Radio Active Iodine Treatment - would you have it?

[kidsnchicks]

Would you have Radio Active Iodine Treatment if your Endro said that was the best option?  

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28%

 (7) 

Yes, I would have it.

16%

 (4) 

No, I would not have it.

40%

 (10) 

I have had RAI and am happy with the results.

16%

 (4) 

I have had RAI and wish I had not.

25 Members voted

[hope4thegoodstuff]

Actually I have had RAI.  But it's still early and I can't tell you if I am happy with the results or not.  Stay tuned.  

[ChitChatNine]

depends on the situation.  if i needed it for cancer the answer would be a definite yes

[kidsnchicks]

I tried to also list the options of but it wouldn't let me:

Undecided
Yes, if cancerous or life threatening

I also meant to include the request for why you chose the treatment or not & what lead you to that decision.

Thanks for the replies.

[Roxanne862]

I also have had RAI. I think if told all of the complications of RAI before treatment many would think twice.  I went in telling all the professionals my eyes were acting up. They insisted I had to rush to have RAI.. Knowing what I now know, that RAI causes patients symptoms of Graves Eye Disease to grow worse after RAI, I would have NEVER had it. I was already responding well to Methamzole and Beta Blockers.  The Profesionals told me if my eyes were going to buldge they would do so within 72 hours after taking RAI. So much for professionals. Two months later my eyes began to tear and itch. Then they became very sensitive to light, forcing me to wear dark sunglasses.Each and every morning I would awake to a new appearance. I might say, each new appearance was less attractive than the one prior.  Seaching the internet I found what I thought was my disorder, Graves Eye Disease. I phoned my Doctors office, only to be greeted by a nurse who informed me in a most nasty manner, that RAI DID not cause my eyes problems. But if I insisted, she could work me in the following day. Angry at her dismissive attitude towards me, I agreed, but canceled the following moring , electing to keep my appointment two weeks later. In the meantime my eye symptoms grew worse. Alls I wanted was for my Doctor to refer me to a Opthamologist.  To make a long story short, My upper eyelids retracted and I looked like I had huge water bags underneath both of my eyes. Needless to say, I was not going to make the cover of Vogue. lol...I went months weeks, not able to read of focus my eyes to read. I could not look up without severe pain. I know all about RAI, and boy do I regret it.  One thing I have learned about Graves Disease is you will need the patients of Job , love and support from family and friends, faith, and the realization that you hold the keys to your own recovery. I am on my way to recovery.

[sahiti]

I have RAI one  year back. As above all said  its depends on ones situation which is best. On my situation RAI  was the option.Till now i could not decide whether it was a best option or not. Beacuse when i was  little hyperthyroid then my OB/gyn said if it bothers more you can see ENDO as i was little Hyperrange. Then I was admitted in ER for pancreatitis then they said my levels of Hyperthyroid are went high  which needed immediate treatment. Then i started om Methimazole .After few months my LIVER levels came little bit up and my antibodies were also high. As iam already have pancreatitis they said sludge in gallbladder which would affect liver and now Methimazole liver levels up NOTGOOD .As we were on TTC for babies they said i should take immediate option. So we choose RAI thought after 6months to 1 year we can start TTC .But now on HYPO i feel more severs symptoms then hyper .But we choose mainly for  to get pregnancy on hypo as it is  better then controlling on hyper on pregnancy as they said):

[Totie]

I had the RAI, but it failed so had TT. (That was 15yrs ago.)

Currently dealing with Graves Eyes Disease. My opthomologist has referred me to a neuro opthomologist.  It is painful and frustrating....

[hope4thegoodstuff]

I had RAI due to cancerous thyroid.  It was removed, but they can't get every bit of tissue.  So try to kill the rest of the tissue off with RAI and there is less chance of reoccurance.  I will do whatever I have to do to stop it from coming back.  I don't want it in my body.  

