A Personal Account:
The following email was written by Jody, a fellow victim of Radio Active Iodine, in response to a question on a Support Board regarding Graves Disease. It sounds like you may have found a wonderful doctor who is going to encourage your involvement in your care! That is a huge benefit!
I’m not going to pull any punches. I think I told you my tale of Radio Active Iodine, not to long ago (shortly after your storm I believe; it is in the archives). I have had thyroid storms before being diagnosed with Graves Disease; it is what eventually led to my diagnosis. (From now on I will be referring to Radio Active Iodine as RAI.). Once I got to my first endocrinologist, she gave me my choices, surgery or RAI. She had us watch a thyroid video which talked about all three treatments available; but in her opinion I was way to sick for ATD’s. I needed something permanent right away. Well I was like you; no way, no how, NO.
SURGERY! I wasn’t going under anyone’s knife and take the chance I wouldn’t be able to talk again. So this wonderful video (a Time/Life video and we all respect and like Time and Life so it MUST be true) told us how safe, successful and painless it all was. Just take this little pill and let it do all the work. The tape cautioned about the surgery, told you to make sure you find a surgeon who is well versed and does several thyroid surgeries a year (this is the absolute TRUTH). It talked about the ATD’s and how ‘inconvenient’ they could be because one of the problems with us is that we don’t always remember to take our doses when recommended or something along that line. ATD’s weren’t of concern to me because I was told I wasn’t a candidate for them. (Note here…I don’t always remember to take my pills now, at least not on time some of the time)
Well hubby and I decided to take the RAI over the surgery, it would be the *easiest* way for me and so the appointment was made. I didn’t have a computer then, so I never researched, only saw the video and read what the first endocrinologist gave me and trusted doctors in a blind faith sort of way. We went to Hamot Medical Centre in Erie, Pa. because our very large hospital wasn’t *allowed* to have that kind of dose of I131 on the premises. We went to the nuclear medicine department, into a room with a lead door. In walked the doctor, goggles on his face, a mask, and his head covered, his body covered in a very long lead apron, lead gloves up to his elbows, and something on his feet. The doctor was carrying a small lead container, with a lead lid, a test tube inside that had a lid and the little pill was in that. He handed me the lead container and told me to take the pill out and swallow it with the water he gave me. Oh…I forgot, my appointment was for 10 AM….I didn’t get ushered into a room until almost 11 because the pill was a special delivery at the appropriate time, because even at that hospital, it couldn’t be on the premises for an extended period of time.
It was at this time, after removing the lead lid off the container and while I had the test tube in my hand that I started wondering about things. But still I continued. I took that innocent looking capsule out of there and held it in
my hand and I started asking the nuclear doctor how *safe* this REALLY was, talking with my hands of course. He kept backing away, telling me to take the pill, pushed my husband out of the room and said TAKE THE DAMN PILL! Oh wow, I ticked off the doctor so I’ll take it and then ask my questions….<sigh>.
Anyhow, that was my morning on June 7, 1996. On July 7 I went to see the endocrinologist and had blood work done. All my numbers were still way to high and I was still hyper. It could take 2/3 months and I might need another dose of RAI in 6-12 months. Oh, my dose was 13.9 milicurries. I have been told that this is low, that this is high and that this is moderate so I have no clue. Well on July 21st or 26th (can’t remember exactly) it was all I could do to get out of bed and make it to the couch. I literally left the couch only one time all day to crawl upstairs, to go to the bathroom and get back down. Hubby got home from work at 3:40 and called the endocrinologist. She had him take me down to the hospital for blood work stat. She called back the next morning and said I had to start my hormone replacement immediately as I had crashed into hypo and even she had never seen anyone whose labs were still very hyper go to very hypo that quickly…less than 2 weeks. Well I started .075 synthroid that day; however, I don’t take it anymore. Because my TSH was in the normal range no one, not that endocrinologist, not the second endocrinologist and not my primary doctor EVER changed my dose until after I had gotten to this group and started learning. I then got my primary doctor to run the FT3 and FT4 and he increased it to .088 and left me. I was hypo, I was depressed, my hair continued to fall out, the weight continued to pile on, no one would listen to my symptoms or complaints. They said I needed Prozac (tried it for 6 weeks with endocrinologist number 2 for weight loss!) and didn’t like how it made me feel. I got off of it and will never take it again.
