I finally had my appointment with the Respiratory Consultant yesterday and it was certainly an eye opener.
Apparently I have adult onset asthma and not COPD. She said that she can't rule out 'a touch' of COPD as I used to smoke years ago but all my test results show that I now have asthma.
She has changed my inhaler from Trimbow to Fostair 200/6 and she says that should help me far more so fingers crossed.
I can't help but wonder... I've had 3 lung function tests at my GP surgery (including a reversability one this year) since 2018 and each time, I have been told that I've got COPD yet the much more in depth lung function test that I had at the hospital shows asthma. It makes me wonder about the level of clinical experience at the GPs as each test that I had was very rushed. It's almost as if they decide in advance that it's COPD because I used to smoke but not all smokers go on to get COPD.
Anyway, that's my news and I now have to research asthma as I only know about COPD!
Take care my fellow huffers and puffers.
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Coughingalltheway
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At my PR classes they state that 80% of smokers will get COPD but American studies show that it's probably only 20%. The respiatory physio wouldn't listen to me when I pointed that out. I can't help but wonder how many other people are being misdiagnosed as having COPD just because they smoked during the past? If I hadn't collasped with respiratory failure, I'd still be none the wiser.
My understanding has always been that 80% of smokers DON'T get COPD! We are in the very unlucky 20% who do! Of course, some smokers will be more at risk of ending up with other complications such as heart problems etc even if they avoid COPD. I have the same level of poor lung function (46%) as my sister yet she only smoked lightly for a very small number of years compared to my 30 years plus before I managed to kick the habit. Both parents died with COPD listed as a contributory factor.
Both my parents smoked too but they died because of unrelated diseases. My elder brother smoked for years before finally giving up but he hasn't got COPD.
My mother had Bronch and sometimes one nurse would say you have COPD too but we just uses it as a blanket term. She would reject that opinion as her main condition was Bronch quite severe and also asthma. Never smoked and stuck to her guns. I agree as a Bronch also and not once have I been told or written that its COPD. xx
Yes, I don't really agree with the blanket term of COPD, there are so many different diseases that need various different treatments plus in people's eyes COPD equals smoker which isn't always true.
So pleased that its sorted out for you, not very good being treated for one condition when it's another, I would have been furious but wish you all the best 🤗
Thank you. Funnily enough, it never felt like COPD as I didn't have any of the symptoms such as a cough or phlegm but I'm just glad that I've finally g ot an answer xx
Try not to be too hard on your GP. Lung doseases include everything from bronchiectasis, asthma, COPD, collapsed lung, pleurisy and no doubt others that I have forgotten. Your lungs really do need a specialist to fully understand what is going on. Here in France it took my wife many years to find one who siad you have bronchiectais and not asthma. Take care, have a good Sunday, I`ll start packing my bags as we`re visiting UK for 2 weeks. An annual trip to see family and some long time friends, Chris.
The problem with the NHS is that unless you get seriously ill, you'll never get to see a specialist. I think that the French system is a lot better for that sort of thing.
Enjoy your visit.
PS sorry about the weather over here. It was actually sunny a couple of days ago!
I was treated for asthma for 20+ years as I had bad chest infections and wheezed! Had a CT scan of my chest for another reason an low and behold, I was given a diagnosis of bronchiectasisas the scan showed the pockets. So for 4+ years I have been off my inhalers and on azithromycin mon/wed/fri and so far have had no more chest infections!
Well that great news about not getting anymore chest infections but as I said to someone else, I don't think that GPs should be diagnosing lung conditions, it should be an expert in that field. Glad that you're feeling so much better now though xx
It was a "consultant" who 1st diagnosed me. Gave me a stron steroid inhaler and said if my cough went in 2 weeks it was asthma. He discharged me following my 1st visit!!!!
Oh dear! Unfortunately, there will still be the odd bad apple, even at the top of the tree. My consultant said that she'll see me once more in 12 months time and then she'll dischange me too. If I'm not better by then, I'm telling her that she isn't!
