[Lady October 15, 2008 at 5:37 am Post count: 7]

#1020017

Greetings to the board!

I’m Lady and new here. I’ll skip over my symptoms and test levels, but suffice to to say that I have what polite company might refer to as "Graves Plus." I have to make a choice between RAI and thyroidectomy soon. I’m 56 – a year ago completely healthy, fit, petite and strong.

I was hoping those more learned than I would "spot" my thinking as I puzzle all this out loud. It seems few people opt for surgery over RAI, so maybe I’m missing something.

1. I’m very frightened of the overspill of hormones after RAI and the potential for atrial fib. I’ve had several bad bouts of Graves-related atrial fib and hormone saturation, or "thyroid storm" as I’ve heard it commonly called in CCU. With Graves, my heart is a veritible locomotive. Now I have to take really BIG beta medicine to brake that train.

2. My thyroid is estimible in its strength, and size, and I just don’t think one round of RAI is apt to do the trick. I’m a science kind of girl, always preferring a pill to a prayer, so this is where my reasoning may be screwy: I don’t know that one round of RAI won’t do it – in fact, I’m not really very knowledgeable. I just have a strong, indubitable, and inexplicable instinct that I’d have to repeat the RAI process multiple times, ending up in surgery when the docs throw in the towel.

3. The docs have consistently underestimated the dose of medication I need to even control symptoms – which is not a good sign they’ll get RAI dose right. Besides, I’ve read articles in the Journal of Nuclear Medicine, and it doesn’t seem like they’ve really nailed down RAI dosage, or isn’t an exact science, and/or there appears to be a range of different opinions.

4. I want the resolution to be a more precise. I’m aware of the potential problems with surgery, but it seems more precise than hit-n-miss trial-n-error RAI, and its messy, unpredictable aftermath.

5. Sometimes, only sometimes, I have a little trouble swallowing, and I want that completely resolved.

Am I reasoning okay, or is my thinking subject to fallacies and paranoia? Perhaps I’m twizzzlepating over this decision needlessly because my mind is all "mavericky" due to it being hyper. When your mind is racing in 50 different panicked directions, it takes a tolls on the confidence or clarity with which you make a decision.

Please me know your thoughts, and thank you for reading this. My endo won’t spend more than 90-120 seconds (literally) during an appointment – EVER. It’s going to take a pitchfork to corner him for some questions, but I keep failing.

Lady

[nmartel October 15, 2008 at 1:15 pm Post count: 2]

#1075707

Funny you should ask. I’m seeing my endocrinologist today. I had RI last year which worked, then my thyroid regenerated and I’ve been on a horrific rollercoaster ever since. Each month, I swing between severely underactive and severely overactive. What nobody told me prior to the RI is that one possible complication is eye disease. A couple of months after the RI, my eyelids began to swell and my vision diminished. I had to go on high-dose prednisone with all its side effects. Now, I’m going to have my thyroid removed soon!

[Lady October 15, 2008 at 4:07 pm Post count: 7]

#1075708

nmartel – thank you very much for that. I didn’t know thyroids regenerate. Also, I’ve read a little about eye problems from RAI but haven’t thought much about it because my eyes aren’t too bad. Were your eyes basically okay before RAI? Maybe you’re relieved to have surgery? Will your eyes get better?

Lady

[Peggy October 15, 2008 at 5:02 pm Post count: 3]

#1075709

WOW and I mean WOW. I wanted to talk about the same situation! I have extremely aggressive hyper with Graves with all of the eye involvement. My endo must have gone to school with yours, although he always adds that whatever my symptoms are have nothing to do with the condition. Anyway he has been medicating me since early 2005 (with varying levels) and it has not been very successful at control. I too have experienced the thyroid storm, and heart issues occasionally. He has held off on the RAI because a certain percentage of Graves patients with eye involvement experience worsening vision issues, etc. But for some reason now he thinks he wants me to do it. I have talked to the pathologist where I work, and researched it myself, and I think that the surgery is safer for me. The aftermath of the surgery sounds unstable as well. The combination of being so hyper with the worrying about the prospect of thyroid hormone forever after is not a good combination. Sometimes lately I wonder if I am experiencing what I want to call "panic attacks" when the profuse sweating begins, and I cannot for the life of me get to sleep for any length of time (at least not enough to do me any good). Are there other drugs to try besides the mainstay of tapazole? Maybe I need to do a little more research. Any comments? This board has helped me out tremendously before when I had questions.

