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RAI 131 Next week
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RAI 131 Next week

Hi.. I'm fairly new here.

Glad I've found a place where people have been going though similiar things..

I was diagnosed with papilary thyroid cancer back in June. July 22 had TT and RAI 131 is scheduled next week. The cancer was not encapsulated and had in fact spread to the thyroid tissue and to 2 of the 4 lymph nodes that were removed.  

I've remained on my thyroid meds (had hashimotos prior to this) in fact it's been increased 3 times already but my thyroid levels have continued to drop.  Endo suspects that it's from the extra calcium i've been taking because 2 parathyoids were removed during surgery.

I keep reading about several of the side effects and each story sounds worse than the previous one.  Is there anyone that had an easy time of it?? I'm really starting to feel stressed about it.
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393685_tn?1325870933
Hello.

I do believe some poeple may have been fine after their thyroid was taken out, but as you may guess, only people who develope complications or still have issues are people who seek forum information as many here do.

I was wondering, are you still on medication - even preparing for RAI? usually that is not done.

I never heard of a correlation between taking a couple of parathyroids and increasing thyroid medication. Most likely the hashimoto antibodies are still active within you and that is what's causing the increase of meds.

RAI can be balanced out as long as a few things are considered. Most importantly - make sure you flush with water after you have it for a few days - also keep your saliva glands wet with lemon drops.

I am sure you will be off meds - so watching your levels and listening to your body is the best thing to do. If you notice a dip and feel hypothyroidism setting in - call your doctor as soon as possible and get labs done
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Avatar_f_tn
Usually thyroid medications are stopped and a low iodine diet is followed before RAI as the iodine in the RAI will most certainly boost your levels up for a few weeks.

Flushing with plenty of water is the best thing along with sucking on fresh lemons if you cant handle the sour lemon drops.


You are over the worst...believe me but please get it confirmed by your Doc about the T4 med as this and RAI can make you very hyper.
I would double check on that one.

BTW...you dont glow in the dark lol.
You will finally be able to start getting your life back on track too.
Dont be surprised if you feel 'mentally tired'.
I felt this but think it was relief that it really was all over.

You have nothing to worry about in regards to RAI.....
The horror stories you read are just that....stories.

I had RAI and was fine.
Bored stiff from the isolation period but absolutely fine.


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Avatar_f_tn
I've actually been on my thyroid meds and will be receiving Thyrogen shots for 2 consecutive days immediately prior to RAI.. I'm told this is fairly new protocol.. I think the last couple of years. Thyrogen causes your body to produce TSH as if you were actually off meds for 6-8 weeks therefore avoiding having to go hypo.

The hospital where I'm having the RAI done requires one week on low iodine diet..I start that tomorrow.

I've heard about drinking lots of water (does it need to be distilled? and the lemon drops. Anything else I should know?
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1017213_tn?1301774873
Hello,
Yes, one other thing you should know...you will be starving!  LoL. During the week before and the week after RAI, I dreamed of pizza and chinese food.  The way RAI worked for me is this.  I drove for 2 hours to my endo {he doesn't live here}  was ushered into the room,  swallowed a pill about the size of a tylenol capsule, and was skee-daddled out of the room.  Then I drove back home.  4 hours for a 2 minute procedure, lol.  I then sat around for 3 days, read books, watched tv...got pretty darn bored.  Dreamed of more salty things.  That's it.
I did notice two things.  I had a couple of really hot hot flashes.  I think twice.  And then for the first time in Months, I actually felt cold, once or twice.  { Never cold cause I have Graves' }  But just because I had changes in my climate, doesn't mean that you will. Everyone is different.  It really went off without a hitch.  
I don't think it matters that the water is distilled, and I had no changes in my saliva.  The main thing is wash your hands a lot and always flush the toilet 2 or 3 times after using it.  
Oh and make sure you ask your doctor if you should keep taking your medicines regularly After RAI and how long it will be until your next check up.  
Stock up on books, magazines and carrots...it'll be a long 3 days.

