RAI members only

[TheCarMan]

I am not looking for opinions or soliciting what anyone "thinks". I am also not trying to be rude.....although I am able :).

I am about to change my life with RAI. I have Graves and Hemachromitosis, so long term anti-thyroid meds are out. I am sure that I will take RAI over surgery.

I would like to hear from you that have had RAI. Tell me what you have experienced since going "radioactive". Are you happy with that choice? How do you feel now versus before? What were you told as far as isolation? How did your symptoms change? How long did it take to get you leveled out afterwards? How long did you go before taking replacement drugs?

Thanks for your stories.

[stella5349]

I was Graves in 2003 / Hyper stomed -  had RAI in Jan 2004 to kill the gland. I experienced the worst sore throat I ever felt 12 hours later. I didn't know about flushing the system with lots of water or sucking lemon drops to get the saliva going - I just aimlessly walked around with this bad sore throat for two days. It really felt I nuked myself inside from throat to stomach. Truely I remember being ill - like having a bad flu and very tired about 3 days later. I was put on Synthroid 3 weeks later.  I personally am not happy . I know it was that or surgery and I opted RAI. I can't say if surgery would of been different. I just know RAI changed my life. I lost alot of my sense of smell and taste after it. and still don't have it back 4 years later.  I am still not leveled out as you know. How do I feel you ask?? ..... different..................not me.

Of course - you know bits of my situation  I am not the classic thyroid disease patient-so I don't want to give you a bad impression.. This is just me - and I know many people had huge success getting help after RAI - I just had a real tough time with it. Graves/storm - Hypo/coma then maybe papcancer/hyperparathyroid??? I am not a classic one.  You will totally need to rest at least 3 days after and shower everyday if you can - brush your teeth and use the least amount of things you would salvage - plan on really throwing everything out you use for 5 days. Plan on it. Stay warm too - remember it is like the flu. If you want to protect you love ones - just stay away from them for 3 days - not obsess over it - but you have your space and that's it. I did it for my families safety whether myth or not. I didn't take chances (period)

Dude - you're the best and I totally enjoy your company here. ANYTHING.... ANYTHING you need - just call on me - I will search and seek whatever you need to get you through this crazy he//  No matter what - we are a "thyfamily" and family helps each other out!

We all love ya buddy - fight tough for health!!!!!!!

When are you going?

[kipland]

I had RAI, however it was after my TT for thyca.  I had a whole body scan, and they found I had very little thyroid tissue.  I was given a very low dose (30mCi) of RAI.  I only had to be in isolation for two days.

The worse part for me was the nausea from being extremely hypo (ugh.....brings back memories!), and the LID that I had to do for two weeks prior.  I went off the LID and started the replacement drugs the following day (24 hours after I took the glowing pill).

Within 1 week of starting the meds, I was able to go all day without taking my anti-nausea meds.  Each day I continued to feel better.  By the 6 week mark, I felt really good!

The last time I had my TSH checked was the end of November, and it was at .03.  I'm having bloodwork again next week, so we'll see where it's at.  I have way more energy than I've had in years.  I love it!

I don't know if that helped or not.  But that's my story, and I'm stickin' to it.

Lori

[utahmomma]

CarMan,

Love you but I'm not sure that my experiences can help you.  I didn't have a choice with my RAI since it was for a cancer recurrence.

I feel worse now than I did before - my weight is up and I'm constantly tired.  I feel like I have an entire new body after the RAI.

I was told to stay isolated for 5 days.  Can't really tell you about the change in symptoms 'cause (like I said) my circumstances are different.  It took me about 4 months after to get my symptoms leveled out (I was on 200mcg before RAI, was kept on the same dose, and ended up going into thyroid storm).   I went on thyroid replacement three days after my RAI but, remember, I went through 100mCi for cancer - a much higher dose than you will be receiving.

Don't know that this helps but you will be in my thoughts and prayers.

See, no scolding.  :-)

[TheCarMan]

The 9th of April. Going to the Endo on the 26th of this month. Last she knew, I already did the RAI.

Thanks for the concern and the story.

