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17 days Low Iodine, No Thyroid, No Meds RAI 131

Jan 30, 2010 - 5 comments

total thyroidectomy




RAI 131 radioactive iodine

~~~January 2010: You are now entering Hypo Hell, please keep your belt fastened & hands in at all times, and enjoy your ride.~~~~

January 23rd and 24th~ I ran out of my cytomel and took a half dose on the 23rd and the 24th, thinking it would keep my body pretty stable to start No meds, Low Iodine on the 25th to the 9th of Feb. Yeah, well I guess my doctors didn't think this would be a big deal.

Doctor Quote "Oh most people feel nothing, they don't even notice the first week. The second week some are fine, you might feel some fatigue, some muscle pain, a little depressed."

Uhm this now has turned into more than 2 weeks, and I am not through week one!! I think all doctors should have to feel this for two weeks, just so they don't make the mistake of setting unfair expectations.

So here we go the highlights of my days.

January 25~ I was just a bit winded and tired...I cleaned, cooked foods from the LID cookbook, ran around the entire day on the 23rd, trying to be ready for what is to come. I think I did too much. I have great friends, great family and amazing kids! This will be a snap!

January 26~ Short of breath a lot! Dizzy if I push it. The food I prepared, well, not bad, yet not good. I am a sauce person, A1 sauce, ketchup, BBQ and Red Wine Vinegar
Just kinda tired, and moody. I cannot deal with taking the stairs, so I have chosen to sleep on the couch. I wish we had a downstairs shower!!!! Oh well, I have vowed to take one every other day. I will be a lot of things, but not stinky! LOL!!

January 27~ Found a better way to sleep, and felt much better in the morning. Pillows, lots of pillows helped. I fell pretty ok today, nothing major. As long as I take it super easy the first four hours I am awake, then there are no heart palpitations, no shortness of breath. My lips felt a little numb and tingled, cannot have TUMS *cry*

OK well just keep chomping my fruits and veggies. Doctor told me Red Bull is fine. My need to run to the potty is still here, IBS is not my friend.

I also found that the new diet make me fart like a gorilla in the mist! Sweet Lord!! The children have been checking to see if it's "clear" before approaching me. One fart in the morning was over 5 seconds LONG! No hiding that one! Even with the bathroom door closed! My husband said, "Heyyyyy, that's not just sexy, that's classy annnnnd sexy!" My poor husband LOL!!

January 28~ Getting aches in my bones, not my muscles. I wonder if I'm missing a key food to make me hurt less. My husband made french bread, corn bread and tortillas. I love that man! Feeling pretty ok, finding I build stamina throughout the day. I thought being able to drink all the coke a cola I wanted would make up for the lack of cream filled coffee. Sadly this is not the case. Stupid hospital called and added another day. They said the room won't be ready and can I come the next day. /sigh great...thought this was 2 weeks?! Now it's 17 days and every damn day counts. My husband paid off the blood lab. $395 and $192 later, we are done with the blood lab bills from 2009 (not doctor/hospital bills.) New $1500 deductible due and the RAI pill I heard was any where from $500-$3000 depending on the dose. I better get super powers for that kinda cost!

January 29~ OK woke up feeling great! Had a yummy banana, and come sweet honey corn bread. Trying to not lose weight, I want to have my fat cells drop off after the RAI. I have this idea in my head that I will trap it in my fat, and then burn it off after I go back on my synthroid.

OK well, by dinner, I am in PAIN!! My elbow, has a pain the radiates from the joint to the bone into my wrist and out my fingers.

If I were a wizard (yes, okkkkkk... Sorceress since wizards are male *rolls eyes*).

Again, If I were some kind of caster magical person,  I could shoot you with lightening bolts! OK well not you, but the doctors who think "this" is no big deal, and the doctors who have not come up with a better way to do a mammogram, oh and the uhm, female check up too!

No more smashing Ta-Ta's!!!
No more horseshoe clamp thingy!!!
ZAP!! ZAP!! ZAP!!  
No more making people hypothyroid!!

I was in so much pain last night, I had to crawl up the stairs. My left leg just could not tolerate the trip normally. How humbling.

I also found out I had a bit of an ego, and yesterday, in so many ways, I was humbled. I also found out I had great friends. My top two My hubby and my buddy Chris. Even made a new one, his friend Megan.

