# My RAI experience



## TheYam

Hi! I posted on a different thread, but decided to start my own...

I was diagnosed with Graves about 3 months ago. My initial TSH level was over 50. I started on PTU, then switched to Tapazole because I hated having to take PTU 3 times per day. Plus it tasted disgusting! My most recent TSH was down to 28. I was planning to stay on the meds but after doing lots and lots of reading, I decided to do RAI.

I was kind of scared because I had read about lots of people who had bad experiences and wished they could go back and not do RAI. But I had also read lots of information that said RAI is an excellent treatment and not to be afraid of it!

Anyway, I went for my appointment this past Wed. At the hospital, I had to watch an information video first about what would happen and all the precautions, etc. Of course, I already knew all of this ahead of time. (I would NOT do this treatment without reading lots about it first so you know what to expect!) After the video, I went into a different room for "the drink". The amount was about a teaspoon and it tasted like almonds. No big deal. They even dilute it with some distilled water so it's easier to drink. The most difficult part of the actual treatment was not being able to eat for hours before or after.

I was expecting to experience some nausea afterwards because I had read that was common. Luckily, I felt absolutely fine! I was also expecting to wake up with a sore throat the next day, so I stocked up on painkillers, but again, nothing! Maybe I have just been lucky, but I have had absolutely no side effects so far. It is now day 4. I've been off work and isolating myself at home, and the hardest part is not being able to spend time with my husband!

I wanted to post this because when I was researching RAI, I had a hard time finding people who had positive experiences with it. But if you are considering RAI, you should know that it is not really as bad as some people make it out to be. Well, not for everyone anyways. It is possible to have a good experience! Just make sure you read up on it first and that it is the best treatment option for you.

I'll keep you posted on my progress...


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## NastyHashi

Your TSH was 50 - that's Five-Oh, not POINT 5-0, right?

If so, that would indicate a hypothyroid state usually. Do you know what your other numbers were and how did they diagnose you with Graves?

Usually Graves' patients have very low TSH numbers, like 00 or .02 or something like that - really low.

I've always had a high TSH myself and tested positive for Graves' antibodies but docs would not do anything for me since my TSH was high, even though I was always jittery and had a high heart rate. Me being overweight didn't help my cause any either since most Graves folks are thin and wirey.


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## HappyMommy

I'm very glad to read about your positive RAI experience because I am sooo dreading mine. Granted mine will be a little different than yours so who knows. I've already been told mine is in pill form, not sure the difference there, but mine will also be after a complete removal of my thyroid so who knows how it compares. Still, glad to hear all went well!!


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## TheYam

Back again...

Well, it's been over a month since my RAI treatment, and so far so good! I haven't really had any negative side effects, except that my hair has been coming out more than usual in the shower. Not so great, but not terrible either.

I also haven't had any weight gain (yet!), which I guess is a pretty common occurence after RAI. My weight has actually been fairly steady throughout this whole ordeal. I've fluctuated by maybe 5-8 pounds, but I think that's normal.

The only difference I've noticed at all so far is that my heart has stopped going crazy and I often feel cold. (A good reason to go shopping for some new sweaters!) 

I'll be getting my first blood test done next week, so hopefully all is going according to plan!

(To Nasty: I guess I must have made a mistake with my numbers for TSH. I suppose I should clarify with my endo next time I'm there!)


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## TheYam

OK, I don't know if anyone is really reading this, but I'm going to keep posting anyway just in case...

It has now been almost 8 weeks since my RAI treatment. I have definitely started to feel hypo! I'm cold pretty much all the time and I've been a lot more tired than usual. Also, despite my rather small appetite lately, I have now gained about 6 or 7 pounds. 

I guess I shouldn't complain though because overall, I think I've had a fairly easy time. My hair is no longer falling out, which is a relief! Plus, my heart hasn't gone crazy in several weeks. I've been going for my regular blood tests, and my endo is actually starting me on Synthroid tomorrow! I can't wait! Soon I hope to be able to eat normally again without gaining weight, and I think the biggest thing I'm looking forward to is not feeling COLD all the time! Hopefully we'll be able to figure out my ideal dosage fairly quickly and then it'll just be a case of maintenance.

So, 8 weeks later, I still have no regrets about choosing RAI. True, it hasn't been perfect, but I feel like it was the right decision for me.

I'll continue to post and hopefully this will help someone out there...


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## sharris123

I too had RAI on 11/30/07, had to wait two months for my meds, im on my third day. my experience has been a tad different. my mid section has literally doubled in size! I look like i am 6 months pregnant and freezing cold. what a relief to start on meds tho! I have averaged gaining 1 pound a day for over three weeks now. anytime I eat or drink anything, my stomach hurts, as if I had just finished with a thanksgiving meal! I am hoping this will go away soon. I go into see my regular doc on thursday, hopefully she will beable to look at something different that we hadn't thought of. I hear alot about Adrenals....I must check that out. anyhow, thanks for sharing, and take care! S


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## amber25601

i found out i had graves this past summer and my doctors want me 2 do the RAI treatment!! and im so scared!! i was going 2 ask you if you had any prombles with your eyes after you had the treatment??


