Information for the public
Finding out what's wrong
Idiopathic pulmonary fibrosis is difficult to diagnose. You will need to see a specialist doctor who will work closely with radiologists (doctors who specialise in interpreting scans and X‑rays) and specialist lung nurses to diagnose the cause of your symptoms. This may give you a 'confident diagnosis' of idiopathic pulmonary fibrosis or identify a different condition.
A 'confident diagnosis' means that your doctor thinks that it is highly likely that you have idiopathic pulmonary fibrosis. Your doctor should discuss the possible benefits of having a 'confident diagnosis' with you and how it could affect your future care. Your specialist doctor should first ask you questions to see if something else could be causing your symptoms. Your doctor will also want to know if you have any other symptoms and about the medicines you have taken. The doctor should look at the results of any recent chest X‑rays you have had.
Your specialist doctor will examine you and do tests called spirometry and gas transfer to see how well your lungs are working.
Your specialist doctor may also offer you a type of X‑ray known as a CT scan.
If you need more tests
For some people a 'confident diagnosis' can be made after their doctor has asked them questions and they have had a CT scan. If your specialist doctor can't say for certain that you have idiopathic pulmonary fibrosis based on the information they have, they may suggest further tests. Before you have any of these tests your doctor should discuss the risks and benefits of each of them with you (you may find the list of questions below helpful). They should bear in mind your general state of health and think about what other conditions could be causing your symptoms.
Further tests could include:
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Bronchoscopy – where a narrow, flexible tube containing a small video camera is put down the windpipe and used to look into the lung. During a bronchoscopy tiny pincers or a fine needle at the end of the tube might be used to remove a sample of tissue or the airways might be 'washed' to collect lung cells for examination.
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Lung biopsy – a short surgical procedure that involves removing a small piece of lung tissue, through a small cut in the side of the chest. It is more likely to give you a 'confident diagnosis' than the other tests but there are increased risks because a general anaesthetic is needed. Your healthcare team can explain more about the benefits and risks of lung biopsy.
Questions you might want to ask
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Can you tell me more about the tests you've offered me?
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What do these tests involve?
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What are the risks and benefits of these tests?
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Will I need an anaesthetic? If so, what type?
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Where will these be carried out? Will I need to have them in hospital?
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How long will I have to wait until I have these tests?
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How long will it take to get the results?
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How important is it to have a confident diagnosis?
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How will having a confident diagnosis affect me and my future care?