So, I got the HRCT results back and no bronchiectasis - yey! But I got a really weird letter from the Consultant saying that the diagnosis is therefore chronic bronchitis, which she never mentioned in her chat with me.
I looked it up and chronic bronchitis is a form of COPD. Except... I only have one COPD symptom, which is a productive cough. Conversely, I have a whole bunch of uncontrolled asthma symptoms (variable breathlessness, waking at night, pf improving significantly after reliever inhaler, specific triggers...)
I'm also under 35 and have never smoked, which means that COPD shouldn't really have even been a consideration.
I checked all this on the British Thoracic Society pages and they say that a productive cough is "uncommon" with asthma, but doesn't "uncommon" in medical terms mean something like 1:100 or 1:1000, which surely makes it a possibility?!
I honestly feel like I'm shouting (I have used a ruder word!) into the wind on this. I've been trying to tell various healthcare professionals that my asthma is not well controlled and now they're just preferring to pick random diagnoses apparently out of thin air.
What do I do from here?!
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porthos06
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Hello there. I myself do not have COPD. I have a very rare lung disease caused by having several autoimmune disorders. So I am not really experienced but I will say this.
You don't have to be a smoker to have COPD. In fact you don't even have to have been around smokers or other irritants to develop it. In some cases people with smaller lungs have a lower breathing capacity and this ultimately increases their risk of developing COPD and people with a history of asthma are also more susceptible. Even if you have never touched a cigarette in your life or have any other risk factors. There is a common but misguided perception that everyone who has COPD are smokers.
As for the having only one symptom, if you have not had this disease for a long time it is unlikely you will have all the symptoms all at once. It is likely to you will develop them more as the disease progresses.
Having said all this, if you are unsure about your diagnosis, I would return to the doctor who diagnosed you and ask for clarity along with a long term plan to manage this disease. If you are unsatisfied, seek a second opinion.
In the meantime please know that with chronic lung disease it is advisable to keep as active as possible. The more deconditioned one is, the harder it is to stay on an even keel. Diet and exercise are key. Do keep coming here for support. It is so important to have a place to share and of course to support others. I hope you get answers very soon. Take care of yourself.
I absolutely understand what you're saying about the smoking. I've done so much reading over the past couple of days, I have come across the different reasons for COPD.
I think one of my main frustrations is that, according to the NICE guidelines, COPD should only be considered as a go-to diagnosis when people are over 35. The under-35 guideline is based on the fact that almost everyone who has COPD symptoms is over 40, although there are cases of younger people being (accurately!) diagnosed due to genetic conditions.
I haven't had any tests - apart from a clear chest x-ray and a clear HRCT - so I don't think another condition should have been diagnosed after one phone consultation, especially when all my symptoms can be explained by my asthma.
Just reading back my reply, I realise it sounds quite grumpy but that's just at the system not at you! I really appreciate your reply 🙂
Unfortunately quite often when your at that sort of level it's a case of ruling something out as opposed to diagnosing what it is... in 7 years I've had:
Asthma
Not asthma
Maybe asthma
Not asthma
Probably asthma
Cardiac asthma/heart failure
Anxiety
.... and in sure there where more but you get the gist
So I know your frustration...... but in the end of me going back and keep going back and being referred and re-reffered .. I ended up with the right team who looked at everything over the 7 years put the pieces together and then ran a few more tests to confirm what they thought
My advice would be: keep being a pain in the ass if you don't think there right, or ask plenty of questions
Oh, help! That sounds like you've had a nightmare of a time! I'm so pleased you found a team that understands you now 😀
I think one of the worst things for me is how often I've been trying to explain that it's asthma (which I've had for 31 years now!) and I cannot understand why just because bronchiectasis was ruled out, the consultant brought up another diagnosis without any real evidence.
Do you mind me asking, did you go back to your GP when you were misdiagnosed? Or did you go direct back to the consultant? My next appointment with the consultant is not until the end of July and I really feel like this is going to ruin my holiday if I don't get it sorted. I've drafted her a letter so might just send that?
Thanks so much for your reply - it's always good to know you're not alone!
