[SueAndHerZoo]

#1059962

When I was first diagnosed with Graves 6 years ago and found that taking a tiny pill could make it all better, I was very relieved and balked whenever the endo would mention RAI or surgery. I was totally, 100% dead-set against it. I mean why would someone do something so drastically permanent (by either radioactive iodine or a knife) when it’s so simple to take a pill once a day? And then I went into remission and was very glad I didn’t do anything permanent.

Now, 6 years later, I’m totally rethinking that. I’m probably looking at this with a negative attitude since I’m symptomatic but the way I see it, the rest of my life looks something like this:

Slowly keep increasing dosage of Methimazole until you find the right level. Stay there as long as it takes and then start slowly tapering off Methimazole. HOPEFULLY go into remission for a year or two. Get slam-dunked again, start taking Methimazole and slowly increasing to find the right level. Hope to be able to wean off and go into another remission. Rinse and repeat.

But I’m assuming remissions don’t last forever, so do us non-RAI and TT patients ride this coaster for the rest of our lives? I don’t really want to be going through this (the awful symptom changes each time I increase or decrease the meds) when I’m in my 60’s or older. It’s hard enough now! And staying on Methimazole forever is bound to eventually hurt other organs, right?

So now I’m SERIOUSLY thinking about RAI because even though it might be a rough 4-6 months, after that I might find “normalcy” to carry me through the rest of my life. I guess now I’m looking for the horror stories by people who regret doing RAI so that I can weigh both sides more evenly. I am feeling fed up with my thyroid right now but I don’t want to look back in a year and yearn for these days when I could adjust the way I feel with meds. Maybe this is as good as it gets?
Sue

[Momof5]

#1179100

I have personally talked to at least 10 people who have had long term remission. Newer info is coming out to watch your TRab levels…and with negative TRab you can have successful long term remission. It may not be possible for everyone, but there are also several who take small maintenence doses of MMI or PTU and live happy, healthy lives.

[Kimberly]

#1179101

Hello – Hopefully, you will get some additional feedback here, but what makes this decision so difficult is that every patient responds a little differently to each treatment option.

We have an old facilitator here (James) who is in a 9+ year period of remission after 3 rounds of Anti-thyroid drugs, so it’s *not* necessarily a given that you will end up on a life-long rollercoaster if you continue to pursue remission with ATDs.

As Carrie noted, increased use of antibody testing prior to withdrawal of ATDs will hopefully lead to a larger number of patients experiencing extended remission on ATDs. And although the medical establishment generally recommends a “definitive” solution for patients who relapse, the latest medical guidance does leave the door open for patients to remain on low doses of ATDs longer term, if that is the patient’s preference.

We have many members here who have been happy with RAI or with surgery as their treatment options. But since you don’t get a “do-over” after either of these therapies, it’s important to make sure you have done your research and are comfortable with the risks before making a final decision.

You’ve asked the million-dollar question…I wish I had a better answer!

[adenure]

#1179102

Hi Sue,

My initial thought after I was diagnosed was to try for remission, but methimazole elevated my liver enzymes quite a lot (8 times the normal amount), so I had to stop taking it right away (7 weeks into treatment). PTU wasn’t recommended, so I had to choose between surgery & RAI and quickly since I couldn’t stay on methimazole. I opted for surgery and I am really glad that I did. I am glad that I don’t have to worry about suffering from hyperthyroidism again. I also look at the fact that surgery (and perhaps RAI- I don’t know) would be harder on the body as I got older. So, in a way, I think my push into a definitive treatment was a blessing in an odd sort of way. It’s not perfect by any stretch and I sure wish I had a healthy thyroid, but I was dealt the hand I got, and that’s okay. It could’ve been worse, there are worse things to deal with. So, my 2 cents is that RAI and surgery can give you your health back and do away with the possibility and worry of returning hyperthyroidism. I’ve read that returning bouts of hyperthyroidism tend to be worse, but I don’t know if that’s scientific fact or not.

