[DianneW]

#1073772

It’s not very likely that your Graves’ will have a permanent remission when you haven’t even had a long-term remission and it’s come back twice already. That’s reality. However, you do have the choice of using ATDs for long-term management if that’s what you want to do, as long as you can find a doctor who agrees with this and will monitor you. A recent study in the European Journal of Endocrinology compared the safety of managing Graves’ for ten years on methimazole with treating with RAI and concluded that it was comparable. IT’s your choice to make, as long as you’re doing okay.

I’m one of the people who had a rough time with RAI, but I don’t think it’s necessarily a "horror story" for everyone. I think there are real reasons that some people have a rough time, some of which can be avoided with better management by the medical profession. It can take some time to stabilize thyroid levels, and those months can be difficult when that takes longer for some people. If you are considering RAI, talk to your doctor about ways to make that process faster.

Surgery is another option, and can make the process of stabilizing levels faster than with RAI.

It does remain possible that in the future, treatments will be available that work on the autoimmune factors of this disease, but you have to consider the safest way to treat yourself now. Best wishes making those choices.

[Sandra227]

#1073773

Thanks Dainne for your input. My doctor has been very open to letting me make the decisions about how to treat the Graves disease, thankfully. We kind of agreed to give it one more chance with the meds. Very unfortunately, I am dealing with it again. Luckily, i know what the symptoms are so I can self-diagnose quickly. My doctor did not give much of an option for surgery, so I guess that is why RAI seems like the next best possible solution. Since my dr visit is this afternoon, I will definitely have the quesion list hammered out better this time since I have been reading the posts on this web site.
Are there any new discoveries that are in the works for other ways to treat Graves? RAI has been around for many years, it would seem that there would be more developments in this area.
Does the RAI only attack the thyroid? Read somewhere about it can attack other organs, but cannot remember where or what other organs it can affect.

[Ski]

#1073774

The only organ in the body that takes up iodine is the thyroid, so RAI targets only the thyroid. The part of the RAI that is "flushed out" (not taken up in the thyroid) is a secondary, minor issue.

At our most recent conference, we were told that the bulk of research is being done on diseases that have NO treatments available to patients, so since we have three choices, we are generally relegated to the "back seat," as it were.

There is research being done into the process of autoimmunity and how to short-circuit it, but we were told that the information they get from those studies will only help people who have NOT yet gotten an autoimmune disease. Once we have it, it’s a part of us. The doctor did not hold out hope for going back in time and "un-getting" Graves’. The fibroblasts invade the thyroid and they stay there.

[Sandra227]

#1019736

This is a great place to get opinions and it let me know that I was not alone. My first diagnosis with Graves was summer 2000, Doctor gave me the options and I chose to take meds. Took the PTU for 1 year and then stayed in remission until Spring 2005. Decided to once again take meds, Doctor put me on Methimazole for 13 months and stayed in remission a much shorter time as my GP confirmed by bloodwork that it was back January 2009. After reading about all the horror stories about RAI, I am scared that I will be another horror story. Many of the other posts have stated the ‘good’ side to having RAI because it is much more of a definitive solution. My concern is that a few years down the road there will be a better way to control hyperthyroidism and if I have the RAI my option for future solutions is not an available any more. Are there other scenarios of people that have done the meds more than a few times and the Graves goes into remission permanately? Or should I just bite the bullet and have the RAI as meds will never be a full remission option? Is the US the only place that pushes more to have RAI done? If so, why? Lots of question from a confused person right now…..

[Sandra227]

#1073775

Thanks for all the helpful information Ski. After waiting for 1 1/2 hours to see the endo (he is a great dr though and there are only 2 in the town i live in), he is basically leaving the decision up to me again about whether to go on meds again (for the 3rd time), have the RAI, or even the surgery (that he really did not recommend). He said the decisions for any of the options are based upon life style that is desired of the patient. RAI is more permanent and quick, Surgery has many risks, and meds are more time consuming with blood work and dr visits.
The meds have never messed with my white cell count or my liver function, so I consider myself a great candidate for meds. Is there anyone that you know of that has done the meds many different times? I asked him about staying on the meds for extended period of time as Dianne stated there have been studies involving this, he never really answered me whether he would allow that – he just stated that it is something that is done outside of the US.
Now I am on meds for 6 weeks and then have an appointment where he will want to know my ‘decision’. So, I have that time to read read read and come to a ‘decision’.
For anyone that has done the RAI – If you had it to do all over again – would you still do the RAI if all options were a possibility – why or why not??

