What is Graves’ Disease and Why RAI Treatment?

I was recently treated for Graves’ Disease, and I’ve had a lot of questions about what it was, and how I cured it. This questioning came from the fact that hyperthyroidism and hypothyroidism are surprisingly common and most women have the symptoms, but don’t recognize them as the disease, or even know they’re suffering from it.

To start, I had Hyperthyroidism. If you want the Wiki version, here it is. If you’re wondering about hypothyroidism, here’s the Wiki version for that. (I don’t know as much about that because I didn’t have it.)

My Urban Dictionary definition for the condition is:

Hyperthyroidism, or Graves’ Disease:

Graves’ Disease is the Thyroid (a gland in your throat) producing way too freaking much thyroid hormone, which is bad for you long term because it weakens your bones and puts way too much stress on your heart, making it potentially deadly if mismanaged.

A pain in the ass disease, that short term symptoms give you anxiety (sometimes referred to as “manic anxiety”), the “blues” (which is a technical term to say that we haven’t scientifically been able to link it to depression, but we are willing to admit it makes you really, really sad) and hot flashes. (To name a few. Full list here.)

This fun little disease is also rough enough to make you miserable, between your racing heart rate and paranoia, but isn’t *quite* bad enough to make you put your life on hold. (Or be excused from work.)

Aka get back to work, and don’t get offended when a virtual stranger calls you “manic”. Want to fix it? Cool, but it *could* have some nasty side effects, and then you’ll also have to be on thyroid hormone (a pill) every day for the rest of your life. Woo hoo!

Yeah, super fun.

Having this disease was the worst. For a long time, I thought I was just stressed, was exhausted, and had amazing metabolizm. (Hyperthyroidism speeds up everything in your body, including that, so I couldn’t put on weight – even though I was eating WAY too much popcorn, drinking coca-cola and treating myself to dessert 4 nights of the week.) Yes, I should have known something was wrong. But I didn’t.

It wasn’t until I was at an afternoon coffee meeting (that I had been running late to, of course) that it dawned on me. I was meeting someone new that I wanted to impress, and unfortunately didn’t, because halfway through the meeting she sternly said:

• Her: “Amanda what is wrong with you?”
• Me: “What?” (Extremely surprised, thrown off)
• Her” “I’m really worried about you. You’re anxious, you’re stressed, and you’re really almost manic. What’s going on?”
• Me *speechless* “I’m not sure, I guess I’m just stressed…. Maybe I should do yoga.”

It’s true, I really was stressed, but I thought I had been acting normal. As I replayed the conversation over and over in my head, analyzing it and trying to see if she was right, I realized that I needed to go see my Dr. asap… because I recognized these symptoms.

I knew them because I was originally diagnosed with Graves’ 4 years ago, and had taken Methimazole for an eight month period in 2015-2016 which sent my Graves into remission. When I went into remission I was under the false impression that I could never get it again, that I was better.

I wasn’t better.

I instantly began calling different doctors, and switching appointments until I could get one scheduled for the next week. When I went in I got lab and bloodwork done, and sure enough, the Grave’s Disease was back with a vengeance.

My Dr. gave me my options for long term treatment: a week of isolation or a giant scar.

Ultimately, I went with the week of isolation (RAI Treatment) and am glad I did. I’ve gotten a lot of questions about the treatment, and why I didn’t elect to have surgery.

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RAI Treatment: Swallow a radioactive iodine pill that your Thyroid sucks up and because it’s radioactive, it kills the Thyroid. Then swing into Hypothyroidism for a small bit as you get better, and eventually be put on a Thyroid hormone pill to take daily.

• Pros: No scar, relatively pain free
• Cons: Have to be alone for 7 days (Read about that experience here), rumored to affect fertility, potential for hair loss, sore throat for days, nausea.

My experience: I went through with this treatment because my Dr. assured me that my fertility would not be affected, and that I was unlikely to lose much hair. It’s now a few weeks after my treatment and I have not experienced any hair loss! (Win!) I was a little nauseous, and my throat hurt, but not the week I expected it to.

Thyroid Surgery: Have surgery to remove your Thyroid. Then swing into Hypothyroidism as you get better, and eventually be put on a Thyroid hormone pill to take daily.

• Pros: No need for isolation.
• Cons: Scar, some pain, have to go under anesthesia, recovery time of a few days.

To be honest, I made my decision mostly out of vanity. I really didn’t want a scar on my neck. My Dr. also told me he really didn’t recommend surgery, and assured me the RAI was the best way to go. I was lucky to really trust my Dr., but if you’re going through this, it never hurts to get a second opinion.

Have questions about this, or want to talk about the disease or treatment? Message me on Instagram!