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  • Anonymous
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    Post count: 93172

    Hi airmom,

    There is a third option as well, the anti-thyroid drugs (ATDs), and unless your doctor has a specific reason for you to avoid them, you should be able to consider that option as well. They can offer you a temporary period of remission, which means you’d still need to choose between RAI or surgery eventually, but some people have achieved years’ worth of remission, so that is a consideration.

    At LEAST (again, if there’s no medical reason why you can’t take them) ATDs can get your levels under control and allow you some time to consider these other two options while you’re feeling a little better. It is very hard to make a decision when you’re hyperthyroid, and I do think it’s wise for you to check in with other people and get their opinions. Remember, however, that the final choice of treatment (barring any medical conditions that preclude you from choosing one or another) is YOURS. I believe it has a lot to do with a successful recovery, being part of the decision-making process in your own treatment. It also helps you understand what you can expect, as you do the research on the treatment options.

    I chose RAI for myself, because I have an aversion to surgery and I like to avoid it at all costs.

    Lots of people choose surgery because they have an aversion to radioactive materials.

    Remember, thyroid cancer patients have the surgery and then they receive a dose of RAI that can be 10 to 20 times what we get, and even that is considered therapeutic.

    In the end, they both do the same thing (remove the thyroid), but they do it in different ways, and they have different timelines.

    Obviously, when you leave the OR, your thyroid is gone (well, most of it – they usually leave a little bit to protect the parathyroid glands, which are attached to the ends of the “wings” of the thyroid and control calcium levels in the body). When you take the RAI, you need to wait a while for it to do its job — and you have to hope that your dose was right for you. My initial dose was just a little bit too low, so I had to take another dose about 18 months later. I would’ve preferred to have it finished the first time, but it got done eventually so I am grateful for that. It is very rare for someone to need a second dose, by the way.

    If you choose RAI, have a very frank discussion with your doctor and the doctor who chooses your dose, to make sure they agree with you on your dosing goal. Some doctors believe they can give you “just enough” to put your thyroid back in the normal range without destroying it. I believe that’s a fantasy, but that is MY OPINION. The Graves’ antibodies will attack and stimulate any remaining thyroid tissue, so I believe we’re always at risk of having hyper episodes while our thyroid still functions.

    Surgery carries risks of nicking the vocal chords and, possibly, messing with the parathyroids which can result in lifelong monitoring of calcium levels as well as thyroid levels.

    RAI can temporarily worsen eye symptoms, if you’re having them, but if you take Prednisone in a short course of treatment surrounding the RAI (a week or two before & after), it has been shown to produce NO worsening of eye symptoms. However, Prednisone carries its OWN risks.

    As you can see, the whole picture is rather complicated. It’s hard to quickly make a pro/con list of each treatment. It’s good to get as much information as you can — either by searching through the posts here, or by getting one or two of the books recommended by the NGDF. More information is ALWAYS better, but do make sure you’re looking at accredited, medically sound information. There is a lot of fear-mongering out there on the internet, so make sure you’re not talking with people who are simply trying to sell you something.

    Come back often, we’ll be here for you throughout! Please remember there is NO quick fix to Graves’ Disease. You will be wandering the mine field for a while. Accept it. You’ll get to the other side, I promise. We will help.

    ~Ski
    NGDF Assistant Online Facilitator

    Anonymous
    Participant
    Post count: 93172

    As Ski said, we’re all here for you. We’re all in different stages of Graves and each has experiences/opinions to share. I was diagnosed three years ago, went through just over a year on Tapazole hoping that I would be among the small percentage that would go into remission. That didn’t happen. I chose RAI last October and went through the hypothyroid phase before the synthroid was administered. I was pretty sick at that point but slowly my health is coming back.

    Some of my posts have been supportive of others, some have been pretty frantic with wondering ‘what the heck is this now?’ Always there’s been someone listening. You are hyperthyroid right now, it’s hard to think but you don’t have to make an immediate decision. Read, discuss and learn as much as you can about hyperthyroidism and the possible treatments. Every time you think of a question write it down (our memories are shot at this point) and ask your endo. Remember, you’re the consumer. Take your partner or someone you trust to your next appointment so the he or she is hearing what the doctor is saying too.

    Good Luck, and come back often.

    Anonymous
    Participant
    Post count: 93172

    Hi and welcome. I decided after 3 years of ATD to have surgery. I like you was very confused and nervous about both of the other options. It took me a really long time to decide to have surgery. I was nervous about the RAI. I weighed both and surgery won out. I am glad that I decided to go with the surgery. This is what worked for me. The first few months were tough getting use to this scare on my neck and feeling exhausted. It took a while to get my levels in check. I was very lucky had no other problems from the surgery other than the normal we have when our thyroid is gone. I have to say I went to a surgeon who specializes in thyroids. I did not go to a general surgeon as I was told by my endo that you should go to the best. If you decide this is the route for you I would recommend the same doing a little research. They say it cuts down the risks of problems if they speciailize in this area.

    We are all different and have to make the decision for ourselves. This is what was best for me but may not be what is best for you. I think ultimately in the long run we all seem to be happy with the end result. We are on our way to recovery and living a normal happy life.

    Katie

    Anonymous
    Participant
    Post count: 93172

    I was just told that I have Graves Disease and am a little dazed and confused. My endo presented me with my options and don’t know which way to go. My family wants me to do the surgery, I can’t decide which way to go, surgery or RAI. Can someone give me pros and cons of each???

    Anonymous
    Participant
    Post count: 93172

    Thanks for everyone’s responses to my questions. I have 1 more day in which to respond to my endo with the decision. I am leaning towards the surgery instead of the RAI. It seems to be the hardest decision I can remember making. Still feel unsure of it all, but I guess that just comes with the unknown. I’ll just have to hang in there and take it as it comes.

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