Mellowscout...feel better soon.
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945934_tn?1289049624
Hi,
Ditto Mellowscout.  Swallowing the pill was no big deal except it was in a heavily leaded container.  No big deal huh?  The RAI was not bad, it was the LID and no medication for 24 days that was bad!  Lucky for you having the thyrogen shot.  I asked my endo about that and she said not for this initial RAI treatment.  She wanted to go the "Traditional" route.  I am still frustrated that there is no agreement on what is protocol for administering RAI.  Isn't there an endocrine society, thyroid society with recommendations for this kind of stuff?!  No meds is about the worst thing you can do to an individual!

Lemon drops were not appealing after awhile.  I think smilerdeb suggested to me lemon slices which was more appealing afterward.  Saliva was thick but I think more to do with no meds than rai.

Anyway, isolation is tough but not impossible.  I am still keeping my distance from my kids 7 and 10 even after 11 days.  I'm not comfortable getting too close for too long.  Hopefully one more week and all will be back to normal.
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393685_tn?1325870933
How nice for you to be offered Thyorgen. I know so many that still have to go through this period on their own and suffer needlessly.

I hope all turns out great and the keys to having RAI were all listed here above.
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Avatar_f_tn
Actually my Endo wanted to go the more conventional route.. stopping thy meds.  After my surgery when I went back to surgeon and he told me the final path results he said "no big deal.. you'll have thyrogen and then the RAI and isolation isnt so bad..".   When i told him my endo wanted to go conventional he said there is no right or wrong way. but if Sloan Kettering does it with thyrogen it's good enough for me." So I brought it up to my endo.. she did a lot of research with nearby hospitals and other endos that she knows. All agreed that the thyrogen approach would be fine so thats what we're going with.  I liked the fact that she really took the time to research it.
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945934_tn?1289049624
Good to know.  My endo said we can go Thyrogen on the next go round in 6 months.  There is no way I am going to miss work etc. and feel that way again!!  I am checking with insurance to be sure it is covered.  If not, I am going to fight to get it covered.  Totally ridiculous to go without meds.  I just had the Whole Body Scan today for the second time and hopefully all is clear.
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Avatar_f_tn
I found that lemon drops were no good for me because I already had a sore throat when I went for RAI.
So instead i sliced up lemons and sucked on them for 3 days.
I also brought 3 slabs (24 X 600ml bottles) of water and just drank until I was bloated and urinating on the hour every hour.
Also remember to wash down the toilet each time you use it. I kept a bucket of bvleach water in the toilet with a cloth and used that.
It was discarded each night down the toilet and refilled for the next day.

I too had a couple of hot flashes....basically one side of the neck was hot....I took paracetomol and used a wet towel to cool down the area of the neck. The 'hotness' went within an hour. This was felt the first night around 8pm....I had RAI at 11am that morning.
I had a couple of episodes of fast heartrate 2 days before going HYPO (5 weeks later) and I took a beta blocker for it as I had a history of thyroid storm prior to RAI.

Other than that.....sheer total boredom for 3 days and the massive urge that I needed a hug lol.

After the 3rd day ...I got my huge hug (quick one) and havent looked back.
That was June 2008.

You will do great! :)
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Avatar_f_tn
So.. RAI is behind me.  Had similar story with lemon slices instead of lemon drops. but that was at suggestion of nuclear med Dr.  Sorness below both ears in neck region.
I was required to be isolated for 5 days.. but it was nearly 3 weeks before I got my hug.. I think my family was really scared about this whole thing.  I wish I could have done it in hospital.  But.. worst is over now..

Whole body scan showed uptake only in area where thyroid was removed but said some activity in kidneys and intestines.  Follow up bloodwork has shown TSH now down to 2.9 .. I'm on 200 mcg of Levoxyl and the TG (not sure yet what that is so if anyone knows please elaborate) came back as "undetectable".. one month post RAI.

I'm still tired a lot but getting back to the job of living. Feels good!
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158939_tn?1274918797
Tg "undetectable" is *HEAVEN*!!!   Congratulations!    The Tg is short for thyroglobulin which is your cancer marker.  That is the level they will watch from now on to see if there is any recurrence.  They want to keep it below 1 but "undetectable" is wonderful!!

The uptake in kidneys and GI tract is normal - that's just the body flushing the radiation out.

Congratulations!


Utah
papillary carcinoma '03, 2nd surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma (including one with three recurrences/RAI)
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