[Lady October 15, 2008 at 6:49 pm Post count: 7]

#1075710

Yeah, Peggy – what’s with these endocrinologists pushing RAI like there’s no alternative? And what’s with doctors being so dismissive, incommunicative and autocratic? So your symptoms just happen to coincidentally coincide with a rather significant disease? That’s a chuckle. So he held off on RAI before because of concerns about your eyes, but he’s not concerned anymore? How does he explain his change of heart and willingness to take a chance? Somethun’s fishy here.

If my endo won’t talk alternatives, and why would he, he doesn’t talk to me at all, then screw him, I’ll go to the acclaimed thyroid surgeon in my area and see what he/she says. If I’m told surgery is contraindicated for some reason, well, at least the surgeon will have talked to me, I’ll know more, and I’ll rethink my strategy. Fact is, I suspect RAI would be just fine and dandy for me if my thyroid were less of a drama queen.

Sorry to hear about your eyes. Bummer. Seems like that would make it a harder choice – or well, actually maybe easier.

[mamabear October 15, 2008 at 7:23 pm Post count: 484]

#1075711

I am so not good at the giving information. I only know that I have graves disease and I was put on PTU and am doing ok. I was told to have RAI the very first time i was diagnosed though and I didn’t do it. I just wrote a fast post about this to someone else, you can find My post here.

I don’t know what to say to you all except researching is your best bet. Talk to people who have had the surgery and the RAI and see what they say. I know that in NJ all dr’s shoot for killing the entire thyroid when they do RAI so eventually you will have to depend on thyroid supplement when they become hypo.

I’ll try to find out where everyone went, there was a great team of people who was on the boards. I hope they come back soon.

[thrashersgirl October 15, 2008 at 10:32 pm Post count: 1]

#1075712

Hello, I am new here, I was diagnosed with Graves about three months ago. The doctor suggested to me to have a thyroidectomy, never even mentioned the RAI. I have a goiter about 4 centimeters. I had a biopsy and was benign(spelling?), thank God, I was so scared. I go back to the endo in 5 weeks, I have to keep taking the methimazole, and hopefully my labs will be allright, I just want to get the surgery over with! I have noticed so many people with scars on their neck and asked them about it, and they have had the surgery, no one said that it was horrible, just a sore throat for a while, but they are feeling much better after. I wish everyone the best!

[Anonymous October 16, 2008 at 12:56 am Post count: 93172]

#1075713

Hi all–I am new to this game too and have wondered why so few do opt for the suregery. But I can add just one bit of info on this. I have a friend who’s mother had graves and had the surgery many years ago, and her thyroid grew back too. She ended up having the surgery twice. So it seems to me that every single case is absolutely different and nobody really knows the answer.

[mamabear October 16, 2008 at 10:01 am Post count: 484]

#1075714

I have to agree with that cynna. I know that I have heard from bobbi and ski (girls from old boards) that have said that every single case of Graves is so different and that is why dr’s opt for something different for each one.

I was told the very 1st time i was diagnosed to do RAI and be done with it, i didn’t do that , i tried the PTU and it worked.

I know someone that did the RAI and is suffering with trying to get on the right dose of Synthroid now because now she is hypo and is so angry that she did the RAI.

I know someone who did RAI and is doing great.

SUrgery always comes with risks regardless of what the surgery is for so I think that might be dr’s don’t shoot for that first.

Graves is so dependent on the individual person.

Prayers for all going through this.

[Ski October 16, 2008 at 11:56 pm Post count: 1569]

#1075715

Yep, everyone is so unique ~ unfortunately, most doctors don’t take that into consideration at all, but another element to it is that we don’t know how our bodies will react to any given treatment either, so in a sense we’re all trying our best to get a good result. Sometimes the doctors confuse what they WOULD do with what they think we SHOULD do, and that’s really not fair.

I think the most important thing to remember is that thyroidectomy is a perfectly valid solution, and what matters most is that we are a participant in the choice, rather than a "subject." Doing the research and choosing for ourselves is SO empowering.

One small point ~ anyone may have trouble getting regulated, so blaming the method of treatment that began the process is a little shortsighted.

This is a complicated condition, getting regulated can resemble art more than science sometimes, and accepting that can be one giant step in the process.