[SueAndHerZoo]

#1179103

Momof5 wrote:

I have personally talked to at least 10 people who have had long term remission. Newer info is coming out to watch your TRab levels…and with negative TRab you can have successful long term remission. It may not be possible for everyone, but there are also several who take small maintenence doses of MMI or PTU and live happy, healthy lives.

Very good information and definitely food for thought. I will ask my endo about the TRab testing when I see him in two weeks. Thanks!

Kimberly wrote:

Hello – Hopefully, you will get some additional feedback here, but what makes this decision so difficult is that every patient responds a little differently to each treatment option.

We have an old facilitator here (James) who is in a 9+ year period of remission after 3 rounds of Anti-thyroid drugs, so it’s *not* necessarily a given that you will end up on a life-long rollercoaster if you continue to pursue remission with ATDs.

As Carrie noted, increased use of antibody testing prior to withdrawal of ATDs will hopefully lead to a larger number of patients experiencing extended remission on ATDs. And although the medical establishment generally recommends a “definitive” solution for patients who relapse, the latest medical guidance does leave the door open for patients to remain on low doses of ATDs longer term, if that is the patient’s preference.

We have many members here who have been happy with RAI or with surgery as their treatment options. But since you don’t get a “do-over” after either of these therapies, it’s important to make sure you have done your research and are comfortable with the risks before making a final decision.

You’ve asked the million-dollar question…I wish I had a better answer!

Two questions, Kimberly: does James mind you calling him an old facilitator? LOL And….. how will you be forwarding my million dollars? I prefer small bills if possible.

adenure wrote:

Hi Sue,

My initial thought after I was diagnosed was to try for remission, but methimazole elevated my liver enzymes quite a lot (8 times the normal amount), so I had to stop taking it right away (7 weeks into treatment). PTU wasn’t recommended, so I had to choose between surgery & RAI and quickly since I couldn’t stay on methimazole. I opted for surgery and I am really glad that I did. I am glad that I don’t have to worry about suffering from hyperthyroidism again. I also look at the fact that surgery (and perhaps RAI- I don’t know) would be harder on the body as I got older. So, in a way, I think my push into a definitive treatment was a blessing in an odd sort of way. It’s not perfect by any stretch and I sure wish I had a healthy thyroid, but I was dealt the hand I got, and that’s okay. It could’ve been worse, there are worse things to deal with. So, my 2 cents is that RAI and surgery can give you your health back and do away with the possibility and worry of returning hyperthyroidism. I’ve read that returning bouts of hyperthyroidism tend to be worse, but I don’t know if that’s scientific fact or not.

Yes, you are almost fortunate that you didn’t have to toil with a life-changing decision…..the Universe made it for you and thankfully it was a good one. I wonder if that’s true about each recurrence being worse because this is only my first recurrence but even though my numbers aren’t as bad as when I was first diagnosed, I feel worse and we’re having a hard time getting my levels to the right place.

Thanks for the feedback everyone. Would love to hear more pros and cons of RAI versus long term ATD.
Sue

[Kimberly]

#1179104

For me, the down side of long-term management with ATDs has been the frequency of doctor’s visits. When things have gone well, I’ve been able to space them out every 4 months or so. However, in the last year, I’ve needed frequent dosing adjustments, so I’ve had to pay for labs and office visits about every two months. (100% out of pocket, as my insurance won’t pay for anything Graves’ or thyroid related).

However, I have mild/moderate eye involvement, so I’m not ready to pursue RAI…nor am I ready to foot the bill for thyroid surgery. And I feel pretty well overall, so right now, I’m kind of in an “if it ain’t (too) broke, don’t fix it” mode!

[SueAndHerZoo]

#1179105

I agree, Kimberly……. the frequent trips to have blood drawn and then to the doc’s office really get old fast. I’ve been going once a month for a few months now and at one point he had me doing “every two weeks” for 3 sessions. The blood drawing station is quick and convenient but there is no fast or easy way to get to my doc’s office…. he’s way off the beaten path, and I ALWAYS have to wait for a very long time in the waiting room.

