[belldandy112]

#1072233

Hi. I didn’t have RAI for the reasons you fear, and because I’ve seen it firsthand. And the potential side-effects from RAI are far worse than Graves.

I have a friend for whom Synthroid does not work at all …

If you’re feeling leary about this, at all uncomfortable, do more research. Take more time. Don’t let yourself be railroaded into a pricey process, because remember, doctors make more money on expensive procedures than they do by medicating you. My endo tried to get me to do RAI right away, and I said NO. Now that I’ve thought about it, not only is it a NO, it’s a NEVER.

I go into remission for years-long stretches; I’ve only taken Methimazole twice, the second time for a very short course. I’ve only had "bad" Graves syndromes once; the second time, I just lost a lot of weight, didn’t feel that bad at all. Now that I see what works for me and what makes me feel good — being in long remissions is just like being normal, no meds at all! — I’m extremely glad that I listened to my intuition. ” title=”Smile” />

Melissa
Austin, TX

[KMB]

#1019527

I’m scheduled to have RAI the end of the month. The Dr. has taken me off methmazole, as he says that the uptake is more accurate in determining the full RAI dose after being off medication for 6 weeks. I’ve recently read information to the contrary, and am very insecure about this whole process. It would be wonderful to have perfect health, post RAI, but I fear that the cure may be worse than the disease. While off methmazole I am going through heart palpitations, excessive night sweats, lethargy, forgetfulness, anxiety and all of the notable Graves distractions. I kind of know what’s around the corner with this Graves, but really fear RAI. I am so scared and I really feel like I am being swayed in a direction that I would rather not go in, but this disease is forcing this outcome. I’m told that my thyroid will be ablated after six weeks, and then I will go on synthroid. I’m guessing that I will continuously go through highs and lows throughout the balance of my life and I really hate the idea of such a dependency. Those of you who have had RAI, please let me know your outcomes? I need a good dose of hope right now.

[Ski]

#1072234

While I agree that you need to be comfortable with your decision, I cannot let a post go unanswered that claims "the potential side-effects from RAI are far worse than Graves." That is simply not true. No risk from any of the three potential treatments available to us is anywhere NEAR as dangerous as hyperthyroidism.

RAI returned me to health. It was my personal choice. No doctor forced me into it. I did all my research, found out what I needed to know FOR ME, and made my decision. All three treatment choices are perfectly valid, and all have their challenges, risks and benefits.

When you are doing your research about the treatments available to you, please make sure you are looking at valid, peer-reviewed research. There are plenty of sites that would like you to believe there are extreme dangers to RAI, but 60+ years of using the treatment simply have not borne out those fears ~ not to the patient, not even to children of the patient.

I AGREE that you need to feel comfortable with your choice, and if you have a visceral reaction to the idea of RAI, I think you should do more research. Your doctor has no right to tell you what to do. They can suggest, they can recommend, but they cannot FORCE you to have RAI as your treatment.

I just want to point out quickly that it is true, you need to stop taking ATDs for a period of time prior to taking RAI, if that’s what you’re going to pursue, because ATDs will block the RAI from getting in and doing its work. The symptoms you feel when you go off the ATD are due to the fact that you are returning to a hyperthyroid state while you are not managed with the ATD.

Oh also ~ once you have removed the thyroid (either through RAI or surgery), you will NOT have ups & downs after you have dialed-in your replacement hormone dose and achieved normal, stable thyroid hormone levels. Once you have removed the gland, the antibodies can no longer make your thyroid overproduce.

After you achieve normal levels (and find YOUR point), we recommend that you have your levels tested once a year. In all likelihood, you won’t need many adjustments over your lifetime, but some life events do lead to a change in our need for thyroid hormone (pregnancy, menopause, aging, losing/gaining weight, change in overall activity level). The biggest challenge comes just at the start, and you start out CLOSE to normal, then drill down to YOUR normal. It can take some time, but if you’ve got 50 years of life left to live (or more), what’s six months (feeling better all the time) in order to feel just right? No matter WHAT your choice, you’ll be "dialing in" your hormone levels to some degree, taking a little bit of time along the way.

