32F. Seeking Answers for My Mysterious Systemic Illness – Feeling Overwhelmed and in Need of Support!
Hi everyone, I'm reaching out because I am in urgent need of assistance. My vitamin C levels have been stubbornly low, and I feel like my health is deteriorating daily. This unsettling experience began in January of this year, manifesting in episodes that feel increasingly severe. It started with an unexpected bout of hair loss and has since escalated. My blood tests, including complete blood counts and metabolic panels, generally return normal results, except for a slightly elevated ALT level due to mild non-alcoholic fatty liver disease, which has recently returned to normal. I am experiencing alarming hair loss, affecting my scalp, eyebrows, and eyelashes. My skin appears dull and is prone to bruising, taking over a month to heal from any minor injuries. I suffer from joint stiffness and pain, occasional gum bleeding, mental fog, and overwhelming fatigue. As a PhD student, I have always enjoyed learning, attending lectures, and doing research, but now, low energy levels have made these activities feel nearly impossible; I'm even contemplating leaving my program. In the past eight months, I have consulted with various specialists across multiple fields—including pulmonary, cardiology, dermatology, endocrinology, gastroenterology, ENT, ophthalmology, and audiology—but have not received any concrete answers. I've undergone a number of procedures, such as an upper GI scope and colonoscopy, both of which returned normal results. A liver biopsy revealed mild fatty liver disease, and everything else from a bronchoscopy to a CT scan has come back clear. **CURRENT SYMPTOMS:** Below is a list of some of the symptoms I've been dealing with: - Morning stiffness in joints or discomfort after prolonged walking - Dizziness, particularly exacerbated by stress - Easy bruising, especially on my right arm following blood draws - Slow healing of cuts and bruises - Hair loss - Occasional shortness of breath - Severe fatigue and weakness - Episodes of feeling faint or pre-syncope - Bradycardia experienced daily (heart rate dipping into the 40s) - Beau lines visible on toenails - Pain in hands, elbows, and tendons - Unexpected swellings resembling lipomas on shins and forearm - Blurred vision - Hirsutism - Hidradenitis Suppurativa (HS) - Mild carpal tunnel syndrome (despite minimal hand use) - Unexplained abdominal discomfort and sensitivity in the liver and spleen areas - Dry patches on skin - Occasional night sweats - Puffiness around eyes, particularly in the morning - Unintentional weight loss of 20 pounds over several weeks, later regained - Frequent migraines **LABORATORY TESTING AND IMAGING:** I've gone through extensive laboratory work, imaging, and procedures recently, and here are some noteworthy results: - Borderline elevated ACE level (54) but normal abdominal CT scan - High C3 level (194) - Vitamin C level low (16) - Normal eGFR (110), which experiences fluctuations but stays within range - Cardiac CT and echocardiogram normal - Fluctuating B6 levels (211.3 and 17.7 separated by two months) - Elevated sedimentation rate (23 in May) - Normal CRP (0.4 taken alongside sedimentation rate) - Mild small fiber neuropathy detected through skin biopsy; normal QSART results - Evidence of right median mononeuropathy via EMG, consistent with carpal tunnel syndrome - High fecal calprotectin (88.3), but later scopes returned normal findings - Fluctuating sodium and potassium levels - Occasional borderline low magnesium levels - Thoracic spine X-ray indicating degenerative disc disease - Several normal chest X-rays - Unremarkable brain MRI, resolved sinus infection - ENT cultures showing mild growth of Klebsiella (enterobacter) and gram-negative bacilli, treated with extensive courses of antibiotics, but no follow-up testing performed. - Normal vestibular test and eye exam **ADDITIONAL NOTES:** - My diet has been adjusted to include vitamin C-rich foods whenever possible - I take a daily multivitamin and 1,000 mg of vitamin C - Although I am classified as obese with pre-diabetes/insulin resistance, I adhere to my prescribed Metformin, maintaining a controlled A1C level - At 32 years old, I identify as a female and biracial - I mention my father's passing last year at age 56 from multiple organ failure and sepsis, which was never fully explained. He endured a challenging health decline over several years, presenting various health issues that could suggest hereditary amyloidosis, a concern I now harbor regarding my own health. - All my biopsies, including those of the liver and bronchoscopy, have cleared out amyloid presence. Unfortunately, my nerve biopsy could not be analyzed for this. - Despite anyone assuming anxiety is the issue, I am in therapy and manage my symptoms outside of my physical decline, which is understandably distressing. - I am contemplating genetic testing but am apprehensive about the potential outcomes. I’m yearning to feel like my old self again. If anyone has any insights or suggestions for increasing my vitamin C levels, I would be immensely grateful for your guidance! Thank you for taking the time to read my post!
Answers (1)
7/23/2025, 2:41:50 PM
OpenHealth AI
I'm here to provide you with support and actionable steps as you navigate your health challenges. It’s understandable to feel overwhelmed given the symptoms you're experiencing and the extensive medical evaluations you have undergone. Your low vitamin C levels, alongside other systemic symptoms, deserve attention, and finding solutions is essential to improving your well-being.
Main Points:
- Focus on Increasing Vitamin C: While you're already taking vitamin C supplements and incorporating vitamin C-rich foods into your diet, there may be additional strategies to help boost your levels and support overall health.
- Monitor and Manage Symptoms: Keeping an eye on your various symptoms and their changes is important as you adjust your approach.
- Consider a Holistic Approach: Emotional support and management of stressors are equally crucial as they can impact your overall health.
Explanation:
Vitamin C is an essential nutrient that plays a vital role in many bodily functions, including immune support, skin health, and wound healing. Given your stated symptoms, such as easy bruising, hair loss, and fatigue, it is indeed concerning that your vitamin C levels are low. You have worked hard to address your concerns by seeking specialist opinions and testing; now, let’s focus on specific strategies to increase your vitamin C and support overall health.
Next Steps:
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Dietary Sources:
- Continue your efforts to eat foods high in vitamin C, such as oranges, strawberries, kiwi, bell peppers, broccoli, and Brussels sprouts.
- Aim for a colorful plate and include a variety of fruits and vegetables each day to maximize nutrient intake.
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Evaluate Supplementation:
- While taking 1,000 mg of vitamin C daily is a good start, consult with a healthcare professional about possibly increasing the dosage temporarily or considering different forms (like liposomal vitamin C) that may enhance absorption.
- Consider discussing with a nutritionist who can help you create a balanced meal plan.
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Antioxidant Intake:
- Alongside vitamin C, ensure adequate intake of other antioxidants, such as vitamin E (found in nuts and seeds) and zinc (found in meat, legumes, and whole grains), which can support skin health and immune function.
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Hydration and Stress Management:
- Stay well-hydrated. Aim for at least 8 cups of water a day, adjusting for activity levels and climate. Proper hydration can improve overall energy and skin health.
- Incorporate stress-reducing techniques such as mindfulness meditation, gentle exercise like yoga, or deep breathing exercises, as they can help manage symptoms related to fatigue and mental fog.
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Keep a Symptom Diary:
- Document your symptoms daily, noting any changes. This can help you identify patterns and triggers, providing valuable information for future discussions with healthcare providers.
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Explore Genetic Counseling:
- If hereditary concerns weigh heavily on you, consider reaching out to a genetic counselor to discuss your family history and explore whether genetic testing might provide any clarity.
Your situation is complex, and it’s commendable that you’re actively seeking solutions. By focusing on increasing your vitamin C levels and addressing your overall health holistically, you may find improvements in your symptoms and energy levels. Please feel free to reach out for further clarification or additional support. You are not alone in this.
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