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Symptoms and Warning Signs of HHT

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Hereditary Hemorrhagic Telangiectasia (HHT) causes visible symptoms like severe, recurrent nosebleeds and small red spots on the face and hands. It also causes hidden blood vessel abnormalities (AVMs) in the lungs, brain, and liver, making routine medical screening essential.

Key Takeaways

  • • Recurrent, spontaneous nosebleeds are the most common and often the earliest visible sign of HHT.
  • • Small red spots called telangiectasias frequently appear on the lips, face, and fingertips as the condition progresses.
  • • Chronic blood loss from nosebleeds and hidden digestive tract bleeding frequently leads to iron deficiency anemia.
  • • Hidden arteriovenous malformations (AVMs) in the lungs, liver, or brain are silent but can cause life-threatening complications like strokes.
  • • Seek emergency care immediately for sudden weakness, severe headaches, rapid swelling, or signs of internal bleeding.

Hereditary Hemorrhagic Telangiectasia (HHT) is often called a “hidden” condition because many of its most serious effects happen deep inside the body where they cannot be seen [1][2]. Understanding the difference between visible symptoms and “silent” warning signs is critical for managing your health and preventing complications.

Common Visible Symptoms

Most people with HHT will experience outward signs that help lead to a diagnosis. These symptoms often progress over time.

  • Recurrent Nosebleeds (Epistaxis): This is the most common symptom, affecting nearly everyone with HHT [3]. These aren’t typical nosebleeds; they are spontaneous, happen frequently (sometimes daily), and can be difficult to stop [4][5]. While they often start in childhood or teen years, they can become more frequent as you age [3].
  • Red Spots (Telangiectasias): These are tiny, dilated blood vessels that appear as small red or purple spots [6]. They are most commonly found on the lips, tongue, face, and fingertips [7][8]. They typically appear after the nosebleeds begin and may increase in number over the years [6].
  • Gastrointestinal (GI) Bleeding: Slow bleeding in the stomach or intestines is common, especially as patients get older [4]. This can lead to dark, tarry stools and significantly worsen anemia [9].
  • Chronic Anemia: Because of frequent nosebleeds or “slow leaks” in the stomach or intestines, many HHT patients develop iron deficiency anemia [10][11]. This can cause severe fatigue, pale skin, and shortness of breath [4][12].

“Silent” Symptoms of Visceral AVMs

Arteriovenous Malformations (AVMs) are larger abnormal vessel connections inside your organs. They are often “silent,” meaning you may not feel them until a complication occurs [2][13].

  • Lung (Pulmonary) AVMs: These can act as a “bypass,” allowing blood clots or bacteria to travel directly to the brain [14][13]. This significantly increases the risk of stroke or brain abscess (infection) [15][7].
  • Liver (Hepatic) AVMs: While often asymptomatic, large AVMs in the liver can force the heart to work much harder to pump blood through the “short circuit,” eventually leading to high-output heart failure [16][17].
  • Brain (Cerebral) AVMs: These are present in about 10% of patients and, while often silent, carry a risk of internal bleeding (hemorrhage) [18][19].

Emergency Warning Signs Checklist

If you or a loved one with HHT experiences any of the following, seek emergency medical care immediately:

  1. Signs of Stroke: Sudden weakness or numbness (especially on one side of the body), facial drooping, difficulty speaking, or sudden confusion [19][7].
  2. Signs of Brain Abscess: A sudden, severe headache accompanied by fever or neurological changes [7][20].
  3. Signs of Severe Anemia or Heart Strain: Sudden, extreme shortness of breath, chest pain, or rapid swelling in the legs [16][17].
  4. Signs of Internal Bleeding: Vomiting blood or passing dark, tarry, or “coffee-ground” stools (signs of GI bleeding) [9][4].

What Else Could It Be?

HHT symptoms can sometimes look like other conditions. Your doctor will rule out:

  • Juvenile Polyposis Syndrome (JPS): A condition that causes polyps in the GI tract and can overlap with HHT in some families [21].
  • Other Vascular Syndromes: Rare conditions like Blue Rubber Bleb Nevus Syndrome or Klippel-Trenaunay Syndrome also cause vascular marks but have different patterns and risks [22][23].
  • Benign Telangiectasias: Some people have red spots on their skin that are harmless and do not involve internal organs [24].

Frequently Asked Questions

Why do people with HHT get so many nosebleeds?
Recurrent, spontaneous nosebleeds are the most common symptom of HHT due to fragile, abnormal blood vessels in the nose. They can happen frequently, sometimes daily, and often become more severe as a person ages.
What are the red spots associated with HHT?
The small red or purple spots are called telangiectasias, which are tiny, dilated blood vessels. In people with HHT, they typically appear on the lips, tongue, face, and fingertips after the onset of nosebleeds.
What is a silent symptom or AVM in HHT?
Arteriovenous Malformations (AVMs) are larger abnormal blood vessel connections hidden inside organs like the lungs, liver, and brain. They are considered silent because they often do not cause physical symptoms until a serious complication occurs, such as a stroke or internal bleeding.
Why does HHT cause severe anemia?
Frequent nosebleeds and slow, hidden bleeding in the stomach or intestines can constantly deplete your body's iron stores. Over time, this chronic blood loss frequently leads to iron deficiency anemia, causing fatigue, shortness of breath, and pale skin.
What are the emergency warning signs for an HHT patient?
You should seek immediate medical care if you experience signs of a stroke, a sudden severe headache with a fever, extreme shortness of breath, or vomiting blood. These can indicate severe complications from hidden AVMs or internal bleeding.

Questions for Your Doctor

  • • How often should I have my hemoglobin and iron levels checked to manage potential anemia?
  • • Since many AVMs are 'silent,' what is the specific screening schedule for my lungs, brain, and liver?
  • • I have red spots on my lips/fingers; are these likely to increase in number as I age?
  • • Are there specific activities or environments (like high altitudes or scuba diving) I should avoid because of my AVMs?
  • • What is the safest way to stop a severe nosebleed at home before seeking emergency care?

Questions for You

  • • How many times per week do I experience nosebleeds, and how long do they typically last?
  • • Do I find myself feeling unusually tired, short of breath, or pale? (These could be signs of anemia).
  • • Have I ever experienced sudden "warning" symptoms like a brief spell of weakness, tingling, or confusion?
  • • When I look in the mirror, do I see small red or purple spots on my lips, tongue, or inside my mouth?

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This page provides educational information about HHT symptoms and warning signs. It does not replace professional medical advice, and you should seek immediate emergency care for signs of stroke, severe bleeding, or heart strain.

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