[AR-10]

I just had mine nuked Jan 18th.
Saw my Endo yesterday and she thinks it is shrinking. I didn't really expect it to start dying yet. I haven't had a hormone dump, and things seem to be going pretty smoothly so far.

I had mine ablated because I was flipping from hypo to hyper, although I haven't had a hyper episode since November. By the time I had RAI my TSH was 47 or so, which was not pleasant, but I was put back on Synthroid about a week after the RAI and within two weeks I was hovering around 1.5. and started feeling better.

Since I'm a newbie, I don't know what a year from now will be like. I don't know if I'll be happy with the results or not. I'm sure I'll be leveled out by then, but my Endo said it could take up to a year.

I don't know how long it will take you to need replacement meds, either. My guess is you will get bloodwork every week or two for a while starting a few weeks after RAI.

I had 12 microcures, which is a very small dose, but supposedly enough to kill mine dead. As a sidebar, they charged me $30 per microcure, which made the capsule $360. I thought that was amusing.

At 12 microcures, my isolation period was three days. I figure it takes an hour for the nuclear juice to start circulating, and they made me sit around for a half hour before they let me go. So you don't have a long time to get somewhere before you start glowing. Something to think about if you have a 100 mile drive.

You've heard the drill on isolation procedures. My Endo said it was actually safe to use regular utensils and such, as long as they are washed twice. I thought it was a bad idea.

I sweated through the sheets a few times, and it soaked into the mattress pad. Someone suggested plastic under the sheets, and that's not a bad idea.

Gloves for potty trips, yada, yada, yada.  

[stella5349]

You may feel great after a few months - so if this is the decision - just get your head in it and read all about it on your condition. It does ease the tension.

Going to my endo today - First visit. We will see where I stand today???

[debj52]

i had the rai 6 or 7 years ago now i am hypo and have to take meds for the rest of my life.....when i had mine checked it went from normal to 59.47 in three to six months.....so good luck and take care....deb

[liuu]

Hi Carman, I enjoy your fervor and your straightforwardness here. I guess you can then appreciate that it's just a little confusing for me to read that you do NOT WANT to know what we THINK, yet you want to know our stories. I THINK I understand your frame of mind (been there..) but I can't answer the one without the other. REASON? If I had one wish, it would be to go back to Sept,. 19,2006 and say NO to RAI. In many parts of the world it is considered outdated and ":barbaric" and now I know why. It made me sicker than ever, I have not had one full 24 hour day without debilitating, crippling pain (chronic severe pain) and so weak I type on my side on a couch... Sorry dear CArnan, I can't do less than write here that, although I do NOT know you, I would ask you to please put it off for at least a week (COULD YOU?) and google RAI and read ALL THERE IS OUT THERE on the subject. ONE THING I MUST ASK... Have you been experiencing ANY problems at ALL with your eyes? Double vision, fuzzy vision? Eye pain? ANYTHING? IF SO, then I'm going to stick my neck out and BEG YOU TO OPT for surgery and even then only after seeing at least TWO thyroid surgeons with an endo background. What's a little time to be BETTER in the end?'

PLEASE don't be angry and take this personally.... no, scratch that, take it VERY PERSONALLY as I do  not find it easy to hear of people going into have RAI (two little pills that changed my life for good) without being forewarned or at the very least informed. I hope you understand... if you were in my place, would you not feel the same and try to avoid others doing something you truly believe to be BARBARIC and wrong?
There are risks.... just google that.... RISKS OF I-131 RAI TREATMENT.
Hugs, Liuu (just a crazy Italian lady you may ignore... but I pray you do not)

[blitzerdog]

I just had RAI 2 days ago. It was a tough choice but I had 2 options. Surgery or RAI. The doctors recommended me RAI and after a month of research I decided it was my best option.

I haven't felt anything yet, and I was given a 20 millicurri pill which is low compared to a cancer patient. I think 20 mc will just be enough to knock out my thyroid and thus making me become hypothyroid. I have lost 25 pounds in a year and I'm probably going to gain that. I'm not really worried because life goes on. My mom has diabetes, and has a take a shot before she can eat every time so life can be worse. Just be happy and make a decision right for you.

Synthroid or Armour is just a small pill and even if you have to take a pill everyday in the morning, it's not that bad.

