Hi! My name is Niki and my body attacks itself. What cool thing can your body do? Ok, it’s totally not “cool” but I have to find a little humor in my situation. You see, I have hypothyroid and Hashimoto’s Disease. Hashimoto’s is an autoimmune disease in which the thyroid gland is attacked by a variety of cell- and antibody-mediated immune processes, causing primary hypothyroidism.
Maybe I should rewind a bit to February to tell the whole story. I was going about my days like any other when my life changed. I had just had a great workout, came down for dinner and boom, I had a high fever. My immediate instinct was that something was seriously wrong as I have never in my life had a fever just out of the blue. Four days later, with fever in tow, I saw my doctor and explained my only other symptom: extreme fatigue. Like bone crushing exhaustion. I was sleeping 14 hours at night and napping during the day. No matter how much sleep I got, it was never enough. He did a battery of tests over several weeks and found nothing except low Vitamin D. His diagnosis: it’s a virus. I saw several other doctors and even went to the ER twice over the following weeks. I was starting to have very bad chest pains and trouble breathing, yet no doctor could give me a diagnosis. They either believed it was a virus or I was just a “tired mom.” I had been tested for Valley Fever, pneumonia, Lupus, Mono, and other diseases, which all turned up negative. I had such severe brain fog that I could no longer drive most places. By this time, I had several other symptoms that kept me in bed daily, the list was pretty long.
A Hospital Stay With No Answers
Every time I did not get any results that gave me an answer of what was wrong with me, I would see a different doctor. I knew in my gut something was wrong with me. Adults do not just have a fever everyday for weeks! I was finally admitted to the hospital in March and I actually felt happy because you get answers at hospitals, right? You go to the hospital for a problem, you get diagnosed, receive medicine for whatever is wrong and you go on your merry way. Wrong! I spent three nights in the hospital and had every test available. Actually, my OB/GYN called it “the million dollar workup.” I was poked and prodded so much with blood tests and blood cultures that they had to go through my wrists and hands to get blood. I had two MRI’s, x-rays, antibiotics (because let’s just throw stuff at you and see what sticks!) and was getting medicine for pain, which weirdly enough was helping me breathe and taking away the excruciating pains. I had a hospitalist and an infectious disease specialist working on my case. At one point my doctor told me she would check my thyroid. Good! I had been questioning my thyroid for the last four years and was continually told it was normal. The results came back and I was told my thyroid was fine, which I confirmed again with a different nurse. I was discharged and my doctor finally asked me, “Do you have anxiety?” I thought, “Great, they think I’m crazy!” And that’s how I left the hospital. Sent packing with a prescription for Xanax and my doctor telling me that I was manifesting my symptoms. Unbelievable, right?!
I went and got copies of my hospital file and poured over everything! I knew there were answers in there and guess what? My lab report showed my thyroid going haywire on two separate days that it was tested! My numbers were very low, yet I was told they were “normal.” So, even longer story short, I researched obsessively for hours and days and weeks! I joined several Facebook groups and received wonderful advice. I found a Naturopathic doctor who was just a tad crazy. I found out later he wasn’t even a doctor (that’s another story!) even though he proclaimed he was one. He told me to stop eating juicy fruit and vegetable broth and wear two layers of clothing always. Folks, I’m not making this up, a reality show couldn’t even make this stuff up!
I did find another naturopathic doctor who literally gave me my life back. My fever lasted every day for three and a half months! I have hypothyroid and Hashimoto’s Disease, along with a slew of other deficiencies and imbalances. The reason I was having chest pains and trouble breathing is because Hashimoto’s causes inflammation. I am still trying to find my right dose, still getting second opinions from other Naturopaths and trying to get everything corrected, but for now, I am able to do almost all of my normal activities and literally give thanks every day. I was bed ridden for almost four months, so being able to do simple things like take my son to school or go to the grocery store still makes me ecstatic. The funny thing is, during my entire ordeal I never looked “sick” yet my body was and still is fighting an internal war.
Ways to advocate for yourself:
1. Research! Do tons of research whether by reading books, searching the Internet, or discussing with friends or family.
2. Be prepared. I always write a list of questions and concerns with my doctor and pull it out during my appt. I have a pen to take notes because I know I will forget what my doctor says if I am receiving a lot of information. If I do not take a list of questions with me, I will forget!
3. Write a list of tests you want done. There were several times I ran into doctor’s saying I didn’t need a particular test but I pushed and pushed until they did it. I figured why not check if I’m going in to draw blood. Even if you get a “no” when asking for a test, stand your ground and push for the tests you want.
4. Do not be afraid to question your doctor. If you have reputable research, take it in to show your doctor and discuss it with them. Do not be afraid to ask questions and get explanations.
5. Ask for copies of your records and lab reports. These documents are your personal records and you have a right to have a copy of them. Look over every detail to make sure nothing has been missed.
6. Ask your doctor for the treatment plan and information about medications. Ask about side effects and what time of day to take any supplements or medications.
7. Get a second, third, fourth….or eleventh opinion! For my experience, it was eleventh time is a charm. Do not feel that you are wrong by getting so many opinions. It is important that you find a doctor that you are confident in.
If there is one thing I want you to take away from my story it is this: be your own advocate because if you don’t, who will?! Do not take no for an answer. Do not take “normal” for an answer. Get a second, third, fourth opinion if you must. I saw ten doctors. Ten doctors before I saw an eleventh doctor that could help me. There were days I called obsessively trying to get answers or lab results. Did I look like a psycho? Yes! But I did not care because I wanted my life back. I fought for my life. I researched to the point where my family told me I was obsessed, but I had to. I needed to know every single piece of information so that I could get better. I armed myself with knowledge. If I didn’t fight and refuse to give up, where would I be? Possibly still sick. I was my own advocate because who else would be? Do not ever let anyone make you feel as if you are crazy. You know your body more than anyone else. Sometimes us mom’s put everyone else first instead of taking care of us first. Take care of you and be your own best advocate!
I would love to hear about your experiences if you have gone through any of this. I love talking with others, educating, and learning techniques that have helped others!