When I was very ill, so even my useless surgery had to acknowledge that there was something wrong, the senior GP greeted me with 'You're a smoker, aren't you.' I just managed to croak out 'No'. They really want to diagnose everyone with COPD because it's the only disease they know anything about. They did eventually refer me to a consultant, so 6 months later I got a proper diagnosis. I find even pulmonary people are wary about talking about bronchiectasis, because they know so little about it. I hope you will have a better quality of life now you know what you've really got. xxx
Thank you for your kind words and I agree about the automatic diagnosis of COPD rather than anything else. I hadn't even heard of adult onset asthma before I got ill so I'm guessing that it's not on GP's radar either. I'm pleased that your finally got a referral but people shouldn't have to fight for it! Take care xxx
Hi, First let me say I'm sorry for the confusion of your diagnosis for all this time and left you understandably bewildered i very much agree with you when it comes to the professionals as I am so disappointed with the constant cancellation of appointments and the changes seeing different doctors, I feel one consultant is great and happy they are supposed to be dealing with me I expect to see or speak to them at my next appointment but it's always someone different. I couldn't wait for my last appointment as I have been feeling so much worse to turning up to a doctor I've never dealt with before and came away thinking what was the point in that. I felt they did not listen to me or possibly not believing me I don't know which. I really appreciate the nhs is overwhelmined and we are lucky to have it but for me it's no help. I just hope it's not the same everyone and your all being supported as you deserve. Sorry to moan.
I don't blame you at all for moaning, I've done my fair share of ranting as well. To be fair, my GP is good but I only got an appointment with a respiratory consultant because I ended up in hospital with respiratory failure otherwise I think that I would still be using inhalers that do nothing for me. My theory is that they don't want me being blue lighted back to their A&E so best to see what's actually wrong with me. Cynical, I know but that's the way that I feel. I do hope that you get some answers and support soon.
I was treated for years as having asthma and constantly told my gp that the inhalers made me worse, she was adamant that it was asthma and i knew it wasn't. When she retired and we got a new gp she sent me to the local mobile lung check ups and they did a ct scan which showed up bronchiectasis, what a relief it was to have a correct diagnosis. Sadly getting a consultant who knew how to treat this was just as hard. I have found a consultant that treats bronch and after having loads of tests she diagnosed that I developed overlap asthma. I can't find an inhaler that is suitable. Fostair nexthaler was brilliant at first but I developed a cough which I can't get rid of. I think lung health is a neglected area of health and is only just catching up x
I must admit that I don't know much about bronchiectasis but I do know that it is rare. Thank goodness your old GP retired! I've been prescribed Fostair too so I'm hoping that will change things for me. Is a cough one of the side effects or is it that your condition is worsening? xx
I think the cough is down to the inhaler not being suitable for me, but have been here before and it takes time to find one that works for me. I don't really think an inhaler is good for bronchiectasis but trying to help the asthma x
Hi I’ve had Asthma since childhood but several years ago at my annual Asthma review at the GP’s surgery the nurse said your notes say Asthma but I’m sorry to say you have COPD. I think she changed my inhaler but I never saw a GP I was just told by the nurse. The following year a different nurse said I see you have COPD but all I can see is Asthma so diagnosis was changed back again 🤷🏻♀️ I asked the GP to alter my notes as my travel insurance asks have you ever been diagnosed with COPD?
Although you can have similar outcomes with both diseases, I think that travel insurance views COPD as degenerative so possibly charges you more? You are right to get it changed as they look for any excuse not to pay out! I personally don't rate the standard spirometry tests that you get from a nurse at the GP surgery. I find that they are usually rushed and basically, a tick box exercise. My lung function test at the hospital was so much more in depth. xx
Thanks. I agree with you on both counts. Definitely a tick box exercise. £10 I was told 🤷🏻♀️. They couldn’t actually change it on my record but added an update to say that it wasn’t the case.
I'm also not surprised that they couldn't change your record, I've had muscular dystrophy on my health records for years and I keep telling everyone who queries it to take it off but that never happens. The scary thing is, some admin clerk has typed that in under my name and someone else who's actually been diagnosed with that didn't get it recorded!