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## TheYam

To sharris: I'm sorry to hear that you've had such a tough time with your RAI. I'm surprised that your endo didn't put you on meds sooner because if you were gaining weight so quickly, it must have meant that you were already low! I am also freezing all the time. In fact, I'm wearing a sweater, a fleece, and I'm wrapped in a blanket right now!  Hopefully now that you're on your meds you'll start to feel normal again soon. I haven't noticed any difference yet, but then it's only been 4 days and I guess the Synthroid takes a couple of weeks to really kick in. I can't wait to feel warm again!

To amber: I was lucky and didn't have any problems with my eyes. No bulging or anything. My endo actually told me that you're much more likely to have eye problems after RAI if you had eye problems before already. My eyes never bothered me, so maybe I was at lower risk??? I have no idea. The only thing I can say about RAI is to read up on it lots and make sure it's the best decision for you. I think it was a good thing for me, but I pretty much knew what to expect in terms of side effects, etc. It seems like people who get "talked into it" have a less positive experience because they doubt their decisions or something.


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## GD Women

My experience with RAI was very non-eventful. Yes I gained weight, but it was only half the weight that I lost before treatment. I do watch what I eat and I'm a lacto-ovo vegetarian. It has been going on 11 years since treatment and my weight has seemed to stable some what but fluctuates from summer to winter back to summer and so forth. I am approx. 123/124 this winter, nude  My weight expatiations are unrealistic of wanting to weigh 105 lbs. Before treatment and due to Graves' I lost down to under 100 lbs around 95 lbs and still losing by treatment.

I am saying, that it does get better with time. Maybe not with 100% of what you want to lose but maybe half and that of course is with watching diet.

As far as the eye issue. RAI does not cause Thyroid Eye Disease. It will however, cause temporary worsening of already existing symptoms. None of the treatment options will keep a person from getting TED if they are predisposed to it, that is, have TED antibodies. TED has different antibodies that attack the eyes, from Graves'/Hashi antibodies that attack the thyroid. They are close in relationship and are referred to as cousins.
So, if a person has TED antibodies are suseptsable to getting TED. This includes Hypo/Hashi, people who take Armour thyroid, people with other autoimmune conditions and even in people who have no evidence of thyroid condition.

As I said, non-of the treatment options will be safe proof from TED.

So ladies, be patient and positive - there is light at the end of the tunnel.


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## lm830simmons

TheYam said:


> OK, I don't know if anyone is really reading this, but I'm going to keep posting anyway just in case...
> 
> It has now been almost 8 weeks since my RAI treatment. I have definitely started to feel hypo! I'm cold pretty much all the time and I've been a lot more tired than usual. Also, despite my rather small appetite lately, I have now gained about 6 or 7 pounds.
> 
> I guess I shouldn't complain though because overall, I think I've had a fairly easy time. My hair is no longer falling out, which is a relief! Plus, my heart hasn't gone crazy in several weeks. I've been going for my regular blood tests, and my endo is actually starting me on Synthroid tomorrow! I can't wait! Soon I hope to be able to eat normally again without gaining weight, and I think the biggest thing I'm looking forward to is not feeling COLD all the time! Hopefully we'll be able to figure out my ideal dosage fairly quickly and then it'll just be a case of maintenance.
> 
> So, 8 weeks later, I still have no regrets about choosing RAI. True, it hasn't been perfect, but I feel like it was the right decision for me.
> 
> I'll continue to post and hopefully this will help someone out there...


Your posts have definately helped me. I'm going to get RAI next Friday and I've been looking for people who have had positive experiences. I realize that most people who post are those who have negative experiences. Thanks for sharing your experiences with us.


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## TheYam

It has now been almost 9 months since my RAI treatment last December.

Over the past few months, I've been taking Synthroid and I've had to lower my dosage several times. My endo started me on a 112 mcg dosage, but I was eventually down to only 50 mcg because my T4 readings kept coming back too high. I was worried that I would have to do another round of RAI, but I got some good news today! My latest T4 reading is 19.5 (was originally over 50 before RAI) and now my endo wants me to simply go off Synthroid altogether. I am so hopeful that I'll be one of those lucky few people who end up being euthyroid after RAI treatment! I've got my fingers crossed! 

As for other side effects, etc., I've felt great for the past few months. The temperature fluctuations are a thing of the past, and I'm the same weight I was before having RAI.

To everyone who is considering RAI as a treatment for Graves, good luck! I hope your experience is as positive as mine has been.


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## critterz

I had my RAI a week ago and so far, no side effects! Mine was in pill form. I am getting some of my symptoms back from time to time but I understand that as the thyroid cells die, they release more hormone so this is normal. knowing what is going on helps me deal with it. My worst side effect that I cannot get rid of is my leg pain. The Endo said it was all part of it. I did not read anything about leg pain until I found this forum. My last blood test showed a high-normal range. I was not told numbers, but know that is a very good sign as my numbers were off the charts before. Took a year to get diagnosed due to deaf doctor. Keep me posted on how you are doing!


