Undiagnosed Chronic Cough for Years, A Patient’s Story and Doctors Approach to Chronic Cough

Closeup portrait, old gentleman in white shirt with towel, coughing and holding stomach, isolated green trees and shrubs, outside outdoors background

Chronic cough is a vastly misunderstood and misdiagnosed chronic lung condition (Chronic Cough | Resources – Chronic Obstructive Pulmonary Disease (chroniclungdiseases.com)). Many sufferers go to the doctor with chronic cough and are misdiagnosed with asthma, reflux or other lung infections/conditions. They are given inhalers and medications that are completely ineffective at treating their chronic cough. Making the right diagnosis requires ruling out confounding factors and raising awareness among health care professionals.

The following blog will introduce you to Sara, a respiratory therapist who was working in the asthma field while suffering from undiagnosed chronic cough herself for years. Dr. Alan Kaplan, a family physician working in the York region of Ontario, Canada and the chairperson of the Family Physician Airways Group of Canada will be discussing the current approach to chronic cough and commenting on Sara’s case.

Prefer to watch Sara telling her story? Here’s the video version of our Podcast: The Successful Chronic Cough Journey.

Sara’s Journey: Chronic Cough for Years

First and foremost, Sara shared her story with us. Here’s her testimony:

“As a very young girl, I was repeatedly having a breathing issue of some sort, so whether it was bronchitis, whooping cough or a chest infection, I always had something. Back then, there were no nebulizers at home so I would have to go repeatedly up to the local hospital for nebulized treatments and chest physio.

At some point during that time frame, they diagnosed me with asthma. Just to be clear, there was no formal testing done.  I spent about 30 years being treated with corticosteroids and salbutamol. I am currently still taking those medications along with Tecta because they thought I might have GERD (gastroesophageal reflux disease), so we tried that. Then there’s Hydrochlorothiazide because I have a blood pressure issue, but nothing major. I also take Levothyroxine (thyroid medication) and Lyrica to help stop the cough when I sleep.

Essentially, I’ve been presenting with some form of acute chest infection for the last 30 years.  In the last 15 years, the cough has gotten progressively worse. My occupation has been a respiratory therapist, I’ve worked in home care for almost 25 years.

One day a respirologist I was working with in a spirometry clinic heard me coughing. After I finished coughing and was coming out of the bathroom crying with a red face, he asked me what had happened. I said that’s just me, that’s my chronic cough, I’ve had it for years, blah blah blah…

He decided at that point that no, that’s not normal and ordered a formal spirometry. After that, we did methacholine challenge and lo and behold, I don’t have asthma!”

The wrong approach to chronic cough: a confusing diagnosis

“As I mentioned, I was diagnosed as having asthma when I was younger. It wasn’t asthma, as we found out later. The doctor then sent me to do allergy testing and immunotherapy testing.  As it turns out, I do have allergies to cat dander and elm tree pollen.

We don’t have any elm trees around us, so that’s not the issue for me. I don’t have heartburn or indigestion. We did an ENT (ear, nose and throat) consult and there were no polyps, it was clear. 

Sara’s Cough Triggers

“Changes in temperature is one of my triggers, as is strong smells and specific smells. For example, vanilla. The smell of vanilla makes me go into a chronic coughing fit and it’s a very common smell. Stress can also make it worse. As far as major complications, I don’t have any.”

Elderly stylish attractive blond woman coughing or sneezing into her hand as she stands on a rural lane on a misty winter day

Environment

“I am a non-smoker; I have never smoked. I don’t have hemoptysis (coughing up blood) or fevers and as far as weight loss, I don’t have any major weight loss. Our house is completely carpet-free, we have hardwood or ceramic tile. We’ve even changed our heating system. Our heating is a heat and moisture, or a heat exchange, so there’s no dry heat or wood heat that can cause the issue.  I don’t wheeze unless I get a coughing fit.”

Exercising with chronic cough for years

“I do exercise typically five days a week either doing three to five kilometers running or biking and I do not wheeze with cardiovascular exercise. I also do strength training; I don’t wheeze either. I have not been hospitalized. I don’t wake up anymore at night because of my Lyrica, that does seem to help.”

How the cough starts

“It generally starts as a bit of a tickle and then I can feel it coming on.  It gets to the point where I feel like there’s something in my throat. I will then clear my throat until it comes up. It’s usually clear sticky white mucus.”

