Because immune thrombocytopenia (ITP) is a complex and rare condition, it’s essential to find the right care team. A team of specialists can help you get an accurate diagnosis and develop an effective treatment plan.

Read on to discover which types of specialists may be on your care team with ITP. Click each specialist in the image below to learn more about their role.

Hematologist

While it’s helpful to have a variety of specialists on your ITP team, a hematologist usually leads ITP diagnosis and treatment. They may refer you to other health experts along the way, based on your personal needs.

Hematologists are doctors who specialize in blood disorders. Because ITP occurs when your body mistakenly attacks your platelets and affects clotting, it’s considered a blood disorder. For that reason, hematologists are an important part of your care team.

Some hematologists specialize in specific disease groups. That’s why it’s important to find a hematologist who specializes in ITP. They can help you create an effective treatment plan to control your ITP symptoms, which stem from low platelet counts.

If you have chronic ITP, a hematologist may manage the condition for the rest of your life. But how often you see them will depend on how severe the condition is and how well your treatment is working. Your hematologist will create a follow-up schedule based on your specific situation.

Rheumatologist

A rheumatologist is a doctor who diagnoses and treats autoimmune and inflammatory conditions. Most people with ITP don’t need to see a rheumatologist for ITP alone.

Your hematologist may refer you to a rheumatologist if your symptoms or test results suggest that another autoimmune condition, such as lupus, could be contributing to your low platelet count. A rheumatologist may help evaluate that condition and coordinate care with your hematologist.

Primary Care Provider

A primary care provider is often the first clinician you see when you start noticing ITP symptoms. They may be the first to notice new symptoms that may suggest ITP. That’s because these doctors are usually your first point of contact for any care that isn’t a health emergency. They may evaluate you, order tests, or refer you to a specialist.

Pediatrician

Children and teenagers can have newly diagnosed, persistent, or chronic ITP. Many children recover within the first year, but some continue to have ITP for longer. Children of different ages can develop chronic ITP. Remission — when the platelet count recovers and remains stable without treatment — is more common in children than in adults.

Pediatricians are doctors who specialize in caring for children and young adults, typically from birth through age 21.

If your child or teen has ITP, a pediatrician may serve as their primary care provider. They may also see a pediatric hematologist. A pediatric rheumatologist may become involved if symptoms or test results suggest another autoimmune condition.

Other Members of Your Care Team

In addition to your core care team, you may also see other providers to handle your ITP symptoms.

Dermatologist

A dermatologist may recognize bruising or petechiae (tiny red, purple, or brown spots caused by bleeding under the skin) that could be related to a low platelet count. They may recommend a blood test or refer you to a primary care doctor or hematologist for further evaluation.

Dermatologists do not usually treat ITP or its skin-related signs.

Surgeon

One treatment for chronic ITP is a splenectomy. This is a surgery to remove the spleen. If your care team recommends this treatment, they’ll refer you to a surgeon.

You’ll meet with the surgeon to discuss your surgical options, along with the benefits and drawbacks. After the surgery, you’ll likely meet with the surgeon again to check on your recovery.

OB-GYN

If you are thinking about getting pregnant, an OB-GYN will become part of your care team. These specialists can ensure that you and your baby stay healthy throughout pregnancy with ITP. The OB-GYN will work closely with your hematologist and other providers to monitor your platelet counts.

Emergency Physicians

In some instances, you may experience internal bleeding or bleeding so much you can’t control it. Seek emergency care if you have signs of internal bleeding or if external bleeding doesn’t stop after you apply pressure.

In the emergency department, you’ll be treated by an emergency physician. They’ll share information about your emergency visit with the rest of your care team to update them.

Mental Health Providers

Ongoing illness can take a toll on your mental health. To support mental and emotional well-being, you may see a psychologist or psychiatrist.

A psychologist can provide counseling, coping strategies, and support for behavior or emotional concerns. A psychiatrist is a medical doctor who can diagnose mental health conditions and prescribe medication if needed.

How To Find an ITP Specialist

Searching for ITP specialists can be challenging. Consider these tips when looking for providers.

Ask for a Referral

A great place to start is by asking your primary care provider for a referral. They may know a hematologist with experience treating ITP in your area. You can also ask family and friends if they know of anyone.

Asking your primary care doctor for a referral may also be necessary. For example, some rheumatology practices may require a doctor’s referral before scheduling an appointment.

In some cases, insurance providers want to see a referral from your primary care doctor before covering specialist fees.

Contact Major Medical Centers

If you live near a major medical center, use it as a resource. Because these centers deal with high volumes of cases, doctors at major hospitals are often sought out for their expertise.

Research your local medical center to see which doctors work in its hematology department. Look for a hematologist who treats platelet disorders or has experience with ITP.

Use Professional Directories

Another way to find a specialist is to search in a directory. Several organizations, such as the Platelet Disorder Support Association, offer tools to help you in your search for a doctor.

It’s important to note that not all provider details may be verified. Make sure to research any doctor you find, including whether their office will accept your insurance.

You can also use the American Society of Hematology’s database. The organization’s search tool can help you find a hematologist near you.

Expect Treatment Plan Updates

Even after you have your care team in place, keep in mind that your treatment plan may evolve over time. Your doctor will explain how often you need to be monitored so they can check whether your ITP is under control. If they find that it isn’t, they can adjust your treatment as needed.

Join the Conversation

On myITPteam, people share their experiences with immune thrombocytopenia, get advice, and find support from others who understand.

Which ITP specialists or other healthcare providers are on your care team? Let others know in the comments below.