OpenHealth Q&A

Seeking Guidance on Next Steps for Autoimmune Suspicions

**Abnormal Findings**: I'm experiencing monocytosis (1,037 cells/uL, which constitutes about 10% of my white blood cells) and am awaiting another test to determine if this condition is chronic. Additionally, I have a positive result for clift dsDNA, reduced levels of C4, and abnormalities in my nailfold capillaroscopy results, which showed avascularisation and capillary dilation, but no hemorrhaging. An ECG indicated biatrial enlargement and non-specific ST segment changes that show depression. Furthermore, my results showed a rightward axis and T wave inversion, but these changes are familiar to me. A nurse practitioner noted that I have a high-pitched heart murmur at the atrial landmark, which sounds intense (audible while standing and lying down, not just during inhalation—I'm training in auscultation, so bear with me!). They're labeling this as a split S2, but it seems harsher and drawn out compared to that, more akin to an aortic stenosis sound. **Borderline Results**: My red blood cell count is below my typical baseline at 4.0 and hemoglobin is at 12.0, while I usually maintain mid-13 levels (I also take iron supplements regularly). My lymphocyte count has increased beyond the norm, fluctuating between 3.6 to 3.9, compared to a usual range of 2.1 to 2.4. Although my total white blood cell count is deemed normal, it is also elevated, registering at 9.6 to 9.8 rather than my usual 5.4 to 6.4. **Normal Results**: I received negative results on my ANA assay and indirect immunofluorescence assay. My liver and kidney function tests came back normal, along with my urine analysis, C3, platelet count, and other white blood cell types (neutrophils, eosinophils, and basophils). Additionally, my ESR and CRP values, rheumatoid factor, and CCP were all within normal ranges, and both my blood pressure and oxygen saturation were stable. There is no history of bicuspid aortic valve in my medical records. **Symptoms**: I am facing fatigue that persists despite maintaining a healthy lifestyle, accompanied by sore muscles and a heavy feeling in my bones. There’s a general sense of weakness and noticeable lymphadenopathy on the left side of my neck (only mildly swollen, as far as I know). I have suffered from chronic pharyngitis for over two years, Raynaud’s phenomenon, and telangiectasias characterized by red dots, which are distinct from cherry angiomas or petechiae. I experience reduced stamina and exercise intolerance, a prior history of H2 SIBO (successfully treated with antibiotics), and presyncope episodes occurring half the time I stand up over the past couple of months. Certain symptoms I'm debating whether to mention include mild to moderate night sweats (varying by night), itchy hands and forearms that last from a few minutes to several hours with a slight rash (possibly urticaria?), potential malar rash triggered by sun exposure (still awaiting biopsy confirmation), mild heart palpitations when bending over, and slight shortness of breath with chest pain, which impacts me on roughly half the days currently. **Biometric Information**: I am a 23-year-old female, approximately 5' 11" tall (6 feet without scoliosis) and weigh 112 pounds. Being underweight has been typical for me since early childhood and is not due to any eating disorder. My genetic test for Marfan syndrome and related conditions came back negative. **Next Steps**: I have two follow-up appointments scheduled for June, including an echocardiogram and a meeting with a nurse practitioner who practices both family medicine and rheumatology. I had only met with my rheumatologist once before their retirement in June and am now being passed to this NP. I feel more apprehensive about the rheumatology appointment because I have no information on this NP (no online reviews available) and worry they may not have the expertise needed to assist me in navigating my concerns. Realistically, I believe the main goal is to discuss starting a prescription for Plaquenil and monitoring the results. Transfer to a new specialist has crossed my mind, but I'm uncertain about how to effectively advocate for myself in this process. **Potential Issues**: I suspect I have UCTD unless my ANA turns positive (especially at high titers), and I'm concerned about possible heart valve dysfunction, which I believe might relate to autoimmune conditions.

Answers (1)

4/1/2025, 8:01:24 PM

OpenHealth AI

It sounds like you're navigating a complex set of symptoms and test results that may indicate an autoimmune condition. Your findings raise valid concerns, especially regarding your heart health and potential autoimmune diagnosis. Let's address your main points and provide a clearer path forward.

Summary of Key Points:

1. Concerns About Autoimmune Dysfunction: You have signs suggesting possible autoimmune conditions, particularly with positive dsDNA and symptoms like fatigue, Raynaud's phenomenon, and lymphadenopathy.
2. Raised Heart Concerns: ECG findings and a heart murmur warrant close monitoring and may relate to potential underlying conditions.
3. Upcoming Appointments: You have follow-up appointments that are crucial for diagnosis and management.

Explanation:

Your current symptoms and lab findings, especially the presence of monocytosis, positive dsDNA, and changes in your nails' capillary structure, do support concerns for autoimmune issues like UCTD or potentially lupus. The other cardiovascular signs you've mentioned, including the heart murmur and ECG changes, should be monitored carefully as they could indicate underlying heart issues often seen in autoimmune diseases.

It's understandable to feel apprehensive about your upcoming appointments, especially with the transition to a new nurse practitioner. Empowering yourself with information is key, along with an organized approach to discuss your health concerns.

Action Steps:

1. Prepare for Your Upcoming Appointments:

   • List your Symptoms: Write down all your symptoms, their frequency, and any changes since your last visit. Include details like night sweats, muscle soreness, and lymphadenopathy.
   • Document Questions/Concerns: Before your appointments, prepare a list of questions or concerns. This could include inquiries about starting Plaquenil and how it may benefit you moving forward.
   • Express Concerns Clearly: Share clearly your apprehensions about the referrals, the need for expertise in autoimmune conditions, and what you hope to achieve from the consultations.

2. Monitor Vital Signs and Symptoms:

   • Keep a daily log of symptoms, including any new developments like heart palpitations or shortness of breath. Log your weight and nutrition too, especially if you're underweight, as this is crucial for managing fatigue and overall health.

3. Lifestyle Adjustments:

   • Continue focusing on a balanced diet that supports your condition. A nutritionist may help tailor this to your needs.
   • Implement stress reduction techniques, such as mindfulness or gentle exercise like walking or yoga, to help manage symptoms.
   • Stay hydrated and consider light stretching or breathing exercises if you experience presyncope episodes.

4. Advocate for Yourself:

   • If you feel the new NP does not align with your health spirit or expertise, don’t hesitate to seek a second opinion. You have the right to advocate for a healthcare provider who makes you feel understood and empowered.
   • Request copies of test results and be proactive in discussing them during your appointments.

5. Follow-Up on Test Results:

   • Monitor your test results and symptoms closely, especially regarding the echocardiogram and any potential need for adjustments in medication or treatment plans.

Remember, it's okay to seek clarification or express your concerns during your appointments. Your health is a priority, and being proactive is an important part of managing your well-being effectively. If there's anything else you want to discuss or know, please feel free to ask!