You see, I am usually feisty, it has to be deep to get me to cry. I try to use humor a lot to get past things. Not because I am awesome, just because I hate that contorted cry face, the boogers and the sinus headache that follows. Today, someone hurt my feelings, my heart pounded like it was knocking on the inside of my chest, and before I could do anything, I cried like when my cat died when I was a kid. Greaaaaaaaaaaaaaaaat!!! /hide *embarrassed* And yes, there were witnesses to my blubbering.

I noticed even small acts of kindness make me get teary eyed. I am fast becoming a squishy, girly, girl. Next I will want a pony and turn everything pink! This is some kind of purgatory!!!

January 30~ Woke up and its not so much the muscle as it is the dang bone that feels bruised!!! Now if I touch the area that the pain radiates from. Bless you that go to work like this! My ears have been ringing like mad, more than before. Hate that! My leg felt so much better after resting it last night, but I did not fall asleep until 2am, because there was so much pain.

Today, I woke at 9am. As long as I keep off the leg and don't use my left arm, I am in no pain. Just freezing. I live in the desert. Its 40 at night, 70s in the day, still freezing!! My son gave me his comforter. Love my family! I am wearing sweat pants, t shirt, thick socks, hoodie sweat shirt (heavy one) two blankets. After taking a long hot shower, I see my hair has begun falling out again. /sigh oh well, my husband keeps assuring me it will come back once I am back on my meds. My lips are peeling again, and my feet are cracking again. /SIGH

I am filling my day watching Making Fiends with my boys and trash talking with them on some Facebook games!! Facebook is where I can see mt granddaughters smile, joke around with my daughter, my cool sweet family and friends. (Clicks *LIKE*)

10 days to go...I just keep telling myself things could be worse. One day at a time. I am blessed, one day at a time.

January 31~ Went to sleep and woke up with the same headache. Banger like I had a fun night out and I was 22 again. It's gone now, hot showers and hot compresses for the win! Taking is slow. I learned my lesson the other day not to push myself or ask too much of my body right now. So far, the aching in my legs comes and goes, when I feel it coming on, I rest, don't move and allow time for my muscles to mellow. This takes hours, but well worth it. After climbing the stairs to go to bed last night my right leg decided to protest until 1am. You get winded easily. Stuffy nose, snoring, night sweats, and puffy face are all part of the hypo package.  

My husband and the boys have been my salvation. They have been working together to keep the house tidy and me sitting down as much as possible. I am very lucky to have them and feel very blessed.
Good friends, and my amazing husband have been keeping me busy. Thanks to Hubby, Utahmomma, Chris and Tom! XOXO

I'm starting to think my husband is the one who deserve a cape. He is my hero!

Unless today brings something beyond what has already been, then I will keep on going, one day at a time. 9 more days to go.

PS. My doc approved Red Bull, so I am drinking one slowly a day for the B vitamins and today I will try sitting out in the sunshine for an hour a day hopefully to keep my D levels up.

February 1st~ I woke up and feel fine. If I get around too much, or get ahead of myself, I'm winded, and get dizzy. My butt feels like I have been horse back riding, but really it's just being hypo and riding the couch. Not as much fun as horse back riding! Overall feeling very positive! I am hoping the next eight days fly by with no additional symptoms. I think I have covered them all. I dunno if I mentioned cold, before, but yeah...burr!

February 2nd~ words of advice, stay off your feet. period. ow! many many blankets and yes, heating pads, warm bath, hot showers are your friend.

February 3rd~ still cannot keep food from going through me faster than a newborn baby...calling the doctor tomorrow for some kind of relief.

February 4th ~I talk to one too many nonsense hospital people on the phone who cannot get a message correct and blew up on them. finally yes I can have Imodium AD. phone lady kept asking them for Imodium aC what is that?! I want to pet her until her hair falls out!

February 5th ~good news is I had two pieces of steak and some oven baked fries and no complaints from my GI tract. oh how i love Imodium ad. bad news, my legs from the hips down are in total agony. it hurts to walk to the couch to the bathroom. i cannot stand longer than a few minutes. the bones hurt, if i attempt to use my muscles they charlie horse.

