[Bobbi]

#1074555

What does your endo recommend? What is his/her best advice for you? That is the first thing you need to focus on. If you have questions about that advice, get a second opinion from another doctor. There can be very good medical reasons why someone is told to do one treatment over another, and only another doctor can weigh those reasons.

Second. I had a tooth pulled a year ago, and the consent form I signed (which I read, unfortunately) contained words about complications that were very disturbing. They listed all of the possible dreadful complications that were even remotely possible. Trying to determine whether something is likely, or whether something is simply mentioned because they want to be able to say that we gave "informed consent" is difficult, especially when our emotions are in over-drive. So, the hard part for you is to put aside the fear and try to look at the surgeon’s words objectively. If he/she was saying that the surgery would be way more difficult than normal, and that there was a strong likelihood of complications, then that is serious and you need to pay attention. If he/she was saying that thyroid surgery (while hyperthyroid) is complicated and that you need to do X, Y, and Z (all of which are in your control) to minimize possible complications, that is something else entirely.

Listen to your heart, and your brain. And talk with your doctors. They probably will not be able to completely alleviate your anxiety, but they do have the experience and the level of education that you need to guide you through this process.

Also — one last point. It is totally common for our doctors to pull us off PTU or methimazole a week or two prior to RAI. The drug will interfere with the ability of the RAI to "work" optimally. So they stop it soon enough to allow any residual drug from remaining in the thyroid at the time of the treatment. They may start the PTU up again fairly soon after RAI. But stopping it prior is SOP.

I do wish you good luck with your decision

[elf]

#1074556

When my GP got my tests results that pointed to Graves (up to that point, she and I hoped that it was just thyroditis), she pulled her chair up to mine, stuck her face very close to mine, and said: "I strongly recommed RAI. You will have to take a hormone supplement for the rest of your life, but it’s a minor thing. Hormone is not a medication." You need to know what a generally hands-off this doctor is, to realize how unusual this gesture was for her to do.

I went home and researched about RAI, read all the scary stories of people whose RAI went badly.

Still, still, – my gut feeling was telling me that I preferred RAI. I read the remission stories of people on ATDs, and they scared the hell out of me, because of those relapses after periods of remission. I wanted to have another baby, and it was written everywhere that Graves flares up after giving birth. I had this vision of my eyes popping out after giving birth. I wanted a permanent solution, without living on eggshells, fearing remission, or crazy post-partum Graves. I didn’t want to cut myself open as in a surgery.

Researching on Internet, I saw that younger people took RAI much better than middle-age people. There was a report of post-RAI pregnancies (some as soon as 1 month after RAI) – the rate of complications in newborns was the same as in the general population. I don’t encourage anyone to have babies until a year after RAI, but that was encouraging news.

My endo wasn’t as personalbe as my GP, he was stuffing my hands with RAI pumphlets, but not actually saying what he recommended.

I would strongly encourage you to do what feels right for you, because nothing is worse than having regrets for the rest of your life.

[Hopeful23]

#1074557

Thank you both so much for your responsed. The surgeon made a comment that she thought i would respond well to the RAI cause my intake was 55% when they tested me to confirm GD. I just dont want to be the 1% that has to take calcium and vitamin b12 and synthroid and regret not tryin the RAI. Thee only reason my endo suggested surgery from the start was because I am jus so hyperthyroid and he is afraid of how ill feel from it, but from my understanding the surgery will release the same amount of hormone and ill still have to be on PTU after surgery. I just dont understand whats going on. Why would they keep me on PTU when I dont ahve a thyroid? Wouldnt that make me feel worse? Will it show when i go hyp or eutrothyroid? Ugh, this is so frustrating..plus im in college and my surgeon said ill need up to 3 weeks for recovery. I don’t have tht kind of time. With the RAI im on with my day so i just dont know…Ugh..too overwhelming for me to decide…

[Hopeful23]

#1019850

So, I had my surgery consultation yesterday and basically walked out of the office called my endo and asked to do the Radioactive option. My surgeon really said that my thyroid was so vascular and if I didn’t do everything i am advised to do I could face serious complications. I know its their job to really get the point across to us but that was a bit distrubing. My endo said if my thyroid levels make huge improvements then he will go ahead and do the RAI but I have to take more PTU and now Atenolol (beta blkr). I will be taken off the PTU for about two weeks if he decides this treatment is safe. I am so scared but not as scared as the surgery. My surgery is scheduled for the 27th so I guess i have up till that date to decide. Im just really confused as to what to do. My gut instinct is to NOT do the surgery. I have had 5 surgerys in my life and yeah I was anxious but never to the point where I was telling myself no, this isnt right, right now. I just need to know what you all think…I really take your opinions to heart so please let me know your thoughts and ideas ” title=”Smile” />

[Ski]

#1074558

Sounds like you need a break from deciding, Hopeful. ” title=”Wink” />

Right now I’d say you have a little time to think, and you also have some time to release the need to decide for a little bit. Do something that gets your mind completely off this, go to a special place, read in your favorite chair, whatever it is for you, but get away for a little bit and give your head some time to relax.

