Thanks guys for the support even if it is a comment here. I have one more day of seclusion and then on Monday I go do a full body scan, which sounds very scary to me. But I must endure it as part of life. One funny thing is, I love metal music, and now I can say that I love metal so much, I can taste it. Hee hee.

Thanks for listening.

)

smileyscar
Posts: 5
Joined: Mar 2011

I know I said I was going to share info on what to do once back at home from RAI. I received info from the hospital and it is kind of same info you see on the internet during your own research, and some of my own comments.

It is said that the amount of radioiodine in your body during the treatment is small. Although there is no evidence that the radiation from this amount of radioiodine will cause any problems, you should still minimize exposure, no matter how small. My view is since we don’t know how we got this disease in the first place, we should follow rules, because it could have been from some careless person.

From my readings, It is said that exposure to others can cause their thyroid to pick up the radioiodine. That’s why stay away from children, pregnant women, and older folks that may be vulnerable, and even pets, especially cats. (Their thyroid can pick up the radiation)

It says that the radiation received is very small, similar to the radiation from medical and dental X-rays which are the most common and familiar sources of external radiation exposure. (but think about it, why do we have to put a lead vest on, or the tech walks out of the room when we have X-rays done?)

1-Distance--the greater the distance, the less radiation.
2-Time--radiation exposure to others depends on how long you remain close to them.
3-Hygiene--wash hands when using bathroom, blowing nose,scratching, etc.

I asked the nuclear tech about the sheets on my bed after the treatment, and he said it would be better if you use an old sheet, and then discard it after the treatment. Although it says to wash your clothes separately, I would guess you could wash the sheets also, several times, since the radioiodine disappears by itself in time. Its quantity is reduced by one half every 8 days.

Sorry for the long note, I had to cut it as short as I could. I hope it helps someone.

cfarris451
Posts: 1
Joined: Jun 2011

I AM GETTING READY TO START THE LOW IODINE DIET FOR 9 DAYS BEFORE RECEIVING RAI TREATMENT -150, HOWEVER THEY MEASURE RADIOACTIVE IODINE. (I'M ABOUT 140 LBS)/ AND HOSPITAL ISOLATION. I HAD SURGERY 4 WEEKS AGO REMOVING THYROID AND 28 LYMPH N0DES, 6 WITH CANCER. WAS TOLD I WOULD PROBABLY BE THERE 2 NIGHTS. I AM WORRIED ABOUT GETTING NAUSEOUS AND THROWING UP. MY THROAT STILL FEELS SWOLLEN, I FEEL LIKE I WOULD CHOKE. HOW MANY PEOPLE WENT THROUGH THAT? HOW SICK DO YOU FEEL? WILL MY THROAT SWELL EVEN MORE? I'M SO DREADING THIS. ALSO, IS THERE ANY BREAD THAT YOU CAN BUY TO EAT ON THIS DIET? I'M NOT MUCH OF A COOK ANYWAY. I LIVE ON PIZZA, CEREAL AND CHOCOLATE MILK! I HAVE READ THIS WHOLE BLOG AND APPRECIATE ALL OF THE INFO YA'LL HAVE PUT OUT THERE. I HAVE A GREAT DOCTOR, BUT THEY DON'T GET INTO THESE KINDS OF DETAILS.

nasher
Posts: 507
Joined: Apr 2010

www.thyca.org has the best list for the diet that i have found

didn’t have problem with my throat even though it did swell when they removed my thyroid the goiter was 7.1 cm so there was a lot of swell room before it would get tight.

From what you "live on" it may be a tough 9 days... as far as low iodine bread the only type I know of is some of the home bread makers can get a low iodine version. I don’t know of a store-bought one though.

I had 175mCi and I did not get sick but some people do.

My salivary glands did swell up though after RAI.

good luck
Craig

... hate forgeting to spellcheck...

sunnyaz
Posts: 582
Joined: Oct 2010

Regarding the bread. No, I have not found one on the market that doesn't have salt or iodine. You can buy a bread machine and it's much easier than baking. Just use non-iodized salt. Then you can buy all natural peanut butter without salt and make a peanut butter and jelly sandwich. I also like peanut butter with frozen banana slices as a treat. If you like bananas, you can freeze them and then put them into a food processor and it tastes like banana ice cream.

RAI did not make me nauseated. I know that some people focus so much on drinking water in the first couple of days that they can make themselves sick from that and then there is the mental aspect. If you believe you are going to throw up, you probably will, so don't think you will. Remember also that you can drink other things besides water. It's extremely RARE to get sick from the dose because there is nothing in it that causes nausea. My last dose was 178 mCi's. I felt fine after taking it, no side effects at all except that I had a long drive home and I had to pee really badly. I didn't have the option to stay in the hospital.

