self.watch

Hi all, happy April Fools! Feeling like absolute shit today, but I'm trying to be a little more consistent in my posting. There's so much I want to write about, but I think it's important to fully document my story first. This post will serve to fill in the details of my medical background and potential causes of my illness. I should note that while in the beginning I was (rather obsessively) trying to identify this cause, I'm now more focused on symptoms-driven treatment.

To start, a little about me. I'm in my early/mid 20's, male, and generally in good health. I'm in good shape and worked out regularly leading up to my symptom onset. I have no history of mental health conditions and can say the same about both sides of my family. In fact, I previously would have said that my mental health and emotional stability were some of my defining strongsuits.

The only relatively serious medical issue I've faced is hypothyroidism, which presented when I was a child. I was treated with armor thyroid for a couple years and weaned off the medication once my levels stabilized. My thyroid luckily remained in check for years afterwards.

Thyroid Issues

Although I wouldn't consider myself a hypochondriac, I've always been diligent and proactive with my health. Upon graduating from college and moving for my career, I felt like I had slightly less energy than usual. This could have easily just been a symptom of burnout, but I had my thyroid levels checked by my childhood physician (who treated my prior condition) and discovered my TSH was slightly elevated at 4.8. Those familiar with this ailment will note that such a TSH reading is barely recognized as abnormal; many scales identify a 'normal' reading to be below 5. My physician considered my results to indicate a mild case of subclinical hypothyroidism (high TSH with normal T3 and T4 readings), and after discussing treatment, prescribed me 120 mcg of NP Thyroid, a form of naturally dessicated thyroid medication containing both T4 and T3 (the active hormone).

This proved to be a mistake. I began my new medication regimen on April 18th, and a week and a half in I became more anxious than usual, developed a tremor in my hands and felt uncomfortably wired. After doing some online research I discovered that my prescribed dose was much higher than the norm for a case as mild as mine. Two and a half weeks into my treatment I returned home for mother's day and felt severe chest pain, which lingered for the next few days. This was the final straw; I booked an appointment with a well-rated physicial in my new city for the following Monday and explained my situation. He was astonished at the dosage of my medication -- noting that he would have had me on 1/8 my prescribed amount based on my labs. He recommended ceasing use of the medication cold-turkey immediately. I should emphasize the timeline here; I quit the medication on Sunday, May 9th, just 5 days before my symptoms began.

COVID-19 Vaccine

I received my first vaccine dose on April 10th and my second on May 10th, both Moderna. I didn't experience any side effects from either shot aside from a sore arm. Looking back, the chest pain I experienced in late April/early May could have been a mild case of myocarditis from the first shot. However, chest pain is a known symptom of hyperthyroid activity. Regardless, the timing of the second shot is suspect, being just four days before symptom onset.

Topical Prescription

Around this time I began using a topical formulation of minoxidil, dutasteride and tretinoin I purchased from a compounding pharmacy online to prevent hair loss. I applied the first dose around a week and a half before my symptoms began, and my second dose the night before. I didn't experience any side effects I attributed to the medication during my first dose or immediately after my second, aside from a tingly scalp.

Head Trauma

There are two specific incidents involving head trauma which occurred in the months leading up to my symptoms.

In mid/late March I was involved in a car wreck which involved a rapid deceleration (45 to 0). While I didn't have any direct head trauma, there was a good deal of whiplash, and my head hit the airbag hard before slamming back on the car seat's pillow. I was luckily able to walk away from this accident injury free and was not diagnosed with a concussion; I don't recall having any concussion-like symptoms either.

In late April, roughly two weeks before my symptoms began, I was punched in the head by a homeless man while walking with some friends at night. I had a few drinks that night and the details are hazy, but I recall being hit on the left side of my head near my ear. I don't have any memory of the rest of the night (though this could also be attributed to alcohol). The next morning I woke up with a pretty severe headache which I attributed to a hangover. I recall having some trouble hearing out of my left ear, but I figured any issues would clear up with time. Absurdity of the situation aside, I really should have sought out medical attention at this time and it's likely I did sustain a concussion. The headaches did end up mostly dissipating over the next week however.

Approximate Timeline of Events

• 03/17/21: Car accident
• 04/10/21: First COVID-19 vaccine dose
• 04/18/21: Begin thyroid medication
• 04/27/21: Punched in head
• 05/07/21: First topical prescription use
• 05/09/21: Discontinue thyroid medication
• 05/10/21: Second vaccine dose
• 05/13/21: Second topical prescription use
• 05/14/21: Hell begins.

