18 month ago I had a bad chest infection for about 3 month, over Xmas. I got over it in the January 2019 but since then was left with a lingering wheeze on slightly forced excitation. Several trips to the GP over the same year, I keep getting told there's nothing wrong but to use ventolin to help, which it did, until finally I got a respiratory referral.
I've only had 2 consultations so far, the 1st just a chat and to plan a spirometry test which I had done 4 month ago from this post. My result have me questioning all sorts, I have a FEV1/fvc ratio of 0.68, a fev1 reversibility of 9% (plus 400ml). I was also told I had a degree of air trapping and RV 127%.
My consultant didn't really explain these on my 2nd visit, I just had bloods done and am waiting for my 3rd visit for those results. To me, looking on Dr Google, it looks like copd? I don't smoke, but spent my 1st 12 years in a smoking home. I'm now 34.
I've been using symbicort 100/6 for 3 month, and the 1st 2 weeks were great- symptoms were gone and never used ventolin in that time, but I only get about 5 hours relief with that now before I need my ventolin.
My wheeze is persistent, and I also get persistent congestion sensation in my chest if I don't take any meds. Any advice welcome.
Thanks
Lee
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Lee2k182
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This sounds familiar. I've just switched from Symbicourt to Fostair as asthma nurse explained that the particles are smaller and travel further into the lungs. So far, so good. But I've noticed in the past that new meds work well to begin with then their efficacy wares off. Learnt my lesson and will now pursue if things aren't working anymore.
I was put on long term Azithromycin for 4 months and it really cleared my long term clogged chest. Had to have a test before course started and immediately at course end.
Specialist may also consider a LAMA inhaler, usually for COPD but now for asthma also. Just make sure they check your blood pressure before you start this medication and have it monitored. If one LAMA doesn't suit there are others to choose from.
Definitely go to next appointment with any questions written down - usually if you show you want to know more the doctor will oblige or get one of the team nurses to talk with you. Always be willing to talk about expectations and follow up monitoring.
Thank you for taking the time to reply. I'm definitely going into that next appointment with a book of questions. I think I've freaked myself out with researching and researching these spirometry figures and symptoms, as they all point at copd. My consultant said I had asthmatic tendencies (god only knows what that means). I'm not used to not having normal breathing, having spent 32 years of no issues, it's horrid. I feel for all those that have lived this way for most of their lives.
Is it normal for meds to just stop working randomly? And is it normal for symptoms to persist daily for asthma? I don't think I have triggers, it's just all the time. As far as I'm aware I'm not allergic to anything.
As asthma varies so much and has sub sections, treatments can work well for some people but not for others.
Definitely ask about what type of asthma you have and if there's any research groups you can join. As a volunteer you can learn so much more about your type of asthma and I've found that the monitoring you undergo really gives the team a more complete picture of the way your asthma behaves and responds to different meds.
I've enjoyed quite a few years with controlled asthma and very few daily symptoms. Not now for some reason but I can tie myself in knots trying to find a reason. "Just one of those things" is the medical term I believe. 😏 But as one's asthma changes we have to take charge and pursue the right cocktail of medications that will help us as much as possible.
Make sure you get contact details of the respiratory team as you can phone if you need a chat over a concern or bring an appointment forward.
As for meds not working any longer, in my experience asthma can change and meds that have been effective for years just aren't enough anymore. Not sure if it's age or environmental or the type of viruses that have evolved but we need to be aware of symptoms that need addressing rather than left in the hope they might get better.
Symbicourt has never worked for me as expected but my asthma nurse is a good listener and happy to try Fostair.
Spiriva was brilliant for about two months then things gradually went downhill to the point where I felt dreadful. So having spoken to the specialist nurse at the hospital she emailed my GP and said I would be choosing an alternative inhaler. This allowed me to research the options and choose something from patient reviews.
My reactions to oral steroids is also different and I find it difficult to tolerate them now, but I will put up with the side effects for the short term as they still work for exacerbations caused by chest infection.
