Radioactive Therapy - Time Off?

 Hi, my name's Elizabeth, I'm new to the forum.  Nice to meet you all :)

 I'm 21 years old and just had a full thyroidectomy to take out a slow-growing tumor which ended up being cancer.  This fall I'll be having radioactive iodine treatment.

 I understand that I will be off of thyroid hormone meds for two full weeks before the treatment, and that afterward I might experience some pretty bad fatigue.  So now I'm not sure whether to go back to college this fall, or take a semester off.  I am wondering whether some of you have some input about that?  I know every person tolerates the treatment differently, but I need some kind of general idea of how long the fatigue might last - several weeks, days? 

Hi Elizabeth:

 My name is Jill and I turned 23 in April. I had a total thyroidectomy on 12/22/2006 due to Stage 1 Papillary cancer. I went in to my endo's office on the last Friday in January to take the RAI pill. I spent the weekend on the couch in my livingroom. I live with my BF and two cats. I did have flu-like symptoms on Saturday but felt well enough to go back to work on Monday.

I know everyone is different, but my endo also said my uptake was a lot higher than normal, which is good. 

 I am going back to my endo on Monday for my 6-mo checkup and am a bit nervous. Keep me posted about your progress and I will you on mine. 

Elizabeth

Your symptoms will depend on how high of a dose of RAI they will give you.  I was given a dose that required me to stay in the hospital for three days in isolation.  I was told that during the two weeks off the medications that I would feel kind of like I had the flu.  To my surprise it was much worse.  I suffered with insomnia (only slept 3 hours a day), severe leg pain, muscle weakness (could barely walk), swelling everywhere, and the list goes on.  I could not go anywhere because either my face was so strange looking from the swelling or I could not stand for more than 5 minutes.  When I called the doctor's office with all of these strange symptoms they said, "o yeah that is normal when you are hypothyroid".  My TSH level at that point was 127 when normal range is 1.0 to 5.4.

I talked with many people on this message board that experienced these same symptoms.  After RAI, it took about 2 weeks to recover.  The good news is that I am 9 weeks after RAI and I feel better than ever.

Hi, Elizabeth.

 I'm 35 and also had a partial, then total thyroidectomy (TT) followed by 100 mCi of I-131 RAI, about 5 weeks following the TT.  Other then the week off during surgery and taking the Friday off on the day of my RAI dose, I worked through it - however, I didn't work as many hours as I normally would (i.e. - normal for me is around 50 hrs week and I reduced hours to about 40 hrs week).  That being said, after working through it, I wish I had just taken some time off during and after the RAI.  I was very fatigued and brain fogged so it wasn't any fun working through that.  Your case may be different though.  For one thing, it sounds like you are going to take Cytomel up until 2 weeks before your RAI.  I think that should keep you from going too hypo.  I didn't take any replacement between the time of my surgery and the RAI so by the time I had RAI, I was really hypo.  I was able to take synthroid 1 week after the RAI, and doubled up my doses for the first 5 days, but it still took about a month before I started feeling better.  Someone else I know, who did take the Cytomel until 2 weeks prior to RAI, seemed to bounce back much more quickly than I.

I know you probably don't want to lose a semester, but perhaps, at a minimum, you can take a smaller courseload?

Good luck! 

hi i just had a total thyroidectomy and 2 lymph nodes removed on 8/23 and was put on cytomel.  i went off it today and i'm supposed to see the nuclear medicine dr. in 2 weeks (not sure if it'll be a consultation first or treatment right away).  i'm a full-time student and have the same concerns about the RAI.  from what i've heard everyone reacts differently but if we're on thyroid medicine for a few weeks before having to go off of it, it makes sense to me that it might not be that bad.  of course it depends on the dose you normally take i guess.  if it's pretty high it might be more shocking to your body to stop it altogether.  but talk to your teachers and people in your classes so they can help you during this time.  i'm sure they can send you notes by email. and even if you feel too bad to actually study while you're out, at least they'll know what's going on and can help you catch up when you get back on track.  maybe your college has a free tutoring service for students, or you can schedule help sessions during your teachers' office hours.  you're paying them a lot so they should be there to help you get through this.  it's stressful enough without having to worry about pushing back graduation another semester or more.  good luck!

Hello Elizabeth,

 I'm much older than you (56) but with the same diagnosis.  My TT was on Valentine's Day and the RAI was in May.  I did not have to go hypo before the RAI because my insurance  company ok'ed they thyrogen injections instead.  These are simply 2 days of a injections, exactly 24 hours apart, and then on the third day, you are given the RAI pill.  So simple, no awful things you have to go through because you can take your synthroid, or whatever you are on, straight thru the treatment!  However, I still did the low iodine diet also to ensure the pill would work.

The injections are very expensive ($1,500 for the two), but a lot of insurance companies are paying for it now.  Check it out!

I didn't miss any work until I had the RAI pill.  No need to.  I am in education, and it was safe to be around the kids again after only a week.

Good luck!

Chris