Well, here we are, writing a blog, but I’d always pictured myself writing something more exciting and nimble, such as fashion, travel…or babies. Just a few short years ago I was just another 20-something female taking her good health for granted. It's funny how an illness can drastically change someone's goals and future. One thing that’s always been true is that I've always enjoyed helping others. The day that I finally found out that there was a name to the 'unknown' illness, which we suspect I've had symptoms of since puberty, was the day that I decided that I wanted to share my ever-unfolding story with others, and do my part to spread awareness about the way that Hashimoto's can go for years without a single doctor adequately screening for it, despite one’s family history of autoimmune thyroid diseases. I hope that the first thing that others with the disease learn is that the TSH level may be 'normal' on a standard lab's scale, but doctor's cannot accurately assess someone's condition until they consider the full scope of symptoms, combined with all of the thyroid tests, such as T4 Direct and Reverse T3. Remember that if you suspect that you have Hashimoto's, you'll need to be tested for two anti-thyroid antibodies, which are Thyroid Peroxidase (TPO) and Antithyroglobulin.
Before I tell you my story, let’s briefly talk about the basics of Hashimoto’s. I promise that I will not be one of those angry bloggers, but let me get this one out of my system. Ok, you probably already know that it is an autoimmune disease of the thyroid, which is a butterfly-shaped gland in the neck that has many jobs, including regulating temperature, metabolism, and energy. In Hashimoto's disease, the body creates anti-thyroid antibodies that attack and destroy the gland, inhibiting the gland from being able to successfully create thyroid hormones on its own. While it’s being attacked, the thyroid will essentially fight the antibodies by working harder to produce the hormones. This is one reason why the thyroid can ‘swing’ from hypo to hyper, and sometimes even briefly returning back to normal. The disease can cause one’s TSH (Thyroid Stimulating Hormone) level to bounce from high, to low, and back to ‘normal’. This may cause sufferers to feel like they are riding a rollercoaster. In the end, the thyroid will die and becomes hypo. Of course, this process can take decades and each case varies, especially if it’s undiagnosed for years….Ahem.
Now, diagnosing the disease SHOULD be easy. In fact, it can be identified on a few simple blood tests. Unfortunately, for some reason unbeknownst to me, most doctors don’t routinely screen for the test, EVEN WHEN YOU HAVE A FAMILY HISTORY OF IT. I don’t typically ride on the conspiracy theories train, and I do have faith that most people in the world mean well, but I have wondered if doctors decline to routinely run the tests for fear of fighting with insurance companies about the necessity of the tests, or if the doctors really don’t understand that a cluster of symptoms, like depression, brain-fog, and fatigue can only relate to INSERT mental disorder here. What is even more discerning to me are the multiple studies (here’s one-Maternal Thyroid Deficiency & Pregnancy Complications: Implications for Population Screening) that exhibit
evidence that the antibodies, of which attack the thyroid, are related to several pregnancy complications, including miscarriages, preclampsia, preterm births, and low birth weights, as well as infertility. Still, it’s not common practice for doctors to screen fertile women for the disease, including those with a family history of autoimmune thyroid disease. I live to tell.
Now that I’ve blown off some of my steam, I’ll discuss my own personal story of how my husband and I came to learn that I have Hashimoto’s. So, bear with me because I do have a long story to share, so in an effort not to overwhelm people, I’ll break it up in to multiple posts. :)
I am currently 30 years old. The majority of my life was spent in good health. I've rarely had colds, have never had the flu, or strep throat, but since my teenage years, I have been someone who must sleep in late to feel refreshed. I've also endured bouts of insomnia for decades. I used to joke that I was just a nocturnal creature and never really considered that insomnia could have been a symptom of a disease. So, I usually required about ten hours of sleep per night, and wasn't the easiest person to drag out of bed. I used to wonder if I was just an incredibly lazy teenager because my friends had no problem getting up early and seemed more motivated than I was, but I still felt this fire inside, and my mind was always full of motivation. I had unusual bouts of acne-like break outs on my face, chest, and neck. The painful sores would go away for months and precipitously come back in clusters, only to go away again. Some of the acne would leave permanent and smooth white (hypo-pigmentation) spots on my skin. It was as if my skin had two different personalities. It was not only a frustrating battle, but an embarrassing one because the sores often resembled chicken pox and were hard to conceal.
Around puberty, I started having issues with stress management and coping with negative experiences. It was very easy for everyone in my life to blame it on the fact that I was a teenager. I started panicking and losing my 'cool' during moments of stress and during arguments with people. It's as if the female Hulk had arrived. I've always said that it's like someone else has taken over my body and mind. After the incidents, combined with crying, my head felt clearer and I could rationalize so much better, but I undoubtedly had an overwhelming amount of guilt because of my actions. I've always been a caring and compassionate person for humanity and animals. I thought that I was crazy and wondered why I couldn't control myself or if I was even trying hard enough to control my emotions. I knew deep down inside of me that there was some sort of imbalance going on in my body. It is likely that I had been experiencing adrenaline rushes and the start of the thyroid problems. We now know that Hashimoto's patients can have problems with their adrenal glands too. Still, my mom took me to a therapist, who put me on anti-depressant, which made me sleep even more and I walked around completely censored, such as someone with their mouth taped. I wasn't experiencing the clinical term of depression, but I knew that something was not right and I was too young to understand hormones, therefore was unable to properly articulate my symptoms to doctors.
