There is something that is absolutely freeing about validation. This condition (Hashimoto's) has the ability to make you question if you are in fact sick. You sometimes wonder if you're making it all up in your head. Hashimoto's has you going in many different directions emotionally, physically, and even mentally that you often feel like a hypochondriac or a whiner who simply can't get it together. I have struggled with friends, doctors, and even myself on this journey because people don't react when they hear a disease with a funny name and it isn't high up on the autoimmune chain. I mean, I take an Anatomy and Physiology class and it isn't even mentioned in Endocrine or the Lymphatic chapters. Thankfully, I have been validated and I have found out that it is not all in my head.
I went and got a second opinion, which was a struggle within itself. My first Endocrinologist (let's call him Dr. H.) was a jerk. He used terms on our visit that he knew I wouldn't understand and when pressed for information, he visibly became irritated. He blatantly told me to stay off the internet and that my continued symptoms were either from being a mother with 2 kids (because mom's are naturally exhausted to the point that they can't lift their heads) or I had another autoimmune disease. I actually heard him sigh when leaving the office at our last meeting. He made me feel like it was all in my head and that the fatigue I had along with hives, joint pain, and weight gain was simply a fluke. I really wish I could punch him in the jaw because he never took the time to really look at my case. He just looked at my blood work and the numbers were within normal range and that was the end of it.
Shortly after my visit with Dr. H., an Army buddy of mine came to visit and I discussed my case with him and he told me a story about his sister (who has passed) that broke my heart. He impressed upon me that I needed a second opinion and if it didn't feel right, then to trust my instincts. I had heard other people say this to me, but sometimes it just feels different coming from someone you've been to war with. I mean, over a year in Iraq with a person who's seen you at your worse, who knows you've burned poop, and who has slept through mortar round attacks with you is pretty high on my list, so I listened.
I went to my family doctor (Dr. S.) and she listened to my case and tested me for everything under the sun. At that point, she thought I possibly had Lupus. She sent off a request to my insurance company to approve me for a second opinion and they approved it, but sent me to a doctor within the same practice as my first Endocrinologist. Frustrated, I called my insurance company and explained to them that that wasn't going to work and the customer service rep told me to go online and find another doctor and call them back. Here is where I go thyroid on her. I repeated her request to me to impress upon her that surely she didn't want me to hang up the phone, get on the internet, find another doctor, call back and get another customer service rep whom I would have to explain the whole situation to over again and wouldn't you know it she actually had a computer there and could do that herself. I had the approval within 3 minutes. I'm so tired of people not caring anymore. Dr. H. and the customer service rep simply don't care that I'm sick and that I need their help. It just takes too much effort for them to do their jobs.
Here comes the validation and I'm actually crying as I type this out. I go see Dr. O (the second opinion) and he asks me why I am there. Huh? I tell him that I keep telling my first endocrinologist that I still have symptoms and he thinks its environmental or another autoimmune disease and then I go a step forward with my explanation because I can sense I'm going to get the same crap I've been getting and tell him that I am young, I have two children, and all I want is to be able to play with them. I ask him to help me. What has happened to the healthcare system that I have to ask a doctor for help? He looks at me and wouldn't you know it, he actually takes a second look (second opinion, duh) at my file and finds something. He got excited and I was a bit taken aback I must say. He says to me, "your cortisol levels have never been checked according to your file, we have to check them because the Levothyroxine (my medication) may be making you feel worse if you have adrenal fatigue or failure". He goes on to say, "your initial labs would appear to be normal because adrenal failure sometimes masks itself as hypothyroidism". Wow, really!?! He warns me that adrenal failure is rare, but it's worth checking. I must point out that Dr. O is the first doctor to really listen to me and I think he is an awesome doctor, but his staff sucks. They called me about 4 days later with results, but when I called back to the office, they informed that they were unable to locate my file and simply never called me back. I continued to call almost everyday and sometimes they picked up the phone and sometimes they didn't. The day before I was going to go up to the office and go thyroid on those chicks, I called and they told me that the doctor wanted to see me and if I could come into the office at 10 a.m. By this time, it had been almost 2 weeks of waiting. They really suck.
I went back to the office with both children in tow. The doctor comes into the office and of course that's when my most of the time well-behaved children turned into devils. All of the sudden, my daughter was dying of thirst and my son wanted to do laps around the doctor's office. Once I got them settled down, Dr. O gave me my results. My cortisol was abnormally low and my ACTH was low as well, which means my adrenal glands are not functioning correctly and that is why I feel bad. I actually began to cry in the office. I was finally validated and I had blood work to prove it. He went on to tell me that my antibodies were high, the normal range for thyroid antibodies is from 0 to 34 and mine was 1636. Dr. O looked me in my eye and told me that my immune system is killing my thyroid and that's why I feel so bad, couple that with the adrenal issue and I'm literally on a roller coaster inside of my body. He also told me that I needed to do another biopsy because he was concerned that there could be a presence of follicular carcinoma (cancer) and to be safe I should be tested once again. I could have hugged him and I can't begin to tell you how many times I said thank you. It felt good and bad at the same time. I finally felt like I wasn't crazy.
Dr. O is very thorough and he is retesting my cortisol and ACTH just to make sure this is what really is going on. He told me that the numbers suggest that something else is wrong and I may have another autoimmune disease where my body is attacking my adrenal glands. The funny thing is, that's exactly what Dr. H said, but never bothered to do the testing even though it's all in the endocrine system and he is an Endocrinologist.
The past few days have been weird for me. I am sad that my body isn't working correctly, but I am happy to have found a doctor that stopped and looked at my situation in its entirety. I've had blood drawn for everything, but never cortisol or ACTH and it never came up on my own radar. I think about the people who don't have insurance or who have been suffering for 10 and 15 years with this issue and the doctor's simply don't do the testing. I'm incredibly thankful. I now know that it's not all in my head. I'm not depressed as one friend suggested. I'm sick and I'm not ashamed to say it any more. My body is not functioning properly. I'm not a whiner. I guess the moral of this story is to never give up. If it doesn't feel right, then move to the next doctor and the doctor after that, until you feel like you're being heard and help is being offered. And so, the journey continues...