HELP! PREPARING FOR SCAN AND RAI-feel awful

[skipandflip]

Hi,
Preparing for scan and RAI next week. No meds, this lousy diet.  I am severely depreseed, have constant ringing in my ears, can barely get up a flight of steps, out of breath, mind is foggy - only working couple of hours a day and not well.  Anyone experience the same at this point?  How long after scan/RAI can I stop diet and how long before getting on meds.  (Pap. Thy CA)?  I would appreciate any response, I feel like I'm going to lose it or collapse....Please respond..

Thank youRAI,preparation

[qcikid]

I had to stay on the RAI diet while I was in isolation (for two day) once released from the hospital I was able to eat anything I wanted and wasn't given any restriction on when I could drink but did have to wait two hours before I could eat after I swallowed that radioactively charged pill.  

Remember to drink lots and lots of water it will be key if you are admitted to lowering you radioactivity to an acceptable level so you be released.  

My Endo preferred inpatient RAI over outpatient due to the risks of radiation to others.  Ask questions of nuclear medicine when you go in for your initial pre RAI full body scan of what restrictions you need to take to limit radiation exposure to your children, pets and partner (if you have them).  If you are schedule like I was you will go in and swallow a low dosage (diagnostic) pill; return two days later for a full body scan; go in for RAI ablation the next week and have a follow-up full body scan the folowing day.  

GOOD LUCK

[MANmom]

No, effectively once you take the iodine, you are not allowed to eat for two hours, and nothing to drink for one hour.  the iodine will take up almost within a few hours, the rest you must expel.  After the hour, drink lots of water, then you can really eat what you want.  It is pretty easy...good luck!

[skipandflip]

Thank you all for the replies.  I don't feel so crazy now.  do I stay on the diet for a week after I get th RAI?

[MANmom]

Yep, been there too, but I went 7 weeks after the second surgery with no hormone...my TSH got up to 186!  I felt extremely tired, slept most of the time, my face/eyes were puffy, I snored something aweful, achy joints, muscles, ringing in the ears, weight gain, hoarseness...welcome to Hypo Hell!  It does get better, my doc let me take the synthroid one day after the RAI dose was given, I took it in the early morning and went back to bed, about 30 minutes later I suddenly I felt this adrenaline like rush all over my body, then it happened again about 5 minutes later...wow!  I felt better the next day, and slowly I started getting more and more energy.  Six weeks later another blood test, still low.  Dose was upped from .150 to .175, and I am coming up on another blood test in a week...I think I am still low, I tend to fall asleep in the afternoons without a few glasses of Iced tea.  We'll see, but it does get better!  I, too, had papillary cancer.  Be sure to follow all the guidelines, you will probably lose your sense of taste for about a month, but that, too, comes back.  Please if you have siblings, tell them to get tested...my sister has the same cancer with NO symptoms, she has also had a TT.  Two brothers and father have Hashi's, as do I and another sister is being tested for nodules...good luck!

[qcikid]

Been there done that.  TT on 7 August and no meds before RAI and it took me six weeks before my TSH levels were over 50 ~ they wanted those cells starved for iodine.  RAI of 100mci for Follicular THYCA on 09/14/09 and started on 150mg Synthroid and 25mg Cytomel three days later.  Noticed a large improvement on how I was feeling three days after I started taking the meds.  The joint pain and the feeling of my muscle's starving and pulling away from the bone vanished.  The fatigue let up some when I was on both Synthroid and Cytomel but since I stopped taking the Cytomel I get fatigued and feel as if my energy tank is running on fumes 6-10 hours after I take my meds in the morning.  Only working 4 hours a day and it's a struggle commuting the 3 hours roundtrip.  Am always glad to get home and rest.  Remember to DRINK DRINK DRINK tons of water after you swallow the RAI pill and suck on hard candies to keep you saliva up and take a lot of showers.  Hopefully you will be do your RAI inpatient since there are risks to you loved ones and pets if you are sent directly home.  Stay focused on the positive that everyday you'll start feeling a little bit better once the RAI is out of the way ~ I know its hard to do but remember things could have been worse.  Enjoy all those fresh veggies and fruits while you're on the low-to-no iodine diet ~ it will help you not gaining tons of weight while you wait.  I found that while my TSH levels were rising I felt the best if I stayed well hydrated so I drank probably a gallon or two of ice cold water everyday.  It didn't hurt swallowing and actually helped with some of the aches and pains.  From what I've heard and experienced it isn't unusual to feel as if you are standing in a mud pit and struggling to move thru it.  I too had trouble walking up stairs without getting winded that has disappeared by the general fatigue hasn't although it is great in the morning, I still peter out in the afternoons.  Right now I take my meds at 0530 to 0630 and get extremely tired between 1200 and 1500 depending on what am doing.  And if they didn't let you know your body may have trouble metabolizing any other meds you take.  I hurt so bad I took a tylenol arthritus one morning and ended up sleeping the day away when before my TT I could take two and still function.  Hope you breeze right thru this and recover quickly!!!!!!

[amela321]

Yes, I've been through all of that twice in the past year and a half.  In addition, I get migraines, lost about 1/2 of my hair and can't sleep properly.  I know it's horrible right now, but there is light at the end of the tunnel.  Once you get back on your meds, you will start feeling better and better and after about six weeks should be back to  normal.  I'm sorry you have to go through it, though.  I can certainly sympathize!

[skipandflip]

Thanks for the post,

My Endo preferred the natural hypo method.  I would really like to hear from someone who has gone through this for Thy CA treatment.  I know they are out there.  Someone please respond....  Thanks for your concern Stella..

[stella5349]

I myself - have not had to prepare like you for RAI - but many feel terrible as you say you are.

Have you read about Thyrogen? Most find when on this preparing for RAI - they don't suffer as you are.