GP's are "Jack of all trades, and masters of none". I have COPD, and my GP initially said it was asthma, and I was treated as such. When it was decided I had COPD, it was called COPA. Can't remember what the A stood for. I believe the knowledge around lung problems was rather sketchy even 20 years ago, and things have progressed phenonomenally since then. I wonder if GP surgeries should be set up such that each doctor has there own forte. Gynacology, heart, lungs, digestive tract, head. Don't know if that's workable?
I think that is a very good idea! It would certainly reduce the pressure on hospitals as there woulldn't be so many wasted referrals. Why not write to Wes Streeting, he's looking for ways to improve the NHS. xx
well the problem with that is the body doesnt work in isolated sections! so a specialist in lungs might not realise that the issue started elsewhere in the body. Reductionist thinking is one of the big problems in conventional medicine and we need to see the bigger picture of the body
So hard to get a correct diagnosis with anything lung related. Think professionals are slowly learning about it. I coughed for years without any diagnosis at all. Also I think lung problems seem to be way down the list for funding. Take care xxx
Funnily enough, my dad had a cough for years and years. I'm going back a long way now but they couldn't find out what was causing it. He had a sneaky feeling that he might have been allergic to beer but he never told the doctors that! I hope that you get an answer for you cough soon.
Not funny your dad having an undiagnosed cough but funny about the beer story😅. I was diagnosed eventually a few years ago. I have Bronchiectasis, recurring Aspergillosis & Asthma ( as well as other non-lung related conditions). xxx
I probably should have written curiously rather than funnily on reflection... I'm sorry to hear that you've got so many lung issues as well as other health conditions. It must be very hard on you. xxx
Didn't mean to say you shouldn't have put funnily❤️ was just making sure you didn't think I was saying your dads condition was funny but his thinking about beer allergy was😊xxx
It is good to read that you have some progress with a firmer diagnosis of your possible lung condition. You have a start point to work on now ?
Rarely is any health condition a discreet entity and lung conditions are not different. COPD is an umbrella term for two main features which are Emphysema and Chronic Bronchitis. the former is progressive destruction of the alveoli -air sacs and the second is inflammation of the airways. Neither of these show irreversibility with medication and are subject to various influences from various physiological phenotypes and individual pathology. COPD is often confirmed by CT scan though that happens less often now post pandemic.
Asthma shows some reversibility with medication. Again it is subject to individual physiology and pathology. The degree of Asthma which people suffer can be from mild to very severe.
There can be some overlap with COPD and Asthma ( which I have ) Smoking cigarettes is definitely a leading cause of COPD and some people say as high as 90% causation although you acknowledge that not all smokers will have COPD.
Thank you Pauline, I think that the reason the GP thought that it was COPD was that they only looked at my spirometry test, nothing else. My eosinophil count was over a thousand when I was taken into hospital and even after treatment, it still hovers around the 500 mark. My Feno result was 70 which is another indicator as it should be 20 or lower.
I've read that the menopause can trigger adult onset asthma and looking back over my GP notes, I saw a doctor a few times over feeling breathless but I thought that it was because I was a little bit overweight by then. I wasn't actually diagnosed with COPD until 2018, several years after that. I think that the definitive answer will lie in whether Fostair gives me a significant improvement in my breathing.
Women think that the menopause is all about hot flushes and brain fog but I think that it may have other effects as well...
Yes, spirometry is currently the accepted test for diagnosing COPD in Primary Care which often feels insufficient for such a serious and profound diagnosis. 21 years ago when I was diagnosed with purely symptoms and without spirometry I certainly asked for a referral to outpatients for additional testing.
There is a good amount of evidence around Asthma flares and female hormones ( usually pre menopause ) and there is information about this known link. Again it is complex with potential high eosinophilic asthma and other phenotypes. Wish you well with your research.
I went to the GP about breathlessness about the same time that I asked for HRT so the timeline matches. Unfortunately, HRT didn't agree with me so I stopped it after a couple of years. back then I was only offered pills, I think that there's a lot more options available these days.
