Diagnosing lung conditions with pulmonary fibrosis can take a long time (up to three years or more),¹ which can be very frustrating. Many people will have been given a lot of different tests before being diagnosed with a lung condition with pulmonary fibrosis. However, doctors are always looking for ways to shorten the time to diagnosis.

When looking for the correct diagnosis of a lung condition with pulmonary fibrosis, your treatment team will need to rule out some diseases. They will check for different symptoms, ask about your medical history and perform some tests to reach a final diagnosis. This is why you may have seen many different types of doctors and specialists before being diagnosed with a lung condition with pulmonary fibrosis.^2,3

Finding out if you could have pulmonary fibrosis

Preparing for your appointment

You may be feeling curious ahead of your upcoming appointment, or perhaps optimistic to learn about your diagnosis journey. Either way, we can all agree that there is a lot to take in during these appointments. It can be tricky to make sense of all the information and sometimes we only think of questions after the appointment. Remember, your medical team is there to give you lots of valuable information; they will want to work with you to support you in a way that suits you best.

Setting some time aside to prepare for your appointment can make a big difference to ensuring you feel confident, make notes, mention your concerns, and ask the questions you want.⁴

What your doctor might like to know about you

Having an idea of what your doctor might ask about your medical history can help you feel more prepared and less flustered at your appointment. Of course, each appointment will be different, but it is likely they would be interested to know:^5,6

Do you have a family history of interstitial lung disease?
Do you smoke or have you smoked in the past?
Have you been exposed to harmful substances at work, such as asbestos?
Have there been any changes to your symptoms/have you noticed anything new?
Do you have any other medical conditions?
If you are on any medications, how have you been getting on with these?

Ask questions

You may already have questions you want to ask your healthcare team, but if you're not sure where to start, the below might be helpful to take note of:⁷

About my symptoms:

What is pulmonary fibrosis and could I have it?
Could it be something else? How will we find out?
How can my current symptoms be treated while I wait for my diagnosis?
How long could my symptoms last?
How will my symptoms be monitored?
What should I do if my symptoms get worse?

About my diagnosis:

When will I have the tests? Are you referring me as urgent or non-urgent?
Why do I need this test?
What are the tests for and what will they involve?
How soon after the test will I get the result and who will give them to me?
What do my test results show and what do they mean?
What are we going to do next?
How close are we to finding a diagnosis?

About my well-being:

I’m struggling to cope with my condition. What support is available to me?
Are there any support groups you can direct me to?
What can I do to help my condition?
Who can I contact if I think of questions later? Can I see someone in person?

About day-to-day living:

How can I explain my condition to my employer?
What changes could I ask to make at my job?
Are there any activities I need to avoid?
Do I need to make any changes to my lifestyle?

Can you think of any other questions that you want to ask? Write these down ready for your appointment. You can also visit our page about questions to ask your doctor here to help you get the most out of your appointment.

Learn more about pulmonary fibrosis

Some people find it helpful to read around their symptoms and possible causes. If this is something you like to do, it’s important you find reputable sources so that you can be confident that the information is accurate. To get started, why not visit the page ‘Symptoms of pulmonary fibrosis’ – do any of your symptoms align with the listed symptoms?

Could it be something else?

There are a number of conditions that can co-exist with pulmonary fibrosis.^8,9 Many symptoms can seem general and can overlap with many other diseases.^1,10 This is why it’s important for the healthcare team to work closely with you to rule out other conditions and come to an accurate diagnosis as quickly as possible.

Learn more about conditions that could co-exist or are related to pulmonary fibrosis:

Hopefully, by now you should be feeling more prepared for your appointment. Here is a quick checklist to make sure have everything you need before you set off for your appointment:

Map and carparking directions or public transport details to your appointment
Pen and notebook to make notes during your consultation and plan your next appointment date
List of any questions or concerns

Your diagnosis journey might feel lonely at times, but there are people who are going through the same thing now or people who have gone through it and are now managing their condition. That means there are always people you can reach out to and share experiences, find reassurance, and make new friends.

Person with pulmonary fibrosis

“Join a support group, if somebody puts out a hand for help, somebody will always hold it”

QUICK TIP

Patient support groups can help connect people with pulmonary fibrosis to talk about their experiences of diagnosis. Speak to your treatment team about groups in your area

How is pulmonary fibrosis detected?

When detecting pulmonary fibrosis, your treatment team will look at many areas of your health. For example, they will ask you about your work history, family medical history, any potential drug and medication use and whether you have ever smoked.

Waiting for a diagnosis

It’s normal to experience a range of emotions such as impatience, frustration, anger, anxiety, and sadness during your diagnosis journey.¹¹ The longer you have to wait, the more you may have ups and downs.¹ Be aware of these reactions and how they might filter into your every day life. Be kind to yourself and see if you can find ways to ease your burden; finding a friendly and compassionate ear or joining a support group are good ways to share your concerns, or read up about your condition and become your best advocate for your care. If you don’t feel that your healthcare team are communicating well, don’t be afraid to speak up to keep your diagnosis going.¹¹

A physical examination is also used to give the doctor a better understanding of your lung health. However, other tests may be needed to make a clearer identification. Some of these investigative tests, if they are available, are shown below.

Tests that may be needed for your diagnosis and management^3,12,13

Blood test and other tests (e.g. urine sample)

These initial investigations can identify blood biomarkers associated with the suspected condition and can form part of a detailed clinical assessment.

