How reliable is a spirometer in accessing asthma severity or a flare up?
I was told my symptoms were out of preportion with my lung function and thusly was told it was all down to dysfunctional breathing.
I am not denying any dysfunctional breathing I know it is common for asthmatics.
I was told the fact that I was needing to use clearing techniques along with rescue inhaler to clear my mucus from my airways in order to feel like I could breathe was essentially all in my head and that unless I was coughing up green stuff he literally said he wasn’t interested.
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BlueBlobs1
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This seems like a very unhelpful encounter unfortunately! Was this a GP or respiratory Dr (not that respiratory drs don't say this kind of stuff unfortunately, and it can be hard to get anywhere when they do).
There are studies showing that spirometry doesn't overall correlate that well with symptoms, and is not the best predictor of an attack. It's also difficult with asthma and especially with one off readings - even with ongoing problems you can be ok when you actually do it, or recently have had medication (was that the case for you). Some medical professionals do unfortunately seem to forget that asthma is not COPD and is variable.
In addition, like peak flow the spirometry values are predicted based on average values for your height, gender, and age - not everyone will be at the average, this is not how it works! With peak flow it's easier to work out your actual best but most people don't do spirometry often enough to find that out. Obstruction also is often referred to as fixed at a specific cutoff (FEV1/FVC ratio of 70%), but actually it varies too even as an average value - a taller, younger man has a different cutoff from a short old woman and for asthma that should be calculated.
As you say, dysfunctional breathing is common in asthma, but the mucus doesn't fit with that - it sounds like you have this as an ongoing problem which someone else has addressed if they have taught you clearanxe techniques, but isn't resolved. Can you see a different GP, if this was a GP? It might help to call the AUK nurses for some advice:
Thank you very much, that’s very helpful. It was unfortunately a respiratory Dr. I got the feeling he was completely switched off the moment I walked him. Perhaps because he already had the spirometer results.
I had a very advanced full lung function test in the past and the dr told me that less skilled drs would completely miss the problem as they read single values and compare against the normal values which means they miss things. He said I had small airway inflammation and air trapping. That was a year ago and I didn’t even think it was that bad when the test was done.
I had my symbicort on the morning, when I was tested before I was told not to take it before the test.
I won’t be going back to that Dr. I have been made a appointment with respiratory nurse. I have not seen them before but I am sure they will be far more helpful.
I have called the helpline previously and the nurse I spoke to was fantastic. So will do if need to.
Sadly the simplistic interpretation happens too often, even with alleged asthma specialists! It's a shame you couldn't see the Dr who had a more nuanced view this time - were they in the same clinic? I hope the nurse is more helpful.
I've also had results which were worse than expected when I felt fine, and which I know were performed correctly - but those never seem to make it into letters; only gets commented on when it's the other way round.
They only did diagnostics, don’t do the treatment side. I talked to him for like an hour, he was amazing. He said that asthma is poorly understood by most professionals. Unfortunately I am no longer near that hospital but I tempted to travel if I need to!
It’s interesting you say that, I have noticed a similar trend of everything being down played in the letters.
Absolutely not in your head. I too had a lot of ongoing problems with Mucas an not being able to get it cleared up. With the result that it blocked up the small airways with what’s known as mucas plugs. That in itself led to pneumonia an a battle trying to get bk to full health.
Thank you. Mucus problems with asthma don’t seems to understood by most drs. Except for asthma nurses I have found who tend to have the best knowledge. It’s worrying. Sorry to hear they happened to you. It can take a while to recover from these things.
Hi, I totally relate to what you described. I've been having all sorts of symptoms of an uncontrolled asthma, though some of them may be due to lingering Covid impact. My GP and consultant believe it doesn't quite fit with asthma exacerbation because of normal peak flow reading plus my inhaler doesn't help me much. It's totally confusing indeed. My GP did mention mucus plug being the cause, but I didn't pursue treatment due to breastfeeding, so might worth pursuing with yours.
