A year ago I was running a 5 minute PR at the New York City Marathon. This year I am finding myself out of breath while performing simple tasks such as showering, changing a diaper, and climbing the stairs. More times than I care to remember I have been sidelined from running. Not because of injury, but because of an autoimmune disease.
Dealing with an autoimmune disease can be mentally draining because it is when your body’s own immune system attacks healthy cells and tissues. You quite literally are your own worst enemy and feel like you have no one to blame but yourself.
Currently, my body is in the midst of a really bad flare up. Four weeks ago I went for a run and had to stop because it hurt to breathe, my lungs ached, and my heart rate felt like it went through the roof. Because I had successfully run a few days earlier that week, I attributed it to the lack of sleep due to a traveling husband and a newborn baby — figuring that I must have been fighting something off and that the extra stress was just making me sick.
However, after spending the next few days catching up on sleep (as much as you can with two young children, at least) I realized that something was still wrong. My chest hurt. My lungs hurt. Every joint in my body hurt. I was having crazy hot flashes and dizzy spells. My anxiety was through the roof. I was ready to drive myself to the hospital just to have someone confirm for me that I wasn’t dying. Things that I had previously attributed to a normal postpartum experience quickly became very scary. Finally when a week had passed and nothing seemed to be getting better, I decided to go to urgent care to see what was happening.
Because I had been experiencing chest pain, they got me in very quickly. My resting heart rate was 98. I had an EKG and a lung X-Ray done and nothing notable appeared (which is good news — except that it didn’t give me any answers). They took some labs and sent me on my way with an inhaler (not helpful). However a few hours later I got a phone call that my TSH (thyroid stimulating hormone) was 0.02, which is extremely low. Because I have Hashimoto’s, I am typically the complete opposite hormone levels – so needless to say my body has taken a drastic swing toward the Graves Disease end of the spectrum. The urgent care doctor called the endocrinologist’s office and got me an emergency appointment for the following morning. Again, my heart rate was extremely high (96) and I felt as though I was going to jump out of my skin. After a second round of labs it appeared that every one of my thyroid markers was off-the-charts bad.
Admittedly, I am scared of medications. I have had some really bad reactions to thyroid medicine in the past (the last time I crashed was 2017 after starting a drug that didn’t work for me and it took months to recover). Because I am breastfeeding, my treatment options are even more limited. It also becomes a vicious cycle — I already have anxiety and the current state of my thyroid would make anyone feel anxious. For someone with anxiety it becomes almost impossible to function. I tried to wait it out, but when another week had passed and I found myself having to take breaks in the middle of my shower and when straightening my hair because my heart rate was spiking up to the mid 120s, I decided that I was going to have to do something. After a few more doctor appointments I finally resigned myself to the fact that the situation was getting dangerous and I was going to have to take the medications.
At first I felt better finally having a plan, however, different doctors have been giving me conflicting advice which has made the situation even more difficult to navigate (who do you trust?!?) In addition, the terrible “what ifs” start running through your head — worrying that this could be more than just the thyroid.
I am also not allowed to run until my HR comes back down – as both the endocrinoligist and my primary doctor have expressed concerns regarding possible damage to my heart. Weeks later it is still jumping all around – sometimes giving me a hint of returning to normal, only to be followed by an even worse spike. Again, very scary, anxiety provoking, and upsetting. Even more mentally challenging is the fact that I continue to feel isolated. Most of my friends are friends who I socialize with while running. I have already been far removed from my normal circle due to taking a step back during pregnancy and I was excited to rekindle those friendships.
In addition, I am terrified that yet again, this will be something that separates me from running the Boston Marathon. I was ecstatic when I got cleared at 6 weeks postpartum to return to running because all my pelvic floor issues had been resolved and felt like I had finally been rewarded for being smart and listening to my body. I had my thyroid levels checked just weeks before this happened to ensure that I could safely start running without disrupting my hormone levels. But yet again, here we are. Lots of frustration, lots of questions, lots of anxiety…and longing to get back to “normal.”