Should I be concerned about my recent symptoms?
Greetings, I'm 34 years old, assigned female at birth, and come from a bench jewelry-making background. I don’t smoke, drink alcohol, or use drugs. My health situation is quite complicated, and I’ve been collaborating with medical professionals to get to the bottom of it. However, securing timely appointments has proven to be a challenge. While some progress has been made, I've recently developed new symptoms, and I’m left questioning whether I should wait for my next comprehensive appointment later this week to discuss these updates with my general practitioner, or if I require immediate medical attention. (If you have any additional insights on potential oversights or aspects my specialists should consider examining, I would greatly appreciate your advice.) **Emerging Symptoms** (Observed in the last two weeks or less): I've been feeling a profound weakness that restricts me to walking very slowly with my cane, which I now depend on for support and propulsion. I've noticed small red marks appearing under my skin, experiencing breathlessness without any exertion, stiff joints, cramping muscles, and a subtle tremor throughout my body. There are also slight yellowish areas under my eyes (only noticeable in photos), and my toes have taken on a purple hue while my hands are white, rigid, and sore, showing reluctance to warm up. Pushing myself to remain active, like walking for a bit, now leads to an unbearable chill that lasts for hours; no amount of blankets, heating pads, or warm showers alleviates this discomfort. Soon after, I find myself extremely fatigued and in need of extensive sleep. Additionally, I've been facing bowel incontinence, with my stool appearing black and grainy—an issue I suspect may stem from a new iron supplement. I've experienced hot, swollen legs that didn’t cool down even with cold compresses, although this is currently resolved. For over a month, I've also had a persistent feeling of illness characterized by a sore throat and nasal congestion that neither worsens nor improves. **Medical History**: I have various systemic health issues that complicate my overall situation. **Diagnoses**: My current medical diagnoses include Idiopathic Intracranial Hypertension (IIH), asthma, hypermobility, osteoporosis, premature ovarian insufficiency, anemia, obesity, binocular vision dysfunction due to minor nerve palsy in one eye, and Sicca syndrome (dry eyes, ruled out for Sjögren’s). Additionally, I have insulin resistance. **Pending Evaluations**: I am currently undergoing evaluations to eliminate other possibilities which might include POTS, Ehlers-Danlos syndrome, and gastroparesis. **Additional Symptoms**: - **Chronic fatigue**: I often feel as though I haven’t rested despite having just slept. Even on better days, I can manage only a few hours of activity before succumbing to exhaustion. - **Severe joint instability and pain**: Joint dislocations, especially in my wrists, ankles, and right shoulder, are frequent, and certain joints give way unexpectedly, hindering my mobility. I’ve relied on a cane for the past year due to the intense pain and instability. - **Neurological challenges**: Issues like cognitive troubles, memory lapses, brain fog, and visual disturbances—such as fluctuating double vision and blurriness—afflict me. I also often feel tingling sensations in my arms and legs. - **Dysautonomia**: My heart rate spikes dramatically upon standing, leading to dizziness and near-fainting spells, along with vision blackouts, heat intolerance, night sweats, and pooling blood in the lower extremities. Additionally, I grapple with non-asthmatic shortness of breath and urinary incontinence. - **Gastrointestinal upset**: Severe bloating, nausea, vomiting, and delayed gastric emptying are common. Sometimes, food remains undigested in my stomach for over 16 hours, complicating my fluid and food intake. Consequently, I grapple with chronic dehydration as well. - **Endocrine/Hormonal issues**: I endure highly irregular menstrual cycles ranging from three to 55 days. Birth control methods exacerbated both my IIH and joint problems. - **Weight challenges**: Despite adhering to a calorie-restricted diet of approximately 900-1400 calories per day (mostly consisting of one meal and a couple of snacks), I continue to gain weight. I suspect lipedema is a contributing factor but have encountered difficulty obtaining a proper assessment. - **Food and immune reactions**: I have significant