I was diagnosed with Graves Disease in 2007. My levels were very high. Tapazol got it under control and when I got pregnant in 2008, I was switched to PTU. My pregnancy was unremarkable and I continued on PTU after my son was born. In 2009, I started feeling terrible and I couldn't get in to see my endo. He is the most horrible doctor I have ever had the pleasure of knowing. I ended up in the ER with such a big goiter I couldn't put my head down. It was discovered I was hypo. I was switched to synthroid and felt better. 6 moths later, I feel like crap again and went for blood work. I was hyper again. This time I went back to Tapazol. My son was diagnosed with cancer in the spring of 2011. The stress the diagnosis and subsequent treatment put on me, caused my thyroid to flare up with a vengeance. I hadn't seen my endo since 2009, and had no desire to. My wonderful GP had been looking after me. I had to go back to a specialist, so to him again I went. I wanted surgery because of my son's treatment, but the surgeon wouldn't touch a “hyper” goiter. Apparently they bleed out more. So I went for RAI in June of 2012. In July, I felt better than I had in years, but it was shortlived. By September it was evident that my levels were on the rise again. I hate the pills and someday would like to be fertile again. I am supposed to go in for a 2nd dose of RAI on November 1st. Has anyone else had a 2nd dose? Are the side effects worse? Is it safe?

Hi there and welcome.

I'm sorry to hear about the hard time your having and have been having, my thoughts are with you.

I had to read through your post a few times and am still a tad confused. First I think the care you have been getting isn't as good as it could have been. Second, I myself haven't had RAI, my goal is to aim for remission with medication, but from what I have been told, RAI is a long process. It can take up to six months for your thyroid to be destroyed and sometimes longer. During those months most people feel up/down/up/down etc.

So what I don't get is why they want to schedule another RAI so soon after without waiting for the first to take it's course and why the surgeon just didn't try to balance out your levels in the first place before any surgery? I mean, 5 months between RAI's is just absurd. I would honestly try to see another endo for a second opinion. And from what I remember, there's a certain time frame before one is able to have another RAI treatment. Hopefully someone else here will chime in.

Just keep in mind that what ever treatment anyone chooses, it is a balancing act, and for that you need to be an advocate for your own health as well as having a knowledgeable GP/endo.

Are you still taking Tapazole? Or Synthroid? Did you get another ultrasound? Are your dr's checking your TSH, free T4's and free T3's regularly?

~Naisly

I'm with Naisly - I'm confused, too. RAI took six months for me, and I became so hyper during those six months that I had to go back on PTU (another ATD like Tapazole). I only had a small dose (10 mCi) of RAI so we knew it might not have been enough, but eventually, after six long months - it worked. And I mean worked. I was severely hypo for a few weeks and remained hypo for a year despite constantly adjusting my Synthroid. I was going through some other stuff, like GI issues, a 30-pound weight gain, a breakup, a 1500-mile move, etc.

I'm sorry, but it sounds like your endocrinologist is pushing for a second dose of RAI well before the first dose has been given a chance to do its job. I know ATDs aren't fun, but many of us go back on them temporarily until the RAI can finish its work.

Is there a reason why you can't find a new endo? Not simply because of his pushing you for a second dose, but also because he sounds like a jerk in general and there's obviously a reason why you were letting your GP manage your Graves' for so long.

Well, the recommendation for the second RAI treatment in November is, approximately, six months after the first one. I only point that out because if, indeed, it takes as long as six months to get the full idea of how well it worked the first time (or didn't work), then preparing to do it again in November might not be jumping the gun. Second, allowing the hyper condition to continue is obviously not good for anyone. So the choice is most definitely appears to be to either do a second RAI or go back on the antithyroid meds.

If Ski gets back from her vacation, she can tell you about her second RAI.

I counted from June 1 - November 1 so lets assume she had the RAI June 1, that would be only 5months. But I would guess that her RAI was ‘sometime’ in June so technically that would be 4+ months since her last RAI.

Right, Naisly. I had a mind blip. Thanks for the correction.

I took the RAI pill last Wed, 10/24, when I went for the scan from the RAI uptake. The Dr told me that they base the dose they give you on the size of the thyroid gland (mine was 30). He said that I should be aware it may not kill all of the cells and there could come a time that I may have to do a 2nd dose. He said it would be no less that 6 months before we would know. The radiation takes 6 months to completely leave your body, so until this time they aren't for certain that the 1st dose even worked. They will monitor the thyroid levels through blood work, but they will fluctuate because some of the cells are dieing off. So based on what my Dr says, a 2nd dose shouldn't be done until exactly 6 months.

On another note, I have noticed people saying their pill was a pretty blue. Mine was in a clear capsule that looked like it was full of metal shavings.

i had 2 doses all within a month.. then had a a storm..

Some doctors still believe we are hyper and either raise our anti-thyroid meds making us hypo OR tell us we need RAI once, twice, three times. This article explains:

http://jcem.endojournals.org/content/86/10/4814.full.pdf [jcem.endojournals.org]

I haven't heard of doctors recommend RAI more than twice for Graves' patients. Cancer patients may be a different story.

Note that the research article is from 2001, so there have been 11 years for follow-up studies. Sometimes research studies show very clear indications, but can never be duplicated. Without being duplicated those studies fall out of favor. I don't know if this research has had successful follow up, but it is necessary part of how we go about learning more over time.