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Fat Thigh-roid Woes: I Lit Up in Nuclear Medicine Today
Hey DT Peeps! What follows is a chronological path to RAI.
2008 – late 2009. I didn’t want to get it done, so I tried every other option possible and nothing worked for me. Allergy to meds, holistic medicine, and I couldn’t do surgery cause no doc would operate on me.
January 1st, 2010. I realize I have to do RAI. Sooo…I end up having to go to the county hospital for the fun since I have no health insurance (2010 was already looking up) and after a few weeks of dealing with back and forth, uptake scan, doctor visit, uptake scan, bullshit I was scheduled to get it done on January 15th. As it turns out, I had a job interview that morning – my first job interview in 1 YEAR. They say the universe doesn’t give you more than you can handle…whatever with that. I also decided to check myself into a hotel (sorry to the poor family that stayed in the room after me) just because I have animals and didn’t want them to be around me while I was glowing. Maybe those measures were a bit drastic, but f that noise, I wasn’t going to take any chances.
So, I race to the hospital after my interview and get ready to meet my boyfriend Anxiety at the door. He’s a stupid S.O.B. and taunts me the entire time from the waiting room. I really need to break up with him. I sat waiting for the doc, and took a picture of the sticker they had on a stamp.
Not really something I want to see before I down Hiroshima. I mean, let’s be real – that’s what will be going on in my body in a few minutes and how insensitive can these people get?? At the same time, it’s funny in a sick and twisted way. Is this sticker there for us or the people who work there? I still don’t get it.
They give me my mandatory pregnancy test, and I ask if anyone has actually been pregs and not known before this fun stuff. The nurse/executioner confides a teenager that was with her mom, turned out to be pregnant – despite the mother saying she didn’t need a pregnancy test. Who knew such drama can exist in the Nuclear Medicine wing??? I wanted to hear more of the story, but just then the executioner starts yelling for me to swallow the pill as she ran to the other side of the room. In a rush, I ran to the gray and sickly looking death and swallowed.
“This is the beginning of the end” I thought to myself.
“Go sit in the waiting room and see how you feel in the next 10 minutes, if you don’t feel nauseous then you can go.” The evil nurse said.
That 10 minutes was the longest of my life. I sat while the admin assistant guy flirted with me. He’d been flirting with me all week, maybe sick girls knock his socks off, I dunno. It was funny that he’s deciding NOW is a good time to have a chat with me, as my brain is imagining all scenarios. Of course, he was standing clear of me and saying “yeah girl, you’re radioactive the MINUTE you swallow that pill. So anyways…” and continuing on with his story. All I’m thinking about is how I want to give him and all my enemies a great, big, and wonderful hug. Such power at my disposal, and all I had planned was driving to my extended stay room and putting on a pair of sweats. STUPID.
After the 10 minutes was up, I walked slowly to my car and past unsuspecting victims. The long drive began, and I was expecting to feel sick I suppose but I didn’t yet.
Nightfall. I burned toast in my room while I was on my phone, and set the fire alarm off. The poor hotel worker had to come into my poisonous den and help me open the windows. That fucking room smelled like burnt toast the rest of the week (yes, I stayed there a week because it was a better rate than 3 days. Yay, vacation for me!)
My neck was…popping. It was also blazing hot. I felt strange. Not really sick, just like something disgusting was inside of my body. Maybe some of that was all in my head, and I was projecting it – but nah, I swallowed a radioactive pill and it was in my cells. Sure, my thyroid took most of the iodine up, but who knows how much has escaped? I sucked on lemon drops because the iodine can have a tendency to block your salivary glands, and some people end up with dry mouth the rest of their life. Dry mouth is one of my worst nightmares, so hell no, I popped lemon candy THE ENTIRE TIME. I drank a ton of water because the excess iodine leaves your body in urine and poop. Frankly, the pooping was strange and felt strange. It just was an all around gross experience. The worst part…with nothing to do all day and night except for watch tv, read, and write – I got addicted to Judge Judy. I was seriously involved with that show, and looked forward to 3pm everyday.
Didn’t leave the room for about four days. I had nowhere to go, and I was still supposed to stay away from people. My mom came to visit me, and she insisted on giving me a kiss (she’s reckless like that), then later to tell me her throat was hurting (in middle eastern culture it’s very common for a mother to find hidden sources of guilt and exploit them).
It’s been 8 months since the RAI, and I noticed that my energy levels were really down afterwards. I don’t care what doctors say about how safe it is, your body takes A HIT and needs many months to feel better. I’ve gained 30lbs, and I’m eating as healthy as possible so I don’t feel like shit. My goiter is gone, and it was so large that 15 millicures of iodine has barely made me hypothyroid. I think I might be slightly hypo, if I’m really hypo at all. The doctor who gave me the iodine made a prophecy: “Your uptake is so high and overactive, that I’m telling you – you will be back for another dose of RAI.”