I have had three surgeries (Total Thyroidectomy and two neck dissections) and I still feel like I have a lump in my throat most days, but it does get better with time. I have gotten used to the sensation and now it's a normal for me. You shouldn't expect to have any more swelling with the dose of RAI, shouldn't have any effect.

No reason to dread this, it's mostly the fear of the unknown. You will find that it's not as bad as you think it will be. Nothing is ever as good or as bad as you think it is going to be. Think of your isolation as some "me" time. Read a good book, catch up on daytime TV and pamper yourself. Take naps! There are times now when I almost wish I could do another treatment just to take the time off and be left alone for seven days. I work in the Medical field and there are some days that are so stressful I would rather have surgery or treatment again. Stupid but, it seems to be the only way to get time off when people leave me the heck alone.

Suck on lots of candies (I like Jolly Ranchers and Lifesavers) that make you salivate to keep your salivary glands producing and flushing. The only side effect is sometimes you have a loss of taste for a while after the dose and some experience a metallic taste for awhile. Certain foods taste a bit strange for a couple of weeks as well. I had a McDonalds breakfast burrito on the way to my scan seven days after my dose and the sausage almost burned my tongue. My Nuclear Medicine Doctor prescribed Steroids to take after my treatments so that my salivary glands and taste buds would not be affected. It worked for me both times because I haven't had any lasting issues. This isn't a common practice but you might ask about it. You will want to get the prescription a couple days before the treatment so that it's with you when you need it.

Keep us posted and feel free to ask questions. We are here for help and support.

Blessings,
Julie-SunnyAZ

amorriso
Posts: 186
Joined: Oct 2010

Hi - I've had 2 rounds of RAI. I didnt feel sick at all after either one - just a bit tired. No additional throat swelling, though my glands were a bit tender. I had to stay in hospital for several nights both times - its the rules where I live. Boring! My sense of taste was affected for a few weeks - its pretty good now.

The diet isnt the easiest - I was fortunate that I like vegetables. I cut out breads as much as I could.I just did not use salt at all. Instead of my Rice Krispies I ate puffed wheat or oatmeal (with lots of sugar). I'm a big cheese eater and really missed that. But you'll manage. Definately check out the recipes on the website - I actually think there is one for pizza - homemade of course.

Do some reading about the RAI, and ask as many questions as you need to.

Good luck.

rmickrine
Posts: 1
Joined: Jun 2013

Just finished having my left thyroid removed and am set to see an endocrinologist in a few weeks for the next step. Even though this thread is old I've been reading the comments and its been quite helpful as its getting me prepared for the next step(s). 

jyinger
Posts: 10
Joined: Nov 2013

Like rmickrine, I am new to this.  And although the thread is old, I have already learned a lot by reading the comments.

 

I had my right thyroid removed; they discovered malignant cells.  Two weeks later the removed my left thyroid.  A few cancer spots, but none (thankfully) in the lymph nodes.

 

Now I am looking at RAI and the related DIT.  My questions are about the isloation required after RAI--can I be in the compnay of healthy adults, still staying, say, six feet away?

 

And the diet.  Bread specially baked with no salt is OK?  No yogurt??   Really??  Any other tips?

 

Jon

 

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Jon,

I don't remember anything about staying six feet away when I did it.  If I remember correctly, the big thing was not having a person being contaminated by your urine, sweat or saliva.  You don't want anyone ingesting minute quantites of I-131 (RAI) since in minute quantites it can cause thyroid cancer.

The thing with the LID is not staying away from salt, it's staying away from foods with iodine.  You want to starve your body of iodine before you take the RAI.  The theory being your body will be more likely to take up the RAI this way.  You can have as much uniodized salt as you want, grocery stores carry uniodized salt if you look for it.

For both of these questions, ask the nuclear medicine people who will administer your dose of RAI, they will be able to answer better than I can.  They should also give you a list of foods to avoid.  When I did it there were two lists, one list of things not to eat and one list of things to limit how much you eat.

Alan

jyinger
Posts: 10
Joined: Nov 2013

Thanks Alan

 

 

jyinger
Posts: 10
Joined: Nov 2013

Hi Alan.

In several of the blogs from post TT patients preparing for RAI, they talk about thyrogen.  Apparently getting thyrogen injections two days before the RAI is an alternative to the usual regimen which has us going completely off our thyroid meds (Sythroid and Cytomel) in the weeks before RAI.  Thus avoiding most of the miserable side effects of going hypothyroid.

