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?  

[dgmootry]

I had RAI over a year ago. Prior to RAI I was Hyperthyroid with noduals, non cancerous, I was hyper for over 20 yrs, never really had any problems, I didn't have Graves, but then about  1 1/2 yrs i went into a thyroid storm, it took me many months to finally agree tpo have RAI, I too was scared. But i think the thyroid storm scared me even more. Well after RAI it took a month or so to go hypo, my doctor made the mistake when i finally went hypo she prescribe me levothyroxin 100 which was way to high then I asked to be on Levoxyl she prescribe 75 which was still to high, I had lots of reactions to both of these drugs, really bad, so I requested to be on Armour she prescribed to start out 30 from there i creeped up to 57 1/2 I feel so much better,and I'm really glad I did the RAI. If you do RAI and when you go into hypo make sure your Doctor goes slow in prescribing your new meds, too high of drug at first is really bad, I felt horrible. Good luck,

[ChitChatNine]

Hi,

It's been a very long time since this post was started .. you may want to repost on the main forum where it will get better visibility.

C~

[Jennni123]

Thank you for this post. I'm going to have RIT and I'm scared. How are you feeling. Did you get your meds figured out.
I babysit my 7 week old grandson and I'm wondering how long I have to stay away from him.
I'm so scared!
J

[gimel]

Many members who have had RAI or a TT then suffer with hypo symptoms such as those you mention until they find a good thyroid doctor that understands how best to treat.  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results and especially not TSH levels.  

TSH is a pituitary hormone that is affected by so many variables that at best it is only an indicator, to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T3 and Free T4 (not Total T3 and Total T4).  Free T3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.

So you have told us of some symptoms.  Now please post your thyroid test results and reference ranges shown on the lab report so that members can assess the adequacy of your testing and treatment.  If you haven't been tested for Free T3 and Free T4, then you should request that be done each time you go for additional tests.  If the doctor resists, then you should insist on it and don't take no for an answer.  You should also be tested for Vitamin A, D, B12, and ferritin, since hypothyroid patients are frequently low in those areas as well.  

For all these tests be aware that being just in the lower part of the range is frequently inadequate.  For example, many members, myself included, report that symptom relief for them required that Free T3 was adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.  

For a little insight into clinical treatment, please read this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance, after the initial testing and evaluation.  The letter is then sent to the participating PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

In the letter please note this statement.  "the ultimate criterion for dose adjustment must always be the clinical response of the patient."

[boke]

I had RAI about a year ago.  I have never felt worst.  I had hyperactive thyroid symtoms for many years.  I was first diagnosed at 16 and I'm 64.  I was never sick.  I did have tremors, but I was also on beta blockers fior years for hypertension, so I could control palpitations.  My weight was also really under control.  Now, I get a daily headache about 1 hour of taking synthoid. I have very little energy and have gained over 20 pounds.  Is there any way of reversing this?  I am so tired of lopoking and feeling this way.  Don't tell me to diet because I have tried just about everything.

[Smilerdeb]

You wont regret RAI....
I was like you...a total mess.
Its now been 3 years this coming June and I have never regretted it.
Yes I have had what I call 'hiccups' where levels go a fraction off track but it is usually from stress (my Father and Best Friend both died within 3 months of each other).
But now back on track......doing good and feeling great.
NOT ONCE have I felt like I did BEFORE RAI.
I have even gone Hyper on thyroxin and still not had the severe symptoms.

I did notice though that I tend to have sensitive skin, whereas before I didnt.
But I have been back in fulltime work ...took some time out for my Fathers death and family issues but went this morning for a job interview for a Federal Government job.

Just follow the proceedures and drink like a fish the first 2 days to flush out as much RAI as you can.
Dont forget to suck on lemon slices or sour lollies to keep the saliva glands ok.
The first 48 hours are the most boring there is.....so make sure you have videos, magazines etc as you will be bored stiff.
The only side effect I got was a hot neck (under the ear) and it was eased by a cold wet towel.
This sensation lasted about an hour...no more.

Get regular blood tests done and tell the Doctor that you dont want your TSH to go over 6.0.
he will then slowly regulate your thyroid meds and you should be level within 4-6 months...all going well.
Its a slow process so have patience and be kind to yourself.
You will be fine...I promise.

