An autoimmune disorder almost killed me

It hasn’t been more than one year since my frequent ER visits. I kept being told there is nothing wrong with me as I was almost about to faint and crash. I was sitting in an emergency room being dizzy, experiencing panic attacks, strongest migraines, a foggy brain, and constant depression. A doctor was showing up and telling me there is nothing wrong and they should let me go. I was searching for countries where I can voluntarily terminate my life.

Primary care doctors failed to understand the big picture and assumed I was suffering from a combination of chronic depression and constant work-related stress. The 911 treated my as a criminal if I ever asked for help because people only suffer from anxiety due to drug abuse.

I was in a looping nightmare. One of those days where I felt the most anxious, I decided to visit the nearby urgent care to see what the doctor would tell me new. He checked quickly if I am suffering from a fatal condition and prescribed me Ativan. I was already skeptical about psychoactive drugs, especially about benzodiazepines but decided to give it a try as I saw it one of the final resorts. Because the other was sleeping pills and committing suicide.

I have been prescribed 7 Ativan pills. Being skeptical, I only took a quarter of one pill. I didn’t know, within 20 minutes, my life was about to change. My heart was no longer racing against me, I felt no physical stress and felt love and care coming towards to me in all directions. This was the turning point in my treatment because Ativan reminded me how easy the life was once and how sick I really was at that point. How I felt was not permanent, it was a temporary perception as a result of my condition. At that time, I was still rationale enough to see Ativan is just concealing my actual health condition and I shouldn’t depend on it unless it becomes very critical. It took me almost 6 months to use all the seven pills. One quarter at a time, only when I desperately needed them.

The goal of finding an actual solution became my primary job. I have spent 50% of my time searching for doctors, visiting them, explaining my situation to see if they have anything to offer. To be clear, I have one of the best health care coverages in the country and yet still had to put so much time and money to find actual treatment. One of those days, I felt exhaustion about my search, I realized that my employer has a clinic onsite with primary care doctors.

The primary doctor onsite ordered immediately ~25 blood tests to figure out the constant fatigue. She even ordered a genetic test that I found unnecessary and thought it was yet another way to make labs more money. Within days, it will become clear that I was suffering from a combination of problems. We were seeing the first symptoms of Hashimoto’s thyroiditis, an autoimmune disease where the body is attacking its own thyroid hormone and makes the thyroid production ineffective. A genetic mutation that makes my methylation cycle ineffective and ending up with producing less B-12 and ATP. Being low on Vitamin D, that was not helping me with inflammation and the fatigue. Being high on estrogen and low on progesterone that contributes to constant fatigue. An elevated cortisol level. Signs of insulin intolerance. Signs of damage in the adrenal gland due to excessive stress. We began a long journey of interpreting what tests are saying and keep iterating with more tests or experimental treatment with nutritional support.

For the next 6 months, we were up to go through every chain reaction in human body to find out what could have been triggering all these semi-related conditions and where we should begin the treatment. The treatment began with nutritional support, taking molecules in forms I cannot produce myself, such as methyl B-12. My cognitive functions were coming back as we were filling the nutritional gaps. Mentally, I started to feel able, happy and energetic again. I was calm, never experienced panic attacks again.

The physical stress and my low physical energy level are still not resolved. My weight jumped from 130 lbs to 157 lbs in the past year. My antibodies are still being elevated and I had to begin using thyroid hormone (T3 + T4) a few days ago. We don’t know if my body will start to fight more aggressively and produce more antibodies as my body is supported by additional thyroid. If my immune system decided to attack more, I won’t have a clear path to recovery and that’s scary as fuck.

For now, trying to achieving more of a normal chemical state and losing fat before it causes additional problems are my initial goals. I feel helpless because there is little known about what triggers autoimmune diseases and how to cure them. I am currently appreciating the fact, at least, I know what’s wrong with my body and no one has the luxury to tell me I was exaggerating my condition and there is actually medically nothing wrong with me. This attitude almost killed me, ended up with me not seeking for medical treatment in the past when the condition was not that complex and chaotic. I am living in a catastrophic fuck now.

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