Chapter 4: Against The Odds
As instructed, I returned to my endocrinologist after the ultrasound and lab work. I knew the ultrasound had detected three nodules on the right side of my thyroid because the ultrasound technician had informed me. However, until this day there had been no confirmed diagnosis of Graves disease. That was about to change.
The endocrinologist communicated to me that my thyroid levels were “so high that they were unable to be measured”. I was literally off the charts. It was going to take a lot of work to get this under control.
It was during this visit that I got the initial official rundown on Graves disease, and I was given the treatment options of medication for a year, radioactive iodine to “kill” (yes - she used the word “kill”) the thyroid, or, possibly surgery later on.
Well….I can tell you, and I also told her, that there was absolutely no way I was “killing” any part of my body. I also was not going to consider radiation. I mean….radiation is really bad for you, isn’t it? It seemed, at that point, the only medical option I was willing to subject myself to was medication for a year. I had made my decision right then and there. Which led to the following…
First of all, she advised me against it. Simply put, she felt it was not worth putting my body through it, especially because of the possibility of liver toxicity and agranulocytosis. You can look that word up if you’re really interested in it, but basically it means that my white blood cell count would drop so low that I would be susceptible to all kinds of infections and complications. Also, because of the possibility of developing a toxic liver I would be required to spend a lot of time getting blood work done. On top of all that, she “warned” me that there was only a 30% chance of remission with this disease after using medication for 12 months, and that “most people choose radioactive iodine because it relieves their symptoms quickly and they are able to just get on with their lives“. She explained that once I had radioactive iodine I would be hypothyroid for life, and I would need to take thyroid hormone replacement medication - for life - and that this medication is identical to our own thyroid hormone - so it was safe. I did not want to be tied to a medication, doctor visits, and routine blood work for the rest of my life. No way. I again expressed my desire to take my chances on being one of the thirty percent. I thought…well thirty percent is better than none, and who’s to say I can’t be one of them? She yielded to my wishes, but I could tell by the tone of her voice she was thinking I was a stubborn fool. What she didn’t realize was that I was not her typical patient, and I was willing to do absolutely anything and everything I could to increase my chances of remission. Yes, I was willing to do that. Without giving it a second thought. I was taking control and putting myself in charge of my health. It was going to be a long year. Here we go……
The endlessly curious person in me went home to do some research. After the conversation I had just had with my doctor, I wanted to find out more about this thirty percent number. Where did this number come from, and what did it really mean to me? After all, this was going to be my goal for the next year of my life…to be one of the thirty percent. Here’s what I discovered:
The population of the United States as of the last census in 2012 was approximately 313.9 million. Of that, roughly 1 to 3% of people are diagnosed with Graves disease. I figured out what 2% would be, and that number was 627,800. Six hundred thousand people a year at any given time are diagnosed with Graves disease in the United States. I also found that this disease affects women ten times more than men. Being a woman, that means I am in the company of approximately 570,730 others this year. Now, given that there are three treatment options available, and really no way to find out how many people decide to choose medication for a year, I needed to just divide the last number by three. That would give me one third of 570,730, which is 190,243. Lastly, of those who might possibly choose to take medication for a year, only 30% achieve remission. Now the number falls to 57,073 women a year in the United States. Divide that number by 50 states, and you reach 1,141 women on average per state, per year, that achieve remission. I took it one step further. Divide that number by month and it is approximately 95.
All this means that approximately 95 women per month, in my state, in any given year, that are diagnosed with Graves disease, and choose medication for a year, achieve remission.
The population of my state is approximately 8.865 million. That means my goal was to be one of 95, out of close to 9 million people in my neck of the woods. That 30% number was now reduced to the cold hard reality of 0.013% . I had better odds of winning the lottery.
Life Lesson #4 - Learn all you can about your enemy. It will make defeating it easier.
Graves Disease Lesson #4 - Learn all you possibly can about Graves disease. What you want to focus on is the pathophysiology - how the disease functions in the body. Understand that Graves disease is an autoimmune disorder with a genetic component. That means you were born with a certain protein on your DNA. You cannot change your genetics. This genetic predisposition can be triggered by certain chemical processes in your body, such as the stress response and how your body uses the nutrition you provide it. The thyroid gland is the gland that endocrinologists focus on with this disease because it is the one responsible for the symptoms your are exhibiting. However, the thymus and adrenals play an important role also. So do your liver, kidneys, and digestive system. Your body has learned to attack itself. It cannot un-learn it, but it can be controlled. Control the attack, and the symptoms will disappear. The focus is not so much on the thyroid, but on the immune system. An endocrinologist will treat the thyroid - and actually, only treat it just to the point that they can control the symptoms of a hyperthyroid. It is up to you to assess your health history, current health status, and your health needs. It is up to you to learn what you need to support your immune system and your entire body to achieve the results you are looking for. We cannot “cure” Graves disease, but we can certainly live symptom free. And we all deserve that chance. Even if the chances are very small.
- Dorian A., RN, CHLC
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