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I had so many mixed emotions following my diagnosis of Graves’ Disease. At first I was relieved and happy, almost excited that I actually had a problem (I wasn’t just a crazy hypochondriac!) and that the problem was treatable. I was scheduled to have radioactive iodine treatment (RAI) in two days, and I would be on my way to feeling better!

Then I started googling*. I wasn’t very familiar with Graves’ because it hadn’t really occurred to me to look into it. I honestly thought I had postpartum thyroiditis, which is usually a temporary problem that fixes itself. Graves’ Disease is an autoimmune disease that attacks the thyroid, causing it to overproduce thyroid hormones, which speeds up everything in your body. It causes sweating, tremors, increased heart rate and palpitations, weight loss and muscle weakness, just to name a few of the symptoms I have experienced.

During my googling, I learned that President George Bush and his wife Barbara Bush both have Graves’, along with Missy Elliott and even an Olympic champion, Gail Devers. I also learned about the potential of Thyroid Eye Disease (or Graves’ Eye Disease) which is when I started to freeeeaaaaak out. Looking at the pictures was literally making me sick with fear, especially after learning that treating the thyroid doesn’t clear you of the potential for eye problems. What. The fuck. Reading Graves’ and thyroid message boards about horror stories of becoming hypothyroid and gaining tons of weight didn’t make things easier. (I imagined my eyes bulging out of my head, going blind and gaining 50 pounds. Greg would be disgusted by me and wouldn’t love me anymore, my girls would be embarrassed of me, etc.) Then there were the people who said they NEVER FELT BETTER, EVER – Even after treatment. Or claims that radioactive iodine gives you CANCER. Things like that. I was so scared out of my mind.

So, the morning  after they called me with my diagnosis, I called my nurse completely bawling. Uncontrollably sobbing like a hysterical, blubbering idiot. I had written down questions to ask her about Graves’ and my RAI  appointment so I wouldn’t forget, but I could barely even talk. I was so embarrassed. She was very nice about everything and answered all of my questions (once I calmed down enough to ask them.) The major eye problems only happen to a very small percentage of people with Graves’ and she assured me that radioactive iodine is safe, doesn’t cause cancer (they actually give RAI in an much, much higher dose to thyroid cancer patients!) and that it is the number one treatment option for Graves’ Disease.

If left untreated, Grave’s can be fatal. Luckily, there are 3 treatment options:
1. Antithyroid medication – Some lucky few people can take these medications and go into remission from Graves’ for at least a while. Most people though, become hyperthyroid almost immediately after stopping the medication. The drugs have side effects including liver problems and a lowered white blood cell count, making it difficult for your body to fight infections.
2. Thyroidectomy – Your thyroid is surgically removed. There are the obvious risks of surgery (like infection), but there is a risk of damaging the vocal cords (resulting in a hoarse voice for life) or nicking the parathyroid glands, which control calcium levels in the body.
3. Thyroid Ablation with Radioactive Iodine (RAI) – The thyroid gland loooooves iodine and sucks it up like crazy. So by ingesting radioactive iodine, you are poisoning the thyroid (or “ablating” it) without damaging other tissues in the body.The thyroid slowly dies over the course of about 6-18 weeks. There are very few risks involved with RAI, besides thyroid storm (which can be fatal but is very rare) and lifelong hypothyroidism.

On November 30th, 2012, I swallowed 15 mCi of radioactive iodine.

To be continued…

*Just a little note about researching things on the internet. Remember not to believe everything you read. If you’re having a chronic medical problem, go to the doctor. And remember, if you’re diagnosed with something, personal experiences on the internet will always be skewed toward the negative. You won’t find many positive experiences because the people who are happy and well aren’t sitting around writing about their disease or whatever, they’re out living their lives!

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  1. Erin #
    January 22, 2013

    Lindsay, this is fascinating and you have described it so vividly. I hope you are doing well, feeling better and will continue to tell the rest of your story. I’m pulling for you, and have been since you wrote up part one.
    Much love from me and Theo!

  2. u2sjane #
    January 27, 2013

    I was diagnosed with Grave’s in 1996. I tried the medication first and it was horrible. Then I did the RAI…score!! I have been on Synthroid ever since and I feel great. I go to the Dr every 3-6 months to check my levels and that’s about it. I too was a little freaked out at first, but had a great Dr that calmed me down. You’ll do great and be a happier women once everything is leveled out. Good luck!!!

    • January 27, 2013

      Thank you so much for your comment! It was pretty rocky for a few weeks post RAI but since then I’ve been feeling so much better. I’m worried about the hypo side of everything and hope I can get my levels balanced pretty quickly. Fingers crossed. Thanks again and I’m glad you’re feeling better!

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