One thing that I have found very useful is physio help with breathing techniques especially when taking my inhalers. Asthmatics sometimes need to learn how to breathe!
I do hope you find the meds that suit you and get things back in control.
I'm only speaking of my experience and a few others, however, I do know that the fitter you are the more likely you can retain a steady control. But everyone is different and any factor can affect how your asthma behaves.
I have two cousins who grew out of their asthma. Other folk have no symptoms until they're in their 40s or 50s.
One chap I worked with had very brittle asthma but once he switched to dry powder inhalers he improved dramatically and stayed that way, all the way through retirement to the end.
My friend has had periods of poor control then everything will settle down but we think a lot of that may be stress related.
I could go on but you get the drift.
If you're disciplined, keep a diary of symptoms, meds and what you do/consume. Over time you maybe able to see patterns and what exacerbates your asthma and what's going on when your asthma control is good.
Oh good, a little bit of hope lol. I'm still not diagnosed with anything yet though, here's hoping it's asthma rather than copd 😬
Only thing bad about it is knowing that my scores are on the cusp of asthma. Like 3% away for a definite diagnoses. That 3% has got me thinking it could be copd. Argh. Could it be that you HAVE to hit 12% reversibility and 200ml. I'm 9% reversibility and 400ml. 😬😬
Definitely. I'm at a loss as to how to interpret these test results. I have mine but I remain ignorant, instead I just go by how I feel and what I can get done.
True. However, I've had asthma all my life but the actual cause of my type of asthma was only identified as recently as 2011. Treatment is still aimed at symptoms and not the root causes. My hope is that DNA research will start to identify the mutant genes and specific intervention will follow. In the meantime a new med, Fevipiprant, is the newest kid on the block and being developed for allergic asthma that isn't controlled by inhaled steroids.
I do wonder if there's more money in providing meds for a lifetime rather than finding a genetic cure. That's going to be the dilemma faced by people with all manner of illnesses.
Sorry you are left hanging. This is often the case I’m afraid.
Like you I have got all of my information from good old Dr Google, so please don’t think I am an expert or anything.
Firstly check out the NICE guidance for asthma and copd.
NICE say 12% increase in FEV1 and a 200ml or more increase in volume of 200 ml or more. I have also gleaned that there is some reversibility in copd but I don’t know how much.
Another resource I found useful was a chart on vitalograph asthma v copd.
( You’ll have to search for that, I don’t have the link.) It lists symptoms etc side by side so it is an easy reference tool.)
Air trapping or hyperinflation of the lung can happen in both conditions.
There is also a useful spirometry calculator I found on doctor patient website where you can input your values and it gives you your % of expected values for your age which can be informative. ( You need the ers values, maybe not, I’m assuming you are in the uk) Use this as a guide though, not gospel. For example my lung volumes are higher than the norm now I am on treatment but we’re bang on the norm prior to treatment.
Do you take your Peak Flow? If not please do so. You can pick up a Wright Peak Flow device for about a tenner on Amazon.
This was the best advice given to me early on while I was waiting to see a consultant. Initially, take your peak flow about 4 times a day. Try to take it when you are feeling ok but also when you are feeling rough. Record your results on a graph. You can download a peak flow diary from the asthma uk main site. This only has room for am and pm readings but you can write the others on, or just get some graph paper. This will be a record of your variability that you can show to your consultant when you do get to see him.
I can see where your dr is coming from when he said you have a tendency towards asthma in that your reversibility, from what you say, was not bang on the NICE criteria. Maybe that is why they are running blood tests, to check for allergies. And maybe it fell short because you had air trapping at the time, don’t know.
Try not to concern yourself too much, easier said than done I know. Somehow copd seems much scarier than asthma. I think this is because we see older people in their wheelchairs with oxygen bottles on their laps whereas people with asthma are less distinguishable from the rest of the population.
On a more practical note, another visit to your go might be a good idea. Maybe your symbicort needs to be changed as it doesn’t seem to be as effective as it was.