Last July I started with my new endocrinologist. She ran the labs, increased my Synthroid to .125. I went back in October and I told her that I wasn’t feeling much better and wanted a compound script of T3/T4 geared for me. Well we settled on Armour for over the winter because we are both in the snow belt, and should I need her there is always the chance of not being able to get to her office (she is in Buffalo, NY). I have done relatively well on the Armour. I am 100% better than I was before starting it though I am not 100%. I feel okay, but not great, really not even *good* but okay. My hair isn’t falling out; the weight has stabilized (though not leaving). I still have terrible muscle and joint pain. My feet hurt so badly in the mornings when I first get out of bed that I have tears walking to the bathroom and now my eyes are definitely gravesie and that scares me more than anything.
Okay…end of story. Would *I* recommend RAI to anyone? Not a snowball’s chance in hell. I would say RUN RUN RUN!!!! But then, I didn’t have very good doctors. They did not have any kind of clue on this disease. Nor were they very honest about what they did know. They give the information that they were taught in medical school I think. More and more doctors are becoming very very cautious about recommending RAI. Mine does not do it EXCEPT as a last resort, and then I believe it is for thyroid cancer (which we do have a greater chance of getting once we have had RAI). No one told me RAI would make eye problems worse or even create them in those who showed no signs of Graves Eye Disease at time of diagnosis.
Now, the jest of all this is that it is YOUR decision, and yours alone, not your doctors, not your partners, not mine nor anyone else in this group. You are doing the research and you are making an informed decision. If you do have
the RAI we are still ALL of us in this together and if/when the hypo stuff starts in a few years, we are still all here for you! I do know the fear of the storm, I do know about having the choking feeling that large goiters
present. I was rushed into RAI so didn’t have the
frustration, once diagnosed, that you have with how lousy you feel, though I and all of us know that lousy feeling :).
Do yourself a favor though and see the ophthalmologist FIRST. See one who is very familiar with Graves Eye Disease or TED or GED or whatever they want to call it. Tell him to be brutally honest with you about the eye disease. In my opinion the eye disease is scarier than Graves Disease. If the doctor says reconsider I hope you will.
Also, ask your doctor if she is open to T3 therapy, compound scripts and Armour thyroid. If she is a *synthroid* kind of doc please keep searching for another doctor. Print up the symptom list that we all worked on and that Terry worked hard to put together for us. If you need it, let me know. I keep it in a folder on my desk top. Take that list in and ask her whether she agrees or disagrees that these are ALL symptoms of Graves Disease. If she says that most of them aren’t, keep searching for a doctor for your own sake. That list does not mean that we all have all of those symptoms. It means that all of those symptoms are possible under the categories that they appear in.
I do have one question for you, if you are now hypo, have your ATD’s been cut back? If not, why? One other thing to think about is that you had thyroid storm not so long ago while on ATD’s. Find out from your doctor how dangerous RAI is going to be for another storm right now, and that maybe being on ATD’s and getting your numbers in the normal range and keeping them there for at least 6 months. Wouldn’t this be the safer thing to do?
I’m not trying to scare you, just to let you know my experience and what it continues to be because of RAI. I want my old life back, I want my mind back, which is much much worse with hypo than hyper, and the object of RAI is to make us hypo. If your doctor is going to go ahead with this and you decide that you want it, make sure she will monitor you closely for the rest of your life and that she will be available when you need her, (not in 3 months or 8 weeks, but when you need her). Also, remember this please, RAI is NOT a quick fix. There are no quick fixes with this. Two are permanent; one can lead to remission and a healthier you.The following email was also written by my friend Jody, a fellow victim of Radio Active Iodine, in response to a question on a Support Board regarding Graves Disease.
Knowing what I have gone through after having RAI in ’96, I would keep looking for a doctor who does not perpetrate the lies that RAI is safe and you will feel fine afterwards. Did either of these doctors tell you that RAI will probably cause the eye disease that can go along with Graves? Did they tell you to get a baseline of your eyes with an ophthalmologist who knows how to treat Graves Ophthalmology to see if you have any signs of it? If you do have it mildly now, did they tell you it will make it worse?