[jasmine8]

I had RAI after have a thyroidectomy for cancer on both sides.  If I would only would have had cancer on one side my dr. said they would not have done anything, but because it was on both sides, he opted for the RAI.  This is my one year anniversary awaiting my scan for next week to see if I am still clear.  So, I guess I will let you know if it works!  The worst part was when my daughter & granddaughter had to leave the  house.  My husband wasn't so happy about sleeping on the couch either.

[utahmomma]

Like everyone says, it depends on your situation.  I had RAI for cancer recurrence and I'm glad I had it.  My youngest sister has had it three times for three cancer recurrences (last one with metastases to breast and liver) and it totally killed off all the cancer.

Have there been complications?  For me, yes.  But given the choice between a treatable cancer and letting it metastasize and kill me, there wasn't really a choice.  Would I do it again if the cancer returns (despite the scarred bile duct and other complications?), definitely "yes".

But that's for cancer - Graves or other conditions are very different.

[karenros]

I have had RAI for my cancer.. I dont mind taking the pill...but i hate the Low iodine diet... its like eating crappy food (My cats food smelled better than what i used to cook)... didnt like the sour candy part of it.. thanks to the RAI and now i hate sour candy...

[Smilerdeb]

I originally had RAI due to uncontrollable Atrial Fibrillations (Thyroid Storm) and found out a few days before RAI that I also had the whole of the thyroid cancerous which resulted in a TT when my levels were stable enough 3 months after RAI.
I battled for a year to get stable levels with anti-thyoid meds but couldnt.
RAI saved my life.
If it wasnt for RAI, I wouldnt be here.
Also my one year anniversary is coming up on the 27th of this month (june) since RAI.
My levels were well and truly stable within 6 months of RAI with only one hiccup instablility when I got the flu,.
my levels are stable once again and I am doing things in life that I havent been able to do for many years.
If I had to go through it again...I would.
I couldnt handle the sour candy so opted for sucking on lemon slices after RAI.
That did the same job as candy by keeping the saliva glands from getting blocked (which is a side effect of RAI sometimes).

[kidsnchicks]

Thank you all for your replies.  I have chosen to put off RAI for now.  I finally found a doctor that will test for graves, etc.

If it comes down to needing RAI after giving time and thyroid meds, then I will probably choose that.  For me, it was just too soon to choose it.  Granted, if it were life threatening as some of your situations have been, then I wouldn't hesitate to have it.

Thanks again!

[Smilerdeb]

Sometimes we all do things in life that we regret.
My biggest regret was finding out I had Graves.
But I have no regrets over RAI.
All I ask of anyone considering it is......know your numbers, know your symptoms, know hyperthyroidism, know hypothyroidism, know meds etc and most of all ....know that it will NOT get rid of Graves antibodies..
Learn all you can about RAI and the 'afterwards'.
Once you are prepared then the thought of RAI is a little less daunting and so much easier to manage.
Dont think its a quick 'fix it all' as its not.
I always swore that whatever desision I made, that I would stick to that desision as I was 'swaying' backwards and forwards towards TT or RAI.
As it turned out, the desision was taken from me and in a way I am glad, as I wouldnt be here today...if I had 'stalled ' for any longer.
I dont regret RAI and never will.
But I do regret getting Graves (of which I had no control over).

[hope4thegoodstuff]

Amen to that, lady.  You nailed it all right on the head.  

[monica148]

Can someone tell me more about this process?  Is it a pill or an IV you take?  How long do you have to be separate from other people?  What else do you have to do?

[hope4thegoodstuff]

I think there are different ways of doing it.  Mine was a capsule about the size of a contact cold capsule and from the sheet they gave me it appears, in my case, they had a choice of giving me one of three strengths.  The sheet told me to stay away from people for a good two days on my dosage.  I went three and four for most and a stayed away from a couple of pregnant people for over a week. (I felt it prudent to be overly cautious)  Thankfully, I was able to do mine over a weekend and the worst of it was past by the time I went back to work.  The folks at work weren't terribly concerned about me being there, but we isolated me in my own office for a couple of days.  (again more me than them)  Dr advised it would be a dosage that is comparable to living in Colorado in the mountains for a year as there is a naturally occuring radiation there.  But you get the dosage all at once.  