There is also a section on here where you can post and you will get a reply from an asthma nurse ( now she tells me 🤪) or if you prefer, you can ring them.
Thank you for taking the time to provide all that info, it's definitely helpful.
I still don't get how the consultant can say I have "probable asthma" when I don't hit any asthma threshold 🙁 my peak flow had barely any variability (8%, monitored for 2 weeks). I still have the peak flow meter I was given and I've used it a few times, doesn't really change much. I hit 520-540 all the time.
Hi Lee. I did a spirometry test and I was told I had COPD last June and I was told that I will need a oxygen bottle in a few years. I said but it feels like my throat is tight not my lungs, it brought on major anxiety. I ask for a second opinion and even changed doctors and finally got a referral to a specialist. He ordered a full lung function test. After months of stressing and being worried I was told on Monday that I do not have COPD. It's more reflux. Everytime I do a spirometry I always blow about 65 ish. I am also seeing a speech and language doctor because of reflux. If I had not ask for a second opinion they would of stuck me on the wrong meds for ever. I'm 37 and did a half marathon last week. Look into silent reflux and Lpr. It's so common now days in the west. Hope this helps
Wow, if I was you I'd have been a wreck after that experience. I'm glad you chose to get a second opinion, thank god you did.
I've never heard of silent reflux, it's interesting, having had a quick look in to it, I do and have had similar symptoms to it. Even before all this I had mild heartburn, generally have a pack of antacids around. Lump in throat sensation I've have for many years on and off, and throat clearing is nearly a daily thing for me but never thought anything of it. One of my earlier symptoms was chest pain that kinda got dismissed as apparently there are no nerves in your lungs, only outer wall. I used to say it was deep in the middle, more intense that heartburn. And I do feel like my tightness and wheeze is coming from area around top of breastbone.
The only thing that make me question that it probs not that is I seem to react to bronchodilators so must be my chest right? The steroids deffo don't work though.
When you say you blow 65, is that the fev1/Feb ratio? Do you have any chest issue as well as the reflux?
Hi there. Not many English doctors know about Lpr and vcd. I had it confirmed buy a ent that I had Lpr and had a camera down my throat, they to thought I had Barret's, turns out that was just inflammation because of reflux. Iv joined the Lpr group online and now I follow the acid watchers diet which is a great book, can get from Amazon for about £6. Since I started the diet I have dropped 3 stone and feel alot better, still clear my throat a little. Not sure how they calculate it but I think my fev was 151% and it showed I had a obstruction, I remember the guy doing the full lung function test said I have a better rate then him. If you look up vcd sprimatry it will show a similar chart as someone with COPD, you could do with a full lung function test yourself to be sure on anything. Please ask me anything cause iv been there and know how talking to people helps.
It's my understanding that the spirometry I had was a lung function test. Sat in a big glass box blowing in and out of a machine? My fev1 was normal for my age, 95% and my fvc was above average at 112%. But together only 68% which is 2% away from the cut off for "normal".
I've actually looked up vcd before and I don't think it's that cos that says wheeze on inspiration, mine is expiration. I get I tightness before the wheeze happens, usually.
Did you try any bronchodilators when they thought it was COPD? If so did they work?
Not to sure, the full lung function test I had is 4 test in one. How they could tell was from the nitrous oxide test, mine was 50 which is more asthma. If it was COPD it would be alot higher. Yes they put me on the fostar one 200/6 but the specialist said the other day that I'm to start reducing it down. I stopped the montelukast aswell.
Ah I see, so does that mean you have asthma if you scored positive on the nitrous oxide test? I don't know if I've had that test or not, summet I need to talk to my consultant about.
What were you original symptoms of you don't mind me asking. For me it was just an annoying wheeze on forced expiration. Didn't even wheeze when I was at rest, just normal. But over the last few month I've been getting a congestion feeling at top of chest. Nothing major that I can't breath, just uncomfortable and concerning. I actually feel better if I go for a jog or moving about more. I don't feel much at rest apart from when inlay on my back or slouched on the couch.