I’m all for empowerment. I don’t think it’s fair to bash ANY of the potential treatments we have available to us.

[dsarmien]

#1072235

Hi, there — I had RAI at 35 years of age & was able to attain the normal thyroid level right away. I’ve never had ups & downs, health wise, during the last 16 years. I’ve hiked the Grand Canyon, Napali Coast, traveled all over Europe several times & just made sure I had my little purples thryoid hormone replacement pills with me at all times. There was no internet 16 years ago, but from the literature that I was given, I read that the medication back then could cause liver damage. I did not read anything about side effects of RAI, so I chose this route over medication. It sounds like thyroid medication has changed since so if I were newly diagnosed, I would explore all options carefully. We all should be thankful for the choices available to treat this awful disease.

Regards,
Dolores

[DianneW]

#1072236

KMB, what is the reason that you are switching from antithyroid drugs to RAI? Do you mind sharing why this is necessary for you at this point?

I’m one for whom RAI was a difficult path. I didn’t feel well for a full 4-5 years because my levels kept changing constantly for that long. (A higher, ablative dose most likely would have avoided this.) On top of that, T4 replacement alone left me feeling completely unwell. The conventional view on that right now is that this isn’t thyroid related; yet testing my Free T3 showed it to be below normal, and putting me on a combination (T4/T3) replacement hormone made me feel much better.

My concern for people undergoing RAI has nothing to do with the effects of radiation. Many studies have shown this treatment to be safe. But every doctor who treats Graves’ Disease patients has a portion of these patients who never feel entirely well once they are on thyroid replacement hormone. Until the reasons for this are discovered and eliminated, isn’t it reasonable for patients to at least be warned of this possibility when being presented with their treatment options? If I had known of this, I certainly would have tried for a remission with antithyroid drugs before destroying my thyroid.

Many patients do really well following. I’ve met them in real life, as well as encountering the ones like Ski and others who post here. But I encounter scores of patients whose experiences match mine, so it can go either way. I wish I had some idea what the ratio is, but I don’t. My best guess is that the patients doing well probably outnumber the ones having trouble by quite a bit, but we don’t see them here because they’re not having trouble.

You said you needed encouragement, and if so, that’s the most realistic encouragement I can honestly give you. I suggest you talk with your doctor about what proportion of his patients don’t feel well on thyroid replacement following RAI. If he gives you any kind of honest answer, I’d like to hear what it is.

Best wishes,

[Mickey65]

#1072237

I had RAI in Dec of 2008, and it made me feel SO much better. No side effects.

I just don’t "get" the negative stuff people are thinking and saying about it? Your other two choices: getting your throat slit open and the doctor cutting out your thyroid, or taking a handful of pills for a few years and maybe they work or not and then MAYBE having liver problems – and then you will be down to two choices – RAI or surgery.

I’m on Synthroid right now, and I’m having NO ill effects from it at all.

Stating bad comments about things here that you haven’t experienced, doesn’t seem right for those looking for ways to cure themselves of this disease. And then makes those who have done RAI look insane – when it worked out for us?

The good apparently outweigh the bad. Cut us some slack here!

[DianneW]

#1072238

Mickey65 wrote:I had RAI in Dec of 2008, and it made me feel SO much better. No side effects.

I just don’t "get" the negative stuff people are thinking and saying about it? Your other two choices: getting your throat slit open and the doctor cutting out your thyroid, or taking a handful of pills for a few years and maybe they work or not and then MAYBE having liver problems – and then you will be down to two choices – RAI or surgery.

I’m on Synthroid right now, and I’m having NO ill effects from it at all.

Stating bad comments about things here that you haven’t experienced, doesn’t seem right for those looking for ways to cure themselves of this disease. And then makes those who have done RAI look insane – when it worked out for us?

The good apparently outweigh the bad. Cut us some slack here!

Hi Mickey,

I’m really glad your RAI went well. You’re one of the fortunate ones. I would never try to invalidate your experience, and I’m happy for you.

