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11852 tn?1216845043

Visiting Endo tomorrow to discuss RAI after TT...any ?'s I should ask?

I go for my first follow-up appt with my endo to discuss RAI
after I had my TT on 13 December for papillary cancer spot that was 8mm.  Any suggestions on specific questions I should ask?
10 Responses
158939 tn?1274918797
I'm glad you are talking about the RAI so soon after your TT.  (I'm so proud of you for going through with it too - 8mm papillary carcinoma . . . nice it's gone!!)  Did they take any lymph nodes?

Ask what your dosage will be for the RAI.
Ask if you will be hospitalized or not.
Ask for a copy of the diet and restrictions.
Ask how long you will need to be off your meds and how soon after you can start them again.
Ask how many courses of RAI you will probably have to go through.
Ask what your endo can do *if* you experience the depression.

Other than that, we're here for you to ask whatever you want (your endo probably hasn't been through it personally so may not know how the hot flashes feel or how cranky we can get).

Please fill us in on more of your surgery details when you can.  I realize it's been crazy having your TT right before the holidays and all but we'd like to know.

Welcome back!
11852 tn?1216845043
Well, I've started the journey to Hypohell today.  I went to the endo to discuss getting RAI.  She said normally with a tumor less than 1 cm they don't recommend RAI, but she recommended I get it done because the best test to see if thyroid cancer has returned is the thyroglobin (TG) test. This test only works if RAI has been done. Without RAI the TG test will come back positive. She is talking to the University of Virginia about getting my RAI done there sometime in the 4-5 weeks.  I was told to quit taking my T4 (levothyroxin) and was prescribed Cytomel today, which I'm suppose to take for one week, then the fun begins.  Depending and when my RAI is scheduled I was told to start the lovely and delicious LID 2 weeks prior. My doctor warned me it will be a rough period and if I feel I can't get my job done, she will recommend short term disability.  

I work as a contractor for the federal government,  although my company has been behind me 110%, my government boss is being a jerk and threatening to request my company replace me. By law if this happens my company has to find me a comparable job. So at least on top of everything else I don't have to worry about being unemployed.  But I may be moving back home for a new job and will be able to have my family close by.  My family has been amazing through all this thyroid stuff.  A sister-in-law and her grown daughter drove from Illinois to Virginia to be here for my biopsy.  For my surgery two for my sisters flew out from the Midwest to be with me.  My family is begging me to move home and several family members have offered to let me live with them until I sell my house.


I did find out some of the questions you suggested I asked. I won't be hospitalized but the location of my RAI is 90 miles away.  So I may get a hotel room for one night since I will have appointments two days in a row. I will get a very small dose of RAI the first day and get some type of scan. I forget what she called it. But I have to go back the next day for the "Killer" dose of RAI and get a whole body scan.  THEN...a week later I will go back for another whole body scan.   I should only have to go through one dose of RAI since my tumor was so small, but only time will tell on that. I got a copy of the LID diet and restrictions. I've been on Lexapro since Nov 2nd, and plan on continuing it for the forseable future. So, hopefully, that will help with depression. I just can't handle a lot of stress right now so my "happy" pills are VERY important to me right now!!!!!

Other than feeling a little tired still and having massive night sweats, I'm doing pretty good after my surgery.  My incision is pretty small and I've started putting Mederma on it.  My endo says that really works well.  Had surgery Dec 13th, got out on Dec 18th, and just returned to work yesterday for the first day. Tried to go in to work lst Friday, but caught a slight cold when I was home in Illinois for Christmas and it was still lingering last Friday. So I called in sick.  I still don't have the energy to work out at Curves but may try to start that this weekend.  I gained 5 lbs since my surgery, but most holidays I spend at home I gain more that that. So I'm not going to worry about my weight right now, just watch what I eat and SLOWLY get back to working out 5 days a week. Well got to go to bed...5 a.m comes aweful early when you've been sleeping in for most of the last 2 months!!  Wish everyone a Happy and Healthy New Year!!!!
158939 tn?1274918797
Don't even worry about working out until about a month after RAI.  Trust me, your energy level will be zero.  My cancer was small (4mm) but three years after TT it came back - hence the RAI.  I'm now a firm believer in RAI after any TT for thyroid cancer.  The fastest way to detect regrowth is to have the tissue eliminated then watch the levels from there.

Don't worry about the weight gain either - you'll lose it on the LID!  :-)

As for your boss . . . has he not heard of ADA?  Wow - what an enormous jerk!  You just got back after CANCER surgery!  You weren't out getting a pedicure.  Document EVERYTHING and talk to your HR department (if you have one) or your boss' boss.  A smart senior manager or HR professional will recognize they could lose a *huge* lawsuit for discrimination against someone undergoing medical treatment.  Let a jury hear this was over cancer and . . . let's just say smart managers will avoid that at all costs.

Keep close tabs on that depression, it will really sneak up on you!  I started crying at the drop of a hat or screaming and I didn't even recognize myself.  It was frightening and very, very dark.

Hang in there and don't let your boss - or any other jerk for that matter - get you down.  You're a fighter!
Avatar universal
Welcome to hypohell.aw man what a way to get to know some one huh.You are right not to give up your lexapro.I think the only thing keeping me going is my celexa/zyprexa. combo for my bi polar.The celexa is keeping from totally bottoming out in the hypohell I am in now.Utahmomma is right as usuall about the depression.New Year Day I retired to my room and I only came out to eat.I am at work now but that is giving me a reason to get up.I didnt know I had so much sheer willpower  till now.Be sure you come here lots I would not be able to get through this without everyone here.my family is supportive but nnnot like here  where so many of us have gone through what we have .
Love Venora
Avatar universal

Hi All: Well I'm glad you're all still here. Starting my
journey into Hypo...I have to tell you I'm terrified. Seems
so out of control. Hoping I will comeback from this pit that
I will be entering...I'll say my prayers for all of us that
will be stopping our Rx's and starting LIDS....

You want to know how to make GOD laugh?  
Tell HIM your plans.....

Linda b
177486 tn?1192161447
Hello, I am about to journey to the OR on Thursday.  What is LID?  How long after surgery do we normally go to the RAI?  I was told by my surgeon that I might not get RAI but my endo told me in the referal I would??  

Also any males out there with this depression stuff I have been reading about?  Wanting to know what to expect when its my turn to head down the hypo lane???   I know everyone experiences stuff differently what what should I (a 38 y/o male) probably experience???  Thanks!
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