Daily chronic cough

“Maybe as a young child I would have periods of time without a cough, but in the last 15 years it’s pretty much daily that I have a chronic cough attack.”

Chronic Cough effects at work

“It does affect my daily life because we (respiratory therapists) do a lot of teaching in home care and I can get into a coughing fit. With COVID right now, people look at you like you are contagious.   It’s one of those things I deal with every single day. If I use an MDI (metered dose inhaler), I’m typically fine but if I use a dry powder inhaler, I’m in trouble.    

(Dr. Kaplan comments as per guidelines that if you don’t have asthma the use of the medications will not work anyways).So, I don’t take those (dry powder inhalers) anymore, I haven’t for years but the cough continues.”

The Physical and Social Effects on Sara

“It gets to the point where I cough and cough and then I have major rib pain. I should have a six pack by now (I don’t) from all that coughing as I am really working those muscles! I tend to avoid going into quiet places. Church is interesting, especially with our masks. The mask typically makes me cough.

As far as doing any public speaking, I do a lot of teaching of CPR and a lot of presentations to our patients as well as my peers. It’s very hard because I cough. Luckily most of them know me well enough by now. I usually start my presentation by saying that if I start to cough, just give me five minutes, I’ll be back taking a break. I’ve come to work around it because I don’t have a choice.”    

Medical approach to Chronic Cough: Dr. Alan Kaplan’s comments

In the next part of this blog, we will hear from Dr. Alan Kaplan. Dr Kaplan co-chaired the community standards of COPD program for health quality Ontario and currently still provides his expertise to several medical journals across the world. He discusses Sara’s case as well as testing, the role of family doctors in diagnosing chronic cough and the misdiagnosis of chronic cough as asthma or other lung conditions.

Dr. Kaplan says that what you’re witnessing from Sara’s journey is the frustrations of people living with chronic cough for years. “You can hold it (the cough) back for so long, but eventually you just can’t. It’s a disease process and you can’t always stop it. When the tickle in Sara’s throat starts and progresses to a coughing fit, as much as she wants to be talking to you, she can’t.  This is affecting her daily life.”

Testing needed to diagnose Chronic Cough

The steps needed to diagnose chronic cough usually include:

  1. Breathing tests
  2. Blood tests
  3. Chest X-rays
  4. CT scan

1. Breathing Tests

“After hearing about Sara’s case, what do you want to do next as a clinician? You know we’ve done spirometry testing already which came back normal according to Sara. But of course, the issue with spirometry is if it was done on a day she’d just taken her medication it may not be all that helpful.    

Let us assume correctly that there was no reversibility, so we’ve ruled out asthma. We’ve done a methacholine challenge already and that came back negative. FENO (fractional exhaled nitrous oxide) testing is something that you’re going to hear more and more about in the future.  It’s a small device that you blow into and it gives you a measurement of fractionated cell nitric oxide, which is a surrogate measurement of the eosinophilic inflammation in the lung.    

FENO is very useful in diagnosing asthma (based on the amount of eosinophilic inflammation in the lung). There are some rules about FENO, but it’s actually a very simple test that is not covered in very many places. I’ve just got a machine for my office. But again, in Sara’s case we have already ruled out asthma based on her spirometry. FENO will not tell us very much.”

2. Blood tests

“What about just doing a blood count? Is there anything we are going to learn from a blood count?

When doing a CBC (complete blood count) you’re going to hear more and more about blood eosinophils. Blood eosinophils can give you a good hint about eosinophilic airway disease and certainly in asthmatics is a good marker for the risk of exacerbation.

In COPD (COPD | Resources – Chronic Obstructive Pulmonary Disease (chroniclungdiseases.com) it’s a good marker for the need of inhaled steroids, so that can sometimes be helpful in that case.  When looking for that blood eosinophil count, it is down at the bottom of your CBC. You look down there and it’ll say 0.3 and that’ll be 300 eosinophils, which is considered significant.

Sara did a lot of blood work. Virtually all the immunoglobulins. She does have an IgG-1 deficiency, a very mild one but other than, they didn’t learn a lot from her blood tests.”

3. Chest X-rays

“Someone living with a chronic cough for years needs a chest x-ray.  Don’t skip that step, don’t ever skip that step. It’ll come back and bite you. I was just at a program created by some of my colleagues in the UK where they talked about non-smokers with lung cancer and it does happen, so we have to be concerned. You don’t want to miss lung cancer.