Thinking of past visits to the respiratory clinic, every visit was different in terms of being listened to and outcome and it depends on who you see, which is a lottery it seems. For several years now, after checking in and getting weighed, you see a nurse who goes through all the same tests and then they go through a questionnaire about symptoms, day and nighttime symptoms, affect on quality of life and every day life etc. I guess it builds a picture over time and is a more rounded approach as test results alone are insufficient to gauge how a patient is coping.
Having said that, I've never felt convinced that the consultant has paid any attention to this preliminary fact gathering and barely communicates anything unless prompted by me. "What are you thinking doc?"
What is disconcerting is having contradictory information across several visits but this is mainly down to seeing a different consultant each time. Like you, I come away frustrated or disappointed that nothing has been achieved or I feel like things have hit the buffers.
The asthma nurses attached to the clinic are great and very enthusiastic when it comes to communication and helping patients understand their asthma.
I have thought that I would benefit from a "how to get the most of your consultant appointment" class.
Definitely give Asthma UK a call to discuss what happened and what you can do to address your symptoms. Take care.
Every time I go to my current one they do the asthma control questionnaire and spirometry, but as above I notice that gets ignored by the consultant if it doesn't fit his existing views on what's going on. There is zero chance of me being able to have a sensible discussion about anything such as triggers or symptoms (apparently symptoms aren't relevant/important). I've been told I'm the one who is unwilling to discuss things or entertain any non-asthma comorbidities (I am willing, but it's impossible to raise anything like that without it taking over as the whole problem and any asthma issues ignored or put down to alternatives, so I don't). My next appointment is phone only which at least means I shouldn't get him going on about spirometry.
The asthma nurses there are variable - some have been good, some less so. Even if they are good though, the consultant doesn't listen to anyone who disagrees with him so it's fairly pointless.I have met quite a few good asthma nurses but sadly they always seem to be not at my usual place, about to leave, or on the AUK helpline lol (very helpful but can't have direct input into my care, of course).
I used to think I needed a class on how to get the most out of the appointment, but hearing others have similar experiences, perhaps what's needed is the consultant to take a class on 'how to listen to patients and handle uncertainty in medicine'.
The lead consultant at my respiratory clinic popped up on the BBC's The Diagnosis Detectives - it claimed to gather 12 of the United Kingdom's leading medical experts to diagnose patients with life-changing symptoms that have baffled other doctors. I watched it as I wanted to see him in action with other patients. He never actually got to see any of the difficult to diagnose patients, but he did take part in the initial group discussions where the gathered specialists reviewed case notes and put forward their ideas on potential diagnosis. Each patient then got to attend an appointment with one of the specialists in order to explore that specialist's ideas on testing and treatment.
My doc was no different on the programme to my own experience with him in hospital, but I was surprised to discover that he was motivated to specialise in respiratory disease as he suffered from asthma as a child, which he claimed, gave him insight into his patients' experiences. I'm not sure if that knowledge made me more disappointed.
I was also surprised how disappointed I felt for every patient with their "diagnosis" and the follow up treatment, which to me just felt like a repeat of my own experience. No definitive diagnosis of disease beyond treatment of superficial symptoms. The patients seemed satisfied, however; I wasn't as a viewer. No amazing diagnosis or groundbreaking treatment.
It was an interesting experiment and it really made me think how much specialists don't actually know.
What I have noticed about published research into asthma, it always states that more research is needed to understand more about the findings. I was asked in January last year to take part in research into Azithromycin and its affects on MAIT cells and to better understand their role in some asthma (I didn't take part because I was shielding). I was just about to start my second course of Azithromycin as a previous course had worked so well when I hit a bad patch. Talking to the consultant running the research project, he explained that the main open questions that remained were, how does this drug work? Which asthma sufferers are most likely to benefit? How long should treatment last? Can alternative, non-antibiotic treatments be equally effective but without risks of antibiotic resistance? Is it possible to reduce infection using MAIT-cells? All I knew was that Azithromycin really helps my type of asthma and I must have been lucky that I had previously seen a consultant who was aware of its potential. Talk about a lottery.
