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168348 tn?1379357075

All of our RAI members .. let's gather here ...

on this post so we can keep track of us all .............those who have had it, those who are waiting for it, and those who desire info on it, gather here .....................it's a great way for us to help each other in a common spot!

C~
24 Responses
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523804 tn?1213142358
Hi again, one last thing there is a development of a rim of calcification (just saw it in report)
Does that change things as it was not there last time? Hate it when labs come in on friday night:/
Helpful - 0
523804 tn?1213142358
Hi Everyone:
Had RAI last year in May, , 30 mci and  just had an US scan done last week . It seems two nodules are slightly reduced and one has enlarged. Do I need to be concerned as labs are finally within normal range. I stopped going to endo cause I have not been impressed and went back to my pcp. Just nags at me as no biopsy has been done....any thoughts RAI friends?
Helpful - 0
Avatar universal
You will be fine.
My only regret was NOT having RAI sooner.
I had RAI June 2008...havent looked bac.
Been hard work getting levels stable, had a few hiccups but doing great now@.

Welcome to the world of RAI and the road to recovery!
(((Hugs ))))
Helpful - 0
Avatar universal
I'm scheduled for RAI p 6th October. I have grave disease with mild TED so I too hope I wont suffer from all those scary side effects I've read online.
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454046 tn?1244565593
Hi, I had RAI 100mci in july 08 have been told Tg too high so am going back in in Feb to have a higher dose (although not sure what dose yet)

I had to go hypo and i found that the worst part,as for the RAI not too bad, although i had a swollen neck and some nausea!

This time i'm having thyrogen yey!

x x x x



Helpful - 0
369861 tn?1306275686
18 mci for hot nodules...

I had RAI in December '07 to ablate my thyroid. I had the issue with taste and smell for awhile, but it all came back.  The issue that has lasted is the hoarseness in my voice.  I haven't had a normal voice since January '08.

The endo tests me about every three months and my meds are still being adjusted.

Take care
Terri

Hot Nodules 9/07
RAI 12/07
Helpful - 0
314557 tn?1232926664
Yep, weird club indeed. I did read about a link between polyps and thyroid cancer. Any of you had polyps removed? They talked about colon polyps specifically. I had colon and uterine polyps removed, as well as extra uterine tissue, so I am wondering if there is a link between all this excess tissue growing and thyroid cancer. I currently have a lump in my armpit that was confirmed to be breast tissue, and I was told that I could lactate from my armpit (circus here I come) but it is healthy breast tissue for the time being which will be monitored. And stuff grows pretty fast as well, doc first noticed my enlarged thyroid in 2006, I had 4 benign nodules however in 1 year, I had 13 nodules and 3 were cancerous. No prior thyroid problems, normal levels, no family history,  no exposure to radiation, exposure to the equivalent of agent orange though. As a kid I spent alot of time playing in the woods next to and on the railroad tracks, placing pennies so the trains would run them over and as one of many rotten little kids in my neighborhood, we pitched drops from the orchard at the trains as they went by. Anyway, in the 60's before anyone knew any better, the equivalent of agent orange was used to the keep the train tracks clear. I have lost touch with everyone I grew up with and both of my brothers are fine to date so not sure if there is any link but it does make you wonder. And pep88, the RAI made me pretty darn sick too, matter of fact I hope to never be sick like that again. Once the 5 days were up and I could resume contact with the human race my daughter looked at my eyes and told me they were bulging out into cone like shapes, they did go back to normal but my vision took a pretty good hit & that has never resolved. It took months before I stopped feeling nauseated, still do now from time to time. As I said before, this ain't for sissies!!! So glad to have this forum for support, you are truly a blessing all of you.
Helpful - 0
280485 tn?1249013844
Wow.  Weird club to be a member of...  I had 100 mCi last November.  Really fun ralphing your long-awaited Thanksgiving dinner...NOT!  So happy I'm done with that!  And LID!  Ding-**** the wicked RAI is dead!  No more for me (hopefully) EVER!  Thyrogobulin is zero and scan was clean!!!!  WOO HOO!  Can I work my way "out" of this club by being cancer free?  Or will I be a member forever?

