Polycythemia (too many red blood cells)

Overview

Polycythemia vera is a bone marrow disorder. Secondary polycythemia comes from low oxygen, smoking, or testosterone.

Symptoms

Common signs:

• High red cell count

Less common

• Headaches
• Itching after showers
• Red face
• Dizziness

When to get medical care

Causes

Many causes.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Who is more likely to get it

• Smoking

Possible complications

• Blood clot in the leg (DVT): Thick blood clots more easily
• Stroke: From clots

Diagnosis

Blood tests.

Treatment

Treat cause.

Self-care

• Don't smoke
• Stay hydrated
• Keep up with blood draws if prescribed
• Drink plenty of water

Prevention

To lower your risk or prevent problems:

• Don't smoke

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a hematologist (blood doctor).

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• People with sleep apnea or on testosterone: Higher risk.
• Adults over 60: Most common.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

Outlook

Treatable.

Treatment lowers clot risk.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• Do I need blood removed?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Polycythemia (too many red blood cells)