Carcinoid Syndrome Symptoms

Carcinoid Syndrome Symptoms

Carcinoid Syndrome is rare and can be difficult to diagnose, as it causes symptoms that are similar to other conditions like irritable bowel syndrome (IBS), Crohn’s disease, or menopause. Unlike other conditions, the symptoms of Carcinoid Syndrome are caused by NETs, which produce too much serotonin.

High levels of serotonin in your bloodstream can cause symptoms which affect your daily life, long-term health, as well as your emotional and psychological well-being. Lifestyle choices, such as what you eat and how active you are can also affect your symptoms.

When serotonin breaks down, it creates a byproduct called 5-HIAA that can be measured in your blood or urine. Doctors can test the level of 5-HIAA in your body.

When my symptoms aren’t so bad, I start to feel as well as I look.
– Person with Carcinoid Syndrome

Some of the most common symptoms include:

Other symptoms may include:

  • Stomach pain
  • Stomach cramping
  • Low blood pressure
  • Night sweats
  • Extreme tiredness (fatigue/exhaustion)
  • Weight gain or loss
  • Sudden urge to use the bathroom

Understanding the 5 Es

The 5 Es are common triggers for Carcinoid Syndrome. By being aware of these triggers, you may be able to reduce symptoms caused by certain triggers. Everyone’s triggers can be different. It is important to monitor your Carcinoid Syndrome and discuss the best ways to prevent carcinoid crisis with your healthcare team.

DESCRIPTION

Adrenaline is a hormone secreted by the adrenal glands. The synthetic form of adrenaline (epinephrine) is commonly found in allergy and cold medicine. Epinephrine can be one of the worst triggers for Carcinoid Syndrome. It is also found in Novocain used in dentists’ offices.

PREVENTION TIPS

Be sure to share with your dentist that you have Carcinoid Syndrome and to have Novocain alternatives. Also, be sure to wear a medical ID bracelet or carry a wallet card at all times.

DESCRIPTION

Certain foods can trigger symptoms. Your healthcare team can help you plan a diet that is nutritious without causing symptoms.

PREVENTION TIPS

Create a shopping list of healthy grocery items that do not trigger your symptoms.

Make an appointment with a registered dietitian or nutritionist for help creating meal plans.

DESCRIPTION

Stress and emotional swings can trigger Carcinoid Syndrome symptoms. Working with your healthcare team to limit stress can improve your overall mental, emotional, and physical health.

PREVENTION TIPS

Make time for your favorite relaxing activities like walking, resting, or meditation.

DESCRIPTION

While exercise is essential to maintain your health, it can also be a trigger for symptoms. Speak with your doctor about how to work exercise into your life without triggering symptoms.

PREVENTION TIPS

Try low-to-moderate impact exercises like walking, lifting lighter weights, or swimming.

Remember that gardening and other physical activities that get you moving count as well.

DESCRIPTION

Many people with Carcinoid Syndrome find that alcohol is difficult to tolerate. It is key to monitor your intake and do what works best for you.

PREVENTION TIPS

Try alternatives to alcohol-based drinks.

I have fewer flare-ups now that I know my triggers.
– Person with Carcinoid Syndrome

Flare-ups

Frequent flare-ups can also be a sign that your Carcinoid Syndrome needs more control. Talk with your healthcare team to see what works best for you.

WHAT ABOUT YOU ?

Do you remember what triggered your latest flare-ups? Keeping track of what may have caused previous flare-ups can help you avoid them in the future.

5-HIAA=5-hydroxyindoleacetic acid; NET=neuroendocrine tumor.

COMPLETE THE CARCINOID SYNDROME IMPACT TOOL
LEARN MORE ABOUT 5-HIAA

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