I guess I should consider that a trivial and minor downside but it does take a lot of time and energy that we don’t always have.
Sue

[Gabe]

#1179106

Hi Sue, you have asked the most fundamental question…. For me, I’m having TT on 5/31/13 even though I’m new to GD (January 2013) because I cannot tolerate the roller coaster, cannot tolerate the side effects from the ATDS/BB’s, and want to minimize the eye involvements I currently have. It’s not an easy decision and I’m blessed to have very good insurance and have found a great surgeon who performs over 300 TT’s annually. I’m menopausal and cannot deal with both of these at the same time. I doubt I would ever get to remission and don’t want to have RAI or TT later in life when surgery is more of a risk. Also with my eye involvement I’m relucatant to do RAI, however, my sister has Graves and had a very good experience with RAI and has never looked back and had zero issues with adjusting to her synthroid.

My best to you as this is not easy, regardless of the path you choose…
Karen

[SueAndHerZoo]

#1179107

Hi Karen. Good for you for taking control and taking action. Your reasoning sounds very valid and wise. I actually asked my endo about surgery last time (for some reason it seems less frightening to me than RAI) and he said that there are three very good surgeons at Yale but that he didn’t think any of them would do a TT on me because my levels aren’t that bad. And then he reminded me that there’s always RAI if I’m serious about doing something permanent.

Thanks for telling me about your sister’s success with RAI…. very encouraging.

I, too, have the thought that if I’m going to do something I should do it within the next few years because I’m sure it’s riskier and more uncomfortable the older we get. (I’m 56). I don’t know if I’ll have the physical or mental stamina to stay on the rollercoaster 10 years from now, or even 5 years from now.

Good luck, and please let us know how it goes!
Sue

[Raspberry]

#1179108

Sue, I hear ya many of these thoughts are on my mind too. I’ve decided I won’t have RAI, period, because of the eye risk given that I already have some problems. So that leaves surgery which is a no-go for me right now for many reasons. So that leaves, make the meds work or else for me! I can see a day in the future though when I might have the surgery if circumstances change. I’d still like to keep my thyroid if I can.

I have been awed and dismayed by the systemic level of medical incompetence regarding thyroids in particular I’ve encountered on this journey and discovered I was subjected to in the past when I didn’t know better. The idea of being dependent on a doctor being willing to prescribe me enough T4 and arguing over T3 while I have no thyroid is nothing I look forward to. Even if you find a good doc, they seem rare and can retire or move away. An example of the incompetence I’m talking about, I’ve now consulted three endocrinologists and not one of them chooses to do TRAB testing before attempting to take their Graves’ patients off the meds. And these are doctors of very good reputation in a big city. This kind of thing really really depresses me.

Sorry guys, guess I’m still in ranting mode. I’m sure good endo’s who keep up with the latest thyroid research exist out there somewhere, but they seem like leprechauns to me.

[Gabe]

#1179109

Hi Sue. I went directly to my PCP for the name of the best surgeon since my endo just wants to do meds for at least 12-18 months and I can’t and won’t. If you have good insurance and the inclination, get the names of those great Yale surgeons and just schedule a consult. Be ready because it took me 3 months to get an appt in little old Delaware. But it was enough time to make sure I wasn’t being impulsive, truly gave meds a chance, and did my research. I personally don’t believe they wouldn’t do a TT because of your levels (unless they are extremely bad). Then you would have a complete picture of the paths available to you.
Hope today is better for you!
Karen

[SueAndHerZoo]

#1179110

Gabe wrote:

Hi Sue. I went directly to my PCP for the name of the best surgeon since my endo just wants to do meds for at least 12-18 months and I can’t and won’t. If you have good insurance and the inclination, get the names of those great Yale surgeons and just schedule a consult. Be ready because it took me 3 months to get an appt in little old Delaware. But it was enough time to make sure I wasn’t being impulsive, truly gave meds a chance, and did my research. I personally don’t believe they wouldn’t do a TT because of your levels (unless they are extremely bad). Then you would have a complete picture of the paths available to you.
Hope today is better for you!
Karen

That’s a really good idea, and maybe I’ll do that, but right now the idea of RAI is sounding better since I have no eye issues. And if I had RAI and it didn’t work I could always then go for surgery, I think?