“Hell no I won’t.”
“I’ve had enough experience with this to see that you will. I just wanted to let you know that. In 6 months your body will reset and you’ll become hyper again.” and she said it so matter-of-fact, without even a single doubt. It wasn’t a “expect a possibility of being here again…” it was a “you WILL come back for another dose.”
Okay. Well, I told my body during the self-imposed exile that I wasn’t having it. One dose was enough, and I needed to get on with my life. This Graves Disease has fucked me every which way possible, from losing my job, my hair, my sanity, my grasp on what is fucking REAL and I’m not going to fuck around anymore with this shit. TAKE THE RAI AND SUCK IT, GOITER.
So far, she’s been wrong. The endo who looked at how quickly my levels dropped 1 month after RAI says she’s wrong. He said since they dropped so low so fast means my goit really took to the iodine…kinda like they had an awkward love story. Iodine was the domineering lover, and my goiter was the gal in the corner who talked big game and gave it up in the end.
I’m going to celebrate on the 1 year anniversary of the iodine, and I will be healthy damnit. There is that thought in the back of my head that maybe one day, the remaining goiter will become overactive again…blah blah blah. I’m just going to live in the now and see what happens.
January 15th, 2011 is also the day a certain negative doctor with no bedside manner will be getting a card in the mail. It’s going to say, “Thank you for challenging my mind and body with your shitty energy. Had you not been such a bitch, I wouldn’t have had the strength to tell your ideas to shove it. That’s all. Please continue with stomping all over the hope patients bring to you, it seems to be what you do best in this world.”
Tags: Fat Thigh-Roid Woes: I lit Up in Nuclear Medicine Today Written by Nicole Wells, goiter, graves disease blog, Graves disease column, graves disease support, graves' disease, hyperthyroid, Nuclear Medicine, patient reactions to radioactive iodine treatment, Radioactive Iodine, Radioactive Iodine Treatment for patients with Graves Disease, RAI treatment for Graves disease
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17 Responses to “Fat Thigh-roid Woes: I Lit Up in Nuclear Medicine Today”
Leave a Reply to Donna
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Nicole,
I cannot thank you enough for sharing you journey and honest thoughts and experiences. I truly admire your bravery and I hope you do send that letter. Let us know if you get a response. It would be quite entertaining to see what would be said.
Jill
Hi Jill,
Thank you for the kind words : )
Once I write the letter, I’ll make a copy to show everyone at DT. I can’t wait!
xoxo,
Nicole
Awesome, So how are you feeling now?
I feel like I need to write a few letters when I get well too.
Way to go!
Hi Victoria,
I’m feeling fine, just trying to lose the weight post-RAI and doing my best to stay away from glutens and any allergy triggers.
I mean, I don’t smoke, I hardly drink, I can’t eat gluten…I need a new vice.
I think we should do a post of all the letters we’ve sent to docs or people who have misguided us while sick…it would be very cathartic.
xoxo,
Nicole
Nicole,
you are so beautiful and real and honest in this. Oh my– everyone who has been here knows this drill– but you TELL IS SO POWERFULLY AND BEAUTIFULLY. And that sticker is a hoot– and yet– OMG– I cannot fathom seeing it right before downing a dose of rad.
I’m proud of you. And you are RIGHT– when you don’t TRUST your doctor- MOVE THE FUCK ON and find one who is a good fit. That is what everyone needs to do. You are beautiful and powerful and an inspiration.
xoxo
Melissa
Dear Melissa,
Thank you so much! The fact of the matter is, I feel like I can be so honest here because we’re all each others cheerleaders.
It’s refreshing to be able to be honest without judgment – as opposed to every other area in my life where “the honest factor” has been scrutinized and ripped to shreds.
I see life in a different light now, not only because of my own experience with Graves, but also because of the amazing people who pour their heart and souls into sharing with this community. Thanks for being one of those peeps : )
xoxo,
Nicole
Nicole,
RAI is no fun!! Even ones underwear becomes radio-active waste.
I hope the, as you so aptly put it, Hiroshima rays did their job, and your Graves and goiter issues are on the way out. My fingers are crossed for you!
HD (who hates the word “uptake”)
Hey HD,
Thanks! I hope that this goiter madness is gone too, and I live each day like it is GONE.
Oh yeah, I wrapped all my clothes in plastic during the RAI experience and had to wash them separately. LAME.
