Lab tests
Lab tests
Making sense of the numbers
PNH is rare, and the symptoms can be similar to those of other diseases, so it can be a challenge to diagnose.
Many different blood tests are used to help diagnose and monitor PNH, each of which provides valuable clues.
It detects if red blood cellsred blood cellsThe most common type of blood cell. Their job is to carry oxygen using an important molecule, hemoglobin, around the body. are missing their protective shield, a key sign of PNH. It also calculates the quantity of blood cells impacted by PNH, which is called your “clone size.” If your PNH is untreated and you have a large clone size, it means you have a high percentage of blood cells that may be destroyed, which could lead to more severe symptoms.
Additional tests
What numbers should I expect?
While the goal of treatment in PNH is to prevent the destruction of red blood cells (hemolysis), there is no formal standard for exactly what numbers reflect red blood cell destruction.
Instead of relying on a single lab test, doctors often consider multiple lab results to be the best gauge, with the goal of ultimately reaching “normal” levels – the numbers you might expect in a person who doesn’t live with PNH.
The way labs process tests is different, so what they consider a “normal” range can vary as well. Below are sample ranges from two prominent labs in the US, which are for informational purposes only and are not meant to help you interpret your own lab values. The range your doctor uses to diagnose and monitor your PNH may be different, so you should always talk to your doctor for guidance when it comes to your PNH, including how to interpret lab values.
Normal ranges for common tests
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Test Test
Sample range 1 Sample range 1
Sample range 2 Sample range 2
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Test Hemoglobin (Hb)
Sample range 1 Male: 13.2-16.6 g/dL
Female: 11.6-15.0 g/dLSample range 2 Male: 13.0-17.7 g/dL
Female: 11.1-15.9 g/dL -
Test Lactate dehydrogenase (LDH)
Sample range 1 122-222 U/L
Sample range 2 121-224 IU/L
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Test Absolute reticulocyte count (ARC)
Sample range 1 30.4-110.9 x109/L
Sample range 2 0.6-2.6%
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Test Bilirubin
Sample range 1 Total <1.2 mg/dL
Sample range 2 Total 0.0-1.2 mg/dL
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Test Red blood cells (RBC)
Sample range 1 Male: 4.35-5.65 trillion cells/L
Female: 3.92-5.13 trillion cells/LSample range 2 3.77-5.28 x 106/µL
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Test White blood cells (WBC)
Sample range 1 3.4-9.6/L
Sample range 2 3.4-10.8 x 103/µL
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Test Platelets
Sample range 1 Male: 135-317 billion/L
Female: 157-371 billion/LSample range 2 150-379 x 103/µL
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Test Haptoglobin
Sample range 1 30-200 mg/dL
Sample range 2 17-317 mg/dL
The whole picture
Lab tests provide important clues to what might be going on in your body. This information, along with how your PNH symptoms are impacting your daily life, can help paint a more complete picture for your doctor.
If your doctor says your labs are “good,” but you still feel off, talk to them. Have an open and honest conversation about how your symptoms are impacting your day-to-day life and what you’d like to change. Together, you can explore how to improve your life with PNH.
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“A year ago, normal meant I could work all day and make it home. Now, it means I can work all day and still have energy to do things like walk my dog or clean the house when I get home. I didn’t like my normal, so I redefined it.”
– Alyce, living with PNH
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“I don’t want PNH to hold me back in life. I got engaged, and we’re working to buy a house. The more I try things, the less I’m afraid of not feeling well.”
– Eric, living with PNH
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“I used to equate ‘normal’ with my lab values and wonder why I didn‘t feel as well as my labs said I should. Now, it’s all about how I feel and my way of life”
– Jessi, living with PNH