Short answer · Medically reviewed summary · Last updated: 2026-05-08
TL;DR: Carcinoid syndrome is a rare condition caused by neuroendocrine tumors that secrete hormones, most notably characterized by episodic facial flushing and chronic diarrhea. If you experience these symptoms, especially when accompanied by wheezing or heart palpitations, consult a specialist to investigate potential hormonal markers. What are the early signs of Carcinoid Syndrome? The hallmark of Carcinoid Syndrome is a combination of symptoms caused by the release of serotonin and other substances into the bloodstream.
1 people with Carcinoid Syndrome have shared their first-person experience on this question at DiseaseMaps.
How do I know if I have Carcinoid Syndrome?
Could you have Carcinoid Syndrome? Early signs that prompted real patients to seek diagnosis, plus medically reviewed guidance.
TL;DR: Carcinoid syndrome is a rare condition caused by neuroendocrine tumors that secrete hormones, most notably characterized by episodic facial flushing and chronic diarrhea. If you experience these symptoms, especially when accompanied by wheezing or heart palpitations, consult a specialist to investigate potential hormonal markers.
What are the early signs of Carcinoid Syndrome?
The hallmark of Carcinoid Syndrome is a combination of symptoms caused by the release of serotonin and other substances into the bloodstream. Early indicators often include:
- Flushing: Sudden reddening of the face, neck, or upper chest, often triggered by stress, alcohol, or specific foods.
- Diarrhea: Frequent, watery bowel movements that occur regardless of dietary changes.
- Wheezing: Episodes that mimic asthma but are unrelated to allergies or respiratory infections.
- Heart Palpitations: A rapid or irregular heartbeat during or after flushing episodes.
How can I track my health for Carcinoid Syndrome?
If you suspect you have Carcinoid Syndrome, keep a detailed symptom diary for at least two weeks. Note the time of day, duration of flushing, specific foods consumed, and frequency of diarrhea. Understanding these patterns is vital because Carcinoid Syndrome symptoms can be intermittent and easily mistaken for menopause, irritable bowel syndrome (IBS), or food intolerances.
When should I see a doctor and what tests are necessary?
If you have persistent, unexplained symptoms, schedule an appointment with a gastroenterologist or endocrinologist. When discussing Carcinoid Syndrome, specifically ask for these diagnostic tests:
- 24-hour urine test: To measure 5-HIAA, a byproduct of serotonin breakdown.
- Blood tests: Specifically for Chromogranin A (CgA) levels.
- Imaging: CT, MRI, or specialized PET scans (such as Gallium-68 DOTATATE) to locate the primary tumor.
What are the red flags requiring urgent care?
Seek immediate medical attention if you experience signs of a "carcinoid crisis," which includes severe, uncontrollable flushing, extreme blood pressure instability, or confusion. While rare, these systemic reactions to Carcinoid Syndrome require emergency stabilization.
How do I advocate for my health?
If your concerns are dismissed, bring printed literature from reputable sources like the 49 members of the DiseaseMaps.org Carcinoid Syndrome community or the Neuroendocrine Cancer Awareness Network. Request a referral to a center of excellence that specializes in neuroendocrine tumors.
Next steps
- Consult an endocrinologist or gastroenterologist familiar with neuroendocrine tumors.
- Document your symptoms in a journal to provide clear data to your physician.
- Join the Carcinoid Syndrome community at DiseaseMaps.org to connect with others who have navigated the diagnostic process.
Medical disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment.
References
- NIH Genetic and Rare Diseases Information Center (GARD): Carcinoid Syndrome.
- Orphanet: Rare disease database on neuroendocrine tumors.
- Neuroendocrine Cancer Awareness Network (NCAN): Patient resources and clinical guidelines.
- PubMed: Clinical reviews on the pathophysiology and management of Carcinoid Syndrome.
A Good Gastroenterologist or Primary Care Provider should be willing to do the testing for you. Most NET Specialists will only see you if you have been confirmed to have the disease. A good Oncologist should also be a doctor that would be able find this disease.
Posted Sep 14, 2017 by Vickie 2000