im dizzzy when i stand, weak like ive had the flu. without trying, dropped over 10 pounds. doctor called me back he was happy and pleased, said now i can have Tylenol, anti-diarrhea meds and tums since because at this point there is not much i can do to screw this up. he said if i am in this much discomfort and pain, then my TSH is well over 30 and i will pass my blood test monday, and now i just have to wait 5 more days.

when he said that i cried. in total it will be 18 days no thyroid,, no meds and this diet that angers my IBS. so so miserable, so i have been trying to be quite.

i feel like such a burden. missing my sons bday, my nephews bdays and a baby shower for this misery. guess im busy pouting today. i miss coffee, i miss real food, i miss walking without pain, most of all i miss "normal". i told him its hard to shower since its up stairs, he jokingly suggested i go European and not bath, found that not funny at all. i feel bad he is a sweet man, but clueless i think to how this really feels. i yelled at him. i feel a little better. :(

have to keep positive...five more days...pop the pill...collapse in a hospital bed covered in plastic, and work towards normal. nice hospital room, best view in the hospital on the 13th floor, it will be like a little hotel room. Half way through this process. many say its not the disease as much as the cure that often times will cause the most discomfort.

February 6th~ really not going to write much else, pretty pointless would only be more whining :P tips- keep things around to busy but not overwhelm your mind. i love video games and - i watch my shows, play simple games until i drool or fall asleep. if you are a softie like me, no dramas. :)

February 7th~ feeling much better than before. Imodium ad i think helped a lot, maybe the excessive loss of food and fluid caused extra cramping and pain? still sweaty at night, ringing in my ears, weak and dizzy if i walk more than to the bathroom and back. shortness of breath, again my husband said all my muscle are under performing, including my diaphragm to suck oxygen to the rest of me. attempting to make my bed with heavy comforters is a serious workout. Only 3 more days, kissing my boys and husband more. more hugs, more snuggles...stocking up as best i can :)

February 8th ~ just a tip: TSH blood test must be marked STAT or they will not give you same day results which most doctors require before you can have the pill or be admitted. (my hospital is 2 hours away- so i am having the blood test locally.)

plastic on the floor, sneeze and drool proof guard in place between me and my computer screen/hard drive. ordered 72 hospital quality towels for $35.00 and some other things to get us through the first 7 days out of the hospital. I also got some disposable bed sheets and pillow cases. Fluids cause transfer, so i am all about keeping my icky fluids from being places I cannot wash with lots of water. Health Mega Mall is pretty awesome on their prices.

I found a very informative blog, one woman's husband put it together- very informative

February 9th ~(last day before the big day, if anything super to know happens, i will fill you in.) Pre-certified 3 days for the hospital- doc says if my RAI levels fall fast it will only be two days. Then I am going home, plastic on the floor, a plastic sneeze barrier between me and my computer screen and hard drive. Air mattress, extra shower curtains for the shower so i can make a shower curtain dome around me, new toilet seat for after...isolation never sounded so good!

my boys are planning on sitting outside in the hall, grabbing a laptop and watching tv with me, keeping the doctor recommended min. safe distance of 6-7feet.

Maybe after all this I will make a list of what worked, helped, and came in super handy. I will also add some more recipes. Before I forget- organic balsamic vinegar- contains lead. Luckily we saw that before we used it to make a salad dressing. read your labels, on everything.

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1058524 tn?1285187240
by Justi_has_a_booboo, Feb 13, 2010
just a note: on the blood test Monday my TSH level was almost 90 which means 2 days later before getting my pill I was estimated to be 125+ and upon release yesterday 200+. My face looks like a swollen Persian cat who has not slept in weeks. Abide by what Professor Utah has said, this messes with your emotions, the High TSH and the diet and the whole experience, I find crying is a good way of coping. Doctors said in about 7 days I should start morphing back into the old me. for now, just hiding out and sleeping a lot. hands too swollen to feel awesome at typing. xoxo i just survived my personal version of fear factor

1118230 tn?1270064091
by LisafromFL, Feb 13, 2010
Awwwwww, geesh, so sorry to hear what you have been going through!!!
   After my TT on Jan. 6th, I found out I had a .5mm microcarcinoma in the right lobe.  The doc told me last week that they consider me "surgically cured" and I will not have to go through RAI.  After reading your account above, I would be scared to take it.  Please post more after you feel better.  You have a gift with words.  I love your daily accounts, they are so funny!  And inspirational at the same time.  LOL
   Sending you tons of well wishes - I hope you feel better soon!