The other two choices are just as valid, so one might ask the same question of you (why you’d put them in a negative light). To others, they may seem ideal.

I don’t think at all that you look insane for doing RAI when it worked out for you. The only reason I would mention my negative experience with RAI is because I wish when I was making my choice, someone had let me know it was possible the outcome wouldn’t be 100% wonderful. It’s not that doctors aren’t aware that a percentage of patients have that outcome.

Again though, I agree that most patients will probably have a good outcome with RAI, especially with a dose large enough to do the job quickly. The good didn’t outweigh the bad for me, though.

[Katherine]

#1072239

KMB,

If you’re uncomfortable with the idea of RAI, please talk to your endo to see if ATDs are an option to try to go into remission. My endo let me try ATDs for 2 years, until we realized that I was unable to lower the dosage any further so remission was out of the question.

I had RAI done in June 2008 (almost a year already!) and have to admit that I was really scared of it as well. For me, it has gone so much better than I ever would have expected. My endo did take me off ATDs beforehand, but it was only for a few days. I started taking thryoid hormone in early August, had it lowered slightly in early December and I’ll go in for a blood test at the end of this month. I didn’t realize how sick I was, even with my levels appearing normal for almost 2 years, until now. For me, the replacement hormone has been much easier to take than the ATDs. I truly started feeling "normal" around 5-6 months after RAI.

Everyone has a different experience so I’m glad you’re on the bulletin board so you can make a decision that is best for you. Have you expressed your concerns to your endo? Sometimes it helps to go straight to the source so they can help you make an educated decision.

Good luck and keep us posted on how you’re doing.

Katherine

[Mickey65]

#1072240

DianneW wrote:

The other two choices are just as valid, so one might ask the same question of you (why you’d put them in a negative light). To others, they may seem ideal.

I didn’t take the other two choices, since the surgery would have been too invasive and I saw some pictures of thyroid neck surgery and didn’t want mine to look like that. With the surgery, there’s a chance of your vocal chords or something else being nicked when they cut out the thyroid.

I didn’t want to be on pills for 3-4 years and find out in the end they really didn’t work and end up with possible liver damage. It would have been a waste of time and money – money spent on prescriptions for it all.

I put it in a negative light since some people here feel RAI is so "negative" for some reason, and wanted to point out the "negative" factors on the other two choices for those who think it’s safer than RAI.

My endo told me RAI was the safest and quickest form of treatment for GD. She gave me plenty of material to read about the 3 treatments, and also gave me time to decide which one I wanted to do. After doing much research online about RAI, AND speaking to a co-worker who also had it done (the RAI), about 30+ years ago – I decided on the RAI.

[Kimberly]

#1072241

Unfortunately, selecting a treatment for this disease is a bit of a crap shoot, and I think we all have to be up front with the pros and cons of any treatment option. I am currently on ATDs, but I wouldn’t recommend this approach to anyone without informing them of the risk that the drugs can impact liver function and white blood cell count. I’d feel terrible if the person took my advice and then turned out to be the one in a thousand that had WBC issues.

However, I don’t think it’s fair to advocate RAI without discussing the fact that that the choice is irreversible – and some patients really struggle to “feel right” again following ablation. I have no idea what the number is — 1 in 10? 1 in 100? It would be interesting to see a large study related to patient satisfaction on treatment outcomes.

[James]

#1072242

Mickey65 wrote:I didn’t take the other two choices, since the surgery would have been too invasive and I saw some pictures of thyroid neck surgery and didn’t want mine to look like that. With the surgery, there’s a chance of your vocal chords or something else being nicked when they cut out the thyroid.

I didn’t want to be on pills for 3-4 years and find out in the end they really didn’t work and end up with possible liver damage. It would have been a waste of time and money – money spent on prescriptions for it all.