adverse reactions to gluten and nightshades, resulting in widespread swelling, worsening of IIH symptoms, oral ulcers, and flu-like illness lasting for weeks. Fungal infections frequently occur, especially during my luteal phase, alongside swollen armpits and elevated immune markers in my tests. - **Exercise intolerance**: Previously, I maintained an active lifestyle, walking up to 14 kilometers daily and lifting weights. Nowadays, any form of exercise results in full-body pain lasting nearly an entire week; even walking at 4.5 km/h on a treadmill raises my heart rate to 175 bpm, while outdoor walks elevate it to 120-140 bpm. **Lab Results**: I have collected a series of lab tests over the past few months. | **Test** | **Oct 2024** | **Jan 2025** | **Feb 2025** | **Target Range** | |-----------|------------|-------------|--------------|-----------------| | Fasting Glucose | 86 mg/dL | 88 mg/dL | - | 70-99 mg/dL | | Hemoglobin A1c | 5.1% | 5.0% | - | <5.6% | | Ferritin | 76 µg/L | 26 µg/L | - | >50 µg/L | | Iron Saturation | 15% | 11% | - | >20% | | LDL Cholesterol | 90 mg/dL | 110 mg/dL | - | <100 mg/dL | | Vitamin D | 51 nmol/L | 45 nmol/L | - | >75 nmol/L | | FSH | 10.1 IU/L | 33.2 IU/L | - | <10 IU/L | | LH | 9.8 IU/L | 19.4 IU/L | - | <10 IU/L | | AMH | <0.03 ng/mL | <0.03 ng/mL | - | >1.0 ng/mL | | Morning Cortisol | 48 µg/L | 163 µg/L | - | 100-150 µg/L | | TSH | 1.53 mIU/L | - | - | 0.5-2.5 mIU/L | | Creatinine | 0.7 mg/dL | 0.6 mg/dL | - | 0.5-1.2 mg/dL | | ALT | 10 U/L | 13 U/L | - | <35 U/L | | AST | 19 U/L | 18 U/L | - | <35 U/L | | HOMA-IR | 3.3 | 3.3 | - | <2.0 | | CRP | 25 mg/L | - | - | <3 mg/L | **Current Medications**: - **Acetazolamide** (250mg up to thrice a day as needed) - for Idiopathic Intracranial Hypertension (IIH) - **Salbutamol** (as needed) - for asthma - **Pantoprazole** (once a day) - for acid reflux - **Cetirizine** (once a day) - for allergies - **Cequa** (one drop in each eye twice daily) - for dry eyes - **Metformin** (500mg per day) - for insulin resistance **NEW MEDICATION** - **Estradiol Hemihydrate** (0.62 mg per day) - for hormonal therapy (POI) **NEW MEDICATION** - **Progesterone** (200mg per day) - for hormonal therapy (POI) **NEW MEDICATION** - **Vitamin D3** (Supplement) - for deficiency support - **Calcium** (Supplement) - for osteoporosis - **Iron Supplement** (as needed) - for iron deficiency **NEW MEDICATION** - **Agnus Castus** (4mg) - for menstrual regulation - **Potassium** (Supplement) - for electrolyte balance - **Magnesium** (Supplement) - for muscle function and cramps - **Omega-3** (Supplement) - for general health - **Evening Primrose Oil** (Supplement) - for hormonal support **Family Medical History**: | **Relative** | **Conditions** | |----------------|----------------| | **Father** | Obesity, arthritis, heart issues, chronic lung infections, hypermobility, back pain | | **Mother** | Osteoarthritis, fibromyalgia, hypermobility, obesity, endometrial hyperplasia, malignant hyperthermia, heart attack | | **Paternal Grandmother** | Alzheimer's/Dementia (exact diagnosis unclear), Ashkenazi Jewish background | | **Paternal Grandfather** | Obesity, cardiac arrest | | **Maternal Grandmother** | Diabetes, undiagnosed uterine condition leading to hysterectomy, hypermobility, arthritis | | **Maternal Grandfather** | Heart disease, obesity | | **Half-Siblings** | Raynaud’s syndrome, hypermobility | | **Paternal Uncle** | Herniated and slipped discs | | **Maternal Uncles** | Heart conditions in their 40s requiring emergency stent placement, one suffered cardiac arrest at age 43 | | **Paternal Cousins** | Hypermobility, chronic pain, herniated discs, Ehlers-Danlos Syndrome, IIH, Factor V Leiden, multiple sclerosis (died at age 40) | | **Maternal Cousins** | Early cardiac deaths | **Additional Context**: I have been infected with COVID twice, with the last occurrence nearly two years ago. Furthermore, my apartment has a significant mold problem we are currently addressing with our landlord. I understand there is a lot of information here. Thank you for any insights or guidance you can offer. ❤️
Answers (1)
3/24/2025, 10:01:21 AM
OpenHealth AI
Thank you for sharing such detailed information about your health situation. Given the complexity of your symptoms and the interactions of your various medical conditions, it is essential to approach this with care. You are experiencing several concerning symptoms that merit timely evaluation, so let's prioritize your immediate needs and outline next steps.