--- Lisa

P.S. - I have been slammed at work, from the first day I went back; sorry I haven't answered your earlier message.  By the end of the day, all I want to do is sleep.  But I am not going to whine to you, as you are 100 times more tired than I am!  I'll try to write tomorrow.  I hope it's a good day for you!!!

1058524 tn?1285187240
by Justi_has_a_booboo, Feb 14, 2010
LISA!!! GOOD so glad they said no RAI for you and that your cancer is all gone. I told my husband I was hoping you were off living and laughing :) I also told him never will I do RAI again. Doctors can be such automated, hubris filled little apathetic dumb *****! And yeah, that's me being nice! I'm going for my full body scan in about 7 days. I should hear nothing but good news, if it's bad news, then I'm sure it will be the best worst news I can get LMAO! You know our motto, we get bad luck, but the best of the worst. If it's raining turds, and IF you have to have a S H I T sandwich, then come eat at my house, we get the best s H I T in town :P XOXO miss ya buddy and so glad you are doing well :)

Avatar universal
by sandramee60, Mar 11, 2010
My wonderful beautiful daughter has just had her thyroid out 2 weeks ago. She too will need the RAI treatment and I told her that she can stay with her dad and I since she has two beautiful babies at home who would be hanging around her neck if they knew she was in the house. Her husband will have his hands full with taking care of them!
Where does one begin to comprise all the things needed to care for someone who has had the RAI pill? Like. where do you get the computer guards, disposable sheets,do I need to line the bedroom she will be using with plastic on the floors and walls, if so what grade? Would painters plastic work or does it need to be heavier? What about the Air conditioning system intake vent?. Where, does one find the LID cookbook?
What happens if she needs my assistance? Do I have to wear special garments? Should she be the only one using that particular bathroom?What about my animals? What will happen if they sneak into her room? Can I start pre cooking meals for her and freeze them? I know I have tons of questions, but I would appreciate any help you can offer.
You are a real inspiration and a funny one at that. you should consider writing for a living!

1058524 tn?1285187240
by Justi_has_a_booboo, Mar 12, 2010
I am going to try to answer your questions as best I can. If you ever need me to I would be lad to call or email as well. I know this site has it's limits at times but overall it is a huge blessing to all of us who need it. XOXO

My suggestion is to do your research on RAI. One man bought a Geiger counter for $95.00 and was able to document from home each day his wife's amount of radiation output daily. I read another where a mother did the same for her daughter. In my opinion they both reported their levels higher than what doctors claim you will be, and what is "safe".  

My husband and I felt no amount was "safe". We are still using precautions and preferred to follow the rules on a Canadian site...and the advice of Momma Utah here.

I told my children to be conscious of the fact I am like the Sun. You have on no Sun block, so you do not want to be exposed to me for too long to protect yourself from my rays. They are 8 and 10 years old. My doctor told me to stay away, zero contact with them for the first 10 days after I had my dose. The strongest beam she will emit is from her thyroid bed area in her neck. Those first 10 days is not just your body fluids, you are beaming or glowing with radiation. After 10 days its more your body sweat and fluids. :)

Later before they released me from the hospital, I asked the nurse what if they were your children and grandchildren, what would you say is "safe". She said min 14 days zero contact with children, pets, babies and preggos. See she told me it takes 20-30 years for anything super "bad" to show IF something bad were to come of cancer...the person I exposed would most likely be very old or dead. Pets would not live that long. they would be in their prime reproductive years.

Where does one begin to comprise all the things needed to care for someone who has had the RAI pill?
It tears at the heart, trying to balance safety vs. nuturing.

Where do you get the computer guards?
My husband used plastic for winterizing door-walls and windows. The hospital room had heavy plastic with a type of nylon thread running crisscross through it. The hospital did not have any vents covered. We modeled my room after the hospital room I was in for three days. Heavy on plastic on everything that I could breath, cough, sit, lay, sneeze or spit on.Body fluids are the main ways of transfer or contamination after the first 3 days.

Disposable sheets?Do I need to line the bedroom she will be using with plastic on the floors and walls, if so what grade?
Would painters plastic work or does it need to be heavier?  What about the Air conditioning system intake vent?