I just called my endo to see if I could move up my bloodwork and appointment. It was scheduled for May 31st but even after being on an increased dose of Methimazole for 18 days my heartrate is still high and I’m crawling out of my skin. She moved me up to next Thursday so I’ll have blood drawn Monday. Can’t wait to see what my levels are and my biggest fear is that Doc will say “Gee, they’re not bad enough for you to be having these symptoms.” I think he may get to see Graves Rage if he does!

Then again, surgery sounds good too. Once and done. Riskier, but more effective? As you can see, my mind is all over the place.
Sue

[kate1711]

#1179111

Hello Sue,

I am new to posting, wasn’t sure I had anything of value to add, but here goes. I am 51 and over the past 15 years I’ve had it all. Goitre, Synthroid, partial thyroidectomy, hyperthyroidism, RAI, Graves Disease, TED, prednisone, bilateral orbital decompression surgery, and radiotherapy. I am scheduled for strabismus surgery July 10th, and after that will be the eyelid surgery. A few of the symptoms have included: weight loss, hair loss, always cold, nausea, racing heart, anxiety, depression, tremors, major change in appearance (bug eyed, droopy lids, cross-eyed). I am currently off work because my double vision is so bad.

I had the RAI in Oct ’11 and it was easy. However, even though I was considered low risk, I developed TED within 4 months. It may have happened anyway but looking back I wish I would have opted for surgery to have the remaining half of my thyroid removed.

It is my understanding that RAI is successful and safe for most but I wanted to add my voice to the others suggesting researching all avenues available to you, including consults with endocrinologists and surgeons if possible.

Oh, and if you find one of those “leprechauns”, please share!!

[Stymie]

#1179112

Sue,

I opted for RAI. but my story is a little different. My endo never told me I had graves. I just thought I was hyper. I never knew most people consider it one and the same.

I did my research, but every time I came accross something that said graves, I just said oh that’s not me, I’m just hyper.

So I chose RAI not knowing it could cause eye issues. I just recently started having eye issues. Somewhere around January. Saw an opthomologist in march and he didn’t seem to concerned with TED, told me I had dry eyes and gave me some eye drops.

If I had it to do over? Well first off I would have chosen a better endo. But secondly I think I would have at least tried the ATDs. And my second choice would be surgery. I mean why subject yourself to eye issues when you know that RAI gives you a higher chance of getting it.? I think there are some people who also say if you don’t have your thyroid, the antibodies will start to attack your eyes anyway. Idk how true that is, but I guess it’s worth looking into as well.

Maybe some people are just going to get TED no matter what. Who knows.

That’s just my 2 cents for whatever its worth. Good luck and let us know what you decide!,

Diane

[LaurelM]

#1179113

Hi Sue,

We seem to be in similar situations and are having the same questions. My remission also lasted about 6 years. I am now 40. I don’t feel as completely well on the PTU as I did on the Methimazole last time but certainly way better than hyper. I have been on the PTU for a year now. About 6-7 months ago, we tapered down my dose and I was OK for about 2 months but then crept back up and I am back to a pretty high dose (200mg two times a day).

At my last endo appointment, I asked about what he thought for another remission as we were close to a year but I was on what seemed to me to be a fairly high dose. He said my dose, the size of my enlarged gland, and my initial numbers were looking less likely for another remission. We also talked a bit about RAI and TT. He thinks that TT is underutilized in the US and we are in an area with several excellent surgeon so either is an option for me. We decided to hold off on a decision right then and see where I am at at my next appointment in early June.

I am feeling tired of the ups and downs. While I really enjoyed my 6 year remission, I am also less enamored of the uncertainty of even if I did acheive another remission, do I want to be dealing with this again in the future? What are the odds of acheiving and maintaining a second remission? I have not really been my full self for a year now. That is a lot of time to invest.

Of course, I have been dealing with a bad cold for the last 10 days so my current perspective is based on some extra fatigue. I just feel in a bit of limbo.

Million dollar question indeed.

Laurel

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