[Lucy]

#1018893

I was diagnosed with Graves August 1st. Have been on Methimazole and it has gotten my levels into normal range. I am feeling good, but my endo is pushing RAI. I have never taken any meds before and was worried about the medication. But, I am even more worried about RAI. I was told that I would only need to be in isolation for about 20 minutes following the treatment, and shouldn’t be around many people for 3 days. But I just read about someone who was alone for a week. Can I hear from others what their length of isolation was.
I also am a teacher and worry about how I will feel immediately after. Should I wait until school is out. Help, please!
Lucy

[elf]

#1067694

I was 2 days away, and for 2 more days tried to have minimal contact with my children. You probably would need to take 3-4 days off work.

But, if you feel fine on ATD, and not feeling right about RAI, you may refuse RAI. Nobody should pressure you into something you don’t feel right about.

[Ski]

#1067695

The standard time recommended for isolation after RAI varies among doctors, though the trend in the U.S. is to worry less and less about that. In addition to that, the fear factor is common, but the facts do not prove out any future risk with RAI.

Still, as mentioned by elf, if you are happy on ATDs, you should be perfectly fine making that choice and continuing with them. All three treatments have their pros and cons, and if you’ve found one you like, no particular reason to switch. The conventional wisdom in the U.S. is slowly shifting, but traditionally the U.S. has treated Graves’ more with RAI than ATDs. Europe and Japan are just about exactly reversed from the U.S. as to treatment patterns (more patients on ATDs than using RAI). Right now the tide seems to be turning in the U.S. so treatment here may eventually align more with the habits of Europe and Japan. In the end, it is absolutely YOUR choice ~ unless you experience one of the more severe side effects of ATDs, then you simply must choose something else. Those severe side effects usually show up within the first 90 days of any course with ATDs (if you stop and restart, the 90-day clock runs again), so keep that in mind. If all else is going well with you, ATDs remain a valid choice for your treatment, and the final say is YOURS.

[Lucy]

#1067696

Ski, I like what you have to say! I will be seeing a second endocrinologist soon and will see if her opinion differs from the first doctor I saw. I was worried about killing off white blood cells with ATD, but as you say that usually happens soon after you begin the medication. I imagine with the ATD it will require frequent blood tests.
Is there anyone out there who has been using ATD for a prolonged period of time?

[susandemarco]

#1067697

Hi Lucy,
I was diagnosed with Graves Disease twenty years ago. I immediately went on anti-thyroid drugs, PTU, for about eighteen months. I went
into remission for about eight years, then went hyper again, and started the medication again for eighteen months. Again went into remission,
but this time only for three years. And it went on like that and each time remission was a little shorter. At this point remission only lasts for
about a month or two. Right now I am seriously considering RAI, which I will probably do after the holidays.

This is a very personal and confusing decision, but I would try the medication and see what happens. You can always make the decision to do
the RAI.

I hope this info helped you out a little.

Best of luck and good health,
Susan

[janshrewsbury]

#1067698

I was diagnosed with Graves only after experiencing atrial fibrillation. At that point, the cardiologist recommended immediate RAI. Because of the severity of AF I believed there was no choice except to follow his advice. I underwent two RAI treatments and have since truly regretted it. It has been an ongoing battle to regulate the thryoid levels. More than not, I now struggle with hypo-thyroidism which presents a constant struggle with weight. (And I have recently learned that iron supplements or anything containing high levels of iron cannot be taken within 4 hours of taking synthroid — who knew?) Blood tests are conducted at least every 6 months and more often if the levels have fluctuated. I truly wish I had given the meds a chance to work first. Of course it is a personal decision but arm yourself with every bit of knowledge about your options when talking to your doctors. I have had to educate my doctors on the subject as much as I have myself.
Take care,
Jan

[Kimberly]

#1067699

Lucy wrote:I was worried about killing off white blood cells with ATD, but as you say that usually happens soon after you begin the medication. I imagine with the ATD it will require frequent blood tests.
Is there anyone out there who has been using ATD for a prolonged period of time?

Hi Lucy – I have been on ATD’s for two years and plan to continue with this treatment option unless I have liver or WBC issues. I get these issues checked (CBC for white blood cells and CMP for liver function) every time I have blood tests run.

Also, if you are on ATDs and get a major sore throat with fever, contact your endo ASAP. Get a blood test done to check your white blood cells.

These potential complications are scary, but unfortunately, *every* treatment option has its pros and cons. It’s important that you listen to your endo’s advice…but then ultimately select the treatment option that YOU are comfortable with.

[Bobbi]

#1067700

From my point of view, the issue comes down to whether or not the medication is working for you to keep your thyroid levels under control. You need to be most afraid of being hyperthyroid. Many people have done well on antithyroid meds, others have had problems. And, as we age, we experience more side effects to drugs — even drugs that we could tolerate as a younger person. I think this may be one reason why our doctors try to move us on from the drugs to either RAI or surgery, all things being equal.

