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Confused and scared about RAI for Graves Diseases
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Confused and scared about RAI for Graves Diseases

Hi All,

My endo wants me to have RAI to get rid of my graves disease. I have IBS and Asthma too and would also like to get pregnant in the future. My eyes are not good generally and fortunately I do not have Graves eye's disease, but do suffer from the general symptoms - sensitive to light, double vision etc. I would like a permanent option for this disease and am thinking of discussing surgery as an option. I have been told if you have RAI with existing eyes problems, then this could get worse. Please can you share your experiences with me about RAI or surgery for Graves. Many thanks.
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301 Comments Post a Comment
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1102308_tn?1257810248
first off rai doesnt rid u of graves..u will always have the disease..it will only take care of the thyroid..i myself amnewly diagnosed...on methimazole and exploring options....let me know what u decide...
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Avatar_n_tn
going to be on neomercazole for the next few weeks to try and see if my levels will come down. my endo would prefer me to have rai over surgery, but i am not too convinced right now. how are you coping?
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773755_tn?1328123377
my aunt had it and is satisfied with it; the result of r.a.i. (70%) is hypothyroidism - in which case probably tablets permanently. i understand the hypothyroid condition is more manageable than hyperthyroid condition.

i think surgery only if very severe and risky hyperthyroidism - because it is a drastic procedure. removing thyoid also means that with it goes it's auto-immune function. my cousin had it and is quite thrilled with it - because her graves' was way out of control. either way - hyper or hypo - you're on tablets.

see how you go with the 'zole - you need to be on it anyway (for your hyperthyroidism, and pre- any r.a.i. treatment).

if you get r.a.i., wait 6 months before getting pregnant

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Avatar_f_tn
I had RAI for uncontrollable Hyperthyroidism and Graves in June 2008..
Graves antibodies NEVER go, they just go 'dormant'
Surgery was not an option for me as this is what I wanted at the time.

My levels are good and if I had to have RAI again, I most definately would.

This is coming from someone who had Thyroid Storm 3 times in 2 weeks, lived with ambulance trips 3 times a week, took MMI (methimazole) for 12 months, lived off beta blockers as my life depended on it, have a heart murmur from birth, have mitral and tricuspid valve regurgitation (weakened valves).

No-one can tell you what treatment to have.
If you can manage the Graves with meds...Great!
But if you cant , weigh up all the pros and cons of both RAI and Surgery before you make any desision.
There are side effects on both sides but you can also step out into the street and get run over by a bus too.

RAI isnt all its made out to be......you dont glow in the dark and you dont end up like a leper as most people tend to treat you.

You do what you think is best.
Research all you can before making a desision.

I say it as I see it..............

RAI gave me back my life.
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Avatar_f_tn
Forgot to mention.......

I have not been on beta blockers since RAI and feel great!
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1144849_tn?1395458766
Hi guinessthepitbull, I am sure many people are happy with their RAI treatment. My Doctor wanted me to have RAI or surgery. I opted to just go on Methimizole while I research the options. I have chosen to NOT have the RAI, and not have surgery unless one of my nodules becomes suspicions for cancer. This is just My personal choice.  You will find advocates for either side in these forums and everybody's situation is different so you have to decide what is right for you have you have all the facts.

I encourage you to read as much as you possibly can about RAI and how it actually works.  The process does indeed destroy thyroid tissue and alleviate symptoms for many people, however the processed does kill other tissue in the body where iodine my collect. There is also danger of stomach cancer at 10 years after RAI procedure,  I am by no means an expert but this is what I have read. I would recommend you study the Mayo Clinic web sites and the various thyroid websites and books available.  

Be sure you understand what all your blood work means and ask to be tested for Iodine to see what your level is. In many cases people with Hashi or Graves are deficient in Iodine and there has been great success with Iodine/Iodide replacement there my by Dr Browstein,  He has many videos and informative stuff on his web site https://www.drbrownstein.com/homePage.php  I have not worked with this guy but I have read his book on Iodine.  I don't mean to preach but I encourage you to be as informed as possible. I got very little explanation from my own doctor and the people in this forum have been wonderful in helping me learn.