What was the trigger?

At this point, nearly 11 months into this nightmare, I still am not certain what caused my illness. I would venture to guess it's likely a mix of the above circumstances. There is a good chance I will never know what exactly the cause was. I did spend a great deal of time speculating, however, and came up with a few hypotheses which I think have some value.

Severe thyroid dysfunction. While at this point I'm not convinced this entirely explains my symptoms, there is no doubt that my thyroid hormones were whipped around to a great degree when starting my intense regimen of NP Thyroid and then suddenly halting. Just a few weeks after quitting, my TSH read 6.3 which was the highest it had been since I was a child. A few months later it had risen to above 11. It seems my pituitary is working hard to stimulate my thyroid gland's hormone production, which suggests some form of dysfunction, perhaps just fatigue. There are many cases of thyroid issues causing cognitive issues as well as initiating symptoms under the 'visual snow syndrome' umbrella. However, my case is severe, and none of the endocrinologists I have met with believe my medication could have triggered all of my symptoms.

Vaccine-related inflammation. I'm personally doubtful that the vaccine alone could be responsible for my symptoms. While I've read some cases of people sustaining 'COVID-19 long haul'-type responses to the vaccine, I haven't seen a case as specific and severe as mine. My symptoms are almost entirely neurological, while most vaccine-related issues seem to involve fatigue and vascular inflammation which I do not have. The vaccine does invoke an immune response though, which can induce temporary inflammation and potentially re-ignite past infections. This was partially why I went down the Lyme rabbithole, as I was curious if the vaccine had potentially flared some kind of dormant infection.

Androgenic disregulation from topical prescription. This is an interesting and also rather scary hypothesis. There's a large community of individuals who have suffered long-term issues after use of popular hair loss medications, specifically finasteride and dutasteride. These medications are known as '5-alpha reductase inhibitors', which at a high level inhibit the enzymes capable of converting testosterone into DHT. While most of the issues these drugs cause are related to sexual dysfunction (which I luckily am not suffering from), I have seen a few cases of individuals developing similar neurological symptoms after quitting these medications. The timeline is also extremely suspect, as I applied my second dose the night before my symptoms began. However, I have yet to find anyone to suffer any form of negative side effects from a topical dutasteride formulation, and in my case I wasn't ceasing the medication but actually reapplying. Undeniably, however, the medication does affect the male hormonal profile, and can disrupt several other important pathways involved in neurosteroid synthesis and maintenence. I might go into depth on this in a later post.

Concussion / TBI. This is a straightforward, logical and compelling hypothesis, especially at first glance. It is possible I suffered a mild concussion after my car accident, and extremely likely I suffered a mild to moderate concussion after being physically assaulted. My biggest difficulties -- light sensitivity, overstimulation, trouble reading -- are extremely common after head injury. After telling my story to countless specialists in various disciplines, virtually all have agreed that this is the most likely explanation for my struggles. I didn't realize this at the time, but concussion symptoms can be delayed, and can get worse over time if one doesn't take a break from straining activities or seek rehabilitation as your brain will begin to compensate by improperly adapting. The full spectrum of my symptoms, however, is not easily explained by a simple physical head injury. This leads to believe there is likely more at play.

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At this point it should be pretty clear that I'm unconvinced a single one of the above factors fully explains my case. It's possible and perhaps even likely that all of the factors combined to create a 'perfect storm' of physiological disturances which cascaded into my severe symptom profile. I'm personally leaning towards a case of post-concussive syndrome doubled with an acquired sensory processing disorder which was likely caused by rapid hormonal shifts and subsequent disregulation of essential neuroendocrinological pathways. This could have caused lingering neuroinflammatory responses which were kicked off by my vaccination and perhaps reignition of past infections.

What does this all mean for me? Honestly... not much. I realize now that trying to pinpoint the precise cause is likely futile and also not necessarily the solution to all my problems. I have a specific set of symptoms which are most distressing to me at the moment and I'm attempting to remedy them through various therapies. Perhaps one day in the future I'll have a better picture of what exactly went wrong. In the meantime, however, I honestly have no other choice than to accept my current situation and attempt to reach a point of comfort and stability.

In my next post I will fill in the rest of my timeline up to today, summarizing the treamtents I have sought and received.

Cheers,

-A

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