Asthma or no asthma?

Hi, I hope this is ok to post here!

So I haven't been around here for a few months now, but I wanted to come back with a few questions. I've been having severe breathing difficulty for a year now, which has resulted in me leaving my university course and living back home with my parents. At first I assumed it was asthma, as I was diagnosed with asthma at 14 (I'm 20 now) and my symptoms are breathlessness, chest pain/tightness, coughing, and tiredness. I've been with a respiratory consultant since January after my GP at uni referred me and have had countless tests done (CT scan, blood tests, camera in lungs, camera to look at vocal chords, exercise test, echocardiogram to name but a few lol) but all have shown my lungs are fine, which led my consultant to thinking that it ISN'T in fact asthma that I have. The only slightly strange thing is that my heart rate is very high and gets higher when I exercise (when I did the exercise test it started at 120 and kept going up haha), and of course the fact that I'm breathless all the time!

My respiratory consultant referred me to a cough clinic as I have been coughing all the time since I was 6, and I saw the consultant there in September. He ordered a histamine challenge for me as he doesn't believe I have asthma and wanted to rule it out. He took me off all inhalers prior to this and I went into the challenge thinking I wouldn't react. However, I did react (it was a horrible challenge and had me feeling sick for weeks after!) so now I am rather confused!

This has been such a long journey and I find myself being told 'no, you definitely don't have asthma' one minute to 'yes, you have all the symptoms of asthma but the treatment doesn't work' the next! One reason my respiratory consultant thinks it is NOT asthma is that (he says) I was on very high amounts of inhalers back when I first got ill and they didn't help. I was on symbicort 200, put up to symbicort 400, then put onto a combination of pulmicort and oxis for a few months. I was also on two courses of steroid tablets, for a week each time, and none of these helped my breathlessness, cough, or chest pain. My consultant then tested me for many other things (VCD, acid reflux, dysfunctional breathing, hyperventilation syndrome, etc etc...) and all have come back negative. His next step is to do another exercise test, but this one will be invasive so he can have a look at what's going on in my blood when I exercise. I'm also seeing the cough clinic again next week, for the first time since the histamine challenge, and have no clue what he will say now!

I'm just feeling very alone and very confused. My breathing is extremely difficult and I get chest pain and breathlessness from doing the tiniest thing (standing up, some days). Since I had my inhalers taken off me my chest aches a lot more and I find myself tiring much more easily, but I start to question if this is because I have asthma or if it's because I psychologically feel better taking SOME KIND of medication, even if it isn't actually helping me. The consultant at the cough clinic was so sure I was misdiagnosed with asthma and my cough and breathlessness is caused by something else, but he was also positive I wouldn't react to the histamine challenge, and I did. So now I have no clue what to expect!

I hope this is alright to be posted here, I'm just wondering if anyone else has any experience of being diagnosed and undiagnosed with asthma? I have been ill with this for so long now that I'm just tired of not knowing what is going on with my body, the symptoms are so difficult to manage when I have no treatment/diagnosis and I'm left to deal with it on my own. If I ever have to call an ambulance the paramedics are extremely reluctant to give me nebulisers as my heart rate is usually through the roof, which I can understand, but it doesn't make it any easier when I can't breathe! Luckily I haven't been that bad in a few months now, but it's because I literally do nothing other than move up and down the stairs twice a day. I'm housebound and sofabound pretty much all the time and I just don't know what to do anymore, I've had so many tests done and none have shown anything specific.

Apologies for ranting and the long post. I do my best to stay positive, but a year of fruitless testing and no treatment has tired me out! Does anyone else have experience with anything like this? Thank you so much for reading!

25 Replies

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  • Hello musicgeek,

    It is absolutely fine for you to write your post. We don't all fit into a neat 'asthma' box and this is one place we can vent and find support.

    My situation is similar in some ways to yours. I was diagnosed with adult-onset asthma at age 24, am now 51. I confuse GPs and Consultants alike.I have had my diagnosis questioned so many times I have lost count. The last consultant I saw up until Feb 2012 believes my symptoms are suggestive of asthma because I respond well to nebulised salbutamol. But I always need higher doses of inhaled steroids and frequent doses of oral steroids. All of my tests bar one came back as normal. The only test which was not normal is I have low gas exchange which the consultant believes contributes to my SOB.

    I would have liked to have had exercise tests done but the difficult asthma clinic I went to doesn't have any, He threw every test (in his words) at me and still no answers. I also had a bubble echo done - normal. My current flare up started in May 2010 and still going although more manageable and on lots of meds including a home nebuliser if I need it. My symptoms over the years have been like now to normal at times. I don't wheeze and my PF is normal. Symptoms - mild to severe shortness of breath and mucousy cough also exercise induced. I start all of my appts with saying I have non-classic asthma.

    I hope you get some answers soon and can then get treatment.