Good luck

McMIllan
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393685_tn?1325870933
Yes - I agree - this is totally a personal choice and as said - the most common protocal is RAI - for Graves.

I had RAI - and yes - I did find a better outcome, but it took a very - very - long time for me - after RAI - to get well. I also have a very similiar situation as Smilerdeb Grave's episodes.

So - was RAI - right for me. I still can not way that out. I was storming so bad prior to it - I seriously could have stroked out - but I suffered pretty hard after with hypo-he// too.

One thing - looking back after 7 years of reading and researching to get well - I wish I would have taken the time to research all there was about Grave's disease before going through the doctor's orders. They are there as professionals to be our health care providers - but they too are only human and "learned" what they are taught.

It so vital to really be your advocant for your health and be able to talk over everything on a mutual level or as a team with your providers.

Good Luck and keep us in the loop on what you decide
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Avatar_f_tn
I am suffering from Graves, yet I am afraid to get the RAI as suggested by my endo.  Cancer runs in my family! Help!
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1636387_tn?1300243349
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 l;ooks like a have a huge adams apple, which is crazy cause I'm a girl, My skin is so bad, my hair is falling out, everyday I feel like I'm gonna have a herat attack, I am on propalanol 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 desicion for RAI?  
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Avatar_m_tn
Hi Mary, it's been a few months since your RAI. How is it working for you? I have Grave's disease for about 5 years now but symptoms are going on and off. My doctor has been suggesting RAI for the past two years now but I'm very hesitant. Did you gain weight? Any side effects?
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Avatar_f_tn
Hello,

How are you doing now post rai? I have Graves and am going in in Sept 5th. Were you able to go to work after the three day period after RAI.

Thanks
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Avatar_f_tn
Hello,

Well I decided to do RAI, as I have Graves. My levels have been fluctuatingtoo much lately and my body gets weak and fatigued. My two friends did it and feel much better after a few months. I di want to get the book "Life Manual for Living with Graves Disease". I go in 11 days.
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Avatar_m_tn
I was diagnosed with Graves in January 2012. Now, that I'm aware of the symptoms, I believe I've had Graves for about a year and a half prior to being diagnosed. I'd been back and forth to the ER and no one could tell me what was wrong. In May 2011, I was admitted to the ER because the entire left side of my face went numb, I had stroke like symptoms. I was in the ER throwing up for about 12 hrs and still, no one could tell me what was going on. My gyno recommended that I see a endocrinologist because my neck was swollen. I thought he didn't know what he was talking about but he was right. When I was tested, my levels were at 694 which (I was told) is extremely higher than normal. Because my levels were so high, my heart was constantly beating, as if I was on a treadmill. I've lost about 40 lbs, my eyes have started buldging. At night, my eyes hurt really bad and causes me to have migranes (migraines). I've been labeled as having severe graves disease and I may pass out at any minute. I too, feel as though this has taken over my body, it's like a foreign object. My endocrinologist recommends r.a.i and I am terrified of what I feel is, unknown. Hypothyrodism runs in my daddy's side but no one has Graves. I feel so alone with this .. I've become totally dependant on methimazole, when I don't take my pills, I'm an emotional wreck. Right now, I'm taking 4 methamizole pills a day, 2 beta blockers and some cholesterol mix 4 times a day. I am 28 years old and I have been healthy all of my life. I want to get better but all of these pills are driving me crazy. I do feel different when I take the medicine but my levels are still really high. I just started seeing a opthamologist, he stated he wants to watch me closely. I've had 3 appointments with him within a week and a half. I work full time, I am a mother of three and a wife. I don't have time to be sick .. lol:) literally!!!
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