The signs and symptoms of PNH can be similar to those of other diseases. It is important to discuss all of your symptoms with your doctor. It is an unpredictable disease that everyone can experience differently, even from day to day. There is no one sign, symptom, or lab result that defines PNH, but there is a test that can identify it. PNH can be diagnosed using high-sensitivity flow cytometry – a minimally invasive and relatively inexpensive peripheral blood test that your doctor can order.
Sometimes symptoms you can see or feel are a clue to things that are going on beneath the surface — serious signs you may not always be able to see or feel. You may feel fine, even when your lab results show potential problems. That is how PNH is like an iceberg — what you cannot see or feel can hurt you the most.
It’s important for you and your doctor to track your signs, symptoms and lab results, and to treat your PNH early and aggressively before serious problems occur.
Symptoms you can see or feel.
- Fatigue.Tiredness, difficulty performing daily activities, trouble concentrating, dizziness, weakness.
- Pain.Stomach pain, leg pain or swelling, chest pain, back pain.
- Other signs and symptoms.Dark-colored urine, shortness of breath, difficulty swallowing, yellowing of the skin and eyes, erectile dysfunction (ED).
Signs you may not always see or feel.
- Blood clots
- Kidney disease
- Damage to your organs
- Heart attack
Even though you can't see or feel it, hemolysis is always happening in your body. Hemolysis is the main cause of major health problems in people with PNH.
Serious health risks can take you by surprise. If left untreated, PNH can lead to:
Life-threatening blood clots
Formed when parts of the blood clump together, blood clots can block veins and arteries and lead to heart attack, stroke, and organ damage, as well as other problems. They can occur at any time, even in patients with a small percentage of PNH cells in their blood. Blood clots are one of the most serious, life-threatening conditions in patients with PNH.
Almost 2/3 of people with PNH have chronic kidney disease.
Hemolysis affects the way oxygen gets delivered throughout your body. This can make you feel weak and tired to the point where once-normal, everyday activities become a struggle.
In PNH, there are actually two causes of fatigue: hemolysis itself, which is the main cause of fatigue, and the anemia that’s caused by hemolysis.
Fatigue is often worse than the amount of anemia you have, as measured by your hemoglobin level.
Serious lung problems
Lung problems can be caused by pulmonary hypertension. This can lead to shortness of breath and other serious health problems.