Normal range on the test is about 25 ish I think. Asthma is about 50. The test can go up to 325 so mine was low. Iv always had asthma since I was about 10.
Sorry forgot to put. I have a wheez sometimes on breathing in and sometimes out. My symptoms were always clearing my throat and coughing all the time to the point where I passed out a few times
Hi Graham, just responding about the FENO: I'm surprised they told you that a higher score would be associated more with COPD. This test isn't diagnostic for either asthma or COPD, but indicates you have a certain type of inflammation in your airways which is more likely to respond to steroids. My clinic uses it a lot but in my case it's just to see if I need oral steroids (which generally I don't, because I have a type of severe asthma which doesn't respond to steroids). Cutoff is about 45-50ish in adults to indicate it is raised (though my consultant says the 30s is higher than expected for 'normal' and 25 is often used as a cut-off whereby lower than this means inflammation probably isn't present). However, there isn't a level where you can say 'this is asthma/COPD'. Some people have very high levels with minimal symptoms so it's also not related to severity.
If anything, more people with asthma are likely to have higher FENO levels, as that kind of inflammation appears to be more often found in asthma than COPD. It can still be found in COPD, and may be used along with blood tests to decide whether someone with COPD will benefit from taking inhaled steroids. However, it's not really useful to distinguish between asthma or COPD or even to diagnose either. NICE guidelines like it for asthma but other guidelines do not, as they feel it is expensive and impractical to use in primary care, and not really appropriate for diagnosis given that you can have types of asthma without this inflammation.
Re the spirometry: both COPD and asthma would have a different pattern from VCD, though if you have VCD combined with either of them that would of course complicate things.
Lee2k182, sorry I don't have much to add - it's never fun being in diagnostic limbo! It's also tricky to catch what your lungs are up to with asthma - you do spirometry based on the schedule not on how you're feeling, so it's always a snapshot of how you are at one moment, and asthma is a variable disease. I would reinforce the advice above to talk to the AUK nurse helpline as they are very good at chatting through it all and explaining.
Whoa that's a lot of knowledge you obliviously know your thing lol. Thanks for your reply.
I guess I'm just worried. I obviously don't want any lung disease but given the 2 likely suspects, I'd take asthma please. I keep researching my scores and all I get from my results is copd. Mainly because I'm 68% with 9% reversibility and 400ml. 3% away from the asthma cut off.
I tried contacting the asthma people, they said they would call me back but didn't, I could just call them back I guess 🤷🏻♂️
Yes definitely worth calling them back - if you can, try to avoid round lunchtime as I think they're busier then. If you do it in the afternoon I find they're more likely to pick up without needing a callback. You can also chat to the British Lung Foundation as I believe they have a helpline too, if you wanted to know more about other possible diagnoses.
I think COPD can sound scary but it can be managed too if it turns out that's what is going on - especially if you're not a smoker. Some people do of course have it from smoking and continue to smoke when they are diagnosed. This usually makes things worse - but doesn't mean everyone is going to end up like the worst cases you may have seen/heard about. (This is not expert advice at all, but i know that like asthma there is a wide range on the impact it has on you).
This is what I mean. Iv been pushed from Piller to post. Not many seem to know much about Lpr silent reflux or vcd in England. Iv done abit of research in my time with anxiety and not being able to sleep. My ent told me that and he said he could of diagnosed me over the phone with symptoms, he put camera in my throat through my nose and gave me a referral to speech and language. My consultans spot on, 25 to 50 normal in adults and 50 being asthma. I had the test when I was 10 when I was first diagnosed with asthma. Lee ask your doctor for a referral to a specialist and ask them for a full lung function test. Cheers
Here’s how the company that invented FENO/NiOx suggest medics interpret the results (and also says it only measures T2 inflammation that not everyone with asthma has). 0-25 is normal, 25-50 ‘maybe asthma’, 50+ ‘significant chance of asthma’. Mine fluctuates on my control level, when well controlled I can be as low as 18 i think, when uncontrolled my highest recorded is 136ish. However some people can have higher or lower levels naturally with no resp condition. The number literally only says if you’ll be responsive to steroids (oral or inhaled) or not. It’s a relatively new diagnostic tool and there is A LOT of misunderstanding around it by medics. Hope this helps anyone who is trying to understand what feno/NiOx means...