[berniece6537]

#1073776

Hey There,
I had The RAI done last February and I would not have it any other way. My life before the procedure felt like a tornado!!! I was on PTU, Blood pressure Meds, Beta Blockers, not getting any sleep as I developed Insomnia because of all the stress I was under. My life went from being normal one day to upside down when my eyes began to swell shut, months later and many tests later I discovered that I was extremly Hyperthyroid and had Graves eye disease.I was hospitalized for a week due to an illness and my thyroid levels shot up sooo fast that the doctors wanted me to consider surgery or the RAI. Either way they suggested that I make a descision sooner than later due to my body’s response to the Ptu. Between my eye issues and my Heart palpitations I just could not function at work, or at home. I decided to have the treatment done because I was a walking talking pharmacy and my thyroid levels fluctuated constatly even while trying to adjust to the PTU. My endo and I have a great relationship and now a year later yes, I’m still riding the thyroid rollercoaster as I am now Hypothyroid and not adjusting well to the synthroid…but I will say this much, sitting in a room full of people and feeling tired achy and at times nauseus is sooo more worth it than those palpitations. I know that either way RAI OR NOT my life would need to go through major adjustments, taking care of my body, listening to it’s needs and resting, have now become my new focus. I think that whatever descision you make do it with an understanding that Throid Disease IS manageble. I am more aware and sympathetic to those who are Ill around me. Though I look at my twin brother and think now why me??? and not you???? I believe that it is going to be what I make it. Best of luck to you on whatever road you choose.

Berniece

[elf]

#1073777

Hi Sandra,

I’m one of those who is feeling pretty good after having done RAI. Would I do it again? The answer is yes.

There are many horror RAI stories statistically, because people with bad RAI experience search for an outlet like Internet, while those like me don’t need to.

I didn’t have Graves as bad as the previous poster had, yet it was annoying enough (trembling, anxiety) for all 3 months between my diagnosis and RAI. I was taking PTU and my levels were regulated, but I didn’t feel myself anyway. I had RAI in Dec. 2005, and am feeling well since.

I didn’t have any problems neither with the procedure itself, nor with turning hypo 5 months after. My goiter disappeared, no trembling, no anxiety, no "Graves rages".

I was 41 when I had RAI and I had two babies on my hands. I just did not feel that I could undertake an almost full-time job of watching my diet and herbs and pills and religiously taking lab tests… My babies/toddlers and my rural life demanded me in full swing.

I did have eye development in my first year after RAI, they were gritty and teary, and moving forward. By the end of that year they settled. I do have proptosis. But I do not want to blame RAI on my TED. As far as I read different Graves forums, TED has a tendency to appear at the least expected moment, even many years into remission. This way, I’m gone through the TED cycle, they are settled, I have nothing to fear anymore ” title=”Smile” />)) I am going to have a surgery to put them back a bit, to look better.

As for waiting for possible cure… RAI has been around for 40-50 years, it’s been plenty of time to find the cure… I’m very skeptical that the cure will be found in our lifetime.

[DianneW]

#1073778

Sandra,

If I had it all to do over, I would not have the RAI, for four main reasons. First, I had radiation thyroiditis, making my thyroid levels worse than they were before my RAI for two months, and I was miserable. Second, it took three months to control the hyperthyroidism, and then I became suddenly hypOthyroid.

My TSH was suppressed and not responding appropriately to my actual thyroid levels, so my endo had to guess at proper thyroid levels when I became hypothyroid, and he erred on the side of caution, leaving me feeling like hell for six months until my TSH began functioning again. Third reason: My levels continued to steadily decline as my thyroid died out over a period of about 4-5 years, so for all that time I felt less than completely well. (Stable levels for a period of time are necessary to begin really healing.) During that first year I lived with a 40-pound weight gain that I couldn’t shed, but got it down to 10 pounds and later was able to lose that after 5 years when my levels stabilized.

I went in to that choice believing RAI was going to be a fast way to get well again. Fourth reason: I have never felt as good on thyroid replacement as I did before Graves’ Disease.

During all that time I had significant exacerbations of eye disease that activated several times. My TBII levels were elevated during that time, and that’s associated with a worse course of eye disease. I was also hypothyroid a number of times, which is also bad for the eyes. A treatment that avoided hypothyroidism would have been better for my eye disease.

If I had the choice to make over again I would choose methimazole treatment, and if I couldn’t sustain a remission I would still choose to be treated with methimazole as long as I could be maintained with a small dose.

If for some reason I couldn’t do that, I’d have a thyroidectomy, and ask the surgeon to leave enough of my thyroid to give me a chance to remain euthyroid, even though I understand this would mean I could become hyperthyroid again.

I think a higher dose of RAI would have made my experience better, as I’d have become hypothyroid faster and avoided the years of dropping levels. Still, I would prefer to have my own thyroid gland.

That would be MY choice; it doesn’t mean it should be yours.

[Author]

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