Hi Mickey,

Just as a point of clarification. ATD’s DO do their job in virtually all patients (that is blocking thyroid production) there are very rare exceptions where this isn’t the case and equally rare cases where liver damage may occur. As far as wasting time and money is concerned, I’m going to take the liberty by making a subjective statement by saying is time and money well spent; although I thought the drug was very inexpensive. You claim to have done your research fully prior to making your decision, but at the same time you make speculative statements. Admittedly, I myself have done this at times.

As for some people being “negative” as far as RAI is concerned, you would of had to have been around for a while to fully understand that RAI is a highly recommended treatment option here and that the facilitators have an incredible wealth of knowledge and experience with RAI. In the past I thought that ATD’s were not given equal time. Thankfully, I don’t think that is the case any more though.

I agree with you that being fully informed is paramount and probably one of the key goals of this message board. I don’t think that everyone is fully informed, and often end up making choices they are uncomfortable with. I think that we would all agree that that is what we don’t want.

Best regards,

James

[LaurelM]

#1072243

I was able to acheive remission with ATDs (and didn’t have any big issues while on them) so I have not had to make any other choices yet. For me, the ATDs were easy and inexpensive.

I have a good friend who had thyroid cancer in her late 20’s. She had to have both a thyroidectomy and 2 doses of RAI (at a MUCH higher dose than GD patients receive). You can barely see the teeny tiny scar from the surgery. It blends right into a neck fold. As for the RAI, because of the higher dose, she had to stay in the hospital for a couple of days and then keep a distance from others for a few more days. According to her though, looking back both treatments were very doable. She did not experience any significant issues from either. She is of course on replacement thyroid hormone now and that too has been fine.

I have another friend who had RAI for GD. She feels that she was rushed into the proceedure without all her options but she says it worked very well for her and she is not unhappy that she had it. She is also now on a replacement thyroid dose. She never visits this board because she feels fine/normal and has a very busy life as I’m sure is true for the vast majority of patients.

If I come out of remission, I am willing to consider all of the options. For me, it would just depend on what my circumstances (personal & medical) are at the time I would have to make that decision.

If there are no medical reasons not to, then go with whatever your feelings are leaning to. Being comfortable with your choice should be a significant factor in YOUR decision.

Best Wishes,
Laurel

[RhondaG4]

#1072244

Bigger picture….bigger issue…. Dr’s shouldn’t pressure their patients into a choice!!!! If your feeling uncomfortable….wait…talk to your doc….get a second opion…do more research on your own!!! Hope this helps. Rhonda

[belldandy112]

#1072245

James wrote:ATD’s DO do their job in virtually all patients (that is blocking thyroid production) there are very rare exceptions where this isn’t the case and equally rare cases where liver damage may occur. As far as wasting time and money is concerned, I’m going to take the liberty by making a subjective statement by saying is time and money well spent; although I thought the drug was very inexpensive.

With RAI, there is a guarantee that you’ll always be taking Synthroid — which is much more expensive than Methimazole, and a lot of insurance plans don’t cover this therapy. I have a friend who spent hundreds of dollars a month on this stuff only to find that it doesn’t do a thing for her. She can’t claim disability, but neither could she ever work a full-time job.

I was told that my kidneys would fail if I kept taking my temporal focal epilepsy medication … that I needed brain surgery. More than 30 years later, and I have zero problems. I finally found a doctor who explained that the risk was so negligible, it was barely worth mentioning. Of course, the neurologist who wanted to cut was after the big $$$. After seeing how badly a lot of epilepsy patients turned out post-surgery, I’m glad that I made the responsible choice.

Keep in mind: It’s always most profitable for doctors to recommend the most expensive/radical treatment. I have a doctor friend (thoracic surgeon) who confirmed that the general practice is to seek the most expensive procedure. Even if the risk to the patient is higher than keeping them on medication! Perhaps this makes me a conspiracy theorist, but after an attempted "con" with the whole brain surgery thing — and yes, at the time, it made perfect "sense" — I’m very wary of procedures like RAI.

[Ski]

#1072246

Synthroid is CHEAP, the generics even cheaper. I used to buy 100 Synthroid pills, without benefit of insurance, for less than $30. That’s more than 3 months’ worth.

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