OpenHealth Q&A

Seeking Answers: A Journey with Unexplained Symptoms Over 20 Months

In December 2023, I awoke feeling nauseous. Up until that moment, I had maintained a vigorous lifestyle, both socially and professionally, but everything changed when I turned 40. What started as severe diarrhea that lasted more than two days led me to take Imodium, which somewhat alleviated the issue. However, I found myself unable to eat; any attempt left me feeling worse, causing a rapid loss of weight over the ensuing weeks. Around this time, I also developed posterior uveitis in my right eye and experienced tachycardia—my heart raced after meals and even when standing up after a hot shower. I collapsed during a hockey game, my heart racing uncontrollably. With a diagnosis of gastroparesis, my health took a further plunge. I broke out in a rash, was plagued by fatigue and muscle weakness, and experienced balance issues. In March of last year, I had a lymph node in my lower right jaw surgically removed due to its continued growth; pathology revealed lymph node hyperplasia, but this did not improve my overall condition. During this chaotic period, I often felt disconnected from my body. My heart would race unexpectedly while driving, forcing me to pull over out of fear of a heart attack. Despite undergoing comprehensive cardiology evaluations, the results were always normal. Endoscopies and colonoscopies were performed that confirmed gastritis and a looping colon, but more troubling issues were identified after several emergency visits led to a CT scan of my cervical spine. It revealed significant spinal stenosis between C3 and C7, and I subsequently opted for ACDF surgery in May 2024, hoping it would resolve my ongoing issues. Shortly thereafter, I found myself back in the ER in June due to high blood pressure, a retinal hemorrhage in my left eye, and persistent tachycardia. Around this time, I was diagnosed with Hashimoto’s thyroiditis. My primary care physician prescribed levothyroxine, which gave me hope, but soon after, I learned it was exacerbating my symptoms, leading to hyperthyroidism. Muscle twitches, weakness, and unforeseen breakouts plagued my skin. My balance remained impaired, and during outings on hot days, my heart rate would soar, leaving me dizzy. By late summer of last year, I began experiencing severe facial spasms and tightness around my neck and head. After consulting two neurologists and undergoing extensive tests, including MRIs, I was admitted to the hospital for suspected multiple sclerosis, yet no lesions were detected, and all findings appeared unremarkable. Blood tests for various conditions, including Lyme disease and autoimmune disorders, returned normal results. A recent appointment with an autonomic specialist confirmed that I have autonomic dysfunction. My condition seems to be deteriorating; my flare-ups have become debilitating. Episodes of postural orthostatic tachycardia syndrome (POTS) leave me weak, often requiring a wheelchair for transport to the ER. In these moments, I turn pale and can hardly lift my head. The medical team has recognized my need for treatment, administering muscle relaxants and dexamethasone, which temporarily restores some normalcy, although my stomach issues linger for days afterwards. I realize I’ve omitted many details, and I’m open to any inquiries regarding my tests or symptoms. I am eager to find clarity because I am the primary provider for my family, and I yearn for a treatment that would allow me to engage in a more typical lifestyle. Time feels limited. I prioritize a nutritious diet, hydration with electrolytes, and a regular sleep schedule, but I still contend with fatigue. Recently, when my son suffered a broken arm, I rushed to the ER where my ex-wife was present. The local hospital decided he needed to be transferred to a children's hospital in Philadelphia for surgery that same day. During this chaotic transition, I was attempting to gather his belongings and found myself struggling to stand. Despite my efforts to remain composed, I fainted while assisting healthcare staff. They ended up admitting me while my son was transferred, running standard tests and providing saline treatment. In the past two months, I have been hospitalized four times. Although I perceive myself as resilient, I can feel myself waning. What were once simple tasks now seem monumental. Any advice or suggestions would be greatly appreciated. Thank you for your understanding.

Answers (1)

8/14/2025, 5:40:59 AM

OpenHealth AI

I'm truly sorry to hear about the challenges you've been facing with your health over the past 20 months. Your symptoms and experiences sound incredibly overwhelming, and it's natural to seek answers and relief. Let's break this down and focus on where you can find some immediate support and improvements in your daily life.

Main Points

You have been through multiple diagnostic challenges with ongoing debilitating symptoms, including autonomic dysfunction, tachycardia, gastroparesis, and weight loss. The complexities of your condition make it vital to prioritize symptom management and supportive self-care while continuing to work with your medical team.

Explanation

Your symptoms—like severe fatigue, heart racing, and balance issues—indicate a significant disruption in your body's ability to function normally, partially due to the autonomic dysfunction and symptoms from Hashimoto's thyroiditis. Autonomic dysfunction can lead to conditions like POTS, which explains the fainting episodes and extreme fatigue, especially following exertion. The fact that you aren't receiving consistent relief speaks to the complexity of your situation, and it’s crucial to find manageable strategies to improve your quality of life.

Next Steps

1. Symptom Monitoring: Keep a journal detailing your daily symptoms, diet, hydration, sleep, and any physical activity. This can help identify specific triggers for your episodes of weakness and help your healthcare providers tailor treatment effectively.

2. Hydration and Diet: Continue prioritizing hydration, especially with electrolytes. Focus on small, frequent meals that are easier to digest and consider working with a nutritionist who specializes in gastroparesis or POTS to ensure you are balancing nutrition with your symptoms.

3. Medication Management: Since you mentioned that levothyroxine worsened your symptoms, engage closely with your endocrinologist to find a suitable dosage for your Hashimoto’s thyroiditis that does not lead to hyperthyroid symptoms. Clear communication about symptom fluctuations when medication changes occur is critical.

4. Physical Therapy: If not already in place, seek physical therapy focused on balance and gradual conditioning, as this can help improve strength without overwhelming your system.

5. Autonomic Dysfunction Management: Discuss with your specialist about tailored approaches for autonomic dysfunction, including potential medications that may help to stabilize heart rate and blood pressure. Compression garments may also assist with blood flow and prevent fainting episodes.

6. Support Networks: Connect with support groups for chronic illness, whether online or in person. Sharing experiences with others who understand your struggles can provide emotional support and practical advice.

7. Mental Health Care: Given the emotional toll these symptoms can take, consider speaking with a mental health professional. They can provide strategies to cope with stress and anxiety related to chronic illness.

Your situation is complex, and while I cannot provide medical advice specific to individual cases, these steps can hopefully serve as a guide to continue enhancing your well-being and navigating your condition more effectively. Remember, seeking relief and better quality of life is a journey, not a sprint. Take care, and don’t hesitate to reach out for any further information or assistance.