Yeah, I know the answer to that one, but made you think....
Helpful - 0
405406 tn?1247428742
I had RAI for Graves in Feb. this year.  It cause my to lose some taste, and i could not tell if any food was hot with peppers.  I could eat stuff so hot it could take the skin off your mouth.  It took a few months for things to change.  But all is well now.  My TSH is down to 12 my last visit. Take 125 MCG daily. of Levothyrixub every day.  I feel fine now. No side effects. I never did have many proplems. Never had much of anything when dx with Graves. Just extreme anxiety. Don't have that anymore so am doing very well.
     Hope all turns out with the proceedures all of you have to go thru, You are in my prayers,
God bless
Karen
Helpful - 0
Avatar universal
I had RAI in June 2008 and 4 weeks ago labs are finally normal. On Thyroxin  starting at 50mcg (Doc didnt let me go no hyper than 5.0) and now on 75mcg and doing great. I too have noticed that my taste buds arent the same and for some reason full cream milk upsets my tummy and make me feel yukky all day. So if I visit someone and they dont have ligh milk, I drink black coffee. I find I am also not eating as much as I used too but havent lost any weight either (gained 16 kgs prior to RAI) even though I am exersising.
My biggest problem now is weight.
RAI knocked out my D/Calcium, B12 vitamins so I take them before bed as supplements.
Prior to RAI, I had 3 episodes of A-Fib within 2 weeks.
I have a heart murmur and 2 leaking valves.
No problems with them since RAI.
Helpful - 0
Avatar universal
I've posted this question on other thread, so you may have already seen it.  Everyone posting here seems very knowledgable and I would like some input on my situation.  Any info would be greatly appreciated.  

After a long and frustrating journey I was dx in Dec 06' w/ Graves, multi nodular non-toxic goiter.  

Had RAI in Jan. 07' numbers never dropped as was expected.  I continued to complain about sore throat-mainly rt side & my rt. ear hurts and I have problems swallowing.  Endo (tired of hearing me complain) ordered another ultrasound Dec 07' - multiple nodules still present.   2nd dose of  RAI (1/3 larger dose)  taken Feb.08. Numbers did not drop as fast as expected but were heading downward.  Yeah!

Started Synthroid 175mcg in June, dosage decreased to 150mcg.  Still experiencing sore throat- mainly rt side, dificulty swallowing & my rt ear continues to ache.  Several doctors have said my ear appears to be normal.  In early Sept. 08'  I became ill w/what I thought was a virus. Two days later I ended up in the ER dx'ed w/vertigo.  NEVER, EVER want to experience that again!

Everything keeps circling back to my throat and ear.  I told the Endo that there was definitely something going on.  Again, to appease me she performed another US.  Low and behold the 2 largest nodules are still on the right lobe of Thyroid and one of the nodules appears to have increased in size - though the RAI appears to have worked as expected on the left lobe.

I am/was scheduled for TT the 1st week of Dec.  I got a call from the ENT and after the Endo conferred w/him, he said he was planning on removing just the right lobe.

My question is - yes there is finally a question- why not remove the whole thyroid?  Isn't leaving the left lobe (whats left of it anyway) opening me up to potential problems down the line? If you are already in there why not just remove it?

This thyroid journey has affected my weight, heart, eyes etc.  I'm just wanting it to be over and total removal sounds pretty final to me.   Thanks in advance for anythoughts on the upcoming surgery.   P.    
Helpful - 0
Avatar universal
I am not sure how much of a dose I am getting. I had 3 nodules the largest at 4 cm and the other 2 very small. I had 3 out of 4 lypmph nodes also effected.
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612325 tn?1220793757
I had 100mci last Wednesday, 11/5/08.  Being confined to my room for three days was not nearly as fun as I thought it would be!  My follow up scan was yesterday, 11/13/08.  Apparently everything "is just like it should" according to the experts, lol.

I'm so glad someone mentioned taste!  I can still taste things but half the time it tastes metallic then I have a horrible after taste with almost everything I eat!!  I am half tempted to stay on my LID because now if I eat *anything* dairy I have the wooooorrrrssssst gastro issues (if you know what I mean!).  I don't even want to be in the same room as myself after having dairy! LOL
Helpful - 0
158939 tn?1274915197
Duh - brain fog, stress, and the flu have fried my last, working neuron:

papillary carcinoma '03 (right lobectomy), followup surgery '04, recurrence and 100mCi RAI '06, followup scans '07 and '08 4mCi each (and 15mCi PET scan '08)
Helpful - 0
158939 tn?1274915197
344mCi?  You over achiever, you!!!

My sister (yeah, the one with three recurrences/RAI) had the horrible salivary gland problems after her last dose of RAI (only 225mCi - what a wimp!).  They were ready to do surgery too.  Heavy duty antibiotics (rotated between a couple of different ones so she didn't build up an immunity to the antibiotic), lots of sour stuff (she got where she was sucking on lemons) and hot compresses saved her.  They were scheduling her for surgery.

