Seeking Answers: Persistent Health Woes with No Clear Diagnosis
Hello everyone, I’m a 31-year-old woman dealing with chronic illness that has lingered for several years. Unfortunately, my experiences with medical professionals have been frustrating; many seem reluctant to listen or are simply dismissive. I have a strong sense that there’s an underlying issue still unexplored, and my condition is progressively worsening. Here’s a breakdown of the challenges I’m facing: 🔥 Intense Heat Sensitivity and Hot Flashes - I experience debilitating hot flashes multiple times daily (more than five), leading to nausea and excessive sweating that hampers my ability to function. - Everyday tasks like cooking, cleaning, walking my dog, shopping, or even getting ready feel impossible — my makeup runs, and my hair gets drenched. - The only relief I find is resting in front of a fan and halting all activities. - I tried the medication Veoza (fezolinetant) for nearly two months, but it only exacerbated my symptoms. 🧠 Neurological and Cognitive Struggles - I’ve been dealing with tremors in my left hand for the past two years, occurring even at rest. - My reflexes are heightened (hyperreflexia). - Though my MRI appeared normal, neurologists have often brushed off my symptoms; one even suggested that drinking could alleviate my tremors. - There is a family history of Parkinson’s disease on my mother’s side (great-grandfather). - Additionally, I struggle with short-term memory deficits, recurrent brain fog, feelings of unreality and detachment, as well as hypnic jerks. - I also face coordination challenges and have experienced clumsiness, slow reflexes, and a peculiar sensation of resistance while walking. ⚖️ Hormonal Imbalances - My hormone levels have been irregular for over six years. - I’ve had a history of both low testosterone and estrogen levels in my late twenties. - Conversely, I’ve also experienced surges of estrogen (similar to pregnancy levels) and elevated cortisol. - Although my recent dexamethasone suppression test was normal, earlier cortisol tests showed significantly high levels. - While I’ve historically had low DHEA readings, my latest results indicate it's within normal ranges. - Doctors have ruled out PCOS through a pelvic ultrasound. - I’ve experienced unexpected facial acne and rosacea (previously had no skin concerns). - My hair has been thinning and falling out, leading to alopecia areata. - I have severe dry skin and tough cuticles; my feet also feel leathery. - Despite maintaining oral care, I’ve developed sudden gum issues, resulting in a diagnosis of periodontal disease — my dentist even questioned if I was pregnant, which I am not (just to clarify!). 🦴 Existing Medical Diagnoses - Chronic conditions include Hashimoto’s thyroiditis and hypothyroidism (currently on a dose of 200mcg of levothyroxine, which has doubled in a year). - I've small thyroid nodules that have remained stable under observation for five years. - I suffer from spondylosis, confirmed via MRI, which presents as severe back pain. - I am also diagnosed with ADHD, OCD, anxiety, and depression. 🧬 Additional Concerns - Daily fatigue persists regardless of how much rest I get. - I'm plagued by nightmares, disruptive sleep, and non-rejuvenating slumber. - I’ve been recently classified as pre-diabetic (a new development). - I bruise easily and seem to heal slowly, but there are no significant vitamin deficiencies reported. - High blood pressure has recently emerged. - I experience joint pain and stiffness, particularly in my fingers, knees, and ankles, worsened in the mornings. - I’ve found it increasingly difficult to bend my fingers upon waking. - Gastrointestinal issues include reflux (currently on omeprazole), potential IBS, and debilitating abdominal cramps occurring occasionally (1-2 times a month). - Weight management has been a struggle, with continual weight gain despite diet and exercise efforts. - Previously, Ozempic helped me lose 40 pounds, but I currently cannot access it. - My height is around 5'9", and my weight is approximately 270 pounds. 