This sounds to me like a much less miserable way to get the body readly for RAI.

Comments?

Jon

 

 

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Jon,

It's what I did, though I wasn't given a choice.  It wasn't a problem for me (even with my needle phobia - just two shots in the hip on consecutive days) and from what I've read on here, going hypothyroidal can be a big problem.  If you do have a choice, I would recommend the Thyrogen route.  I don't know, maybe some doctors think going hypothyroidal is more effective.  At the very least you can talk it over with your doctor.

Alan

jyinger
Posts: 10
Joined: Nov 2013

I did ask my endo (via messages on the kp.org website).  She seemed committed to hypohell.  So I sent one more message, making a very good case, I felt, for thyrogen.  One issue, incidentally, may be that thyrogen injections are VERY expensive and just having the patient wallow in agony for 3 weeks with their meds doesn't cost them anything.  Anyway, complete serendipity:  my endo decided to take some time off, and another DR reviewed my request and approved it.  Yea!!

I guess I'm still doing the LID, right?  And that begins Jan 1.  Then Feb 3 & 4 I get the injections, and Feb 5 the RAI.

Alan:  Thank you SO MUCH for responding to my posts and for your insight.

Jon

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Jon,

Good for you!

I would think you're still going through LID.  You should be getting instructions for it from either your endo or the nuclear medicine people ... I would say three weeks maybe ... before you're supposed to do the RAI.  If I remember correctly the LID is two weeks.  The thing is it varies, some doctors want two weeks some longer, some shorter.  The extent to which they want you to eliminate Iodine from your diet also varies.  There have been a few posters on this site whose doctors didn't want any LID.

When I did this, I went Googling and found a study which said that there was no direct evidence that the LID effected the efficacy of RAI treatment.  The study's conclusion was further study was needed and a two week LID should be followed.

My common sense says the LID should effect RAI, so I followed my LID as closely as possible.  I even stayed on it for two days after I took my RAI dose since those two days are when your body is taking up the RAI.  After two days, any Iodine you've ingested is almost completely expelled in your urine.  At best you're only going to absorb something like 2 percent of the dose, I think my percent uptake was 1.3 which the nuclear medicine people were happy with.

At the time my endo didn't really seem to care if I followed the LID or not.  I didn't ask, but I'm almost positive he was aware of the study I found, and he may have been thinking that since I was questioning him closely about it, I would follow the LID to the best of my ability.

Alan

jyinger
Posts: 10
Joined: Nov 2013

Thanks Alan.

I plan to do the LID for at least three weeks before the RAI.  I now check the ingredients on everything.  I already eat unslated nuts--almonds, pecans, Brazil nuts, walnuts, etc., and I love fresh fruits and vegetables.  And I have begun buying other LID items:   Alvardo St Bakery makes bread that has no salt, and none of the dough enhancers that are off limits. Thai Kitchen coconut milk seems ok, and I am now using no salt Fleischmann's margarine.  Iceberg lettuce is ok, but not leafy greens, right?  And 5 oz of chicken or lean red meat.  Oh---Cocoa powder with no additives, but no choloclate.

Hey, this sounds like a good diet anyway.

Jon

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Jon,

There are many different LIDs out there.  I followed the one I was given by the nuclear medicine people and it wasn't the most restrictive that I saw.  I typed it in on another thread, but can't remember which one so it'll probably be easier just to retype it here.

ELIMINATE

   Vitamins with Iodine

   Seafood

   Iodized salt

   Canned soups and sauces

   Chocolate

   Soy Sauce

   Processed meats {ie corned canned preserved in anyway}

   Sauerkraut

   Bread, pancake & muffin mixes

   Molasses

   Food that contains red dye

   Food that has iodate listed as an ingredient

LIMIT

   Milk

   Yogurt

   Ice Cream

   Non-dairy coffee creamer

   Eggnog

"Do your best, this is LOW iodine diet not a NO iodine diet."

Now that I look this list over again, I was stricter than this.  I cut out all prepared (frozen, canned, boxxed) foods except those that were labeled sodium free.  I also cut out all dairy, which was no big deal as I have very little dairy anyway.  I didn't avoid leafy greens.  I also saw one diet that said cut out all grains since depending upon where they were grown, they could also contain iodine, I didn't do that.  My biggest problem was finding fiber, I need alot of fiber just to remain even semi-regular and my usual source is store bought high fiber breads.  I didn't do that because they bake with salt, not much but some.  I pretty much cooked most things as I always did except using non-iodized salt.

Alan

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