As for everyone with the taste issues - it took almost a year for me to get my sense of taste back and that was just at 100mCi.  I even had taste problems after the 4mCi scan last month.  It does come back but it takes forever.

Helpful - 0
314557 tn?1232926664
Okay, so I guess maybe they really were trying to kill me. I had 344 mCi. 3 cancerous nodules and 1 lymph node involved. K2kids, I am having the salivary gland issue right now, it started about a month ago and I had RAI in December 2007. Are you on anything for the salivary gland infection? I am taking keflex and I started steroids but I felt like I was going to pass out so stopped them. I am due for scan in 4 weeks, my 1 year. Have you had the salivary problem for awhile or did it just start? Surgeon told me we can continue to treat but worst case they will have to be removed. RAI burns the glands and causes scar tissue to build up and block off the ducts, they then back up and make for very interesting facial features which are quite painful. Are you using hot compresses? They help me alot, I wrap them around my face and sleep with them and seem to get the nasty salty **** running which in turn makes all the lumps and bumps begin to disappear for while. I have bulging fluid pockets from my ear to the base of my neck with a pool of fluid laying on top of my shoulder. The compresses do help to relieve it though. Thyroid Cancer ain't for sissies as you all know too well. I wish you all the best, thanks guys. By the way, my taste buds are in good working order, took quite awhile, now if the glands would shape up things would be great!
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398079 tn?1235171132
I had RAI Jan of this year. I had oncologist appt in July which Tg showed close to nothing in bloodwork. I will have a scan in Jan 09. The only down fall is that I constantly have an infection in my salvary glands and surges of salt taste in my mouth. I hope this will go away?
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362809 tn?1233506554
I've had 3 doses of RAI.  First in Jan. 1986, second in October 1986.  I don't know the doses other than they were both at least 100mCi.  I had the third dose in August 2008 and the dose was 175mCi.  Now I'm in watch and wait mode to see if the third RAI kills the two suspicious lymph nodes and tissue in my thyroid bed found on a CT scan in late September.  I'm having Tg tested and a WBS in February 2009.  
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490443 tn?1236648256
I say you will be fine it took me a good six weeks to get my buds back after 150 Millicuries. Follow your nose. LOL..

Shannon
Hey let me know what the doc says... I am interested to see. My RAI was a big one. It is so uncertain to not know.. THE WHAT IF?? But again gotta hang int here for the kids it was hard to be away from mine fir so long after the RAI as well. I go back in DEC to see if we are ok. As long as it does not go up I thikn we will be I am at 1.4.

Rodeo Queen
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595495 tn?1225479893
RAI for Graves 6-5-08, hypo labs 9-30-08 - Levoxyl 88

WHEN THE (DELETED) IS MY TASTE GOING TO COME BACK nope...I'm not the least bit bitter about being able to smell all the food and and not taste it....common the yummie holiday food is coming up soon :(
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451191 tn?1264432890
I had 75mci in May of this year.  Papillary Cancer with Lymph Node involvement.  I was horribly sick about 3 hours after I was given my dose and then gradually improved every day there after.  The hardest part was being away from my daughter, but my post-treatment scan showed no distant spread.  I have a new scan coming up in January to check for reoccurence since I still have detectable Tg in my blood.  Although, my Tg level has stayed exactly the same since my TT, my doc wants to be extra sure.
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490443 tn?1236648256
GOod luck it was not bad. Do you know how many Millicurries you are getting? Prognosis is good still you hang in there. I go back in Dec for my six month check. I still have TG in my blood not sure if it is cancer it just thyroid tissue?? You are in my prayers. Get some candy to suck on and DRINK lots of water after.
Rodeo Queen
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Avatar universal
I am awaiting my RAI treatment in the 1'st of 2nd week of Dec. I have been off my thyroid medication. I am hoping that I dont have any side effects either.
I have the same thing Papillary Carcinom with spread in lymph nodes.


Sarah
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490443 tn?1236648256
I had a good dose or RAI on the 4th of July. 150 Millicuries. DX Paillary Carinoma with spread in lymph nodes. This year. Central neck Dissection as well as a select disection.. TG still in body waiting till Dec for 6 month check for reoccourence.  No Side effects for me. Maybe a lil on my taste buds but that was temporary.
:)
Rodeo Queen
Helpful - 0
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