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## JDzWife

Hi everyone. I stumbled upon this board doing a google search.

I was diagnosed February 2009 with hypo and hyperthyroidism through routine blood work. In May, I finally saw an endocrinologist. I elected to be treated with the RAI, but considered surgical removal of the thyroid and methimazole. I had the RAI treatment the end of May 2009, five months ago. I had the RAI in pill form and done in the endocrinologist's office as an outpatient. I stayed secluded for four days, away from hubby and my animals.

The only side effect from the RAI that I have experienced so far was pain in my salivary glands, left more than right. Before the RAI treatment, I had a 40-pound weight gain, extreme hot flashes, water retention, insomnia, and I noticed my hair falling out. I still have the hair falling out, water retention and weight gain, but the hot flashes are not as intense. I am now on prescription medicine to help with the insomnia.

I have been on Synthroid originally at 100 mcg, now down to 50 mcg. My last visit to the endocrinologist was last month. She told me I was not completely hypothyroid yet. I cannot tell a difference, really, being on the Synthroid. There are days where I have more energy than not, but still not up to par. The weight gain has been my biggest concern. I watch what I eat and am still gaining weight. I do go to the gym, but not as often as I should due to the low energy level.

I hope this helps somewhat. I have no regrets taking the RAI and actually had a noneventful experience.


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## Andros

JDzWife said:


> Hi everyone. I stumbled upon this board doing a google search.
> 
> I was diagnosed February 2009 with hypo and hyperthyroidism through routine blood work. In May, I finally saw an endocrinologist. I elected to be treated with the RAI, but considered surgical removal of the thyroid and methimazole. I had the RAI treatment the end of May 2009, five months ago. I had the RAI in pill form and done in the endocrinologist's office as an outpatient. I stayed secluded for four days, away from hubby and my animals.
> 
> The only side effect from the RAI that I have experienced so far was pain in my salivary glands, left more than right. Before the RAI treatment, I had a 40-pound weight gain, extreme hot flashes, water retention, insomnia, and I noticed my hair falling out. I still have the hair falling out, water retention and weight gain, but the hot flashes are not as intense. I am now on prescription medicine to help with the insomnia.
> 
> I have been on Synthroid originally at 100 mcg, now down to 50 mcg. My last visit to the endocrinologist was last month. She told me I was not completely hypothyroid yet. I cannot tell a difference, really, being on the Synthroid. There are days where I have more energy than not, but still not up to par. The weight gain has been my biggest concern. I watch what I eat and am still gaining weight. I do go to the gym, but not as often as I should due to the low energy level.
> 
> I hope this helps somewhat. I have no regrets taking the RAI and actually had a noneventful experience.


Welcome to the board and thank you for your lovely post. If you get a chance, please post your most recent results for TSH, FT3 and FT4 with the ranges. The ranges are important as different labs use different ranges. Perhaps one of us can make some helpful comments.

You might like to start a new thread in a different folder; up to you.........whatever you like.


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## rocky71220

I have hytherthyroidism with a large goiter, I had been on PTU for 11 months with no change. I received radioactive iodine about 6 weeks ago. So far I have had no problems and my goiter is shrinking in size. The goiter had became so bad it was hard to swallow some foods. But I think that my experience so far with the rai has been pleasant. I have weighed 86-88lbs for pretty much my whole life;my whole family is small so I thought my weight was normal. I have not gained any weight yet, but I'm looking forward to about 10 or 15lbs. It took about 15 years for me to get the right diagnosis. Thank heavens I did my heart rate would sometimes be 145 and I was a nervous wreck. Thanks for listening.

Amanda


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## Andros

rocky71220 said:


> I have hytherthyroidism with a large goiter, I had been on PTU for 11 months with no change. I received radioactive iodine about 6 weeks ago. So far I have had no problems and my goiter is shrinking in size. The goiter had became so bad it was hard to swallow some foods. But I think that my experience so far with the rai has been pleasant. I have weighed 86-88lbs for pretty much my whole life;my whole family is small so I thought my weight was normal. I have not gained any weight yet, but I'm looking forward to about 10 or 15lbs. It took about 15 years for me to get the right diagnosis. Thank heavens I did my heart rate would sometimes be 145 and I was a nervous wreck. Thanks for listening.
> 
> Amanda


Hey there, Amanda! And a hearty welcome to you!! Thank you for your encouraging story! How are you feeling right now? Are you on thyroxine replacement yet or is it too soon?

Now the healing pathway can begin; I am happy for you.

Look, you can have 10 lbs. I will gladly give it to you. Hee, hee!!!


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## rocky71220

It's now been about 9 or so weeks and I've had some muscle cramps and a little loss of energy. Oh yeah I've gained about 4lbs. I went to the doctor and I'm a little low now, so she finally took me off the PTU. I go back in a couple of weeks for another blood test and I'll report then. But all in all I feel fine.