Main Points:
- Concerning Symptoms: The weakness, breathlessness, joint stiffness, skin changes, and bowel issues suggest that you may need a more urgent assessment than your upcoming appointment.
- Potentially Serious Issues: Symptoms like black stool (which can indicate gastrointestinal bleeding), profound weakness, breathlessness, and discoloration of limbs could indicate underlying problems that require careful evaluation.
- Next Steps: Prioritize immediate attention for alarming symptoms and manage ongoing issues with practical self-care while ensuring you communicate all new symptoms to your healthcare team promptly.
Explanation:
- Weakness and Breathlessness: These symptoms, especially when you feel an exacerbation of your condition with little exertion, could indicate cardiovascular or pulmonary complications, especially given your history of asthma and IIH.
- Skin Changes: Small red marks and changes in skin coloration (like the purple toes and white hands) could relate to circulation issues or vascular problems, particularly in relation to your dysautonomia.
- Gastrointestinal: Black and grainy stool may indicate bleeding or a reaction to your iron supplement, which should be investigated immediately to rule out any serious conditions.
Actionable Guidance:
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Seek Immediate Evaluation: If your symptoms worsen or if you develop severe chest pain, fainting, a significant increase in breathlessness, or fevers, it is crucial to seek immediate medical attention (e.g., visiting an emergency department).
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Monitor Symptoms: Keep a detailed log of all your symptoms, including when they occur, their severity, and any triggers or alleviating factors. This will be immensely helpful for your healthcare team.
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Common and Important Symptom Alerts:
- Bowel Changes: Have someone assist you in monitoring for bloody or black stools. If it continues, address this as soon as possible.
- Breathlessness: Try to keep track of instances of breathlessness. Note if you associate it with any common activities.
- Skin Changes: Observe any evolving skin marks. If they extend or increase in prominence, take note for your healthcare visits.
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Hydration & Nutrition: Continue to hydrate and ensure you have safe, tolerated nutrition. If food allergies contribute to gastrointestinal distress, consider a trial elimination of suspect foods under guidance of your team.
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Prepare for Your Appointment: When you do meet with your doctor, ensure that you convey all your new symptoms clearly. Use your symptom log to discuss changes and express your concerns about the implications of what you are experiencing.
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Address Environmental Factors: Given the mention of mold in your apartment, consider options to minimize exposure or odor which may exacerbate respiratory problems.
Final Note:
Your symptoms indicate a complex health situation, and I encourage you to take them seriously. It is essential to advocate for your health and seek prompt evaluations where warranted. Feel confident in bringing all these changes to your next appointment, ensuring that no detail is overlooked. You’re not alone in navigating this, and your focus on your health will contribute to more comprehensive management. Don't hesitate to follow up if you have more questions or need additional support! ❤️
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