I hate the word “doctor”…it implies someone who knows what they’re doing, and so far, I can’t seem to find anyone who embodies that definition.
xoxo,
Nicole
It seems as though everyone has a different experience with RAI. My last RAI dose, the tech told me, “yeah, after you leave here you can go to the grocery store, shopping, whatever. You won’t be radioactive for an hour. And really, as long as you keep a distance from everyone you’re okay to be in public.” WOW. Awesome. I completely ignored his advice and ISOLATED MYSELF.
Scary, isn’t it, to think you can be at the grocery store and the person in front of you in the check-out line is flippin’ radioactive.
Thanks for sharing your experience! And you send that letter to the radiologist! She could obviously use a reality check.
xoxo,
Joanna
Joanna,
It is my understanding that the dose of radioactive iodine (i131) differs depending what is being done. When I had my ablation (getting rid of possible cancer cells) the dose was much larger than when I had uptake scans (they also use ioding i131 isotopes for that). After the cancer treatment I was asked to be isolated for 4 days, after the uptake full body scans, I was only asked to stay away from people for only about an hour.
HD
Rules definitely differ from state to state. After my last ablation dose (100mCi), I was told I could be in public as long as I kept a distance of three feet. The rules were actually no different between the tracer dose and the ablation dose–both times I was told to keep a distance (3ft.) from people for three day. I was advised to keep a distance (again, 3ft.) from pregnant women and kids for five to seven days.
Hey Joanna,
Yeah, the people at the hospital told me I should be able to go home, as long as my pets and roommate stayed away from me.
When I tried to explain to the dimwits that although I can do many things, communicating with cats wasn’t at the top of the list. How was I supposed to keep them away, hmm??
Fuckers.
I also thought about the whole “who the fuck is walking around radioactive without me knowing??” concept with fear. Now I’m like, “fine. bring it.”
xoxo,
Nix
It is scary the different guidelines we get. I was told it was safe for my family to stay home providing they stayed 3 feet away, etc. How do you tell a 5 year old to stay away or a dog for that matter? When I told the surgeon that I would stay at a hotel he said it would make the New York Times! Everyone left and I stayed home alone which was best since I was so tired.
With the rate of thyroid disease and cancer increasing I wish there were universal guidelines, it would put my mind at ease. If anyone in my family ends up suffering with thyroid problems I will never forgive myself.
I’m sorry you had to put up with that arrogant doctor Nicole. I had a tech tell me I was good to go after my final body scan but would not tell me anything more. It was a Friday and I knew I was not going to wait all weekend for more info so I called doctors, nurses, receptionists in an uproar until someone gave me the results. Where’s the love?
Donna,
I think that the rules are also different from state to state. Some states require you to stay in an isolation ward at a hospital while undergoing ablation with RAI, other don’t.
I was quizzed by the hospital if we had young kids at home, and if we had a room with separate bathroom facilities I could use exclusively; – only then did they agree that I could stay at home (but isolated and at least 10 feet away from wife and animals).
And they indeed gave me a big plastic bag, with a huge “radiation hazard” sign on it, for stuff I might have contaminated.
HD
It seems that way HD, we tried to get an exception from our health insurance carrier because of Nicholas being so young but to no avail. The surgeon thought maybe we could and when we we turned down he then thought that if the treatment dose was high enough he could get approval. Guess 150 millicents was not enough. I think insurance companies would consider it in their best interest to keep us so they don’t end up with another thyroid disease patient on their plan. I’m in Pittsburgh, PA. Oddly enough UPMC is a health insurance company AND operates 90% of the hospitals. Separate entities but still very strange if you ask me.
No radiation bag here either, instructions were to wash everything in hot water and clean the bathroom each time.
Loved your new piece today. Brilliant. Thanks!
Dear Donna,
The blase attitude from hospital staff regarding RAI is really alarming. Also, please don’t blame yourself for ANYTHING if anyone in your family ever gets thyroid disease. My mom has it, and I realize that a part of my disease is genetic – even if I think the trigger was environmental.
I once read that up until the 70s, you had to be hospitalized (however, I don’t know at what dose if that even mattered at all) and they ran a wand over people before letting them go home. Finally, they relaxed their rules and thought it was safe as long as people stayed away. Good times.
A few months ago, I read a story about a man who set off radiation detectors at the airport – his doctor didn’t tell him that was a possibility, and that he needed a note if he was going to fly. They questioned him for hours about his “illegal” activities before finally letting him go. Nice huh?
xoxo,
Nicole
Nicole,
Thank you for sharing the RAI story. I hope and hope and hope again that you don’t go back to hyper. I am still having bits of hyper stuff here and there… seeing my endo this Wednesday. She said at the last visit she may need to adjust the Methimazol [my kids enjoy telling their friends that their mom is on meth].
Amanda