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## Andros

rocky71220 said:


> It's now been about 9 or so weeks and I've had some muscle cramps and a little loss of energy. Oh yeah I've gained about 4lbs. I went to the doctor and I'm a little low now, so she finally took me off the PTU. I go back in a couple of weeks for another blood test and I'll report then. But all in all I feel fine.


Good to hear from you. Please let us know what thyroxine replacement you will be taking and how much? And, how often will you be going for labs?

Should be at least every 8 weeks for a while.


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## Avangelene

I have/had hyperthyroidsm since 1992.(who knows if I have it anymore now) Everytime I went to the doctors my levels were either high, low or normal. It wasnt until recently that my heart rate and blood pressure got so out of wack that I went to see my doctor. The goiter never really bothered me so the doctor said as long as it wasnt bothering me to just leave it. Well then things got a bit worse.

I was diagnosed with a 6 inch multi noduler goiter and had RAI On 1/27/2010.
I am curious about any kinda weird side effects that people may have had afterwards. I am very lightheaded and I am drinking a ton of fluids and well not very hungry at all. Has anyone had any of these? There is so much contradictory information that I have found on the internet.

I am not unhappy that I decided to do RAI this is the first time in years that my hands dont shake so bad I couldnt type. I just wonder now if everything I am feeling is normal.


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## Andros

TheYam said:


> Hi! I posted on a different thread, but decided to start my own...
> 
> I was diagnosed with Graves about 3 months ago. My initial TSH level was over 50. I started on PTU, then switched to Tapazole because I hated having to take PTU 3 times per day. Plus it tasted disgusting! My most recent TSH was down to 28. I was planning to stay on the meds but after doing lots and lots of reading, I decided to do RAI.
> 
> I was kind of scared because I had read about lots of people who had bad experiences and wished they could go back and not do RAI. But I had also read lots of information that said RAI is an excellent treatment and not to be afraid of it!
> 
> Anyway, I went for my appointment this past Wed. At the hospital, I had to watch an information video first about what would happen and all the precautions, etc. Of course, I already knew all of this ahead of time. (I would NOT do this treatment without reading lots about it first so you know what to expect!) After the video, I went into a different room for "the drink". The amount was about a teaspoon and it tasted like almonds. No big deal. They even dilute it with some distilled water so it's easier to drink. The most difficult part of the actual treatment was not being able to eat for hours before or after.
> 
> I was expecting to experience some nausea afterwards because I had read that was common. Luckily, I felt absolutely fine! I was also expecting to wake up with a sore throat the next day, so I stocked up on painkillers, but again, nothing! Maybe I have just been lucky, but I have had absolutely no side effects so far. It is now day 4. I've been off work and isolating myself at home, and the hardest part is not being able to spend time with my husband!
> 
> I wanted to post this because when I was researching RAI, I had a hard time finding people who had positive experiences with it. But if you are considering RAI, you should know that it is not really as bad as some people make it out to be. Well, not for everyone anyways. It is possible to have a good experience! Just make sure you read up on it first and that it is the best treatment option for you.
> 
> I'll keep you posted on my progress...


Thank you for posting this. It is most encouraging and right you are. The majority of folks do very well w/ RAI. And this is a good thing for it is so so simple and non-invasive.

How are you feeling today? You sound great!


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## Glitter

Avangelene said:


> I have/had hyperthyroidsm since 1992.(who knows if I have it anymore now) Everytime I went to the doctors my levels were either high, low or normal. It wasnt until recently that my heart rate and blood pressure got so out of wack that I went to see my doctor. The goiter never really bothered me so the doctor said as long as it wasnt bothering me to just leave it. Well then things got a bit worse.
> 
> I was diagnosed with a 6 inch multi noduler goiter and had RAI On 1/27/2010.
> I am curious about any kinda weird side effects that people may have had afterwards. I am very lightheaded and I am drinking a ton of fluids and well not very hungry at all. Has anyone had any of these? There is so much contradictory information that I have found on the internet.
> 
> I am not unhappy that I decided to do RAI this is the first time in years that my hands dont shake so bad I couldnt type. I just wonder now if everything I am feeling is normal.


I had the RAI on the 26th of January! I was diagnosed with Hperthyroidism back in Sept or Oct. My levels weren't very high and I was perscribed Methimizole. Had to have bloodwork done a couple times til my levels fell and then they advised the RAI. I was very thirsty too for a couple days. I had to stop the Methimazole 5 days before the RAI and my stomach was not happy the next few days. If I even thought I had to go I had to haul it to the bathroom quick. Since the RAI I have experienced nausea after some meals. I had a funny feeling in my throat but not really sore. The goiter/nodule feels different already.Still have a higher heart rate, and the shakes at times. I've had BP probs for a couple years and hoping this will go away. I'm really hoping I don't gain weight! Good Luck to you!