Yes, they have prescribed me Salbutamol which does help when I'm feeling breathless but it doesn't last very long. On my reversability test at the hospital, they told me to take 4 puffs and the result also backed up the asthma diagnosis but at the GP's she said two puffs and called me back in after only 10 minutes so the difference 1% short on the FEV1 test.
Thanks for responding and yes, I will let you know how it goes.
If I was approaching the NHS today with breathing troubles for the first time, I would absolutely deny having been a smoker at any time in my life. Why? Because smoking induced COPD is the lazy, blanket label which bars you from any investigations or even concern, in my experience. Because you have this label you will probably never get to see a specialist, and nobody will ever ask you if you had lung infections as a child (in my case severe from birth). No, you smoked and have COPD and that's it.
I agree with what you have said. When I started smoking (which feels like 100 years ago!) there wasn't the warnings that there is now about the dangers. I gave up 14 years ago but once a smoker, always a smoker in their eyes.
After repeated exacerbations of my asthma I decided to have a private consultation with a respiratory consultant. He arranged a spirometry and FeNO test – you breathe into a machine that measures the level of nitric oxide in your breath, which is a sign of inflammation in your lungs. ( I could not do this test but did the spirometry. I also had a high resolution CT scan of my lungs. That revealed I had cylindrical bronchiectasis in my right lower lung lobe. ( which he originally thought ). When my gp has listened to my chest they have always said I have an infection in my lower right lung.
It is my personal opinion that gps are the mechanics and specialists are just that. See them privately and you pay for their time.
I have had asthma since the age of five never smoked but my parents did
It's such a shame that you had to pay fora private consultation but I would do the same in your position. Both my parents smoked too, it was the norm then, I do wish that the medical profession would remember that. Years ago, they said that eggs were bad for you, things change...
In my opinion, you will have on your GP record what he gets paid for looking after by ticking a few boxes by the nurse once a year. Cynical yes but I got there by experience
I would give absolutely no weight to what the GP’s say, let alone the nurse. I saw numerous consultants as my lung health declined significantly over the course of 2/3 years. My fev/fvc is currently at .80 - so not technically COPD.
However, many of my other numbers are off - low DLCO, high residual value (synonymous with air trapping) and some others. I’m also highly symptomatic for chronic bronchitis. One ‘renowned’ consultant said CB is a really poor description & we don’t give it much weight. I didn’t even know what to say to that. Finally, as I was panicking after my last exacerbation, because of my many symptoms, another (royal brompton) consultant confirmed mild fixed obstruction. To which I then asked, so mild COPD? He said not really. But quickly followed it up with, ‘but for the purposes of getting you on a trial in the future, then yes, I would say you have COPD’.
Lung health is still in the dark ages unfortunately. 4 consultants saying completely different things (yes I was panicking as it was looking pretty serious,I’m relatively young, my life was falling apart, and no definitive diagnosis). All the while I was on the strongest triple therapy asthma inhaler. My asthma was very mild as a child. Sadly I then went on smoke for 15 years.
Bronchiectasis aside, COPD is an extremely complicated disease. This is why you see them constantly describe it as ‘heterogeneous’ in every medical journal article. As per the 2024 guidelines, I categorically have COPD (be it early stage or otherwise - it certainly doesn't feel like early stage). Yet I have 3 consultants telling me I don’t have it, and one saying I essentially do! Shocking stuff. Here are those guidelines for anyone interested:
Thanks for the link, I did read through it all. Interesting to know that we should be getting a RSV jab if we're over 60 years old. Someone forgot to tell the NHS that!
It sounds like you have well and truely been messed about! The Gold report admits that COPD is poorly diagnosed depsite being the 3rd biggest killer disease. Successive governments seem to fixate on certain health conditions: breast cancer, heart disease and currently prostrate cancer but I don't think that lung disease will ever get the same focus because of its link with smoking.
Yes, lung disease has been left out in the cold compared to other diseases (as you have mentioned), yet it’s way more prevalent. Smoking is highly correlated to COPP, Pulmonary Fibrosis & ILD and there’s been virtually no progress in any of these in decades, relative to cancer & heart stuff.
