You probably don’t expect heart valve problems and digestive bleeding to be connected. But a rare condition called Heyde syndrome involves the heart, blood and digestive system. It can cause symptoms like anemia, fatigue or blood in the stool.
Avin Aggarwal, MD, a gastroenterologist and Paul Sorajja, MD, a cardiologist, both with Banner - University Medicine, explained more about how these symptoms connect, the steps that lead to a diagnosis and treatment options.
What is Heyde syndrome?
Heyde syndrome is a condition that affects different parts of your body:
- Aortic stenosis (narrowed aortic valve)
- Ongoing gastrointestinal bleeding from small malformations in blood vessels, called angiodysplasia
- A blood clotting problem called acquired Von Willebrand factor dysfunction
Heyde syndrome is uncommon and doctors often diagnose it after they rule out other possible causes for symptoms.
Why Heyde syndrome happens
When the aortic valve becomes narrow it disrupts blood flow, which affects proteins in the blood that help with clotting. The narrow aortic valve means your blood is forced through a tiny opening at high speed. This force, called shear stress, stretches and breaks Von Willebrand factor, which is a protein that helps your blood clot.
“As a result, small blood vessels in the digestive tract can bleed more easily and cause anemia,” Dr. Aggarwal said.
Common signs and symptoms to watch for
You may have symptoms of Heyde syndrome in more than one part of your body.
Heart-related symptoms
- Shortness of breath
- Chest discomfort
- Feeling lightheaded or faint
- Fatigue or reduced stamina
Bleeding-related symptoms
- Dark or black stools that have a strong odor
- Red or maroon blood in stool
- Blood in vomit, which can be bright red or can look like coffee grounds
- Easy bruising
- Ongoing or unexplained anemia
- Weakness or fatigue
When symptoms may point to Heyde syndrome
Your symptoms might be caused by Heyde syndrome if you have
- Heart valve disease plus unexplained anemia
- Gastrointestinal bleeding without a clear source
- Symptoms that don’t get better with standard treatment
How doctors diagnose Heyde syndrome
The diagnosis of Heyde syndrome may require both a gastroenterologist and a cardiologist working together to review your findings. There is no single test for diagnosis. Your doctors will look for patterns in your heart, blood and digestive system tests.
Medical history and physical exam
“A cardiologist may review your symptoms and listen to your heart for signs of a heart murmur, which could be caused by aortic stenosis,” Dr. Sorajja said.
Blood tests
These tests can:
- Check for anemia
- Evaluate how well your blood is clotting
Heart testing
“An echocardiogram or ultrasound of your heart often is performed,” Dr. Sorajja said.
Digestive testing
“Your gastroenterologist may order an endoscopy or colonoscopy to see what’s causing digestive system bleeding,” Dr. Aggarwal said.
If cardiology testing finds heart valve disease, digestive system testing finds angiodysplasia and you also have anemia, a Heyde syndrome diagnosis is likely, though other causes for the anemia also must be checked.
How Heyde syndrome is treated
Treatment planning is based on your age, overall health and the severity of your symptoms.
Managing bleeding and anemia
Your health care provider may recommend:
- Iron supplements
- Blood transfusions, if needed
- Treating bleeding areas during endoscopy
Treating the underlying heart valve problem
Aortic valve replacement is often the most effective treatment. It can cure Heyde syndrome. In many people, doctors can replace aortic valves with a minimally invasive treatment called transcatheter aortic valve replacement (TAVR).
With TAVR, doctors can treat Heyde syndrome without needing to perform open heart surgery. Instead, they can replace the damaged valve using a thin, flexible tube (catheter) inserted through an artery in the leg. The new valve restores blood flow to its normal pressure so proteins stop being destroyed and digestive bleeding stops.
People with Heyde syndrome are often older and may have other health problems; therefore, TAVR is much easier to tolerate and recover from than open heart surgery.
When to talk to a doctor
With early evaluation, your care team can connect symptoms sooner and start treatment so you feel better. Talk to a health care provider if you have:
- Ongoing anemia without a clear cause
- Repeated digestive bleeding
- Known heart valve disease along with new symptoms
- Fatigue, weakness or shortness of breath that doesn’t get better
The bottom line on Heyde syndrome
Heyde syndrome is rare but if you have certain heart and digestive symptoms it could be the reason. To diagnose and treat it, you may need care from a gastroenterologist and cardiologist working together. With a heart valve replacement, your symptoms may clear up.
If you have unexplained anemia, digestive bleeding or symptoms of heart valve disease, a Banner Health provider can recommend testing and connect you with the right specialists.
FAQs
What is Heyde syndrome?
It is a condition that links a narrowed heart valve with gastrointestinal bleeding and clotting changes.
What causes bleeding in Heyde syndrome?
Changes in blood flow can affect clotting proteins, making bleeding more likely.
How is Heyde syndrome diagnosed?
Through a combination of blood tests, heart imaging and gastrointestinal testing.
Can Heyde syndrome be cured?
Treating the heart valve often improves or resolves symptoms.
Is Heyde syndrome common?
No. It is a rare condition, often diagnosed after other causes are ruled out.
When should I see a doctor for these symptoms?
If you have unexplained anemia, bleeding or symptoms of heart valve disease.
