OpenHealth Q&A

Seeking Guidance for Ongoing Health Issues

Hello everyone, Since 2017, I've been experiencing a range of concerning health issues that have persisted without any clear diagnosis. I have consulted with various doctors and undergone blood tests, but I've yet to find any definitive answers. My symptoms began in 2017, and it’s difficult to articulate them. It's similar to the overwhelming fatigue that accompanies the flu — a weakness I felt daily. Initially, I dismissed it, attributing my feelings to the exhaustion of being a busy young mom. During that time, I noticed I developed a rash, and after a lab test, I found out I was dehydrated, but I didn’t investigate further. At that time, I had a Mirena IUD inserted, and shortly after, I began experiencing episodes of blurry vision, vertigo, and sharp pains radiating from my lower abdomen to my mid-stomach area. These symptoms subsided after a few months, prompting me to ignore them after my gynecologist assured me they were not concerning. From 2016 to my gynecological appointment in 2017, I noticed a notable weight gain, jumping from 121 pounds to 157 pounds without any changes to my diet or sleep routine. Concurrently, I experienced persistent diarrhea and occasional fevers. I recall a day at work when a coworker remarked how hot I felt to the touch, and these episodes would occur every couple of months, lasting from several days to a week. This cycle continued up until late 2018. Following that period, I lost my health insurance and continued to struggle with flare-ups, but without the ability to seek help, much of that time is a blur for me. From 2020 onwards, my husband’s new job provided insurance, which required annual health assessments. Between 2020 and 2022, these assessments largely focused on metabolic health, and I discovered my cholesterol was nearing a concerning level. However, by 2022, through dedication, I managed to restore it to a healthy range despite still experiencing my previous symptoms. I’ve also noticed swollen lymph nodes near my neck during flare-ups, which persist through these episodes and then recede once the flare passes. Fast forward to June 2024, I mustered the courage to request comprehensive testing after new symptoms started appearing during my flare-ups. Occasionally, my vision blurs, I experience tingling in my hand, and at times, my left leg feels weak and restless. Even simple chores exhaust me to the point I need a nap after walking short distances during these episodes. Blood tests revealed some abnormalities: my red blood cell count was slightly elevated, and my MCH was on the low end. My doctor considered these results negligible, stating they were within normal limits. Thyroid levels and cholesterol were tested and returned normal results. Frustratingly, I didn’t follow up since the doctor gave little insight into what could be done. In October 2024, during a check-up with my primary care physician, I shared my ongoing health concerns. He ordered numerous additional tests. The metabolic panel results came back normal except for one concerning aspect: my immature granulocytes were slightly elevated. Furthermore, a rheumatoid factor test yielded abnormal results, prompting a referral to a rheumatologist, which I am currently awaiting. This brings us to this week, when I attended an appointment with my gynecologist. I expressed my interest in hormone testing, and she agreed, conducting several tests that returned with some irregularities. My Vitamin B12 was slightly elevated, while Vitamin D was borderline low. Abnormalities also appeared in my metabolic results: globulin levels were high, and my A/G ratio was low. My thyroid results remained normal, and I await my testosterone test results. Overall, I’ve undergone extensive blood testing, yet I remain uncertain about what additional tests might be beneficial. The slight abnormalities detected seem to be dismissed by my doctors, leaving me feeling overlooked. As we step into 2025, I continue to experience flare-ups that are less frequent yet prolonged. There is a troubling health history in my family that adds to my worry: my mother has rheumatoid arthritis and previously battled breast cancer, while one sister had thyroid cancer and her daughter has Graves' disease. Although my mammograms have thus far returned clear and my BRCA gene test was negative, I am still feeling defeated. Generally, I feel unwell, and while my baseline state might seem manageable, those flare-ups can render me incapacitated. Thank you for taking the time to read my situation. I'm seeking any ideas or suggestions on potential tests I might inquire about, as I feel somewhat lost at this point.

Answers (1)

6/21/2025, 7:30:50 PM

OpenHealth AI

Thank you for sharing your comprehensive health journey. It’s understandable to feel overwhelmed with the range of symptoms and lack of a clear diagnosis. Your experience deserves thoughtful attention, especially given your family history and the persistence of your symptoms over several years.

Summary of Key Points:

1. Chronic Symptoms: Ongoing fatigue, weight gain, gastrointestinal issues, and episodes of weakness and tingling.
2. Multiple Tests: Various tests have shown some slight abnormalities with no definitive diagnosis yet established.
3. Family Health History: A notable family history of autoimmune and cancer conditions, which may warrant further discussion and investigation.

Explanation:

Your symptoms, including fatigue, sharp abdominal pain, and vision changes, may suggest an underlying condition that is not immediately apparent. Symptoms like swollen lymph nodes during flare-ups, abnormal blood test results, and your family medical history are important factors to consider when determining the next steps for your health.

Your doctor taking your concerns seriously and ordering additional tests was a significant step. It’s also common for tests to show slight abnormalities that do not always lead to immediate answers but can provide insights over time. Your concern about feeling overlooked is valid; ensure your voice is heard during doctor visits.

Actionable Next Steps:

1. Prepare for Your Rheumatology Appointment:

   • Create a detailed symptom diary to take note of when symptoms occur, their duration, severity, and any possible triggers. Bring this diary to your rheumatologist to provide context for your symptoms.

2. Discuss Specific Tests:

   • Inquire about specific autoimmune markers, including tests for lupus (ANA test), Sjögren’s syndrome, and others relevant based on your symptoms (like Antiphospholipid Syndrome). These could help identify any underlying autoimmune disorders.

3. Consider Hormonal and Nutritional Testing:

   • Based on your gynecologist's agreement, discuss further tests for hormone imbalances and consider assessing your Vitamin D levels and other nutrients such as Magnesium and Thiamine, which can also contribute to fatigue and muscle weakness.

4. Engage in a Multidisciplinary Approach:

   • Ask about seeing an endocrinologist for a comprehensive hormone evaluation, as hormonal imbalances can also display a range of systemic symptoms.
   • Consider discussing your history of symptoms with a nutritionist or functional medicine specialist to explore potential dietary contributions to your health issues.

5. Proactive Monitoring:

   • If your symptoms worsen or new symptoms develop, keep an ongoing list of these changes. This may include more significant cognitive changes, persistent pain, or changes in vision that you can present to your healthcare provider.

6. Self-Care Practices:

   • Focus on a balanced diet rich in nutrients to support your overall health and boost energy levels. Foods high in vitamin D and B12 can be beneficial.
   • Engage in gentle physical activity, like walking or yoga, as tolerated, to help maintain energy without overexertion.
   • Prioritize hydration and rest, especially during flare-ups to aid recovery.

7. Seek Support:

   • Joining a support group for people with similar experiences can provide emotional support and even insights into managing symptoms.

Reassurance:

It's understandable to feel frustrated with the uncertainty surrounding your health. Remember that persistence and a thorough approach will support you in finding answers. Stay engaged with your healthcare providers and advocate for your needs. Your health journey is important, and it often requires patience and continued dialogue with providers who value your concerns. If anything changes in your symptoms or if you have further questions, please reach out for more assistance.