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## Andros

Glitter said:


> I had the RAI on the 26th of January! I was diagnosed with Hperthyroidism back in Sept or Oct. My levels weren't very high and I was perscribed Methimizole. Had to have bloodwork done a couple times til my levels fell and then they advised the RAI. I was very thirsty too for a couple days. I had to stop the Methimazole 5 days before the RAI and my stomach was not happy the next few days. If I even thought I had to go I had to haul it to the bathroom quick. Since the RAI I have experienced nausea after some meals. I had a funny feeling in my throat but not really sore. The goiter/nodule feels different already.Still have a higher heart rate, and the shakes at times. I've had BP probs for a couple years and hoping this will go away. I'm really hoping I don't gain weight! Good Luck to you!


Hi, Glitter. Thank you for your input and sharing your experience with us.

When are you to go in for labs to see if you are gravitating towards hypothyroid?

Are your eyes okay?

Ginger tea is wonderful for nausea. Stay on your diet strictly in the meantime so you don't gain weight.


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## Glitter

I go back on Feb 26th for bloodwork and then again on March 26th and back to the Endo March 29th. Had a bad round with nausea last evening and threw up quite a bit. :sick0020:This time it was before eating. It had been after eating. Is this coming from the thyroid dying and throwing off excessive hormones in the process?
I haven't had any bulging eyes that I've heard some speak of, but they do get tired, blurry and scratchy.


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## Glitter

Has anyone ever had probs with dry skin? My Arthritis doc noticed my dry skin and felt my thyroid. Then he had bloodwork done. Thats how it was found and my journey with Hyperthyroidism began.
:anim_07:This reminds me of when my Endo's nurse told me about not throwing up on anyone after the RAI unless it was someone I didn't like! lol


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## Andros

Glitter said:


> I had the RAI on the 26th of January! I was diagnosed with Hperthyroidism back in Sept or Oct. My levels weren't very high and I was perscribed Methimizole. Had to have bloodwork done a couple times til my levels fell and then they advised the RAI. I was very thirsty too for a couple days. I had to stop the Methimazole 5 days before the RAI and my stomach was not happy the next few days. If I even thought I had to go I had to haul it to the bathroom quick. Since the RAI I have experienced nausea after some meals. I had a funny feeling in my throat but not really sore. The goiter/nodule feels different already.Still have a higher heart rate, and the shakes at times. I've had BP probs for a couple years and hoping this will go away. I'm really hoping I don't gain weight! Good Luck to you!


And good luck to you as well! Are you on thyroxine replacement yet?


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## Glitter

Is it normal to get a sore throat more than aweek after RAI and lasting 5 or more days? I can't figure out if it's the RAI or if I have an infection of some kind! This sore throat does seem diff than most I've had. Called my Endo today but of course all I can do is leave voicemail and who knows when they'll call back! Why can't they just let you talk with a real person?!:confused0031:


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## Andros

Glitter said:


> Is it normal to get a sore throat more than aweek after RAI and lasting 5 or more days? I can't figure out if it's the RAI or if I have an infection of some kind! This sore throat does seem diff than most I've had. Called my Endo today but of course all I can do is leave voicemail and who knows when they'll call back! Why can't they just let you talk with a real person?!:confused0031:


I would say that is a common occurrence. However, I am glad you called your endo about it because when it comes to one's health, guessing is never a good idea.

And by all means let us know if and when your endo returns the call.


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## Glitter

My Endo called me back the next day and advised me to see my GP since the sore throat should have been in the first few days after treatment. But I put it off and it went away. Haven't had any more nausea after the first 2 weeks either. My energy levels are not what they used to be and I'm a bit disappointed about that. My appetite seems to be better, but I haven't gained any weight. My heart rate is still up, 100 just sitting here! Tomorrow will be 3 weeks since treatment. Will go back for Bloodwork on the 26th. So far, It hasn't been a very bad experience, just another day in the Life...


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## Andros

Glitter said:


> Has anyone ever had probs with dry skin? My Arthritis doc noticed my dry skin and felt my thyroid. Then he had bloodwork done. Thats how it was found and my journey with Hyperthyroidism began.
> :anim_07:This reminds me of when my Endo's nurse told me about not throwing up on anyone after the RAI unless it was someone I didn't like! lol


Yes; horrible dry skin and no matter what I do or use, nothing works. I even take GlA and Omega III, VI thinking I need to work from the inside out. Nadda!

If you find something, let me know. Let us "all" know!

Are you still nauseous?? I hope not.


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## Avangelene

My heart rate is still up since the RAI treatment I had on January 27th. You are lucky you heard back from your doc mine hasnt called yet. I take beta blockers to control it. I saw my reg doc today and he said my blood pressure was way up and pulse was at 125. I am really starting to worry that it hasnt worked.

They say it takes between 8 to 10 weeks before your thyroid cells are completely killed off, but the fact that I started throwing up within 30 min of taking it makes me wonder how much actually stayed in my system. I hear so many conflicting things, Yes they threw up or had to run to the bathroom all the time. Other people say they just had a sore throat. I wonder if it has to do with how high your levels are when you have it done????

I just wish there was more info from all the medical websites about what systems could happen, not just the ones that say most people have this or that happen.