I am dealing with the eye disease now, almost 6 years after having RAI. When my first endocrinologist (now fired) first saw me she told me I was one of the lucky ones I didn’t have the eye disease and if I didn’t have it before RAI I wouldn’t get it. That is a lie! She also told me how safe RAI was and that 6 months after having it I would feel so good I would see just how sick I was. Another lie. She told me I could not do the ATD’s as my Graves Disease was too severe so I would have to have RAI or surgery and that surgery was so much riskier. Two lies here, even though I had been in a thyroid storm and it almost killed me. When a new doctor diagnosed me, put me on PTU and Inderal to settle my thyroid and heart rate down before RAI, I responded well to it. I also have met many people in the last 2 years who have had a much better fair with surgery, a SUB-total thyroidectomy, than RAI.
Did your doctors tell you that RAI would render you hypo and that hypo is worse to try to live with? I’m guessing not, because doctors who promote RAI lie about the safety of it and don’t listen to their patients when their hypo symptoms are so debilitating that getting out of bed is an effort. These doctors will tell you “your numbers look good, so it is not your thyroid…here take a Prozac”
I’m not joking about that either. I have fired 2 endocrinologists and a primary doctor because they did this. They left me in hypo hell until I hit rock bottom and finally started learning about this disease. I have found a wonderful endocrinologist whom I respect greatly. She has given me back some quality in my life and the ability to function. She also does NOT do RAI on anyone anymore, except in cases of thyroid cancer or as a last resort. She has heard over and over again symptoms that most doctors will not accept as thyroid related and now recognizes they are.
Did they tell you the rest of your life will be fighting not to be left in hypo hell and that you will struggle with huge weight gains and lots of hair loss, nails that won’t grow and lose their luster?
Did your doctors tell you that Graves disease is a disease of our immune systems not our thyroids but they are killing the messenger anyhow because they don’t want to take the time it takes to monitor and adjust ATD’s for the patient to attain remission and that the only way to attain remission is with ATD’s…though I have heard of some doing so through alternate treatments.
Am I cynical, you bet I am. I use to be a full time political activist working 60-80 hours a week; I was a part time amateur photographer and did my best work in the darkroom. I use to be able to race my grandson up the stairs to see who could get to the toilet first, and sometimes I would win! My involvement with politics is limited now to what I can do from home and with the media. I gave up driving last June so I don’t get out on my own much, and my mind is not so quick and sharp as it use to be and when one is taking on the politicians on any level, those two things are a must. My darkroom days are a thing of the past since I lost all night vision with the eye disease along with vision impairment with close-up work. I use to be very good at antique photo touchups and restoration, I can’t do that anymore. And now it is all I can do to pick up either one of my grandson anymore, they are 5 1/2 and 18 months.
And you know what, I am better now than I was 15 months ago before finding a doctor who will work with T3 and Armour, way too many doctors won’t go there. From where I was with bad doctors to where I am today, my life is 100% better, but it isn’t even close to what my life was like before RAI. Even hyper, I was good at what I did. So think long and hard, keep reading and keep learning. The ATD’s will buy you all the time you need, and hey, you just may get to remission in that time!
I would suggest you pick up a couple of books, The Thyroid Solution by Dr. Ridha Arem, a good overall thyroid book and Graves Disease; A Practical Guide by Elaine Moore. You can get them at amazon.com and barnesandnoble.com; I recommend Barnes and Noble.
I am also adding an extended symptoms list that was put together on the Graves Support Group. Most doctors will not attribute many of these symptoms to thyroid, their list is very small. Many gravesians had input to this list. No one gets all of the symptoms, but many of us have had far too many for any of them to be discounted.
Please, by my post don’t think I am into a pity party for myself or hate my life…that is far from the truth. I have a wonderful life in many ways, I have my family, a husband who is very supportive and I find ways to keep active in my community and am always doing something, just not something as physical, not like it use to be. I am just being brutally honest with you here.
Has anyone told you what receiving the RAI experience is like? Warning bells should have gone off for me then but they didn’t. If you ever want to hear about my RAI day, let me know, I will tell you. BTW it isn’t painful, not then. And anyone who says 2 months after RAI that they are so glad they have done it, hang on to your ATD’s and ask them again 18-24 months later before deciding. Different story then.
Anyhow, I really am glad you found us before getting I 131…it may make a difference in how you live the rest of your life.
Take care and keep reading, learning and asking questions.
Not Over Till The Fat Lady Sings 