You would feel terrible if you didn’t do that chest x-ray and miss a big proximal lung cancer because you said to yourself, “well she’s too young, couldn’t possibly be her.” But we see people in their 30s having lung cancer, so please don’t miss that.    

Of course, there are all kinds of other things you can see on x-ray as well. Bottom line: a chest x-ray is important. Sara says that she did not have a chest x-ray done, they went straight to the CT scan.

4. CT scan

“They did a CT scan on Sara to rule out bronchiectasis, which is a really good thought for someone who has recurrent productive sputum and infections. Of course, if you’ve got bronchiectasis then you must explain why you have bronchiectasis. Immunoglobulins are very important.    

Sara had recurrent chest infections. If you don’t think about the fact that there may be an immunologic deficiency causing those infections, you’ll never make the diagnosis of bronchiectasis.

Obviously, she has a mild deficiency, but a more significant deficiency would potentially need immunoglobulin replacement therapy. This can then make a huge difference to the rest of her life.

Interested in Chronic Cough?

Join our community and receive regular updates on the latest research, treatments, and management strategies.

By subscribing, I hereby agree and consent to the Terms of Use and the Privacy Policy and accept to be contacted via email by Respiplus.You can unsubscribe from the mailing list or change your preferences at any point.

The Role of Family Doctors in Diagnosing Chronic Cough

Each one of the steps listed above is quite important, according to Dr. Kaplan. “Every family doctor can diagnose chronic coughs. The thing you must understand is that this is complicated and you’re often going to have to send people to a variety of specialists and tests.

Part of our job as primary care doctors is going to be coordinating that. It is making sure the person doesn’t get lost. Often, you will be sending your patient to more than one specialist at the same time. It is not usually how we do things, but you must rule out one thing or another, so we can get people onto the proper treatment.

The misunderstanding between Asthma and Chronic Cough

“So, you have a patient in front of you saying they have asthma, and you treat the asthma. If it doesn’t work, it’s not asthma. The first step of course is to make a proper diagnosis of asthma. As you heard Sara say, she never actually had spirometry done in all those years. It wasn’t because she was born before the advent of spirometry, it’s because nobody ever actually did it.

We really must think about that. We know for example from studies like Dr. Sean Aaron’s that when you take a group of people from the community who were told they have asthma, at least one third of them did not have asthma at all when properly examined.  Some of them had other conditions.

The number one predictor of them not having asthma was never having a proper diagnostic test. I know it’s hard to get spirometry now, I know COVID makes it complicated, but remember we do have to make a firm diagnosis. Cough variant asthma, we use that word all the time. I don’t really like it very much because I don’t think it’s very specific.

Again, yes, we see people who cough and do respond to asthma medication. If the spirometry tells you they have asthma, then that’s fine. Otherwise, they don’t have cough variant asthma. A firm diagnosis is everything we want to make here. We need to make that diagnosis because it can save people many years.

If you made a diagnosis of asthma and you’re given treatment and it didn’t work, then you’ve got to do something else. If you made a diagnosis of GERD and you gave a couple months trial PPI (proton pump inhibitors) and it didn’t work, you must try something else.

You cannot lose these people down that endless loop of just waiting, waiting and waiting. Then the patients come back and say“Well you didn’t call me back, so I guess it’s not a big deal”. It is a big deal for them. We still have to have our eye on the prize at the end of the day, ask ourselves, is this person getting better and what have I actually diagnosed here?

Sara is being treated right now and is looking forward to trying some new treatments down the road.  I just wanted to point out the fact that this is some of what patients like Sara, living with chronic cough for years, suffer with.”

If you enjoyed this story we invite you to subscribe to our newsletter to receive the latest information regarding chronic cough and other lung conditions.

Also, this content is part of our Chronic Cough series: the Successful Journey of Chronic Cough.

A podcast intended to bring you closer to experts in the respiratory field who will be discussing the best practices with a focus of improving the lives of people living with a chronic lung condition.

katrina-metz

About the author

Katrina Metz is currently working as a consultant for RESPIPLUS, striving to improve education in the respiratory domain for healthcare professionals and patients alike. She has over 16 years experience working as a respiratory therapist and clinical research coordinator for the Research Institute of the McGill University Health Center.

Katrina Metz

RRT