I hope your blood tests come back that you are on your way to wellness and I have gained about 5 pounds since my rai....ugghh I am hoping I am just bloated...hehe


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## rocky71220

Andros said:


> Good to hear from you. Please let us know what thyroxine replacement you will be taking and how much? And, how often will you be going for labs?
> 
> Should be at least every 8 weeks for a while.


I got my results today. All the nurse told me was that my T3 and T4 was low and my TSH was high. Not sure what that means. Go back March 2 to see the doctor.


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## Avangelene

Well I feel completely defeated. I got my blood work back and it looks like there has been no change whatsoever in my levels. I have an app on friday and well we will be discussing my options. I dont want surgery but I dont know what my other options are. Does anyone have any thoughts???


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## Lovlkn

Avangelene said:


> Well I feel completely defeated. I got my blood work back and it looks like there has been no change whatsoever in my levels. I have an app on friday and well we will be discussing my options. I dont want surgery but I dont know what my other options are. Does anyone have any thoughts???


Your options are to do another dose of the RAI or consider surgery or go back on anti thyroid meds.

What is your concern over having surgery?

I had surgery after 5 years on Tapazole it was a good decision and I immediately went hypo and began replacement.

I don't know your history * how long were you on anti thyroid meds and what issue did you have with them?

Did you also have an uptake scan and what % was the uptake?


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## Avangelene

My doctor has warned me that there are several risks to doing the surgery. I got so sick from the RAI that I dont know if I can go thru that again. I was vomiting within a short time of taking the pill, it makes me wonder how much actually got absorbed.

I was on methimazole for about a year and my skin turned yellow, it was having an adverse affect on my liver. I also had severe leg spasms and well I really dont want to go back on them if I dont have too.

As far at the uptake I did have it done if I remember correctly it was only like .03.

Did you have your whole thyroid taken out or just part of it? I have been looking at some info on a lumpectomy where they just take out the goiter and I wonder if that is a good/bad option. I have also read about people having RAI injected right into there thyroid. I wonder if that may be an option.

There just seems to be so much sparatic info on all of these options.

Thanks for your help.


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## Lovlkn

Avangelene said:


> My doctor has warned me that there are several risks to doing the surgery. I got so sick from the RAI that I dont know if I can go thru that again. I was vomiting within a short time of taking the pill, it makes me wonder how much actually got absorbed.
> 
> I was on methimazole for about a year and my skin turned yellow, it was having an adverse affect on my liver. I also had severe leg spasms and well I really dont want to go back on them if I dont have too.
> 
> As far at the uptake I did have it done if I remember correctly it was only like .03.
> 
> Did you have your whole thyroid taken out or just part of it? I have been looking at some info on a lumpectomy where they just take out the goiter and I wonder if that is a good/bad option. I have also read about people having RAI injected right into there thyroid. I wonder if that may be an option.
> 
> There just seems to be so much sparatic info on all of these options.
> 
> Thanks for your help.


I had my entire thyroid removed 5 years ago and have felt fantastic ever since. The problem with only having a portion removed is you may very well remain hyper so total removal is a better option and then going onto replacement hormones which will keep your thyroid levels constant.

There are risks to any surgery. The most serious possible risks of thyroid surgery include: 1) bleeding that can cause acute respiratory distress (rare), 2) injury to the recurrent laryngeal nerve that can cause permanent hoarseness,(rare) and 3) damage to the parathyroid glands that control calcium levels in the body, causing hypoparathyroidism.(rare). If they damage the parathyroids usually a course of high volumes of calcium can remedy the situation.

While a complication can occur in any surgery if you choose a qualified surgeon the risk of such complications can be greatly reduced. Look for a surgeon who does 3*5 surgeries per week and ask pointed questions about their complications rates.

It doesn't sound like your uptake was enough to do anything for you. Have you considered getting a second opinion?


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## Andros

rocky71220 said:


> I got my results today. All the nurse told me was that my T3 and T4 was low and my TSH was high. Not sure what that means. Go back March 2 to see the doctor.


Rocky.................what was the outcome of your doctor's visit on March 2? Waiting to hear from you?

Hope they did antibodies' tests and put you on thyroxine replacement?


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## Andros

Avangelene said:


> My doctor has warned me that there are several risks to doing the surgery. I got so sick from the RAI that I dont know if I can go thru that again. I was vomiting within a short time of taking the pill, it makes me wonder how much actually got absorbed.
> 
> I was on methimazole for about a year and my skin turned yellow, it was having an adverse affect on my liver. I also had severe leg spasms and well I really dont want to go back on them if I dont have too.
> 
> As far at the uptake I did have it done if I remember correctly it was only like .03.
> 
> Did you have your whole thyroid taken out or just part of it? I have been looking at some info on a lumpectomy where they just take out the goiter and I wonder if that is a good/bad option. I have also read about people having RAI injected right into there thyroid. I wonder if that may be an option.
> 
> There just seems to be so much sparatic info on all of these options.
> 
> Thanks for your help.


I did not realize you got so sick from swallowing the radioactive material. You may not have gotten the full dose.