Even a full LFT can be misleading. Because asthma is a variable and intermittent condition often LFTs can be negative/normal (another thing that i have done even as a severe asthmatic). After that they usually suggest doing a bronchial challenge test (using histamine or methacholine as a trigger) then if that is also negative/normal they usually start looking at conditions other than asthma (like VCD/EILO or LPR). The most used diagnostic test for asthma is reversibility but that also can be limited, because we don’t have ever expanding lungs... if we reverse up to our best but that’s not a large enough difference then it cause say not reversible, rather than reversing to best... the bronchial challenge rests create an obstruction/restriction response so the reversibility from that is usually a better indicator of asthma v COPD.
Lee try not to borrow trouble from Dr Google. The diagnostic process for asthma can be a long one. Try ringing up your team again and see what they suggest.
The official guidance is that under 25 means inflammation is unlikely, 25-50 is a kind of grey zone as my consultant says where inflammation may be present, and 50 plus means there is inflammation.
However, a lot of factors can affect this, including the treatment you're on and even some kinds of food you've eaten. So you can't really definitively say 'this level means asthma', but 'this level means you have some inflammation, which is often associated with asthma'. It can also be associated with things like hayfever, even in people who don't have asthma. Some people have sky high levels but no signs of asthma, or may have mild, controllable asthma. Some people with COPD might also have raised levels as you said, but there isn't one level for asthma vs one for COPD.
As I mentioned, some types of asthma don't have the inflammation that FENO measures - I can be in hospital with asthma and have normal to 'grey zone' FENO. So again, it's not necessarily useful alone to indicate asthma - the context is important.
Yes your right 50 means asthma which when I did the sprimatry they couldn't tell me that, they just said it was COPD take this for the rest of your life which will be shorter and you will end up needing a oxygen bottle. Great hay, that's exactly what he said to me the prick. Thinking of taking him to court to be honest. Do you know how much COPD meds cost and how much kick back they get from it. I find the problem in England at the moment is alot of doctors are seeing the NHS as a big money maker. That's why you are starting to see alot of adds for solicitors claiming compensation for mis diagnosed patients. I'm defo not going down that root but I'm just getting the positives from my experience, lost 3 stone in weight, eat all the right stuff and run 5k in under 25 mins 3 times a week and my vo2 max has gone from 30 to 52. So in a way thanks to my doctor for being a prick I have improved my health tremendously and now have a great doctor and a good team of specialists. Please ask for a full lung function test and try not to let anxiety get the better of you. Acid watchers diet book is amazing to me. Thanks all
Thank you all for your advice and info. I can see that differentiating asthma and COPD isn't as straight forward as a single pulmonary function test result. I guess I just have to wait it out and speak to my consultant in a few weeks time.
Never the less it's still worrying to me, I dunno if I'm just developing anxiety. I have 2 small children and I just keep picturing not seeing them grow or not being able to do things with them once they are a little older. That's my biggest fear, hence my concern with copd.
I'm still early days but my consultant said I have "probable asthma" from my 1st lung function test so I'll try taking positivity from that.
It sounds similar to me. I also was married to a smoker for 35 years but was out at work a lot of the time. However, in my early working years there were several smokers in my college staffroom until new rules came in about smoking at work! I am now on Trelegy Elipta, a once a day puffer which currently is doing wonders, no wheezing and just occasional tightness. ! I still have ventolin as a rescue puffer. Keep away from crowded places as much as practicable when flu season is on, and keep Corona Virus at bay! All the best!
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