I had taken part in research before with this consultant and I learned so much. The appointments were chatty and informative. The telephone conversation last January was equally informative. Was it this particular consultant or because he had his research hat on? Who knows?
I must say that my GP's asthma nurse has been brilliant. She listens to all my ideas and concerns and I feel like we're a team when it comes to my asthma (she also has asthma and it's clear she also has run into similar brick walls). Some of the hospital asthma nurses have also been equally effective.
This forum is so necessary for us asthma sufferers. I think and it would be good for asthma consultants to read it now and again (I suggested it once to a consultant who was reluctant in accepting that Prednisolone could be problematic for some asthmatics). I don't know about them, but I continue to learn much from my fellow sufferers.
I find the problem (which may well be related to training and environment) is that many doctors, especially perhaps specialists, are not good at handling uncertainty and grey areas, and places where the science isn't well known. My consultant's response seems to be to try to make everything he doesn't know/understand (because it's not that simple) into something he does know and can stick into the right box - he has a real thing about how asthma is basically all about eosinophils and allergy, which happen to be the best known areas within asthma currently. I've mentioned elsewhere that it reminds me of the drunk guy searching under the lamp post for his keys and on being asked if that's where he lost them, says 'no it was over there in the bushes, but the light is better here'. This is the flip side of 'evidence-based' - I'm all for it but sometimes there is uncertainty and doctors need to understand how to manage and communicate that. My consultant's response is to pretend nothing exists unless there is a wealth of evidence already for it, and as a result he completely lacks understanding of our reality as asthmatics. And, I would argue, of science, which should not be static if done and applied properly.
I've personally found it isn't even as simple as them getting it if they have asthma - as you've noted. I'm now actively wary of doctors who say this, as one of the worst consultants I've ever met went on all the time about it. In her case it seemed to result in two things a) anything outside her own experience as an asthmatic couldn't be real - she even told me all asthma can be controlled (🙄😕🤦 ). b) it felt like she didn't think she needed to actually educate herself or keep up to date on asthma because having it meant she automatically knew all about it. This obviously didn't apply to me, naturally. I knew nothing and never would, even about my own feelings, and she knew best.
After meeting her and some other female drs who don't listen at all, I also have no time for the belief that female doctors always listen better. I suspect that's just anecdotal from people who happen to have had bad male ones and good female ones.
I know what you mean about wanting them to see this forum, but I also question if it would make any difference. My cons seems to think patients (not just me but any) are incapable of understanding anything or managing their own illness and that he and his machines know best. If he were to read these posts, I feel that he'd filter them all through his confirmation bias, and so would others. Might be instructive however for good consultants who don't believe what their less understanding colleagues come out with.
PS apologies for the diversion, Blueblobs! I'm aware we've strayed off topic a little, but as you observed these differences between consultants yourself, I hope it's still helpful.
I wonder if it's the God Complex? Personally, every time I changed roles at work or got a promotion, I would suffer Imposter Syndrome for a long time until I felt comfortable with the work. But I always felt like there was more to learn, no matter how long I had worked on a particular team. Every case was different, even within the same project and success could only be achieved by understanding that.
As I've aged, I've garnered different strategies in trying to get doctors to take things seriously (gynaecology, endocrine, respiratory - all specialists), as I've experienced the most inexplicable dismissal of various symptoms that have turned out to be thyroid issues, anaemia and gynae problems. In each case I had to experience a thyroid crisis, a blood count of 6 and a 4.5 stone weight loss in order for another doctor to treat the various conditions in an emergency setting. In every instance the emergency doctor has expressed surprise (and on one occasion, anger) at the way I had been treated as symptoms were screamingly bad, but not always classic.
In all these cases it was specialists who had failed to err on the side of caution. Fortunately, my respiratory specialist signed me off and so my brilliant asthma nurse was able to pick up the baton and her care has really helped me change my treatment and supported me in finding medication that didn't give me awful side effects (high blood pressure and glaucoma). I'm grateful that things are much improved.