[tracy74]

I don't know if this will help, I did RAI 6 months ago after a TT.  I'm starting my diet on Monday getting ready to start my round 2.  There were a few things that bothered me for a little while.  The longest side affect was that I lost my sence of taste for about 2 months.  I couldn't taste A THING.  The isolation and nausea wasn't fun, but you get through it.  I was in the hospital for 4 days.  The more water you drink, the faster you get it out.  So rest cause you don't have anything else you can do in there.  It's hard to talk on the phone because they wrap the intire room with plastic wrap and drink drink drink water.
Good Luck.

[sizzlelene]

I had thyroid cancer with thyroid resection on 11/30/07 and 12/21/07.  Then went on to LID diet and RAI (100 microcuries) on 2/25/08.  I am now on Synthoid 200 mgs.  Had been a bit weak for about 2 weeks but am now regaining my strength and feel great!  One thing, however, is that my taste buds have been shot which is crazy since I love food so much.  Apart from eating lemons and sour patch candy, I have found that massaging my cheeks which covers my salivary glands have helped.  I get squirts of salty liquid which has lessened over time.  Depending on the dose of RAI given, you may not get this complication.  

One great thing is that my hair did not fall out!

[blitzerdog]

@Sizzlelelene.

It depends for RAI. Are you getting RAI for thyroid cancer or for hyperthyroidism.

If you get it for hyperthyroidism like me and you get somewhere between 10-30 millicurries, I hear that won't affect your taste buds or anything. And it comes with mild side affects from what I read.

If your getting the RAI for cancer it's a lot more millicurries I've read from 80-165 millicurries. The side affects are great on that because it's 5x stronger than for hyperthyroidism.
Be strong and relax. It's a 3-5 day vacation coming up!

[hyper_what?]

THANK YOU for asking this! I'm waiting on the insurance to approve my referral and the hospital to set up RAI for me ASAP.  The dr. wants to hurry and get this done before my levels go crazy on me again. This is the closest to "normal" I've been in the 6 months he's seen me...even then I was still off a little. Anyways..THANKS! Hopefully you and I will be able to commiserate together thru this "hell" they call RAI.

[AR-10]

RAI is not hell.
Going off your meds for five-six weeks is hell.

RAI in low doses is a weekend laying in bed, sick from not taking meds for six weeks.

[utahmomma]

Amen AR-10.  It's the hypohell - not the RAI

[hyper_what?]

I've already been told by my endo to STOP the methimazole 5 days before treatment and not to taken any until a week after treatment. I get horrible when i just miss 1 day or even 1 pill....so no meds IS hell for me.

Sorry...I forgot about the hypohell phrase we all use here. My bad.

[AR-10]

Actually, in your case, it's hyperhe//. :^(

[imedicmommy]

I had RAI in sept of last year for residual tissue after surgery for thyca, I was given a dose of 50millicuries. I was told that I needed to stay in isolation for 7 days and then I was scanned with a geiger counter at the doctors and was told not to be with in 6 feet of my kids for another 7 days. After that they rescanned with the geiger counter and said that I just needed to not hold them closely for a long period of time for another 2 weeks. One thing they told me was that because there was a lot of tissue in my neck, as in your case, that the radiation would hang around longer because there was more to attatch to. That was hell. Physically I had no side affects from the RAI. I had a thyroid dump in January and meds were increased but until then I had felt pretty good. I think my meds were stil not theraputic but I think that I just needed to bump up a little and I would have felt fine.However was put on  Cytomel for follow up scan in April and possible repeate RAI. Again, I didn't feel as I had much of a choice and I don't regret it. I can't speak to symptoms from Graves. Oh, and they started me on meds and scanned me 7 days after RAI dose was taken.  I hope this helps, it's a tough choice and I wish you the best of luck.

[Kaylund]

Today is August 28, on Aug 18th, my b day I had 30mci. Since I had been on PTU for 3 years the endo told me to wait 2 days and start them again. I left the hospital that day and felt great and went out to eat for my bday. I was great until Sunday-I woke up lazy and very tired-then I started getting sick-like the flu-I was very cold and very sleepy. I slweep most of Sun, Mon,Tues-then got really sick on Tuesday. My DR was out of town having surgery, but had a dr in charge-LOL This dr went on vacation_ I called twice and finally on thursday they called back and said they could give me nausea meds-they will be delivered shortly-I hope they work. I just dont understand why all week I felt great and then staight down the tube.

