Short answer · Medically reviewed summary · Last updated: 2026-05-08

Carcinoid syndrome is a paraneoplastic condition caused by neuroendocrine tumors that secrete excess hormones, most characteristically manifesting as episodic skin flushing, chronic diarrhea, and wheezing. These symptoms occur when the tumor has progressed, typically requiring the bypassing of first-pass liver metabolism, and require specialized management by an endocrinologist or oncologist. What are the primary symptoms of Carcinoid Syndrome? The clinical presentation of carcinoid syndrome is driven by the systemic release of vasoactive substances, such as serotonin, into the bloodstream.

3 people with Carcinoid Syndrome have shared their first-person experience on this question at DiseaseMaps.

1

Which are the symptoms of Carcinoid Syndrome?

Symptoms of Carcinoid Syndrome reported by real patients, from the most common to the most limiting, plus a medically reviewed summary with sources.

Carcinoid Syndrome symptoms

Carcinoid syndrome is a paraneoplastic condition caused by neuroendocrine tumors that secrete excess hormones, most characteristically manifesting as episodic skin flushing, chronic diarrhea, and wheezing. These symptoms occur when the tumor has progressed, typically requiring the bypassing of first-pass liver metabolism, and require specialized management by an endocrinologist or oncologist.



What are the primary symptoms of Carcinoid Syndrome?


The clinical presentation of carcinoid syndrome is driven by the systemic release of vasoactive substances, such as serotonin, into the bloodstream. The most frequent symptoms include:



  • Cutaneous Flushing: Sudden reddening of the face, neck, and upper chest, often lasting from a few minutes to several hours.

  • Diarrhea: Frequent, watery, and often secretory bowel movements that can lead to significant electrolyte imbalances.

  • Bronchospasm: Episodes of wheezing and dyspnea, which can mimic asthma.

  • Cardiac Valvular Lesions: Long-term exposure to high serotonin levels can lead to fibrotic thickening of the heart valves, particularly the tricuspid valve.



What are the early warning signs to monitor?


Early indicators of carcinoid syndrome are often subtle and non-specific, which can lead to diagnostic delays. Patients should track the frequency and duration of "flushing" episodes, especially if they are triggered by stress, alcohol, or specific tyramine-rich foods. Unexplained, persistent gastrointestinal distress that does not respond to standard over-the-counter treatments is a hallmark early warning sign of carcinoid syndrome.



How does symptom severity affect quality of life?


The impact of carcinoid syndrome on daily life varies significantly between the 49 members of our DiseaseMaps.org community and broader clinical populations. While some patients experience mild, infrequent symptoms, others face debilitating diarrhea and severe flushing that can lead to social isolation and significant fatigue. Managing the nutritional deficiencies caused by chronic malabsorption is often a primary focus for improving quality of life for those living with carcinoid syndrome.



When should you seek immediate medical attention?


Patients must seek emergency care if they experience a "carcinoid crisis." This is a life-threatening complication characterized by severe hypotension (low blood pressure), extreme flushing, tachycardia, and altered mental status. Such events often occur after physical stress, anesthesia, or tumor manipulation and require immediate stabilization with intravenous somatostatin analogs.



Next steps



  • Consult an oncologist specializing in neuroendocrine tumors (NETs) to establish a baseline for your hormone levels.

  • Keep a detailed symptom diary to identify specific "triggers" for your carcinoid syndrome episodes.

  • Join the DiseaseMaps.org community to connect with others sharing similar experiences.

  • Discuss with your physician the use of somatostatin analogs to control hormone secretion.



Medical disclaimer: This content is for informational purposes only and does not constitute professional medical advice, diagnosis, or treatment; always seek the advice of your physician regarding a medical condition.



References



  • NIH Genetic and Rare Diseases Information Center (GARD): Carcinoid Syndrome.

  • Orphanet: Neuroendocrine tumor (Rare Disease Database).

  • The Neuroendocrine Cancer Awareness Network (NCAN).

  • PubMed: Clinical Guidelines for the Management of Carcinoid Syndrome.

Author: DiseaseMaps Editorial Team
Reviewed against authoritative medical sources (NIH GARD, Orphanet, OMIM)
Last updated: 2026-05-08
Medical disclaimer: This information does not substitute professional medical advice. Always consult your doctor before making health decisions.
Source: DiseaseMaps.org
4 answers
Diarrhea is the worst symptom to have. Uncontrollable diarrhea. Diarrhea is provoked by foods/beverages that we consume on a daily basis. Over time, one will learn which foods are their trigger points. Diarrhea is the one symptom we, living with this disease, do not want. Flushing is another symptom. Most of us have both diarrhea and flushing and some have just one or the other.

Posted Sep 14, 2017 by Vickie 2000
Itching, flushing, shortness of breath

Posted Sep 14, 2017 by Lisa 300
Being tired all the time.

Posted Sep 15, 2017 by Wendy 100

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