Re: Scheduling RAI

[Guest guest]

Ugh. Now I don't know what to do.

My endo told me the results of my FNA – pap thyca – on our second

appointment on 5/6. I met with her again on 5/27 to get some

questions answered, after I had absorbed the diagnosis and done some

research. I also had a surgery appointment set up by then, for 6/20,

and my surgeon had started me on 75 mcg Synthroid. My endo set up a

followup appointment for me on 9/2, after the surgery and RAI. I

asked her why she didn't want to see me earlier, and she indicated

that the surgeon and nuc med docs would manage everything, and then

she would step back in.

Immediately after my surgery, my surgeon put me on 100 mcg Synthroid,

which I am still on. I had read here about some people going off

meds immediately after surgery, in order to have the RAI done 6 weeks

post-op, but then others safely delayed RAI to accommodate

breastfeeding or attending a special event. So I figured I would get

2 weeks' post-op recovery without having to deal simultaneously with

beginning hypo symptoms.

I'm going today to see the nuc med doc my surgeon referred me to.

Unlike Alisa's experience, I do not yet have an RAI scheduled date,

and certainly no schedule for all of the other activities leading up

to RAI.

So I'm wondering:

Have others on this list been monitored through this phase by their

surgeon or nuc med doc, with no endo involvement? In hindsight, did

this work out OK?

Do you think I should find an endo who will be involved now, or wait

until this phase is completed and then see whether or not I can work

with my present endo going forward?

I'm interested to know your opinions.

Thanks!

in SF

> >

> > I am having the rest of my thyroid removed on 7/22 and know that

6-8 weeks later I will have to do RAI. But when (and how) is that

scheduled? My endo told me he didn't want to see me again until 6

weeks after my surgery. That doesn't make much sense to me.

>

> Hi, beth - you're right on top of things. It ABSOLUTELY doesn't

> make sense. I would be calling the endo now and talking to him

about

> this. Perhaps he is planning for you to deal directly with the nuc

> med docs to get the RAI done, but SOMEONE has to coordinate things

> medically.

>

> I had briefly met my endo just after having the FNA. The surgeon

put

> me on a small dose of T4 postop. Before my surgery, I set up an appt

> with the endo for about a little less than a week post-op (I could

> have made it sooner, in hindsight). At that time, he went over the

> pathology report, talked to me about the RAI and future monitoring,

> and answered questions. Then, his nurse sat down with me and she

> called the hospital to set up the entire RAI schedule with them

(they

> have a sheet with dates you fill in for every step..stopping T4,

> starting and stopping Cytomel, starting LID, blood tests, scan

dose,

> scan, treatment. Not a bad thing to make up on your own if you

don't

> get one). I actually got on the phone with them and made sure I

> understood the timing of things. I was completely turned over to the

> nuclear med dept at the hospital (making sure copies of everything

> went to my endo), until after my RAI. My endo called me just after

I

> got home from isolation and talked to me about starting meds, then

we

> met 6 weeks later after I had a blood test.

>

> I know that the endo coordinates things completely for some

> people..just depends on the doctors.

>