[Venora Moonwind]

To: everyone
Making you go through hypohell is soooo caveman I demanded and got thryogen injections for my 2nd RAI  last month.
I am never going to hypohell again and I will never get another RAI unless my Thyroglobin rises.
Love Venora
Pap cancer Sept 06.

[TheCarMan]

I think that I just won the longest running post award! From March through August.
I'll make myself a Malibu Rum and pineapple juice cocktail to celebrate.

BTW, still in remmission.

[AR-10]

Hey Cardude!

How goes life?
Congrats on your good health!

[TheCarMan]

I'm good. I still wake up every morning and I haven't seen my name and picture in the obituaries yet.....so life is grand!

Only symptom is gaining back some weight....still at a net 40lbs loss. No thyroid related meds.


You good?

[AR-10]

Getting out of the house every day so it's all good.
Gained some weight, lost it again.
Having an auction.
Still got internet. :o)

[utahmomma]

What you boys won't do for attention    :-)

HUGS my favorite thyroid guys

[stella5349]

We miss you a bunch CM but understand why you may not be posting much

Cheers to your good health.

[kipland]

Car Dude!!!!  Where have you been hiding?  You coming to the pub once it opens again?  It's been closed for the summer.........for repairs......or something like that.  I think it was a few too many of those drinks you mix up, and people got out of control and trashed the place.

Good to see you post again, and hear that you're still in remission.  Wonderful!

Lori

[catietoriroman]

Hi,

I have had my entire thyroid removed on 12/30 because I had a nodule on it that was papillary cancer.  They also removed 10 lymph nodes and two were cancerous as well.  When they remove your thyroid they have to leave a small amount near your vocal cords or you won't be able to speak.  My cancer was in this area.  The surgeron says I should do the RAI treatment but my doctor says it is not necessary.  The radialogist is taking the side of caution and also suggesting it.  I would be taking a small dose (125-150).  They say it is my decision.  I am torn.  Of course, there are always side effects.  I don't know what to do.  Does anyone have any thoughts or experience in this area?

Thanks,
Christine

[nissah46]

Since the cancer moved outside your thyroid to the lymph nodes, you should have the RAI.  That dose you mentioned is not a small dose.  You will require isolation for about a week.  I had my RAI in Oct.2006 and had side effects, but it beats the cancer.  The doctor who told you it is not necessary, are they a specialist or your GP.  I would listen to your surgeon and radiation oncologist.  Feel free to ask me any question you may have.  Good luck.
Trish

[DAB427]

I had RAI in 2004.  I was told that RAI has a half life of a day and to stay away from pregmant woment and small children for approximately three days.  I had it on Friday and returned to work on Monday.  I had it in early February and began to feel sluggish in April and asked my doc to prescribe lowest dose levothyroxine.  After almost a year and a half of adjusting my meds and addting Cytomel, I was leveled off, however, I felt sluggish, brain fog, allegies, teeth grinding, weight stall, etc.  I then decided to go on Armour thyroid and after just one adjustment, I did well for an entire year.  It was only after the next adjustment I began having problems.  I am finally feeling better now thanks to this group and HRT.

I have Grave's opthalmology as well which can happen after RAI.  My doc gave me prenisolone (??) eye drops during this period to help keep my eyes stable and the swelling down.  If my TSH gets too high, I get dry irritated eyes, pulling of the eye muscles, double vision, etc.  I hear Grave's opthalmology is rare so I am just lucky!

Hope that helps!

Debbie

[Benny0147]

I was wondering,with I read about Grave's opthalmology ,can having problems with my orbital sockets have anything to do with this ? I broke my orbital bone 2x in less then 1 yr... ?? just wondering...thank you.

[blessed333]

I had RAI 18 yrs ago and I had no symtoms whatsoever. I had to be isolated but I did not feel any different, although once I became hypo i did have all tha classic symtoms of that but as far as RAI itself.....no problem!