[Mary6684]

Ive had hyperthroidism n Graves Disease for about 8 years, and I'm a wreck. I feel like I have no control over my body. my eyes are bad, my neck looks like a have a huge adams apple, which is crazy cause I'm a girl, i feel like my legs are so weak i have problems walking upstairs, my skin is so bad, my hair is falling out, everyday I feel like I'm gonna have a heart attack, I am on propolanol 9 pills aday, I am an emotional wreck as well, I feel like I'm starting to to get depressed and my husband doesnt understand, i can't sleep, people think im on drugs cause I talk a mile a minute, I'm always shaky. These are just some of my symptoms. I was very young when i found out I had these problems n never took care of it, I have 4 kids so they were always more important then me. Now 8 years later I'm finally getting it taken care of, i realized that if I dont take care of it Im proably going to die.So Tomorrow i go in for RAI. My endo said I dont have time for surgery, he is rushing me in for RAI!! My question is am i going to feel better after? I am so sick of feeling like this everyday, Am I making the right decision to listen to my endo?

[kidsnchicks]

Hello Reylyn,
My first Endo recommended that I have the RAI.  I am glad that I didn't.  After about 8 months of anti thyroid meds, I appear to be in remission.  It was a personal choice for me.  I do not know how long you have been battling your Graves or what your situation is.  But, don't have RAI just because a doctor says hypo is easier to treat than hyper.

Now, regarding your questions.  The research that I came upon when considering the RAI stated that a person was not to be near another person for more than  a couple of minutes; not to eat from the same cookware or dinnerware; not to sleep in the same bed ... etc. for 5 to 7 days.  I'll provide some links for you to read for yourself.  The best thing to do is educate yourself and ask your doctor.

http://www.thyroid.org/patients/patient_brochures/radioactive.html

http://www.endocrinologist.com/Radioactive.html

http://www.radiologyinfo.org/en/info.cfm?PG=radioiodine

http://www.mythyroid.com/iodinehyper.html

I hope this will help.  
Jamie

[reylyn_h]

hi, i am so glad to find this forum =)
i will be getting RAI this March for my graves disease.
the thing is, i live in cayman islands, we don't have an Endo here and so i need to fly to Miami to do the RAI
when i booked an appointment with and Endo in Miami, he was not sure about travel restrictions - probably because his previous patients don't need to fly back somewhere like i do.
if someone can help with my questions i would really really appreciate it:
1. i definitely will be staying in a hotel before and after RAI - not sure if its safe for the next user of the room though im planning to take all precautions like buying plastic bed cover and cleaning the room by myself
2. i consider staying at the hospital (even if the insurance will not cover)but im not sure if the hospital will actually let you stay =)
3. i will be alone after the RAI treatment - my husband will be flying back to Cayman - no reason for him to stay in Miami if he should be staying away from me - i can't drive and will have to take taxi back to hotel - more reason to stay admitted in the hospital
4. how long before i could fly back to cayman? its just a one hour flight but then i'm afraid of exposure to other people
thanks again. God Bless everyone.
regards,
Reylyn

[Muffin23]

I was diagnosed with thyroid cancer in August, and have had a total thyroidectomy. I was put on thyroid pills immediately. I just came out of the hospital today after a 48 hour stay having the RAI treatment. I went off the synthroid pills 5 weeks ago. I didn't feel as bad as my doctor had warned me I would feel. Just a little more tired.  Two weeks prior to the RAI treatment I had to go on a low iodine diet. I thought it would be horrible, but it really wasn't.  The hardest part was the preparation of the food, reading every label in the grocery store. I ate very well, probably better than I had in years, because I had to cook for myself.  I made a huge pot of meat sauce, and left off the salt but used a salt substitute.  I put a small amount of milk in my coffee only once a day, and talked myself into likeing black coffee. Other than that, I ate steak, lamb chops, chicken, potatoes, veggies and a salad. What is so bad about that??? So far, I am feeling fine after the treatment but I did only have it 2 days ago.
I was told not to go to a movie, to a shopping mall or to a restaurant for at least a week, mainly so that I don't end up near a pregnant woman or small child.  I was told I can see people but to stay 3 feet from them and for no more than 15 minutes at a time. Wash my clothes separately, but I live alone.  Do not see my grandchildren for at least another week. That's all. I know someone who did it at home, because their dose of radioactive iodine was lower. She has 3 young children. She stayed in her bedroom and someone else helped care for them.  I am not sorry that I did this RAI at all. I have a very well respected surgeon and endocrinologist, and if they suggested it, then I did it.
I restarted eating anything I want to today. I was nervous about being hypothyroid, but, like I said, it was fine.  

[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

[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]

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

[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.  

[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]

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

[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).

[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]

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).

[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...

[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.

[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.

[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.  

[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....