I just Googled my lead specialist and he specialises in eosinophilic asthma, including research. I'm non-eosinophilic and have aspirin exacerbated respiratory disease. I guess that explains alot.
I'm glad things are going well for you now! Just awful it got to that point of needinf urgent treatment.
I find respiratory specialists mostly (with some honourable exceptions, and I am sure some I haven't met also don't do this) very blasé and inclined not to really consider quality of life issues.
Many of them (and not just for me) also seem to love criticising ED after the fact and assuming the ED staff know nothing because well, you look fine now so you can't have needed admission 2 weeks ago.
Mine believes both that any doctor knows better than me and also that while mid asthma attack, I am able to demand that ED drs give me unnecessary treatment and that they will always do so without question (lol yes that's how it works). It must be unnecessary because my asthma is, I'm told, not at all dangerous in any way and ED always panic.
Your specialist wins the award, definitely. Asthma not dangerous and the rest of the assumptions?? Crikey. Thank goodness for the honourable exceptions though.
Yes, regarding quality of life issues. Despite providing all the details on the questionnaire, even when life has shrunk down to minimal activity and what is necessary, there's a blissful ignorance as to how symptoms affect daily life and trying to hold down a job. I guess as long as treatment is wholly drug based (apart from some physiotherapy), the holistic approach is down to our primary carers, like my fabulous asthma nurse.
Reading your experiences I do feel aggrieved on your behalf. Bad enough to battle a respiratory disease like asthma, but to have to battle the very person who is supposed to help, makes one feel frustrated and vulnerable.
One of the reasons I volunteer for research is to ensure they have a non-eosinophilic subject. As for AERD - forget it. They still don't routinely screen for it. I've worked with 4 other asthmatics, and in those 40 years, 3 of them had AERD and suffered for years before getting a diagnosis. That's an 80% rate. It can develop at any time and cause untold problems, but it's still considered that only around 8% of asthmatics are sufferers. That 8% is a guess because AERD isn't screened for and is diagnosed by ENT, even though it's a respiratory disease. Rant over.
He's not even the worst I've met, though he was the registrar at one point of one of the others. But yes - it does make it worse, and tends to make us as patients feel that it's due to what we do and are like.
I feel I should volunteer for research as I feel strongly, borne out by other research into this, that trials are not representative of real life asthmatics. One former consultant kept telling me that I needed to be more like his research patients. I think you'll find it's the other way round Prof 🙄 This does mean I tend to feel I would not be welcome or 'relevant' in their minds. Glad you're doing it as a non-eos type!
Even the drugs are relevant to quality of life though - mine is worse if I'm undertreated and I had to fight to go back onto montelukast as it isn't dramatic but does improve my QoL enough to make it worth it. And theophylline also improves my quality of life. We should be able to discuss what we value and have fully informed input on balancing risk/benefit of treatment.
I had been struggling for around 18 months but didn't seek help as I had become ground down by the 6 monthly hospital appointments leading to no action beyond what my GP would prescribe. Out of the blue, one of the research nurses rang me to ask if I would join their research project as they didn't have any non-eosinophilic subjects. She said they would, in return, look after my long term flare up. She was true to her word and the experience was a positive one.
I learned alot about my asthma and they established I had a sub-phenotype which had only been identified when isolated in primary research a few years earlier. Targeted treatment is many years off as there's much still to learn. So it did help me come to the realisation that we were only ever going to treat the symptoms. Since then I've made radical changes to my diet and it has really helped, but that's just me and I'm happy to reach a more comfortable place.
The term non-eosinophilic (non-T2) really means that I'm not eosinophilic and there's no universally agreed definition of non-T2 asthma, it's just an umbrella term. But you probably already know that, but was a new concept to me.
I did raise the subject of genetic medicine with the research nurse and she said they had no plans to look at that. They have to seek funding for every project and depend so much on pharma for that funding and that will influence the direction of research.
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