Posts tagged graves disease

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!

Never thought that would be the title of one of my blog posts…

On Wednesday I was diagnosed with Graves Disease.

I haven’t been feeling very well lately. After I had Liza, I was sort of waiting for postpartum depression/anxiety to kick in because (I thought) I had it with Vada, and I knew it was very likely that I’d get it again. I had the “baby blues” for a few weeks, but that passed and I felt fine and happy. Then my anxiety started to kick in. I’m pretty used to feeling anxious and can usually find an excuse for feeling that way (lack of sleep, off schedule, didn’t eat enough, worried about something…) but it just kept getting worse. And weird… different from the normal anxiety feelings that I was used to having. My heart would race and my palms would sweat (normal) but I’d also get dizzy and have these spells of fatigue and weakness just out of the blue for no reason (not normal.) It started to become unmanageable. I called my doctor’s office and scheduled an appointment with the PA to get some Zoloft and/or Xanax, which I had been prescribed about 6 years ago when I had another unmanageable period of anxiety. The PA gave me some samples of a brand new antidepressant/anxiety medication – Vybriid. I brought them home and never took them. I just didn’t feel comfortable taking some drug that had just been put on the market a year ago. I told myself I would just get a grip and handle it, but I couldn’t.

I scheduled an appointment with my actual doctor about a week later. He chalked it up to be postpartum depression and prescribed me Prozac. While I was there, I also asked him to check my thyroid, just in case, because thyroid problems run in my family. He gave me the impression that he definitely didn’t think my problems were thyroid related, but tested my TSH levels anyway and they were low (.025) (meaning my thyroid was overactive, or “hyperthyroid”) but he said sometimes pregnancy can screw up your thyroid levels, to try the Prozac and come back in four weeks for more labs.

The Prozac made me feel absolutely terrible. I wanted to stop taking it so bad, but I knew that sometimes with SSRIs there’s a period of side effects that happen in the first few weeks, and thought that if I could just make it through that, then maybe it would actually work. It never did. I managed to make it through 14 days of misery and I couldn’t take it anymore. I called my nurse and explained how I was feeling (like I was on speed, waking up in the middle of the night in a huge panic with my heart beating out of my chest, increased anxiety in general.) They told me to stop and wanted to prescribe me something else, to which I refused. I wasn’t depressed! I knew it was something else.

I went back for my four week followup appointment and re-explained everything to the doctor. I told him I definitely didn’t want to take Lexapro or Effexor or whatever it was he was trying to prescribe me. I hate taking medicine and although the Zoloft kind of worked for me when I took it a few years ago, I felt weird the entire time, like I wasn’t myself. (And I would frequently wake up in the middle of the night feeling like my entire body was on fire and had to go outside in the freezing winter in my PJs to cool off….) The doctor was still giving me the impression that I didn’t have a thyroid problem, but I had my blood drawn again to check my levels. The appointment was on Friday, and they called me on Monday to tell me that I was “significantly worse hyperthyroid” and that I needed to go have a nuclear thyroid scan, which was scheduled for that Wednesday.

I did my research and learned that I would be given a low dose of radioactive iodine, then I would have my thyroid scanned four hours later followed by some imaging of my thyroid gland, then I would have to return the following morning to have my thyroid scanned again (RAI uptake test.) I went to my appointment, so nervous, and was sent home! Talk about torture. Because I had recently taken multivitamins, I had to wait 8 days to have the test done. (Multivitamins usually contain iodine, and if my thyroid had already absorbed that iodine, it wouldn’t have room to absorb the radioactive stuff they were giving me for the test.)

I went home, we left a few days later for Thanksgiving, and went back for my testing the Monday after that. I was even more nervous this time, but my sweet friend Dani came with and helped take the edge off. I went in and took a radioactive pill. I wasn’t allowed to touch it, but I had to swallow it, which just seemed weird to me. So we went to Panera for some bagels then back to my house to fiddle around for four hours, then headed back to the hospital for my tests.

During the first part, I had to sit in a chair in this tiny room with a machine and a computer in it. They put the machine over my leg for five minutes. I had to sit still and I could see some graphs moving around on the computer as it tested. Next they put the machine up to my neck, and I sat still for 5 minutes while it tested. After that I was brought to a different room, where I laid on a table and this big machine was brought down over my neck. It took three images, one of the front, and one of each side of my thyroid gland. I had to lay still again, this time for thirty minutes – 10 minutes per image. It was cold and dark in there and kind of scary. I just pretended I was in yoga the whole time (shavasana) so it wasn’t that bad. I was done for the day! It wasn’t a big deal, the radioactive iodine had no side effects, and none of the tests hurt.

The next morning I went for the leg and neck scan again. I’m no scientist, but I did pay attention in school, so obviously the leg scan was the control, and it was interesting to see how the graph on the computer looked differently than it had the day before, right after I had taken the iodine. I couldn’t see the neck graph the previous day, but I could assume it was probably similar to the leg graph, since the iodine was flowing through my whole body at that point. When she tested my neck on the second day, I could see the graph, and it looked the same as my leg graph had the day before, meaning there was still a bunch of radioactive iodine in there. So, at that point, I knew I had a problem. The technician got my phone number because my doctor noted that “if my levels were high, he wanted me to be treated.” I knew she knew I had a problem.

The next day I called the nuclear medicine department because I hadn’t heard back yet, and I figured they must have known the results. She informed me that I have Graves Disease. Ummm… what?

To be continued…