When I was about fifteen, my mom found out that she had Graves disease, which is also an autoimmune disease that attacks the thyroid, but it causes the thyroid to be completely hyper. Since it's a genetic condition, my mom took me to see her doctor, and he discovered that I had a goiter. Unfortunately, any blood work or tests that he did at that time were 'normal'. I've never thought about that incident again until recently when my mom brought it up in conversation.
In my early 20's, I was diagnosed with ADHD and started taking Adderall. It seemed to help me stay focused and motivated to complete tasks. Around that same time, I started having neck pain. I'd never been in any kind of accident, but I started getting whiplash from typical daily tasks. I was treated by the doctors as though I had been in an accident. They never found anything out of the ordinary, which would have explain my pain. I sought chiropractic care, but the whiplash continued to occur a few times each year.
Like many people, I cannot recall the exact day, week, or month that I began to experience the debilitating fatigue or brain-fog. At first, I chalked it up as being from the stressful job that I had at the time. I was working as an insurance agent and spent most of my time on the phone. The company that I worked for was often unorganized and signed unrealistic service contracts with partners. I wasn’t working in a sweat shop, but it was not an ideal environment. I would often hold off on going to the bathroom until I was ready to burst, only to come back with a curt message on my computer that read, “Where are you?!?” So, it was easy to disregard my symptoms because of my stressful days at work. Plus, we were planning our wedding. My gut instinct started telling me that something was not right within my body. I remember feeling bursts of adrenaline rushes throughout the day, but would find myself crashing too. I didn’t drink coffee because it made me even more anxious. I’d get a sudden and drastic wave of fatigue and felt ‘brain-dead’ at the same time. It was like something sucked the energy and water out of my body. At the end of the day, I’d leave with this exhaustion and a dehydrated feeling, but my heart and mind were still racing. It would take hours for me to fall entirely out of this anxious state and I felt as if my vitamin levels were depleted. I started having brain-fog to the point where I had trouble finding the right words to say, misspelled common words, and would easily get confused while in conversations with customers and co-workers. I'd always been a fairly witty and confident person, so I was alarmed by the changes in my comprehension and brain power. After a few months, I started experiencing diarrhea in the mornings. I began to have panic attacks too. I had little to no appetite until I got home from work. I was so busy at work that I rarely noticed how sick I was becoming until at the end of the day. When I got home from work, I’d notice that my shoes were too lose and my feet, hands, and nose would often turn bright red. Looking back, I was probably struggling with hyper and hypo swings sometimes even on the same day, and probably had adrenal problems, which are not uncommon in Hashimoto’s.
On many weekends, I would recover by sitting on my couch, just exhausted and unable to focus on activities. I was usually too tired to go out with our friends, and could barely think clearly enough to plan our wedding. I knew that something was wrong with me, but at that point I was not so sure that I wasn't having some sort of break down. On top of that, Aaron and I were about to get married. I decided to go to my family doctor to get checked out.
I told her that I had been experiencing everything from dizziness to diarrhea and that my gut was telling me that something in my body was off. I also explained my family history to her, which include thyroid and other autoimmune diseases, however she didn’t raise her eyebrows in concern, so I didn't either. That was probably a red flag. I was naïve back then and thought that doctors knew everything. Oops! She ran some basic blood tests on me and they all came back normal. She told me that I had stress and needed to "take it easy" or "find a new job." At that time, I did not disagree with her. So, I decided to start looking for a new job.
A few months after our wedding, I started having lower back pain, and muscle spasms and discomfort in my hamstring muscles. Then, my lower back and sacrum area started aching and I eventually 'threw' out my lower back. I was unable to stand up straight without help from Aaron. I got an MRI and the results were normal. I saw a spinal specialist and another chiropractor and neither doctor could point out anything other than normal degeneration. It was a scary time for me because I was unable to work at all during those incidents and I could not get relief from the pain.
My gynecologist ran some blood tests on me and informed me of my blood type, which I hadn't known was one of the rarest types in the world. I later studied copious amounts of information about my blood type (B-) and the Rh-Negative factor that is present in my blood. There are many studies and theories about the connection between 'negative' blood an autoimmune diseases. I will discuss this in later posts. My gynecologist also discovered that my vitamin D level was low. Although it is common that most Americans do not get enough vitamin D, I actually did and was quite surprised by her findings. So, she prescribed me 50,000 IUs per week for six weeks. It seemed to provide me with bursts of energy that I hadn’t felt in years. I thought that I had finally figured out why I had been so fatigued. Unfortunately, my energy level ended up plummeting within a few weeks. So, it was back to the drawing boards.