Chest X-ray

This creates a picture of your lungs, revealing shadows that may show the scarring caused by pulmonary fibrosis.

Lung function test

Tests such as spirometry measure how much air you can blow out of your lungs after taking a deep breath.

HRCT (high-resolution computed tomography)

A type of X-ray that gives sharper and more detailed pictures than a standard chest X-ray.

Bronchoalveolar lavage

A small tube is inserted into the lung to take a fluid sample to be examined.

Lung biopsy

During a biopsy, a sample of lung tissue is taken and examined under a microscope

Skin test for tuberculosis

A small injection is given to check for tuberculosis (TB) infection.

Arterial blood gas test

Oxygen and carbon dioxide levels are measured in blood that has been taken from an artery using a needle.

Exercise testing

Will measure how well your lungs move oxygen and carbon dioxide in and out of your bloodstream when you are active.

Pulse oximetry

This test uses a small device clipped onto your finger that estimates how much oxygen is in your blood.

Antigen testing and antigen avoidance

Blood tests can help find out if you have developed antibodies to any substances that you may be breathing in and resulting in an allergic reaction.¹⁴
Avoiding suspected antigens (‘triggers’) of your symptoms can help support your diagnosis, alongside other tests.¹⁵

Getting the results of your tests

After you’ve had an investigative test, you will usually be given an appointment to come back and see your specialist, so that they can explain the results of your tests. They should use clear language to explain their findings, as well as give you enough time to ask questions, so don’t hesitate to ask for clearer explanations if you need to.¹⁶

Waiting for test results can be a difficult time. You can ask if a healthcare professional such as a clinical nurse specialist is available as a point of contact⁷ (although there is not always a specialist nurse for every situation). You can also bring a family member or friend with you when your diagnosis and treatment options are being discussed.¹⁶

Who is responsible for my care?

Throughout your diagnosis journey, in addition to your main doctor, you’ll likely come across several healthcare professionals who are specialists in their own field. They can be involved at various stages of you diagnosis and you may see them again depending on your treatment plan or if your condition needs to be monitored over time.¹³
These specialists can include:

Pulmonologists (doctors who focus on the lungs)
Rheumatologists (if your pulmonary fibrosis is associated with certain types of underlying disease)
Nurses
Psychiatrist
Occupational therapists
Radiologists, Nutritionists, Psychologists, Physiotherapists, and primary care physicians can also be part of your support

The treatment team will work together to look after different areas of your health. This approach makes sure you get the care you need and helps to develop a treatment plan specific to you.

A pulmonologist may request a range of tests to understand your disease and symptoms. These can include:^3,12,13

Lung function tests to measure how well your lungs are working
Exercise testing to measure how your lungs respond to physical activity
Pulse oximetry to measure how much oxygen is in your blood

You may also have X-rays or computed tomography (CT) scans to look at the physical structure of your lungs. A radiologist, a specialist in taking X-rays, will take the scan to help your treatment team manage your pulmonary fibrosis.

Once you have received a diagnosis, you might be referred to other healthcare professionals such as a specialist nurse, occupational therapist, or psychiatrist. They will all be part of your wider treatment team and support the development of different management strategies.

For example, the wider medical team may be able to help you adapt your home, or support you through some of the mental health challenges of living with pulmonary fibrosis.

QUICK TIP

If you have an appointment scheduled with a member of your treatment team, schedule enough time to get to your appointment early. You will feel less anxious if you don’t have to rush. Arrive 15 minutes early and use that time to read over any notes or questions you may have

Do you have a family member or friend who is available to keep you company at your appointment? They can help you get there and take notes while the doctor speaks to you⁴
Talk about what you want to say at your appointment with a loved one. You can treat it like a practice run and it could then feel more familiar on the day
If the medical specialist uses terms that you don’t understand, it’s no problem to ask for more explanation, or for them to write it/spell it for you. A diagnosis can get technical and specialised, so they are used to explaining what this means to patients⁴
It’s important to tell your doctor or nurse all the symptoms you have because even things you don't think are very important, might be big clues to help doctors with their diagnosis

Key takeaways

Diagnosis can take a long time as patients with pulmonary fibrosis may have symptoms that are common in many diseases

Communication is key – ask questions and keep updated on what the team is doing to diagnose your condition

A number of different tests are given to detect and manage pulmonary fibrosis

A team of specialists will be involved in detecting, monitoring, and treating pulmonary fibrosis

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Asthma + Lung UK. How is pulmonary fibrosis diagnosed? Available at: https://www.asthmaandlung.org.uk/conditions/pulmonary-fibrosis/how-pulmonary-fibrosis-diagnosed [Accessed June 2023].
American Lung Association. Hypersensitivity pneumonitis symptoms and diagnosis. Available at: https://www.lung.org/lung-health-diseases/lung-disease-lookup/hypersensitivity-pneumonitis/symptoms-diagnosis [Accessed June 2023]
Tsutsui T, Miyazaki Y, Okamoto T, et al. Antigen avoidance tests for diagnosis of chronic hypersensitivity pneumonitis. Respir Investig. 2015;53(5):217–224.
Hardavella G, Aamli-Gaagnat A, Frille A, et al. Top tips to deal with challenging situations: doctor–patient interactions. Breathe 2017;13:129–135.