I kept going back because they kept telling me that getting recurring chest infections "was just how it was" they weren't interested until I went in repeatedly and said I'm averaging every 2-3months there taking me longer to get over and getting harder to fight off
But I've had 2 negative challenges (methacoline and mannitol) and been told after that I don't have asthma, but the severe asthma clinic has told me that I do have asthma as despite being on high dose inhaled steroids my feno is still abnormally high and over the last 7 years all of the spirometry ive had done shows too large a variance for it not to be asthma
They also found I have large airway collapse which is rare but couple that with the fact they believe I have a mucus producing asthma subtype .... the two don't play well together ... but I've seen all the evidence and videos so I don't believe they are wrong
But I had one doctor who said my breathing problems where anxiety... so I asked her does anxiety cause recurrent chest infections? Would anxiety cause me to wake from a sleep unable to breathe? ... the answer to both of these I knew was "no"... she didn't appreciate it but I knew anxiety was just because it was an "easy solution" and I wasn't prepared to accept it.... as they say you are your own best advocate and if you don't fight for answers you will definitely get fobbed off
Yeah a nightmare is one word for it.... I joke with people that I've been to most hospitals in the northwest for at least one respiratory test .... realistically I've probably been there twice for the same tests
But I've had 4 respiratory referrals..... the first one ran loads of tests and discharged me to my gp with the recommendation of an inhaler (fair enough i hadn't used one for 7 years) ......but I remember when the respiratory nurse wanted me to do spirometry she kept telling me I wasn't doing it right, my technique was off at the end ... turns out this was actually the airway collapse and the woman just didn't know what she was looking at.... though my gp, a number or respiratory nurses and a number of hospitals have all ran the same tests .... all of them didn't spot the same thing (a massive dip at the end of my spirometry which apparently is the airway collapsing and then being forced open by the build up of air in it)
The second had me on a treadmill hooked up to all kinds and all it showed was "I had signs of deconditioning" (I'm not as fit as I used to be in a nutshell) .... and so many other tests but couldn't find anything (I feel for him because he really did try)
if you do send the send the letter, please remember that sometimes the letters are wrong, they can get muddled. The recent letter from my consultant to the GP listed lots of the wrong medications. But as the ones I am currently on are prescribed by him, I can only think it was an admin mistake. If you write, remember to also send your letter to your GP practice too, if you have a good relationship with them. Mucus can get trapped in the lungs for all sorts of reasons, and lots of people with Asthma have bad mucus because of inflamed airways. I don't get tons, but I get plugs of it, and a deep wheeze. I now get respiratory physio and we have done a lot of work on Mucus clearing techniques. Bad mucus and Chronic Bronchitis can occur with asthma. Try and get to see a respiratory physio. But there are some great mucus clearing techniques available on YouTube. Above all don't panic. Enjoy your Holiday, even if you don't sort everthing out, sometimes diagnosis takes a long time, and there are some kooky lung conditions out there.
I've checked my letter and it was just too grumpy to send! Fortunately I got my follow-up appointment with the consultant, so I think I might just spring it on her there. I really don't think it is Chronic Bronchitis because that's a progressive illness, which doesn't fit with the fact that - while I avoid my asthma triggers - my breathing is better than it ever has been. The problem is that I'm finding it harder to avoid my main trigger (viral infections) since lockdown finished.
Thanks for your lovely message - I hope you have a great summer too!
I have a productive cough with my asthma. It's dry and uncontrollable, then the mucus starts. I wonder if the mucus is a response to the coughing rather than a sympton of the asthma per se.
Mucus is a bi-product of airway inflammation and irritation .... the body tries to remove the mucus by coughing it out of the way (coughing it up)
However I remember when "a cough" wasn't a symptom of asthma..or so I was told by my GP... thank god we are Learning all the time and things evolve and its now recognised that "a cough" is a symptom of asthma
Just sharing incase you find my experience helpful.
Around 6 or 7 years ago I had a very productive cough and it dragged on for at least 18 months - I don't usually have a productive cough with my asthma. It felt like bronchitis but I didn't have a chest infection. I was miserable and fortunately my hospital team rang me to invite me onto a research project for non-eosinophilic asthma. The nurse I spoke to said that they would get to the bottom of my 18 months of misery.After a range of tests over several weeks, the research nurse recommended Azithromycin and the consultant agreed. They had labelled my current ongoing flare up as difficult to treat asthma. Even though Azithromycin is a macrolide antibiotic it acts as an anti-inflammatory and it was on that basis that they prescribed it for me. It really did the trick and got me back on track.
The consultant explained that some asthmatics have periods of difficult to treat asthma and Azithromycin was a novel treatment that consultants could use to treat the condition.
Even though my notes highlight my consultant's guide to my GP to prescribe Azithromycin, if needed during the winter, it's impossible to get a prescription without the GP talking to the consultant. This past winter a GP wouldn't prescribe it despite reading the consultant's letter as it was an antibiotic and wanted to send me for a chest x-ray rather than talk to the consultant (I had explained the anti-inflammatory properties of AZ but that was a mistake). So I was given Doxycycline (antibiotic) even though the doctor didn't think it was a chest infection.
Anyway, labelling can be a frustrating experience and doesn't necessarily lead to the right treatment. I now know that even my asthma nurse, who has asthma, has also had periods of ineffective treatment because of labelling. Not saying it's not important to know one's phenotype, but we know we can be unicorns or have periods of being a unicorn - just difficult to treat.
Thanks - this is very helpful! That is the same for me - my productive cough started two years ago when (coincidentally?!) my asthma nurse took me off the seretide I had been on for years. I've never mentioned this correlation in black and white but maybe I should!
I'm on azythromycin for its anti-inflamatory properties as well as the fact it's an antibiotic and I do keep getting chest infections
However I narrowly missed out on joining a research group that was using doxycycline in the same way as azythromycin..... as apparently its showed some evidence of working in the same way (reducing inflammation as well as reducing the number of infections)
Brilliant replies above.There is a genetic deficiency called Alpha-1 Deficiency, I believe its hereditary, with it it predisposes one to have copd. A simple blood test will show if you have or have not this deficiency, it would be worth asking for it. Have you had full lung function tests and did you have a spirometry test?
