ACE Levels Above 300 and Ongoing Symptoms
Greetings everyone. I’m a 27-year-old woman, standing 5’4” and weighing 180 pounds. I have a medical background that includes polycystic ovary syndrome (PCOS), Bipolar II disorder, and autism. Recently, my physical therapist informed me that I have hypermobility, although its significance remains uncertain. During a recent lab evaluation, my ACE (Angiotensin-Converting Enzyme) levels were recorded in the 300 range. My rheumatologist conducted a chest X-ray, which came back normal, leading him to decide against any additional testing for sarcoidosis. Although I specifically requested a CT or PET scan, he suggested I pursue genetic testing first to identify potential hereditary factors that might explain the elevated ACE levels. The reasons that prompted me to seek medical assistance include intense muscle discomfort and spasms localized in my lower back, glutes, and thighs. Additionally, I experience pain in my hip and worsening knee joint pain, making ordinary activities such as showering, doing dishes, preparing meals, or walking my dog nearly unbearable. The pain escalates while I am active, often pushing me to the point where I can no longer continue or end up in tears. This situation has deteriorated significantly over the past few weeks, rendering me unable to work. Given my autism and generally high pain tolerance—like sitting through eight-hour tattoo sessions without discomfort—I typically manage to hide my symptoms in public, but the situation has worsened to the extent that I rarely leave my house except for medical appointments. Additionally, I've noticed my blood pressure has elevated to stage 2 hypertension, which is a concerning change from where it was just over a month and a half ago. I’m willing to share my latest lab results, but I would appreciate your insights. What might be causing my symptoms? Are there other conditions I should consider or discuss with my healthcare provider? What tests do you recommend I request? It perplexes me why my rheumatologist prefers to conduct genetic tests before ordering a CT scan, especially given that elevated ACE levels could potentially indicate a genetic mutation. I have a suspicion that I could be among the minority of sarcoidosis patients who lack pulmonary symptoms, as suggested by my current manifestations. I appreciate your help!
Answers (1)
3/21/2025, 4:30:51 PM
OpenHealth AI
Thank you for sharing your concerns and background. You are experiencing a challenging combination of symptoms with elevated ACE levels and significant discomfort. Here are the main points to consider:
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Understanding ACE Levels: Elevated Angiotensin-Converting Enzyme (ACE) levels can be indicative of various conditions, such as sarcoidosis, tuberculosis, hyperthyroidism, and certain autoimmune diseases. However, not all patients with elevated levels have a serious underlying condition.
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Assessing Your Symptoms: The muscle pain, spasms, joint discomfort, and new onset of hypertension you're experiencing are significant. They suggest that your body may be under a lot of stress, possibly linked to the conditions you mentioned (PCOS, chronic pain related to hypermobility).
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Next Steps and Recommendations:
- Monitor Symptoms: Keep a daily log of your symptoms, pain levels, activities, and any triggers you notice. Note when your pain worsens, as this can be valuable information for your healthcare provider.
- Lifestyle Modifications for Pain Management:
- Gentle Stretching and Strengthening: Consider trying gentle exercises or physical therapy tailored for hypermobility. Focus on strengthening muscles around your joints to improve stability.
- Pain Relief: Over-the-counter pain relief strategies (like NSAIDs if safe for you) may help manage flare-ups.
- Hydration and Nutrition: Maintaining hydration and balanced nutrition is key, especially with hypertension.
- Medical Check-Ins: Since you're dealing with elevated blood pressure and significant pain, arrange follow-ups with your primary care physician to monitor these factors closely. Discuss the potential benefits of a CT or PET scan with them, particularly given your logic around sarcoidosis.
- Explore Genetic Testing Understandably: While your rheumatologist's suggestion for genetic testing might seem slow to you, these tests can provide insight into hereditary conditions that could explain your symptoms. Clarify with your provider how the results may influence your treatment plan.
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Considerations and Communication: It’s best to maintain open communication with your healthcare team. If you feel strongly about further imaging or tests, ask them to explain the rationale and express your concerns regarding your current symptoms. Sometimes a second opinion from another specialist can also provide additional insights.
I understand you are feeling overwhelmed and the physical discomfort is affecting your daily life significantly. Taking small steps may alleviate some anxiety and improve your situation over time. Stay proactive, and reach out for support from friends or support groups to help you cope with these challenges.
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