A diagnosis of immune thrombocytopenia (ITP), previously known as idiopathic thrombocytopenia, can bring up a lot of questions. Make sure you’re prepared at your next doctor’s appointment by having these questions on hand.

1. What caused my condition?

ITP is considered an autoimmune reaction in which your body attacks its own cells. In ITP, your body attacks platelets, which lowers your count for this type of blood cell. Like other autoimmune diseases, the underlying cause of these platelet attacks isn’t known.

Some cases of ITP are linked to autoimmune reactions from recent bacterial or viral infections. Long-term viruses, such as HIV and hepatitis C, may also lead to ITP.

When you understand the underlying cause that may be contributing to your condition, it will help you and your doctor form an ITP treatment plan. You may also need to treat any viral infections causing a low platelet count.

2. What do my platelet results mean?

ITP is caused by a low platelet count. Platelets are the types of blood cells that help your blood clot so you don’t bleed excessively. When you don’t have enough platelets, you’re more susceptible to spontaneous bruising and bleeding.

A normal platelet reading is between 150,000 and 450,000 platelets per microliter (mcL) of blood. People with ITP have readings below 100,000 platelets per mcL. A reading of less than 20,000 platelets per mcL could mean you’re at a greater risk for internal bleeding.

3. What is my risk for internal bleeding?

Both internal and external bleeding are associated with ITP. Internal bleeding can pose a higher risk of complications because you don’t always know it’s happening. As a rule of thumb, the lower your platelet count, the higher your risk of internal bleeding, according to the Mayo Clinic.

In severe cases, ITP can cause bleeding in the brain. However, according to the National Heart, Lung, and Blood Institute (NHLBI), this is a rare occurrence.

4. What can I do to prevent bleeding and bruising?

When you have ITP, internal and external bleeding and bruising can occur even if you haven’t been injured. However, injuries put you at risk for more extensive bleeding. It’s important to protect yourself from harm when possible. This may involve wearing protective gear, such as a helmet when riding a bike. It’s also important to be careful when walking on uneven or slippery surfaces to prevent falls.

5. Is there anything I should avoid with ITP?

Your doctor might recommend you avoid certain places and activities to protect yourself from infection and injury. This is dependent on the severity of your condition. As a rule of thumb, you may need to avoid contact sports, such as football, soccer, and basketball.

However, you don’t have to avoid all activities — in fact, regular exercise is important in keeping your cardiovascular system healthy.

6. What if my treatment isn’t working?

Worsening symptoms such as visible bruising or bleeding could mean your current treatment isn’t working. Other symptoms, such as blood in your urine or stool or heavier periods in women, can all be signs that your current treatment may not be adequate.

Your doctor might recommend quitting medications that can increase your bleeding. These could include nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or aspirin.

If your medications still aren’t working, ask your doctor about other ITP treatment options. They might recommend switching ITP medications or including other treatments such as immunoglobulin infusions. So talk to your doctor. It’s important to learn all your options.

7. Will I need my spleen removed?

Some people with ITP may eventually need a spleen removal. This surgery, known as a splenectomy, is done as a last resort when multiple medications have failed to help.

The spleen, which is located on the upper left side of your abdomen, is responsible for making infection-fighting antibodies. It also is responsible for removing damaged blood cells and platelets from the bloodstream. Sometimes ITP can mistakenly cause your spleen to attack healthy platelets.

A splenectomy could stop these attacks on your platelets and improve your symptoms of ITP. However, without a spleen, you could be at risk for more infections. For this reason, a splenectomy isn’t recommended for everyone with ITP. Ask your doctor whether this is a possibility for you.

8. Is my ITP acute or chronic?

ITP is often identified as either acute (short term) or chronic (long term). Acute ITP frequently develops following a severe infection. It’s more common in children, according to the NHLBI. Acute cases typically last under six months with or without treatment, while chronic ITP lasts longer, often lifelong. However, even chronic cases may not need treatment depending on the severity. It’s important you ask your doctor about these distinctions in diagnosis to help you decide on a treatment option.

9. Are there any serious symptoms I need to watch for?

Red or purple spots on the skin (petechiae), bruising, and tiredness are common symptoms of ITP, but these aren’t necessarily life-threatening. You might ask your doctor whether worsening of such symptoms could mean you need to change your treatment plan or get follow-up testing.

Your doctor may also advise you to call them if you experience any symptoms of an infection or bleeding. These can include:

  • shaking chills
  • high fever
  • extreme fatigue
  • headaches
  • chest pain
  • shortness of breath

If you experience bleeding that doesn’t stop, call 911 or your local emergency services. Uncontrollable bleeding is considered a medical emergency.

10. What is the outlook for my condition?

According to the NHLBI, most people with chronic ITP live for decades without major complications. ITP may be temporary, and it could be mild. It could also be severe and require more aggressive treatment.

Your doctor can give you a better idea of your outlook based on your age, overall health, and response to treatment. While there’s no cure for ITP, regular treatments combined with a healthy lifestyle can help you manage your condition. It’s also important that you follow your treatment plan to ensure the best quality of life.