Personally, I think surgery is the best option so you won't always wonder if you had cancer or not. Just my humble opinion. They send the gland to pathology after it is extricated.


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## rocky71220

Andros said:


> Rocky.................what was the outcome of your doctor's visit on March 2? Waiting to hear from you?
> 
> Hope they did antibodies' tests and put you on thyroxine replacement?


I am now hypo and they put me on .05 mg of levothyroxine. I go back on April 14 to get my thyroid levels checked again. I will post those results. Thanks so much.


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## Andros

rocky71220 said:


> I am now hypo and they put me on .05 mg of levothyroxine. I go back on April 14 to get my thyroid levels checked again. I will post those results. Thanks so much.


Very excellent; 6 to 8 weeks for labs is excellent. Keep us up to date on how you are feeling.


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## Avangelene

So I went to the doctors again today since my levels havent changed and its been 4 weeks since my RAI I am back on tapazole. My doctor says I have to wait 6 months before I an either try RAI again or they are going to do a Lumpectomy and take out the goiter.

Just wanted to let you all know where I stand.


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## Andros

Avangelene said:


> So I went to the doctors again today since my levels havent changed and its been 4 weeks since my RAI I am back on tapazole. My doctor says I have to wait 6 months before I an either try RAI again or they are going to do a Lumpectomy and take out the goiter.
> 
> Just wanted to let you all know where I stand.


Oh, boy............you don't stand good. What a darn shame! I am so sorry!

Have you considered a second opinion?


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## Avangelene

Well I live in colorado and this guy is one of the best in the area. So I didnt consider a second opinion, but now since you said that maybe I should. I truely hate the way that the tapazole makes me feel.


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## Andros

Avangelene said:


> Well I live in colorado and this guy is one of the best in the area. So I didnt consider a second opinion, but now since you said that maybe I should. I truely hate the way that the tapazole makes me feel.


What is best for one is not necessarily best for another. If you can, I think another opinion would be in line here. Let us know.


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## Glitter

Avangelene, I'm so sorry that things didn't work out well for you. I had mine done on January 26th and just knew I would throw up but was happy that I didn't! I think thats what happened to you. It made you sick before it could do any good.:sad0047: Rocky I'm glad things seem to be working out for you! Thanks to the Moderators for all your help!
I went back for bloodwork Feb 26th and my T4 is .94 but my TSH is 5.07 and from what I researched that means I'm already Hypo. 
I'm @5 weeks now and haven't gained any weight! yay! My heart rate is 103 @ rest, my BP was 129/79 which surprised me cause I forgot to take my meds last night. I would love it if my BP stayed down by itself! Very mean and grouchy tho,nerves bad! Still have the dry skin, losing hair and hair seems dryer now. I use the walmart brand of Olay Regenerist on my face. Equate Daily Regenerating Serum. It's the only thing that lasts very long and it's not greasy and shiny on your face. But the rest just has to itch and burn cause that is $12 a pop for a little bottle even in the store brand!
Do you think the doc might wait til my 8 weeks to put me on something? Only 4 weeks and already Hypo. Do you think my levels of TSH might go higher still?


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## Andros

Glitter said:


> Avangelene, I'm so sorry that things didn't work out well for you. I had mine done on January 26th and just knew I would throw up but was happy that I didn't! I think thats what happened to you. It made you sick before it could do any good.:sad0047: Rocky I'm glad things seem to be working out for you! Thanks to the Moderators for all your help!
> I went back for bloodwork Feb 26th and my T4 is .94 but my TSH is 5.07 and from what I researched that means I'm already Hypo.
> I'm @5 weeks now and haven't gained any weight! yay! My heart rate is 103 @ rest, my BP was 129/79 which surprised me cause I forgot to take my meds last night. I would love it if my BP stayed down by itself! Very mean and grouchy tho,nerves bad! Still have the dry skin, losing hair and hair seems dryer now. I use the walmart brand of Olay Regenerist on my face. Equate Daily Regenerating Serum. It's the only thing that lasts very long and it's not greasy and shiny on your face. But the rest just has to itch and burn cause that is $12 a pop for a little bottle even in the store brand!
> Do you think the doc might wait til my 8 weeks to put me on something? Only 4 weeks and already Hypo. Do you think my levels of TSH might go higher still?


I would call the doctor and press for an Rx for thyroxine. There would be no earthly reason to let you get even more hypo than you already are. That is my humble opinion.


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## Shefromsea

I thank all of you who have posted. I've chosen RAI for my Grave's that I was diagnosed with 2 weeks ago. You place hope at the end of the tunnel.

The other day I called my Ecco and left a message * got a call 2 hrs later and was told NOT to leave messages * to use the option that sends the phone call directly to him. That makes me feel better while I wait for my appt.


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## Lovlkn

Shefromsea said:


> I thank all of you who have posted. I've chosen RAI for my Grave's that I was diagnosed with 2 weeks ago. You place hope at the end of the tunnel.
> 
> The other day I called my Ecco and left a message * got a call 2 hrs later and was told NOT to leave messages * to use the option that sends the phone call directly to him. That makes me feel better while I wait for my appt.


