Welcome!



When I was diagnosed with Grave's Disease in January 2011, the first thing I went looking for was information. The second was the stories of others who had been through what I have--particularly those who are living well on the other side. That's why I created this blog: to share with you what I have learned, and what I have experienced, so that you can find comfort in knowing it's going to be okay.


My Story

On Christmas Eve, 2010, I received the call from my doctor that I had a hyperactive thyroid. I was just about to leave for Christmas dinner at my husband's grandmother's house, and the news hit me like a semi truck. Trying to search my brain back to high school health class, I couldn't even remember what a thyroid was, let alone what it meant for it to be overactive.

Over the next few hours and days, as I did research, I came across information about information about Graves' Disease, and when I did, I felt like I'd been hit by that semi all over again. I knew from reading the symptoms that that was where my diagnosis was heading. And sure enough, a thyroid uptake scan soon after confirmed it.

At the time, my husband and I had been trying to conceive. Graves' Disease not only put those plans on hold, but influenced my treatment plan as well. My doctor first put me on propylthiouracil (PTU) but called in a fuss five weeks later to report that I needed to stop it immediately, as the PTU appeared to be destroying my liver. At that point, too sick and too afraid to try other options, I opted for the Radioactive Iodine Treatment (RAI).

I'd like to say that it was all easy after that, but feeling better took a long time. In fact, it wasn't until almost four years later (fall 2014) that I finally started to really feel myself again and stay that way consistently, week after week. Unfortunately, to get to that place, I had to change doctors and finally discover that the doctors simply weren't going to figure it out for me. My levels kept jumping up and down and they simply couldn't figure out why.

Luckily, I did. After much research and testing different theories over the past few years, I discovered that coffee (my best food friend since childhood) was interacting poorly with the Synthroid. Thus each time I had a gall bladder attack and quit coffee, my Synthroid levels changed again, so my doctor switched my dose again. And when I started drinking it again, within a half hour of taking Synthroid (because the doctor said that was fine), my levels changed again. After reading an article about the affects of caffeine on Synthroid and how some patients were benefiting from taking Synthroid at night, I tested it out. Sure enough, it worked.

Now I take my Synthroid at the same time each night, at least two hours after I have last eaten. I have also quit drinking caffeinated beverages all together. But by taking Synthroid at night, I now avoid the danger of any other food interacting badly with the Synthroid, or caffeine, should I decide to splurge one day.

While it was a long road to recovery, there were good things that came out of that time. I found that one of the things I could do despite how I felt was sit and work on my computer. So I finished my first novel during that time, and it must have turned out all right because it became an Amazon bestseller within a few months. So I wrote another book and another and another. And I found a new career.

So Graves' Disease may not be an easy road. But it's not the end of the road either. And perhaps for you, it will be as it was for me, another beginning.

Best wishes on your journey,

Amy Joy

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