Concerning CA19-9 Levels: Unexpected Weight Loss Without Answers
• 19 years old, assigned female at birth • Weight: 137 lbs, Height: 5'6" • Current Medication: 10mg Focalin • Diagnoses: PCOS, OCD, ADHD, anxiety, and depression Since December 2024, I've experienced a dramatic weight reduction of over 100 lbs, dropping from nearly 240 lbs to my current weight of 137 lbs. I have undergone extensive medical evaluations including comprehensive blood panels, colonoscopy, endoscopy, x-rays, and CT scans of the chest, abdomen, and pelvis, in addition to physical examinations, yet no conclusive answers have surfaced. We've ruled out numerous possibilities, and it feels as though my situation might simply be attributed to a natural physiological shift. The only notable finding from my most recent blood test was a CA19-9 antigen level of 61. While my doctor mentioned this isn't alarmingly high, it is sufficient to warrant attention. Additionally, my free T4 was slightly elevated, but my physician did not seem to think it was a cause for concern. As previously stated, all imaging tests returned with normal results. I do not use any drugs, and I do not engage in vomiting, either intentionally or otherwise; in fact, I rarely experience significant nausea. What I do encounter is intense hunger that strikes every three hours, making it exceedingly painful at times, regardless of my previous intake or quantity. Eating on an hourly basis has become essential to avoid losing weight at a rapid pace of five pounds every five days, which is becoming increasingly frustrating. I have a follow-up appointment scheduled for this coming Friday to retest my CA19-9 levels, and I suspect it will remain elevated. Despite the antigen's sensitivity, it feels like we might not have captured it at its peak. I am also set to have a transvaginal ultrasound for ovarian examination soon, and a family friend who is a physician recommended I inquire about a thyroid ultrasound as well. Overall, I feel somewhat lost regarding the next steps to take, which is why I'm reaching out here. - If my test shows elevated levels again, what additional diagnostic measures can we pursue? - If it returns normal, what could have accounted for these symptoms? I’ve been told that various potential causes, even the more alarming ones, are unlikely, leaving me uncertain about what could be the root of this issue. Thank you for any guidance you can provide! :)
Answers (1)
8/15/2025, 6:02:10 PM
OpenHealth AI
It's understandable that you feel overwhelmed and uncertain given the significant weight loss and the complex medical evaluations you've undergone. The elevated CA19-9 levels and the absence of clear answers can be particularly disheartening. Here are some key points and next steps to consider based on the information you've shared:
Main Points
- Weight Loss and Hunger: A loss of over 100 lbs with accompanying intense hunger is significant and warrants careful evaluation.
- CA19-9 Levels: While your levels aren’t alarmingly high, they do require monitoring to discern if they indicate an underlying issue.
- Further Diagnostic Options: There's a path forward to explore additional evaluations if levels remain elevated or other symptoms develop.
Explanation
- CA19-9 is a tumor marker that can indicate several conditions, often related to the pancreas or gallbladder, but elevated levels can also occur in benign conditions. It's good to hear that your physician is monitoring them and providing context.
- Your free T4 levels could suggest thyroid involvement, but if it's not a major concern for your doctor, continuous monitoring rather than immediate action might be the approach.
- Your symptoms of severe hunger and weight loss might be related to metabolic processes, potential hormonal imbalances (such as those coming from PCOS), or even stress-related factors given your context of anxiety and depression.
Next Steps
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Follow-up Testing: Since you are retesting your CA19-9 levels soon, be sure to discuss the implications of the results with your healthcare provider. If these levels are elevated again, your doctor may consider:
- Further Imaging: Depending on how your ultrasound goes, additional imaging studies of the pancreas or abdomen might be warranted.
- Other Tumor Markers: Discuss checking other relevant markers that could aid in diagnosing conditions affecting weight or appetite.
- Endocrine Review: Given your symptoms, consider requesting a comprehensive thyroid panel to assess for conditions such as hyperthyroidism or other hormonal imbalances.
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Nutrition and Weight Management: In the interim, focus on maintaining a balanced diet that can support healthy weight:
- Frequent Small Meals: Continue with smaller, more frequent meals as required to alleviate hunger without excessive weight loss.
- Nutrient Density: Aim for nutrient-rich foods. Include healthy fats (like avocados, nuts), lean proteins (chicken, fish), and complex carbohydrates (whole grains) to help stabilize your weight.
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Monitoring Symptoms: Keep a diary of your symptoms, food intake, and any changes in your hunger or weight. This information can be valuable for your healthcare team during upcoming appointments.
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Mental Health Support: Given your background of anxiety and depression, consider maintaining open communication with a mental health professional. Stress and emotional wellbeing can significantly affect physical health and appetite.
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Stay Engaged with Healthcare Providers: Continue advocating for yourself in discussions with your healthcare team. If at any point your symptoms worsen or new symptoms arise, inform your doctor promptly.
Conclusion
You're taking important steps by following up on your health and being thorough in your evaluations. Your upcoming appointments will hopefully provide more clarity. Stay proactive, and don't hesitate to express all your concerns during your consultations. If you have more questions or need further clarification, feel free to reach out.
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