I went to the office, took my pill, they shot a gamma detecting gun in my direction and when I started percolating, they sent me home.  I was told I could be around my husband for short amounts of time, but no sitting down for a movie together.  If I'd had small children, we might of had to do something more for them...Their little thyroids are more susceptible.  My little dog was a bit bewildered as I didn't spend any time very close to him and I wouldn't let him crawl onto my lap.  I slept in a different room from my husband for a few days.  No deep kissing for 5 days.... I went back a week later for a scan to see if there was uptake (and there was)  and that was about it.

I did have some, ok,  a large amount of apprehension about the whole thing, but it is doable.  Smilerdeb and I got into a funny conversation about the apprehension thing.  I told her I kept picturing myself with a mushroom cloud looming over my head.  I was afraid that plants would wilt and die when I walked by...she had some good ones too.  Somthing about green goo coming out her ears.....But alas, my husband, my dog and my plants appear to be fine and there was no cloud over my head.  : )  Oh and no green goo.  

[graveswoman]

I hate PTU!!!!

I would do RAI in a heart beat just to be off of it. allergic to tapazole, so no other choice for me. i have gained 35 pounds 25 of them on PTU alone. I am desperately unhappy at being this large. have always been a happy person that loved to exercise and eat well. whiile still eating well, exercise has suffered, muscle spasms in my back have put an end to my running along with cramps in the bottom of my feet. not that when i was able to exercise it helped the weight situation any since diagnosed with graves. I am so angry at this disease, it is in my thoughts almost every minute of every day. I feel like a complete stranger in my body. I have heard no great stories on how this will get any better only stories of how i will get even bigger once i become hypo after RAI, but as i see it, what choice to i have either way i will get larger and unhappier, might as well have RAI, so i don't have to take this awful, water retaining med anymore!!!!! have doc appointment at end of month, going to beg for it, it has been a year, some people feel better, i am mildly feeling better, don't see any benefit to stay on this drug any longer.

i do have graves eye disease, so do need to do some research on when i can have it done, eye doc says when graves under control numberwise, but what if that never happens?

anyway, thanks for letting me rant. my husband is sure sick of hearing about it. LOL

graveswoman

[Smilerdeb]

I never gained one kilogram after RAI....I gained it all BEFORE RAI being on Carbimazole.And I gained 16kgs before RAI by going from hyper to hypo every 2 weeks on a rollercoaster ride of he//.
So please dont think that if you have RAI that you will automatically gain weight as thats not true in every case.
I did find though that once my levels started to level out and my TSH get under 3.0, that I started to lose weight and its only recently (after a bout of flu) that my T4 med has been increased to 62.5mcg everyday instead of the usual 62.5mcg for times a week and 50mcg on the other three days.
I used to spend more time on the treadmill than I did doing the housework and gained weight!
I gave up on the treadmill.....went back to fulltime work, drank water like a goldfish and thats what I think helped me lose the weight.
prior to dx I was 55kgs, then shot up to 71kgs in 3 months!
Now a year after RAI, I am just over 60kgs.
I dont carry as much fluid as I did prior to RAI (thats one thing I did notice) and am a lot happier in myself not being on the ATD rollercoaster.
Sometimes we get to the stage where we feel enough is enough.
I know I did.
And dont think you are ranting here.....we are all here to support and be supported (me included) so post whatever you want and if you ever feel you want any info on RAI, myself and many others here can help you with your questions about RAI and 'afterwards'.
All the best:)

[graveswoman]

sent you a personal note as well. but exceeded 800 characters so here is the end of what i was going to put in there

going to beg doc for RAI in June when i go, have to wait until august to have it, another employee is out having hip replacement surgery and have to wait until she gets back. Job is in jeopardy due to cutbacks and wage cuts (we have already had one wage cut) so dont' dare be out for 3 days until we have the other girl back, if we want to stay open we have to get the work done, I am working 50 hours weeks and that is killing me. no time to exercise anyways. i am beat when i get home and have to do the mommy, wifey things, then in bed by 8:30. sad....

will let you know when i have it, thanks for the support.

kim