OpenHealth Q&A

Seeking Guidance on Health Issues

I am a 21-year-old female, measuring 5 feet 8 inches tall and weighing 147 pounds. I am currently prescribed Ritalin XR at a dosage of 10 mg, taking half a tablet daily for ADHD. Additionally, I use Meclizine 25 mg, up to a maximum of 75 mg, as needed to manage dizziness linked to my Dysautonomia. For inflammation, I receive Nucala, a monthly subcutaneous injection of 100 mg/mL. Furthermore, I have a Nexplanon implant to control heavy menstrual bleeding. Regarding my medical history, I've undergone several surgeries: sinus surgery in October 2023, wisdom teeth extraction in December 2019, removal of tonsils and adenoids in the fall of 2014, and insertion of ear tubes in 2005. Currently, I face multiple health challenges: I have iron deficiency of unknown origin, Dysautonomia of an unspecified type, Hypermobility Spectrum Disorder, and probable Mast Cell Activation Syndrome (MCAS). I've made significant lifestyle changes, becoming more physically active, adopting healthier eating habits, ensuring adequate hydration, maintaining a consistent sleep pattern, and experiencing a weight loss of 12 pounds, among other improvements. I've adhered to every conservative recommendation from my doctors, including hydration with electrolytes, increased salt consumption, and wearing compression socks. Unfortunately, these measures haven’t alleviated my symptoms, and though the doctors suspect Dysautonomia, they are unable to identify the specific type or the reasons behind my severe iron deficiency. My recent laboratory results show Iron at 38, Ferritin at 4.8, with elevated UIBC and TIBC levels, and Iron Saturation at 11%, which have worsened compared to when I was still menstruating. Oral iron supplements haven’t had any effect, and rather than addressing the underlying issues, treatment has primarily focused on managing the symptoms. At least three healthcare professionals have recommended that I seek evaluation at the Mayo Clinic for a collaborative approach to solving my medical concerns. In recent weeks, I’ve been experiencing frequent Dysautonomia episodes, with the frequency, severity, and duration all increasing. During these episodes, I encounter a significant rise in both blood pressure and heart rate, particularly with changes in body position. My extremities become cold, sometimes to the point where they don’t warm up, and I notice discoloration in my fingernails and leg scars. Symptoms also include severe dizziness, blurred vision, paleness, and nausea, leading to a complete loss of appetite. While I rarely lose consciousness completely, during particularly intense episodes, witnesses, including friends and nurses, have reported instances where I seem to drift in and out of consciousness, unable to engage in conversation, accompanied by stuttering that lasts for days after. I have documented my episodes in a log, with one instance logged as follows: - **Date:** July 8, 2025 - **Start Time:** 1:00 PM - **Duration:** Ongoing as of 4:00 PM - **Trigger:** Unclear; potentially related to heat or exertion from the weekend - **Symptoms:** - Intense dizziness (aggravated by position changes) - Blurred vision (onset occurred later in the episode) - Cold extremities and pale complexion despite having sunburn - Fatigue; difficulty maintaining balance while standing - Delayed capillary refill time of 3 seconds - **Vitals** (recorded by nursing staff): - Blood Pressure: Sitting 124/86 → Standing 139/116 - Heart Rate: Sitting 88 → Standing 117 - Heart Rate: Lying down 95 → Dropped to 76 → Standing 113 - Oxygen Saturation: 96–98% - Blood Sugar: 90 - Skin: Pale - Measures taken: Ice pack applied to neck; electrolytes and salty food consumed I would greatly appreciate any insights or advice regarding my condition. I have a tilt table test scheduled for July 21.

Answers (1)

7/12/2025, 9:50:40 PM

OpenHealth AI

Thank you for providing such detailed information about your health concerns. It's clear that you're experiencing a complex set of health challenges, and it’s understandable to seek insights that might help you manage your situation better.

Main Points:

1. Your symptoms and worsening episodes suggest that your Dysautonomia may require further evaluation and specific management strategies.
2. Iron deficiency needs to be addressed comprehensively, especially considering your lab results and the ineffectiveness of oral supplements.
3. The upcoming tilt table test could provide valuable information about your condition and help guide future treatment options.

Explanation:

You describe a range of serious symptoms associated with Dysautonomia, including significant changes in heart rate and blood pressure when adjusting positions, along with severe dizziness and cold extremities. The fact that multiple professionals have suggested a specialized evaluation at the Mayo Clinic highlights the complexity and persistence of your symptoms.

Your iron deficiency, indicated by low serum iron and ferritin, is concerning and could be contributing to your overall fatigue and symptoms. Effective treatment may require targeted strategies beyond standard oral iron supplements, especially given your history and other health conditions.

Next Steps:

1. Prepare for Your Tilt Table Test:

   • Document your experiences leading up to the test, including any symptoms and triggers. Share this with the healthcare professionals conducting the test to provide a full picture of your baseline and episode characteristics.
   • Note any specific positions or activities that exacerbate your symptoms, as this information can guide interpretation.

2. Discuss Iron Deficiency Management:

   • When you meet with your healthcare providers, explore options for intravenous iron therapy, which can sometimes be more effective than oral supplements, especially in cases of absorption issues.
   • Ask about potential underlying causes of your iron deficiency, which might include issues with nutrient absorption or chronic blood loss.

3. Emphasize Symptom Tracking:

   • Continue to log your episodes meticulously and include any new symptoms or patterns. This data will be crucial for your healthcare team to identify discrete triggers and more effective management plans.
   • Share your logs with the healthcare professionals at your upcoming appointments for comprehensive insight into your condition.

4. Lifestyle Considerations:

   • Keep up with your healthy habits like hydration, nutrition, and sleep. Consider consulting a dietitian to ensure your diet supports your health, particularly regarding iron-rich foods and overall nutrient intake.
   • Discuss with your doctors about the role of physical activity; gentle exercises like yoga or Pilates can sometimes be beneficial for Dysautonomia but should be tailored to avoid triggering symptoms.

5. Consulting Specialists:

   • Since you've been encouraged to pursue evaluation at a specialized center, schedule this appointment as soon as possible. A multi-disciplinary approach could provide a more coordinated treatment plan for your diverse health issues.

Remember, you are taking important steps by being proactive about your health, and it's vital to communicate openly with your healthcare team regarding your symptoms and concerns. If you have any more questions or need further clarification, feel free to ask.