I took some old twin sheets that I had from my children's beds. I did order disposable sheets to go over them each day and to line the chair I sat in or cover the area I sat on the floor for the first 7 days. (Even over the plastic on the floor.) Also I ordered disposable pillow case that was plastic and I put a standard case over my pillow and swapped it each day. I bought a case of disposable towels (hospital grade). All dirty linens and clothes for the first seven days I tossed out. Everyone said just pack it up for seven days until it was done being "hot" with radiation. Then for another seven days wash all clothes and linens separately, then rinse the washer two times before using it for my families clothes.  

I did not follow this since in the hospital I was scolded for having a plastic tray in my room and not a disposable one. The head nurse told me now the tray would have to be in a special isolation room for 6 months. In my mind that told me "safe" isn't as safe as they were telling me. I chose for the first seven days to sleep on an air mattress, in a plastic lined room, use my own bathroom, my own plastic lined shower (cuts down on scrubbing the walls after RAI) and use disposable as much as I could. I covered everything in plastic, tossed everything each morning and then let the garbage rest for seven days before tossing it into the garbage mans truck.

I wrote up each day in the hospital and the first week at home. The is day one of 3 days I wrote about the RAI and hypo -->

Where, does one find the LID cookbook? THYCA.ORG
Can I start pre cooking meals for her and freeze them? yes! I did :)

What happens if she needs my assistance? Do I have to wear special garments? Should she be the only one using that particular bathroom? What about my animals?  What will happen if they sneak into her room?

I had a list of medications I got in advance and put them in zip lock bags. I also had my husband get me some very heavy construction grade garage bags. I kept them as possible vomit bags and to toss everything daily. They will give her medication for nausea if needed. She won't need you much I promise :) My husband was worried too. I slept a lot and food was my favorite. Oh and she needs to have very super sour candy and suck...spit and repeat for as much as she can tolerate for the first 3-4 days to help protect her salivary glands.

Honestly it's more of a mental game and being hypothyroid that makes this tough. The pill was scary for me, but I only got a sore throat and a headache from it. She will want to drink lots and lots of water. I crank a gallon or more for the first 4 days, then at least a half gallon for the remaining 3 days of the first week. She shouldn't need you for much. My husband would come sit outside the room and talk to me. I was told by the head nurse at the hospital the if I felt dizzy not to get up, because if I fell no one would come in for me. I would say by the hospitals guidelines, you should try not to be around her at all the first 3 days, then limit it to one hour a days at no closer than 3 feet for 3 more days. That was from my printed hospital release directions.

Here are some links I found helpful:

Research doctors and their rating from real patients who have thyroid cancer or medical issues.

RAI from a doctors perspective. Also a blog about a husband getting his wife through the thyroidectomy and the RAI process. (He bought a Geiger counter to measure he radioactivity.)

Health supplies cheap:

Low Iodine diet is a pain in the rear! hated it!

Low Iodine foods- My husband is Mexican American and we love Mexican food and BBQ food on the are some recipes we used to get through the almost 3 weeks of nothing with iodine in it.

Remember to always use Kosher Salt with the symbol on it showing it has been certified Kosher.

Mrs. Dash- careful some have "chili powder and we are not certain if this contains sulfurs even though it says no salt.

Flour Tortillas

A Bunch of Nice 2009 Recipes for the Low Iodine Diet

French Bread- He only used the bread machine to mix the dough for 15 minutes, the rest was all by hand

Ciabatta Bread

Chunky Salsa-I add a pinch of sugar and juice a lime + Fresh Cilantro

Fajita Seasoning
No Chili powder since we cannot tell if it has iodine in it, it does list "salt"
Ingredients- play with it until you get it to a taste you like. Add a little water and a bit of the mix, then taste. Use as a dry rub on meat and save 1/2 for cooking the veggies in.

    * 1 tablespoon cornstarch
    * 1 teaspoon salt
    * 1 teaspoon paprika
    * 1 teaspoon sugar
    * 1/2 teaspoon onion powder
    * 1/4 teaspoon garlic powder
    * 1/4 teaspoon cayenne pepper
    * 1/4 teaspoon cumin

Use the Spaghetti Sauce recipe but omit the black pepper or reduce to 1/2 tsp. Their recipe is too much black pepper on cook book recipe.

The "Company Cake" is pretty good! I put honey on it to make it seem like a super treat. ( recipe in cookbook)

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