Thyrogen question

[jillire1981]

I had my thyroid removed on Oct. 2 due to a nodule that was found to be papillary cancer.  I have been taking levothyroxine since then and saw my ENT and endocrinologist today to plan for radiation.  Rather than going hypothyroid, they want to use thyrogen.  Im a little confused though,the endocrinologist said that I will need to have two shots 24 hours apart then wait a full day and then go have the RAI.  It would pretty much be shots Monday and Tuesday, nothing Wednesday and then RAI on Thursday.  He gave me some stuff to read on thyrogen and it says the RAI will be given 24 hours after the 2nd thyrogen shot.  Did I misunderstand or does it depend on the doctor?  Also, what, if any, side effects did you suffer from the thyrogen?

[Liz94]

Yes, hypo is something you want to avoid. It's the most miserable state of existence on earth. If I had to do it again I honestly think I might have a nervous breakdown.

[jillire1981]

Thank you for your input.  Im not sure what my dosage of RAI will be but I was told I will very likely have to do it twice.  I have never been hypo and hope to avoid it if possible.  

[Liz94]

I've had the thyrogen injections twice now for my follow up scans after having my TT. The first round I went off meds, did the LID diet and then took the big dose of RAI followed by a scan.  But after that my doc felt like the Thyrogen would be okay to do.  When I did it I had a shot on monday, a shot on tuesday, RAI pill on Wednesday, nothing thursday and then bloodwork and scan on Friday.  I didn't suffer any side effects from the Thyrogen at all, I felt fine.  Beat the heck out of going off meds and into the worse state of hypo you can imagine.  I will tell you, it's the RAI that I had the effects from. That initial dose after the TT was pretty high, 150 mCi. The follow up doses were 4. After the big dose  I was nauseated for about a week, lost all taste for 2 weeks, had a metallic taste in my mouth for 2 weeks and basically felt like poo.  But it went away and I'm alive and cancer free. Small price to pay for life.  I didn't have any effects the 2nd and 3rd time with the smaller dose. Good luck!