I had RAI, and it made me well again. I was told to keep some distance from other people ( measured in feet, not walls) for a week in order to keep from accidentally exposing them to some radiation. There are other precautions as well, designed to do the same thing. (It’s kind of like in the dental office, where the lab tech walks out of the area, or goes behind a lead shield, before turning on the xray machine. It isn’t that the amount of radiation that is generated is bad for her/him, but that it is an unnecessary exposure. ) In my case, the ATD was making me sicker, so doing something else was prudent. And replacement hormone is chemically identical to our body’s own thyroxine, so our bodies process it without the types of side effects that can occur with non-natural chemicals entering the body. It was a good solution for me.

It’s never easy deciding which treatment option to choose, so I do wish you luck with it. And good health.

[StacyQ]

#1067701

Bobbi…i can relate to you.

I had been on methamazole for 2 years before i decided to do the RAI (July 2009). I had chronic sinus infections, sick alot, etc etc. I was so sick and tired of it and the heart palpatations on top of it!!! Lordy! The meds were keeping my numbers right but the side effects really sucked! ” title=”Neutral” /> Now that i’ve had it done, i’m fighting to get my thyroid back to normal with Synthroid. But as i mentioned before to people on this board, I would sooooooo rather have the fatigue, tiredness, weight gain, etc, than the heart palpatations, running on empty feeling, hyperness, etc. I know that everyone’s body is different, and people should make their own decisions on THEIR bodies. Please, DO NOT let an ENDO force you into something IF you feel that you’re not ready. In my situation, i tried with the meds for two years with no remission then said, forget this..give me the RAI!!!! LOL! It also bided me some time to research and make SURE this is what i wanted.

Good luck to you.

~Stacy

[susandemarco]

#1067702

Hi Stacy,
Thank you for responding so quickly. My other fear is the possible weight gain after you are hypo.

The thing I am trying to find out, is after you get regulated with the synthroid can you manage your weight. According to my doctor
she said yes, especially since I was regulated when I went into remission. But you hear so many horror stories it really scares me.

If there is anyone out there who had RAI and was able to keep their weight at a normal stable range, I would appreciate your story.

Thanks again,
Susan

[Kimberly]

#1067703

Bobbi wrote: Many people have done well on antithyroid meds, others have had problems. And, as we age, we experience more side effects to drugs — even drugs that we could tolerate as a younger person. I think this may be one reason why our doctors try to move us on from the drugs to either RAI or surgery, all things being equal.

At the conference last weekend, one of the physicians did a presentation on the pros and cons of all three treatment options. He stated that the side effects with ATDs generally occur during the first 90 days of treatment (although the clock "resets" if you stop and then re-start the meds). Therefore, he said that he *would* be supportive of a patient who was doing well on ATDs and wanted to stay on meds for the long haul.

[Nick]

#1067704

Hi everyone.

Well I am done with it. Friday I had my RAI treatment. It was prescribed at 10mci, however, after I got a copy of all paperwork from the hospital I realized they gave me 10.9mci instead. I am not sure why there was a difference.

After I took the pill I asked them to measure me with a Geiger counter and at 6 feet I was measured at 10 Rads. It was similar with what you see in the movies (High-pitch crackly sounds).

I have been in home isolation for now, but I feel well so far.

[SeeSallie]

#1067705

Yay. I loved my isolation time because it gave me time to rest (a REAL rest). I thought I didn’t really need rest but boy after the third day I realized the rest was very much needed. I only received 8 mci and am fearful it won’t be enough as even the Dr administering the pill noted how low a dosage that was when most people get 15mci. I am trusting my endo’s judgement though. I had mine done a week ago so maybe we can monitor each other’s symptoms along the way until we get hypo.

Sallie

[runlacie]

#1067706

Nick, when I had mine I was supposed to get 7.0 and it was 7.3. The tech told me when he measured it there at the lab that it was slightly more than I was prescribed but they give you the whole thing.

Good luck, Nick and Sallie!

[James]

#1067707

Kimberly wrote:At the conference last weekend, one of the physicians did a presentation on the pros and cons of all three treatment options. He stated that the side effects with ATDs generally occur during the first 90 days of treatment (although the clock "resets" if you stop and then re-start the meds). Therefore, he said that he *would* be supportive of a patient who was doing well on ATDs and wanted to stay on meds for the long haul.

I just wanted to expand a little more on Kimberly’s post.

I made the mistake of coming off of Methimazole too soon and relapsed within 2-3 months. I had no problem with 30mg of Methimazole when first diagnosed, but when I resumed therapy a few months later, developed a slight rash with 10mg/day. This is case and point that the “clock can reset” when we resume therapy. Fortunately in my case the rash subsided within a short period of time. The conference physician did indeed mention that a patient outside of the 90 day window, who has responded positively to ATD’s, can resume on maintenance doses for the long haul and that he would support that. It goes without saying that that would be with monitoring of course.

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