OH I’m glad to be back! ” title=”Very Happy” />

[kim1981 October 17, 2008 at 7:49 am Post count: 1]

#1075716

When i first found out i had graves i was young and the dr wanted to give me surguy but all the stuff that could happen was to much.so i tryed the pills i hade to take 4 pills 3 times a day and for a wile i felt better then i had two kids and could not get back to the why i was so i sutdy the radioactive iodine treatment and i went with that and it destrod it but to me i feel a little better.i only have to do one pill a day.

[Lady October 17, 2008 at 4:07 pm Post count: 7]

#1075717

Thanks, guys. All of your thoughts have helped me locate my own.

It’s very reassuring to be reminded we’re participants in the decision and not subjects. You guys are right – we are quite unique. Since I have such strong instincts about my body, I think I’ll go with them. Maybe that’s what it often comes down to when you’re a complete novice about medical decisions.

I realize that regardless of whether I choose surgery or RAI, hypothroidism is in my near future. I’ve accepted that peaceably enough. Hypo simply has be less dangerous than my particular brand of hyper. (Not that I think anybody here would argue against necessary treatment.)

I’ve already carefully researched hypo, and picked out doctors who are most up-to-date re effective hypothyroid treatment, such as an openness to Armour hormones, just in case I develop a stubborn case of hypo. Besides, it seems to me both RAI and surgical treatments necessarily direct the thyroid in hypo directions anyway, so I figure where the thyroid lands on the hypo scale is largely a matter of fortune. That’s cool with me.

[katbug3 October 18, 2008 at 9:27 pm Post count: 1]

#1075718

The whole point of RAI over surgery is that it comes with less risk to the patient. Surgery is major…you are going under the knife. There are risks involved like infection. How about the surgeon damaging some other important part that is tangled up in there like your vocal cords?

If you are being scientific, you need to get a second and maybe a third opinion. I did. It didn’t make my decision any easier, but it sure helps to know that two doctors independent of each other agree on the tack to take. I am going to have to undergo RAI and I want to do it sooner than later. I am a young woman with children. My family depends on me. I am the glue around here, ya know?

Mayo clinic really was an excellent option for me. It was near my home (within a couple hours) and my insurance covered the visit (after co-pay). They confirmed that my doctor was following the expected regime for this disease.

The fact is that getting the medicine right is so subjective. It takes time. It makes you feel like a guinea pig. I know that I get tired of swinging from hyper to hypo symptoms. Regular blood testing and blood pressure testing really seems to help me. Everyone is so individual, though. I have some of the same fears about the RAI that you mentioned, but I am more afraid of what will happen to me (and by extension, my family) if I don’t get a grip on this problem.

I have been told by more than one doctor and numerous websites that surgery just isn’t our custom here in America. You may want to go to Europe.

There’s my two cents for what it’s worth.

[Ski October 19, 2008 at 1:36 am Post count: 1569]

#1075719

Just wanted to weigh in, since we spoke a little bit about thyroidectomy today at the conference.

First, all three of our treatment options are valid and effective. We each have our own reasons for picking one over another, but I think we need to be cautious about expecting that everyone would agree with our specific choice. Each carries some level of risk, so we’re just lucky to have three choices. Not all patients have that luxury.

I’ve said it before, and I’ll probably say it a million more times ~ I think that the single most important thing for us is that we are a participant in our care, and that we feel we have been allowed to make a fully informed decision. Once WE have decided what we’re willing to do in terms of treatment, I think we find a certain peace and we have a much better experience throughout.

Surgery is a valid option, and it can be done in the U.S. The doctor today reminded us that thyroid surgery is complicated, and is not typically within the repertoire of an ENT surgeon. You need to find a surgeon that does a lot of thyroid surgeries in order to keep your risk low. As the earlier message says, there are other important structures "tangled up" with the thyroid that need a careful, experienced hand to work around and avoid damage. So, given the proper pre-work, I think you can find a good surgeon and have a good experience with thyroidectomy. Ask the potential surgeon how many of these surgeries they do in a year (look for an average of at least 2 or 3 a month), and ask about their complication rate (percentage). If the surgeon refuses to answer, get thee to another doctor.

[nmartel October 21, 2008 at 8:42 am Post count: 2]

#1075720

If I had everything to do over again, I would have taken myself to the thyroid surgeon 2 years ago. I have been through so much and I just wish the doctor had listened to my desire back then. My surgery has been scheduled for Jan 20 (first available) so I’ll just have to hang tight until then.

From what I understand, the risk of the eye disease is greater with RAI. For that reason alone, I wish I had never done it!

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