🧪 Recent Laboratory Tests and Results - DEX suppression test turned out normal. - Pre-diabetic glucose levels. - Low values for MCHC. - Recently recorded low cortisol levels, despite previous very high readings. - This time, DHEA levels were normal (historically low). - I've had recurrent urinary tract infections. - Thyroid antibody testing confirmed Hashimoto's disease. Current Health Care Providers: - I have a supportive primary care physician. - I’m also seeing a therapist and dermatologist. - Previously consulted a neurologist and an endocrinologist, but my concerns did not receive the attention they merited. My endocrinologist suspected Hashimoto’s, yet I’m convinced more extensive issues exist. - I am keen on recommendations for specialists, particularly in the areas of endocrinology, neurology, or functional medicine who take hormonal disorders seriously. ⸻ What I Require: - Insights into what might be affecting my health — even rare conditions I might not have considered. - Recommendations for blood tests or evaluations, especially related to hormones, autoimmune disorders, adrenal function, or neurological conditions. - Guidance on specialists to consult, particularly in endocrinology, neurology, or functional medicine. - If anyone else has faced similar challenges, I’d love to know what solutions eventually worked for you. ⸻ I am utterly drained. Daily tasks seem insurmountable, and I’m barely maintaining my composure. I’m tired of being disregarded when it’s evident there’s something amiss. If you’ve read my message fully, thank you sincerely. I’m ready to hear any insights, encouragement, or guidance you might have. 💛 ⸻
Answers (1)
6/19/2025, 7:01:57 AM
OpenHealth AI
I'm truly sorry to hear about the challenges you're facing with your health. It sounds overwhelming, and it's understandable to feel drained after so many years of trying to find answers. You're seeking to understand the underlying issues affecting your health, as well as recommendations for specialists and tests that may shed light on your condition.
Main Points:
- Complex Symptoms: Your symptoms encompass hormonal imbalances, neurological symptoms, fatigue, and chronic conditions, which can complicate diagnosis.
- Next Steps: Focus on targeted blood tests, possible referrals to specialists who take your concerns seriously, and exploring holistic approaches to better manage your symptoms.
Explanation:
Your experiences with heat sensitivity, neurological symptoms (like tremors and cognitive issues), and hormonal fluctuations raise concerns about potential underlying conditions, including hormonal dysregulation (for example, adrenal issues), autoimmune disorders, or even neurodegenerative conditions, especially given your family history. The diversity of your symptoms suggests that a comprehensive approach may be beneficial, considering both traditional and functional medicine perspectives.
Prioritized Next Steps:
-
Consult Specialists:
- Functional Medicine Doctor: They take a holistic view and can address hormone and autoimmune concerns by evaluating your whole body system.
- Neurologist: Seek one who specializes in movement disorders to evaluate the tremors and cognitive symptoms in more depth.
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Relevant Blood Tests:
- Hormonal Panel: Test levels of estradiol, testosterone, progesterone, cortisol (24-hour urine or saliva for cortisol), and thyroid hormones.
- Adrenal Function Tests: Consider an ACTH stimulation test or a 24-hour urine free cortisol test to evaluate adrenal health.
- Autoimmune Panels: Tests such as ANA, for other autoimmune disorders that may not have been explored deeply yet, and specific antibodies related to other conditions (e.g., antiphospholipid syndrome).
- Vitamin Levels: Even if tests show no deficiencies, retest for B12, vitamin D, and magnesium, as these can impact energy and cognitive function.
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Symptom Management:
- Focus on managing immediate symptoms like heat sensitivity by trying wearable cooling devices or portable fans.
- Consider dietary adjustments or supplements that might help, such as adaptogens for stress management (with guidance from a healthcare provider).
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Support Groups & Community:
- Seek out support groups for individuals with similar chronic conditions. Sharing experiences can provide emotional relief and valuable information on managing symptoms.
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Document Symptoms:
- Maintain a detailed symptom diary to track your daily experiences, triggers, and relief strategies. This can be very helpful for specialists assessing your case.
It's important to feel heard and validated in your journey. You are taking proactive steps by seeking insights, and I encourage you to advocate for yourself until you receive the comprehensive care you deserve. Please keep me updated if you need further assistance or clarifications on any specific point. Remember, you’re not alone in this. 💛
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