Crazily the definition 9f COPD changes depending which hospital you attend and the disposition of the Consultant. I have COVID damage to my lungs and trachea. Suddenly I’m at one hosptal suffering fromCOPD … but not at another local hospital which is doing its best to downgrade every patients illness … presumably to reduce their waiting lists.
Yes, it’s so frustrating. No wonder depression & anxiety and a co-morbidity of this disease. It’s just so hard knowing that you have a disease that you can do very little to halt it’s progress. You got COPD from covid and never smoked? I’m on a group with people with long covid and they really stuggle to cope.
No. Never smoked in my life though I developed chronic brittle asthma around 12 years ago after a really bad flu infection. The incessant coughing during 4 Covid infections caused Tracheomalacia which is really hard to manage. I find powder inhalers act as irritants and have been transferred onto nebulisers for NaCl solution + Salbutamol (Ventolin) and Tiotropium.. Works well for me and as I get a much more complete dose I have able to reduce my effective dosage or the drugs.
so glad to read your post tonight. I had my second lung function test this afternoon, the first being 7 years ago. The technician said to me there is very little change in the 7 years. He thought my results were showing Chronic Athsma, unless of course the doctor saw something on my X-ray. I was in hospital in March this year with a COPD exacerbation and they were quite definite about it and started me on different inhalers, but I haven’t been able to decide if any of them suit me. I said to him about the difficulty I had with the inhaler powders blasting down my throat and so many times not getting any meds,from it.
he suggested if doctor was happy I should be treated with chronic asthma and not COPD and get back on to Fostair and Ventolin. He also said and confirmed they had a lot of people complaining about the Salbutamol which ‘has the same ingredients as Ventlolin. It’s a cheaper option but honestly where is the saving if it doesn’t do anything for so many people. There was a pharmacy from a local practice in for instruction and she also said there has been a lot of complaints about them.
I have an appointment on Wednesday morning first thing with the advanced practice nurse, so I’ll be requesting a change of medication. I have another appointment next Monday at the Claudication Clinic, for an hour. Has anyone been to it before and can give me an idea what to expect. After that I will make an appointment to see my gp, and hopefully go over my results of my recent tests. I have still an echo scan for my heart to have but that will probably be towards the end of the year.
In closing I must say I’m happy to be treated with Chronic asthma, I know what it’s like and I know the treatment suits me a lot better. I’ve never smoked in my life, and I’m now 87.
Our situations sound quite similar. The consultant changed me from Trimbow to Fostair but she said that she was going to give me the powder version as she said that more goes into your lungs that way and that it was better for the environment. If I hadn't already tried Trelegy, I might have believed her but powder inhalers just make me gag so I instisted on the pressurised one.
I have looked into this quite extensively and the NHS guidelines state that they must promote unpressurised inhalers to save the planet but equally the guidelines state that they must take the patient's wishes as a priority over that.
Whatever you want to use Marylou, stick to your guns, they cannot refuse you. Good luck with your appointment and let us know how it goes?
PLease note that Ventolin is the brand name under which Salbutamol Sulphate goes. They are exactly the same thing. "Salbutamol, also known as albuterol and sold under the brand name Ventolin among others, is a medication that opens up the medium and large airways in the lungs. It is a short-acting β2 adrenergic receptor agonist that causes relaxation of airway smooth muscle. It is used to treat asthma, including asthma attacks"
Not to worry you but just to let you know that I have an autoimmune condition that began with late onset adult asthma. I’m not suggesting that you have this but it’s something to keep in mind. Are you coughing up anything? Does nothing seem to work for your asthma? To put your mind at ease I would ask to be tested for Vasculitis, especially EGPA (Eosinophilic Granulomatosis with Polyangitis) or Churg Strauss Syndrome (the old name). Do you have any other symptoms besides the asthma?
Yes, tingling in my legs plus I keep getting woken up with backache but that could just be my mattress. My mother had MS so I'd best look into this. Thank you for your advise.
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Copd diagnosis 5 years ago now diagnosed with asthma as well 
hi my names jan and i am new here and would like help or advice on copd
Diet and Emphysema
