zero hormone now 3 weeks ..RAI soon...they wanted me to wait 6 weeks with no hormone...I went ballistic

Went in to doctor on Friday...after crying and explaining if I didn't get RAI asap I would just forego RAI because there are no words that could ever describe being at zero hormone for two weeks...they finally scheduled me for Tuesday...but here is the most unbelievable part...when I first arrived I walked in on the verge of tears..they announced that they wanted me to wait a full 6 weeks after my TT...I went into hysterics...I couldnt Imagine 6 more daya much less three more now I get RAI ..on Tuesday it's Sunday night and I am counting the days...I begged like a crack addict to please give me the hormone prescription in my hand so that I can start taking it the minute they say I can...nope...they said see you after isolation!!! Three days of isolation...again this is like the twilight zone. I'm in the USA !!! How is UK handling this???? I can't function...can't drive. Have to sleep ..most all the time...panic... depression.. feel like I'm in quick sand. O well Jesus take the wheel...I'm calling in the morning to see if they will give me a prescription on Friday!!! This is the strangest thing I have ever lived through. May God help us all cancer Survivors. Please pray for me. I sometimes scream out to God not knowing how I will get through the next week. I wish no one ever had to live through such a barbaric situation..

11 Replies

Although ive not had RAI myself ive often nursed people receiving it. Here in the UK patients can wait up to 8 weeks after TT before RAI is given.

Joyce59, the OP has been given no replacement hormone during this time! Which seems crazy to me having been through this treatment.

@joyce59 I have had zero hormones for over three levels almost 100


I was prescribed Liothyronine (T3) post TT which had to be stopped 14 days prior to RAI. Levothyroxine was started on the 4th day post RAI when radiation level had dropped enough for me to leave isolation. 5 months later I had a lower dose RAI for a whole body scan and Levothyroxine was stopped 4 weeks prior to RAI. T3 was prescribed for 2 of those weeks. The reasoning is that TSH needs to be >30 to enable RAI to be taken up.

@clutter yes thank u for info...I was called this morning RAI in 930 am..

ItsJake, I managed it by spending the time in bed with plenty of DVDs. My experience is that the more you rest, the less anxiety and other distressing feelings you get. I got plenty of sleep, didn't try to accomplish anything. The hardest thing was meals, and I stocked the fridge with microwave meals and bagged salad, ate a lot of cereal. I got a couple of large sportsbottles to keep by my bed - much better than using a kids sippy cup ;)

@silveravacodo yes I have been living in the bed...for three weeks go the call this morning RAI tomorrow

Good luck with the RAI, I hope you are lucky with the thyroxine and improve really quickly once you get hold of some!

I am sorry for such an ignorant question but why would you have RAI after a TT? I thought they gave RAI to hyper people to destroy the over active thyroid (or at least parts of it) and calm the whole hyperactivity down. I know that we have RAI after a TT to see if any thyroid cells are still present (because they will "light up" in the detector), but that is a diagnostic process, not a treatment. If RAI is given in order to kill any rogue thyroid cells I understand that but how is that going to make you feel better? I was given lots of T3 after my TT and remember feeling normal, if not great.

I wish I was given t3 they delayed my RAI another day...I had thyroid cancer and hashimotos..

Yes, me too.

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