The reason you’d still want to have PTU after RAI is that it takes a while for the RAI to do all the damage it needs to do in order to make your levels normal, so in the meantime, you will need to maintain your levels with PTU. Once you no longer need it, you’ll begin to go hypo and your doctor will tell you to stop taking it. After surgery, believe it or not, our body can take up to six weeks to flush out the excess thyroid hormone, so PTU would still be useful for that period. Again, you will be having frequent blood tests to determine your levels (much more frequent than you’ve needed before OR will likely need again), but you will also be keeping careful track of your symptoms, so you may have a hint that you’re going hypo before you confirm that with blood tests.

It’ll be smartest to keep a close eye on your symptoms so that you get a good head start on managing the replacement dose after going hypothyroid, because (as with everything else about Graves’) that process can be time consuming, so if you get a jump on it, you can hopefully shorten the overall period of time it takes.

Look for small improvements as you go through the process. Remember that you’ve been beaten up pretty effectively, and it’s been across all your body systems. It will all recover, but it’s a lot for your body to accomplish, and it will probably go slower than you’d like it to. Hang in. You’ll get there.

[dmillanti]

#1074559

I had surgery on December 3, 2007. I was nervous, too. I elected to have surgery because I had Graves’, had nodules growing in my thyroid, and had gotten a set of suspicious biopsy results. My surgeon was frank with me as well. Boy am I glad I had surgery. It turned out that I had follicular cancer. Not that it turns out this way very often. The surgery was very easy, as was recovery. Almost no pain after the second day of recovery. I was swollen and felt like I had a lump in my throat for about a month, but other than that it was easy. I also had RAI as a backup treatment since I had a malignant diagnosis. The RAI was worse than the surgery. I lost my sense of taste for about a month or so. No pain, though. I would trust my endo’s decision. Lot’s of people have this surgery. It’s very common. If you have the option, you can research your surgeon to make sure you get the best. Good luck.

P.S. My firts full body scan showed no signs of cancer.

[DianneW]

#1074560

Hi Hopeful!

My heart is with you as you agonize over this decision. It would be so nice if you could "try on" these treatments and see what would happen before you had to do one for real and then live with the results. But you know what? A study has shown that most patients end up pretty satisfied with the treatment chosen, no matter which one it is. I think that once you make your decision you will feel a lot better, and that your outcome will be good either way. It’s just making that decision that’s giving you trouble.

I had radioactive iodine and it didn’t end up being a very easy road for me, mainly because I got so much more hyperthyroid at first and then became badly hypothyroid, and went through a long process where the doctor didn’t keep up with giving me enough replacement hormone for various reasons. I’ve talked to people who had surgery who had such an easy time with the whole Graves’ Disease thing in comparison that they truly have no idea why I make such a fuss about it. On the other hand, I know people who had RAI who are pleased with their choice, so I realize some people have an experience better than mine.

I chose RAI because I was a single working mom and didn’t want to take time off work for surgery, and didn’t want to take medicines (ATDs) that I didn’t understand, or to keep having blood tests to monitor how they were working. What a laugh all that is now! Because of the RAI I was so unwell that I lost more time from work than I’d have ever missed from the surgery, and I’ve been on more drugs than I would have ever used by taking antithyroid drugs.

I know that sounds discouraging. I’m only telling you this because it’s something I would really have liked to know was possible when I was making my decisions.

My difficulties following RAI can mostly be attributed to fluctuating thyroid levels, some of which could be avoided by a larger RAI dose and better medical followup. But some of the fluctuating levels go along with this treatment choice, for some patients more than others, and it’s impossible to predict ahead of time how long it will take. Patients should be told to expect this, because it’s not usually a comfortable time.

I had RAI thinking that I would be getting better in a few months, and that wasn’t a fair thing for the doctor to lead me to believe. With surgery that would have been realistic, but not with RAI. RAI is very safe, and very effective, but it’s not necessarily fast or easy on the patient.

Surgery is very safe in this day and age. Mortality rates are down to near zero, and the most serious complication can be infection, as with most surgeries. When vocal cord and parathyroid damage do occur, they are often minor and/or temporary. It’s much more rare to have severe hoarseness or the permanent need to take calcium, though that can happen. With experienced surgeons who perform this surgery a lot, it’s rare. If you’ve listened to what your surgeon told you about your particular case, you have a good sense about how your case compares to the normal case. It’s a decision only you can make.

It’s really a shame that there isn’t a choice we have that doesn’t have a down side. Still, I think once you make this decision you’re going to be happy.

All my best,

Dianne W

[caira111]

#1074561

Hi friends, I have heard that many Patient get thyroid cancer after their surgery. I was wondering are their any base of such rumor or not? one of my cousin is going for surgery and I am bit concern for him. any informative answer will be well appreciated

[Bobbi]

#1074562

I don’t know where you got your information, Caira, but it was wrong. Many people with thyroid cancer have their thyroids surgically removed, and usually they need follow up radiation treatment. But the surgery does not cause the cancer.

[npatterson]

#1074563

It is hard, no, impossible, to ever be totally sure that you select the treatment that is "right" for you. If you will e-mail me, I can send you a REALLY good article on thyroid surgery. nancyngdf@bellsouth.net.

[Author]

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