Breathlessness and Cough Signal Pulmonary Fibrosis Years Before Diagnosis, Study Reports

Breathlessness and Cough Signal Pulmonary Fibrosis Years Before Diagnosis, Study Reports

Patients with idiopathic pulmonary fibrosis (IPF) are likely to experience symptoms for years before their diagnosis, a British study reports.

University of Nottingham researchers analyzed symptoms in the medical charts of newly diagnosed patients to reach their conclusion. Breathlessness was the most common symptom, the team found.

The research, Timing of onset of symptoms in people with idiopathic pulmonary fibrosis, was published in the journal Thorax.

A key underpinning of the study is that by the time a lot of people with IPF are diagnosed, the disease has already reached an advanced stage.

But asking people when they first started noticing symptoms is a poor way to get a handle on the disease’s emergence because human memory is unreliable.

Seeking an alternative approach, researchers identified 1,671 newly diagnosed IPF patients whose medical records stretched back at least five years. They also recruited 7,187 healthy controls for their study. Sixty-three percent of the IPF group was men.

The team tracked all doctor consultations that the patient and control groups had for breathlessness, cough, fatigue, and weight loss. They also noted which patients had consultations for chronic obstructive pulmonary disease (COPD) or heart failure — because IPF is often mistaken for these conditions.

One of the team’s findings was that IPF patients smoked more often than controls. They were also far more likely to seek medical attention for breathlessness. Forty-three percent had done so in the five years leading up to a diagnosis, compared with only 7 percent of controls.

The frequency of consultations for breathlessness was evenly spread out among the controls over the five study years. But IPF patients sought more help in the years leading up to a diagnosis, with visits skyrocketing in the last year.

Cough was another common cause of patients seeking medical attention, with 32 percent saying they had sough help for it

IPF patients were nearly three times more likely than controls to seek attention for breathlessness and twice as likely to seek a consultation for cough, even four to five years before a diagnosis. Fatigue and weight loss were also more common in patients than controls, as were diagnoses of COPD or heart failure.

Doctors have long asserted that early diagnosis of IPF can improve patients’ survival by allowing them to start treatment early. The British team said that if primary care physicians followed National Institute for Health and Care Excellence guidelines, and increased the use of chest X-rays in people with breathlessness and cough, earlier identification of IPF might be possible.


  1. Sandy says:

    My cough started in 2003 and kept trying to find out why. No answers even from a Pulmonologist as late as 2013 with a chest X-ray in hand. Diagnosed in 11/2015 when I couldn’t get out of a chair with my breathing at 82. Pulmonologist had to argue with hospital doctors because they said it was pneumonia. Need to alert all Pulmonologists on how to diagnose and get info out to public. Save some lives with an early diagnosis!

    • C. W. says:

      My father died of IPF in 2007. Starting in the late 2000s I always fought chronic coughs after having colds. Finally in 2013 I went in to my primary care physician. I told them about the family history and asked if it could be IPF. I was told I was too young for it. Over the next 2-3 years I continued to go in annually seeing if I could get relief for the chronic cough. They finally sent me for a PFT in October 2016 which started the ball rolling to my diagnosis of IPF two months later. The first thing they should have done in 2013 was send me for a PFT. BE PROACTIVE WITH YOUR HEALTHCARE. I’m still angry that I didn’t get this test sooner.

  2. Dr. Bashir says:

    I am feeling sorry for this delay in the diagnosis; and it will more helpful if you can till us what about the investigations that have been done through this period (2003-2013).
    There is another point in similar stories which can facing the pulmonologist ; the chest x-ray unlikely to be helpful in early stages, and how to make the patient easily convinced for CT-chest if the x-ray is normal.

  3. David Maddox says:

    I first noticed I was running out of breath in June of 2012 when I was playing 18 holes of golf with my cousins in Duluth on a fairly level course (Lester Park). I was walking and using a pull cart but had trouble keeping up and was running short of breath. Over the next 4 years I saw a cardiologist on 3 occasions and he ran the usual stress tests (I had trouble) and an angiogram (all tests actually looked good). Finally in May, 2016 I went back again–breathing getting worse. His PA said “maybe we should do a pulmonary function test”. Do you think??? That was arranged and my then new pulmonologist said my ability to exchange oxygen and lung capacity was 85% of what it should be. I was placed on omeprazole in case I was having reflux and did sleep study–now on CPAP. A subsequent CT can revealed IPF. In January, 2017 the lung function tests showed a decline to 65-70% of normal–not good. At that point I was placed on Esbriet. When I looked at the mechanism Esbriet might be working I made a decision, based on my work as a kidney physiologist, to add the blood pressure medication Losartan added to my daily pills. Losartan (and ACE inhibitors) help prevent fibrosis in several kidney diseases and from research in transgenic mice with IPF, might also assist in human IPF. So far so good, no changes in the severity of my IPF since January. Just a single patient in this study–me–but who knows? And what do I have to lose?

  4. John says:

    I have ipf i have a chronic cough if i get up and go to the toilet then i start coughing i am sore my ribs and back from coughing it’s depressing if i walk and start breathing heavy i cough uncontrollably can anyone tell me what I can do to help my coughing

  5. Sheila says:

    Just been diognosed with IPF. But for 18 months had a cough could heal. Had tests, but they didn’t give me the results until I had another test then to be told what was wrong. I have feelings of anger firstly as I felt I should have told 12 months or so ago. Then to find out it is terminal I can’t describe my feelings today, seems I’ve gone numb as it is frightening.

  6. Linda says:

    My husband and I found out in 2014, 5 weeks after he retired, that something was not good with him.
    The doctors had no idea what it was that he had.
    Unfortunately, I had JUST taken and passed a medical terminology class, so when he brought it to me I knew what it was that he had…. and I was the one who had to tell him.

    My husband has been coughing up blood here and there for a while now…. 💔😢

  7. J. Lyons says:

    I have had shortness of breath and an extremely annoying cough for at least 6 or 7 years now. A small spot was noticed on a chest xray roughly five years sgo but was dismissed 6 weeks later when a subsequent xray showed it hadn’t grown any.
    Now my brother is insisting I get tested for IPF because he was diagnosed with it last year and says my cough sounds like his did . Although I’ve heard its not genetic we have 4 paternal uncles and 2 paternal aunts who have passed away with IPF.

  8. Linda lu says:

    My mom was diagnosed with IPF in 2007, and had a transplant in 2009. She passed away almost 2 years ago. I have had a dry hacking cough for over a year now that at first I believed it to be my blood pressure med so I stopped it but the cough never went away and I’ve developed shortness of breath that keeps getting worse. I told my pulm. all of this and he gave me an inhaler, did pft’s in the office did the walking pulse oximetry, and sent me for cardiopulmonary pft’s, for which that Dr. simply said I need to lose weight! I was so upset I never went back to the original pulm. Dr. I’m not excessively overweight and get so tired of everything being blamed on that… My PCP said she will order a high resolution CT and hopes insurance will approve since she’s not the specialist, so she can a head start on this for me and refer me to a new specialist. I’m trying to be more proactive because I just want to know whats going on. Having an answer is better than not knowing.

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