I noticed this is your 1 and only post * I don't know your story but am curious as to why you did not consider giving anti thyroid medication a chance to work. Did your doctor even give you this option?

Can you provide some history.


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## Shefromsea

I've gone from hypo to hyper. I work as an emergency dispatcher. Dr gave me 3 options * RAI * surgery * try to balance by chemicals. I have watched my mother deal with a thyroid that can't decide if it is going to work or not for over 30 years.

Surgery is not an option due to the possibility of injury to vocal cords. My voice is my job.

My body is going to kill my thyroid * would rather have everything done at one time, get stabilized and enjoy the rest of my life. This is a decision that I made years ago, watching my mother.


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## Andros

Shefromsea said:


> I thank all of you who have posted. I've chosen RAI for my Grave's that I was diagnosed with 2 weeks ago. You place hope at the end of the tunnel.
> 
> The other day I called my Ecco and left a message * got a call 2 hrs later and was told NOT to leave messages * to use the option that sends the phone call directly to him. That makes me feel better while I wait for my appt.


When is your RAI? Your endo sounds awesomne! Welcome!


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## Shefromsea

Not sure when RAI will be * Endo is having to refer me to a Dr at the hospital that does them. He is trying to get me in for evaluation this week with the RAI happening within the next 2 weeks.


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## Lovlkn

Shefromsea said:


> I've gone from hypo to hyper. I work as an emergency dispatcher. Dr gave me 3 options * RAI * surgery * try to balance by chemicals. I have watched my mother deal with a thyroid that can't decide if it is going to work or not for over 30 years.
> 
> Surgery is not an option due to the possibility of injury to vocal cords. My voice is my job.
> 
> My body is going to kill my thyroid * would rather have everything done at one time, get stabilized and enjoy the rest of my life. This is a decision that I made years ago, watching my mother.


I hope you realize that with RAI the thyroid can take years to die off and you may still remain quite unstable. Good luck to you, it sounds like you are comfortable with your decision and have done extensive research.

Do you have a Graves diagnosis?


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## Andros

Shefromsea said:


> Not sure when RAI will be * Endo is having to refer me to a Dr at the hospital that does them. He is trying to get me in for evaluation this week with the RAI happening within the next 2 weeks.


You have had plenty of experience watching your mother; I am sure of that.

Please let us know when this will take place. What works for one does not necessarily work for another. Therefore, this type of decision is a personal one.

We are here to support you no matter what route you chose to take w/ this. To be honest with you, the best choice would have been to have a healthy thyroid.


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## Allison Gassett

Hi. I was diagnosed with Graves disease with multinodular goiter, and some slight problems with my eyes. I have taken the RAI treatment a little over a week ago now. I have had no symptoms or problems my I saw my endo. and I don't see him again for another 4 weeks and do blood tests then. I will continue to post updates.

Allison


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## Lela

I was diagnosed with Graves disease two years ago and been on PTU ever since. I was acheduled to do RAI this Thursday. Thank you for the posts.... It calmed my nerves sooo much since I could not find anything online after the treatment.... I will keep u posted


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## Andros

Lela said:


> I was diagnosed with Graves disease two years ago and been on PTU ever since. I was acheduled to do RAI this Thursday. Thank you for the posts.... It calmed my nerves sooo much since I could not find anything online after the treatment.... I will keep u posted


Please do and welcome to the board!! Are you having the RAI this Thursday, Aug.,12???

Good luck and do let us know.


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## GD Women

Good luck with the RAI. I whizzed right through it with no issues. It was very uneventful event. You'll be ok.


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## Lela

Hi

My appointment today is at 5pm.... very nervous since I do not know how I'll feel afterwards... thank you for the support

hugs6


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## Andros

Lela said:


> Hi
> 
> My appointment today is at 5pm.... very nervous since I do not know how I'll feel afterwards... thank you for the support
> 
> hugs6


How did it go, Lela??? Are you feeling okay? Hoping to hear from you soon!


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## ayr21

Thank you for sharing your experiences. I've recently been diagnosed with GD and am still on atenolol and methimazole. I meet with endo nexy wk to scan my thyroid and look into RAI. Thanks for your step by step thoughts. I'm wondering how long you had to be isolated and if you were still able to live in the same house as your husband??? We have a small 1 bedroom house with 1 small bathroom.


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## Andros

ayr21 said:


> Thank you for sharing your experiences. I've recently been diagnosed with GD and am still on atenolol and methimazole. I meet with endo nexy wk to scan my thyroid and look into RAI. Thanks for your step by step thoughts. I'm wondering how long you had to be isolated and if you were still able to live in the same house as your husband??? We have a small 1 bedroom house with 1 small bathroom.


Hi and welcome. If there are no children, pregnant women or pets; 72 hours should be sufficient. You would have to double-flush commode and do not share eating utensils.

One of you will have to sleep in another room for that duration. No hugging! Wah!

However, the rules always change so if and when you have RAI,they should provide a print out of instructions for you. If they don't, please ask for one.


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