I have genuinely had no tests (apart from the clear x-ray and clear HRCT) since I was a teenager. This is one of the main reasons I don't accept what seems to be a random diagnosis!
I'd come across the Alpha-1 Deficiency in my research - I don't think I'd have it as the only person in my entire extended family who has COPD is a cousin who is much older than me.
I would still request the test for it, it could explain the copd diagnosis. Xray do often show nothing. I can't tell you how many I had that were 'clear' when in actual fact there was lung damage on the CT - when I finally got one.
Oh, that's not good!Well, my CT was clear as well as the x-ray - as far as I can tell, this diagnosis has been made simply on the basis of an ongoing productive cough.
Yes it looks like asthma by the symptoms m. I know how it feels when you are misdiagnosed. My digger when she’s an attack she coughs it’s kind of dry by the sound but she throws so much phlegm with it and with uncontrolled asthma she’s been vomiting toi sometime nothing stays in when she’s having a very bad day but she uses a lot of reliever daily. If you are needing reliever alot then most likely it’s uncontrolled asthma.
I would start by sending an email to consultant secretary for the explanation of diagnosis. Surely you know your body better and you are already doing your own research which is very good as we have been through bad experience with consultants misdiagnosis and then they keep it when you raise voice or complaint.
Your best bet is to ask all the questions in an email and if you don’t receive satisfactory reply then seek other options Of second opinion.
Unfortunately I can't email the consultant secretary because I have no address. I did get my next appointment through though, so I think I'm just going to wait for that.
Yes, your daughter's asthma sounds like mine. I was diagnosed as a two-year-old but the productive cough only started when my inhaler was switched from seretide (first to fostair, then relvar, then symbicort) two years ago.
I’m a bit late to the party, but I just wanted to add in that I was also changed away from seretide almost two years ago. I also got a productive cough, which lead on to several bad attacks, etc. After about 6 months, I was so fed up of waking up at night, and continuously coughing up phlegm, that I begged to be put back on Seretide. My pulmonologist wanted to do a CT scan of me as well, but I was pregnant at the time. I was put back on Seretide, and my cough and all the attacks went away. Have you tried going back on seretide?
Also, productive cough is definitely an asthma symptom.
The diagnosis may be correct as chronic bronchitis is its own diagnosis. But i totally understand why it's weird when they've never mentioned it. Is there a way for you to have a chat with them? I normally call my consultants secretary if I'm unsure of anything in the letter and they find things out for me. Hope you get to the bottom of it.
Thanks. It was just so random - as though the only thing it could *possibly* be after bronchiectasis was ruled out is chronic bronchitis, despite my having been referred for looking at a severe asthma diagnosis.
I also don't think the progressive/reversible difference between chronic bronchitis and asthma fits with my history, which has my breathing at the best it's ever been when I'm successfully avoiding my triggers. The problem is that I'm finding it harder to avoid my triggers and, when I do get attacks, they're getting more severe.
I am genuinely concerned that this random diagnosis will make it harder for me to actually get my asthma looked at thoroughly.
If you're referred to the severe asthma clinic then they will definitely get the diagnosis right. I still think call the secretary and tell them all these worries and request an appointment. I really get it from your point of view because there's nothing worse than feeling like this. It's so hard to advocate for oneself. I had to push for a year to get a referral to the severe asthma clinic and now I'm waiting on biologic treatments. It's hard but doable.
I have suffered with asthma most of my life. It has become more severe in adulthood.
I was often asked if I smoked etc etc as my symptoms very similar to COPD and emphysema. I have never smoked.
Eventually back in 2000, at NWLC, Wythenshawe Hospital Manchester I was diagnosed with ABPA.
Twenty years on I have deteriorated, but maybe not as quickly as I would if I hadn’t had the diagnosis! Steroids are best avoided if possible. My bones & joints have really suffered as a result. However, if it’s a matter of life or death, yoogoing to take them! I’m on a maintenance dose of 12.5mg Pred a day. Trying to reduce it.
Have had Xolair jabs for last few years but plateauing so now trying Fasenra.
Any more on you diagnosis of chronic bronchitis. How has your mucus production been?
I have definitive CB and it’s truely horrible sometimes, and annoying all the time. In this instance I only have myself to blame for smoking. I’m relatively young (39) so dreading the future!
Hello! Thanks for asking I spoke to a different consultant about it (mine was on sick leave) and he seemed happy to put a pause on that diagnosis and just look at it as atypical asthma for the time being. I've had some physio now and trying to keep up with the chest clearance techniques as much as possible. I'd say it mostly makes quite a difference but I still ended up on repeated antibiotics during autumn.
Oh, I feel for you - it doesn't help anything to point the finger. I know COPD is progressive but if you get on top of it with lifestyle and physio, I think you can really slow down that progression. Fingers crossed that is the case for you!
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I spoke to a different consultant about it (mine was on sick leave) and he seemed happy to put a pause on that diagnosis and just look at it as atypical asthma for the time being. I've had some physio now and trying to keep up with the chest clearance techniques as much as possible. I'd say it mostly makes quite a difference but I still ended up on repeated antibiotics during autumn.
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