Thrombocytopenia is a condition characterised by abnormally low levels of platelets, also known as thrombocytes, in the blood. The rare autoimmmune form, which can affect people at any age, is characterised by fatigue, bruising and bleeding. In the UK, around six adults in every 100,000 have ITP.1 Other forms include those connected to chronic liver disease (CLD) or chemotherapy.
What is ITP?
The word thrombocytopenia simply means a deficiency of thrombocytes, or platelets. In its autoimmune form, the body's immune system mistakenly attacks and destroys its own platelets, leading to a low platelet count.
There are two types of immune thrombocytopenia, based on the cause of the condition. Most adults who are diagnosed with ITP will have primary ITP , an acquired immune disorder, which makes up approximately 80% of adult ITP diagnoses.2,3 Secondary ITP is more commonly found in children after an inciting event such as a viral or bacterial infection.2
The condition was previously known as idiopathic thrombocytopenic purpura, and this term may still be used.
Platelets are tiny, colourless cell fragments in the blood that form clots which stop or prevent bleeding.4 They’re called platelets because when viewed through a microscope in their inactive state they resemble plates. The blood needs a sufficient platelet count in order to clot normally. A normal platelet count ranges from 150 - 450 x 109/L . A person who has a platelet count below 150 x 109/L is said to have thrombocytopenia.
What are the symptoms of ITP?
The symptoms of immune thrombocytopenia can be very different for different individuals. In general, the severity of symptoms will vary according to how far the platelet count is below the normal range.
Common Symptoms
- Fatigue 5
- Petechiae (pinprick rash of blood spots)5
- Bruising5
- Nosebleeds5
- Gum bleeds5
- Black mouth blisters5
- Heavy periods5
Rare Symptoms
- Blood in the eyes5
- Bleeding from the ears5
- Blood in the urine5
- Bleeding from the gut5
- Bleed into the brain5
How is ITP diagnosed?
There are approximately 120 new diagnoses in the UK each year1, with around 3,000 to 4,000 people in the UK having ITP at any one time.5
ITP is identified by a diagnosis of exclusion. There is no single blood test that can prove whether a patient has ITP, so it has to be a process of eliminating other possible causes based on a patient’s history, on examinations, and on the results of initial tests. In diagnosing ITP, the healthcare provider will carry out blood tests to identify the underlying causes of low platelets. ITP is diagnosed if blood tests show that only the platelet count is low while the platelets, red blood cells and white blood cells all look normal.6
If the diagnosis remains uncertain and ITP continues, a bone marrow biopsy may be considered to rule out other causes for a reduced platelet count.7 In this case, a small sample of bone marrow is taken under local anaesthetic and examined under the microscope.
What causes ITP?
Primary ITP is an autoimmune disease: the immune system mistakes the body’s platelets as being foreign and destroys them.8 It usually develops gradually and often without a clear cause.
If ITP arises as a result of another illness, such as a virus, it is called secondary ITP. It can also follow a vaccination or certain medications.8
Having informed conversations with your care team
We believe it is critical that all those with rare conditions should be empowered to have informed conversations with their care team.
Everyone, no matter what their condition, has individual needs and wants - so it is important that any decisions about treatment, support and care are made in partnership between patients and their care team, in an informed way. This will enable the best outcomes possible.
As part of this, we have worked with the ITP Support Association to support development of a shared decision-making tool and discussion guide.
Living with ITP
Immune thrombocytopenia has a substantial, multifaceted impact on patients' quality of life.9
The impact of ITP will vary from person to person and the reasons for symptoms may also differ. Fatigue is one of the main symptoms of ITP reported by patients. Various studies show that more than half of those living with ITP experience fatigue that can often interfere with everyday life.9
The fatigue experienced by people with autoimmune diseases such as ITP is different from the normal, temporary fatigue we all feel after intense activities such as concentrating for a long time or vigorous exercise, or after a poor night’s sleep. That kind of fatigue goes away with rest. But ITP-related fatigue can be debilitating and can interfere with people’s ability to engage in everyday activities, including going to work, university or socialising.10
Below you will find inspiring stories and insights from those who live with ITP, as well as links to some useful information.
Karelle and Dr Lowe's story
Hear about shared decision making in practice.
A short film looking at the interactions between a healthcare professional and someone living with ITP as they work together to make decisions about care.
No Bad Blood
An inspiring film for all those who live with ITP.
Built on the personal stories of three people with ITP, this shows how you can continue to fulfill your passions after a diagnosis with ITP.
ITP Support Association Shared Decision Making Toolkit
A toolkit for ITP patients and people who know someone with the condition.
This helpful guide helps to define what best practice collaborative decision making in ITP management and care looks like and provides a practical guide to help patients, carers and healthcare professionals achieve this.
Patient Organisations
Haematology
The area of medicine dealing with diseases of the blood
References
ITP Support Association: Know about ITP
Know-About-2019.pdf [accessed August 2025]
Zufferey A, Kapur R, Semple JW. Pathogenesis and Therapeutic Mechanisms in Immune Thrombocytopenia (ITP). J Clin Med. 2017 Feb 9;6(2):16.
Lambert MP, Gernsheimer TB. Clinical updates in adult immune thrombocytopenia. Blood. 2017 May 25;129(21):2829-2835.
Cleveland Clinic: What are Platelets
What Are Platelets? Function & Anatomy [accessed August 2025]
ITP Support Association: ITP in Adults
https://www.itpsupport.org.uk/index.php/en/itp-in-adults [accessed August 2025]John Hopkins: Idiopathic Thrombocytopenic Purpura
Idiopathic Thrombocytopenic Purpura | Johns Hopkins Medicine [accessed September 2025)
Mayo Clinic: Immune Thrombocytopenia (ITP)
Immune thrombocytopenia (ITP) - Diagnosis and treatment - Mayo Clinic [accessed September 2025]
ITP Support Association: About ITP
About ITP | Immune Thrombocytopenia Support Association [accessed August 2025]
Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on health-related quality of life
https://pubmed.ncbi.nlm.nih.gov/33107998/ [accessed August 2025]AOB Annals of Blood Immune thrombocytopenia: the patient’s perspective
https://aob.amegroups.com/article/view/6146/html [accessed August 2025]
Sep, 2025