  • Ah musicgeek, I remember you posting before. I also seem to remember that you play the oboe, which must make all this even more rubbish since quite clearly you can't do that at the moment! I'm so sorry to hear you've had to stop your course - in your position I would be incredibly frustrated too.

    I have actually been in a similar position myself - I've heard ALL the asthma-not-asthma etc etc etc and had loads of tests too, been told it's in my head, it's bad breathing, I'm unfit etc and had a lot of tests come back normal. Like you, I thought it was asthma because I was diagnosed age 7 and have a strong family history of it, plus it came back after swine flu (in fact a resp dr I recently saw while in hospital said he thought the fact I'd had it diagnosed as a child strongly suggested asthma was the problem as all the other possibilities were unlikely in a 7-year-old!) This forum kept me sane as I saw others' similar experiences and guess what? Turns out, finally, that I DO in fact have 'difficult, poorly controlled asthma' which is currently, admittedly, being a pain and not fully responding to treatment and I'd rather not have it, but it does help to be taken seriously and have it acknowledged that I am not typical.

    Like you I went through a no medication period after stepping up and things not helping (I did find btw that some things helped when I tried them again - odd but true, not sure if they needed longer (I don't think I gave Symbicort long enough as on the higher strength and a longer trial it did start to work) or needed to have other things in combo; I think perhaps with me, it needs a little bit of everything so trying just one thing, while I understand the logic, can mask that it is actually helping. Against a background of feeling like you do (remember that, ugh) it may be hard to tell if anything is really working. I still have trouble telling at times; my consultant put me on another trial of pred to bring things back up into green, which didn't seem to work. However, when I began tapering off them my lungs indicated that in fact they rather liked the pred thanks and kicked up a fuss which resulted in an A&E trip. So clearly they were doing SOMETHING! In the end my GP, who saw the state I was in, decided to trial montelukast and it definitely helped showing that yes, I was responding to a specific asthma medication! It wasn't all plain sailing from there but I did start to get somewhere.

    I also remember feeling horrendously exhausted by the smallest thing when not on meds (and when I was taken off them for tests, went right back to that). Despite my asthma not really improving and now at times landing me in hospital which hadn't happened before this year, I have never quite had that dragging exhaustion and inability to do anything that I had then while on absolutely nothing. What you describe sounds very similar to my experience, so I wouldn't be so quick to assign it to a psychological need, especially since you had a positive challenge test (mine was negative, possibly because `I didn't stop meds soon enough, but then I had a good reversibility reaction - assume you've had reversibility testing?)

    One thing I will say which I wish I'd known before is that if they start on the unexplained symptoms=anxiety route, don't let them. Where I work now we use a book called DSM-5 which is basically the psychiatry 'bible' as in it has guidelines and criteria for diagnosing mental disorders, and it very clearly states that to diagnose someone with anxiety or any other disorder there have to be POSITIVE criteria and that it's never appropriate to diagnose just on the basis of unexplained physical symptoms. Not suggesting you go round quoting it or trying home psychiatry hehe but I really wish I'd known to say that as I kept getting that thrown at me despite me never actually having any symptoms of anxiety disorder (and it's more than just feeling worried at times), so seeing it written down gave me an 'aha, so they were wrong to just pin it on a psychiatric condition because they couldn't figure it out'.

    I'm rambling a bit, hope this helps but I do really feel for you having been there and wanted to let you know that even though I'm not happy to have annoying asthma, I did get there with a diagnosis in the end and it does help a bit. I don't know if in your current unmedicated state it would help much (I found being like that confused everything which didn't help matters) but are you keeping PF recordings? Do you have a reliever you could use to do pre-post testing? I say this because this really convinced my current cons who was going through yet another 'sceptical' period with me and saying it was over-perception and I was well controlled even if I did have asthma. I had months' worth of PF charts and reliever usage charts (I use an app called AsthmaTrack) and pre-post reliever charts which convinced him as he said PF and symptoms correlated and it was going up after reliever (I should add that my PF is also pretty atypical as my best is well above predicted best and it's not a brilliant immediate predictor, as in I can be really struggling with an ok PF and be better with a lower one, which he refused to believe at first - but even with being atypical these recordings still helped).

    I'm not 100% sure what to suggest now but think something does need to change. I'd be inclined to give the asthma nurses on here a call - they were really helpful to me when I was struggling with all this as they hear a lot of people talk and seem to be much better at acknowledging the variety that asthma has and that people don't fit in a box - I really appreciated hearing that I wasn't the only one with this issue. They might be able to sort out a plan in terms of where to go from here as they are practically minded as well. I also wondered how you get on with your GP? I saw 2 who were amazing and really helped get me where I needed, and I was able to talk things through with them - they didn't just swallow what the cons said because they were cons and helped with referrals to get me somewhere who would help.

    Hope this helps - hugs. I've been there and it is just so rubbish - it's bad enough feeling ill without the extra of not knowing why and not having anything at all to help with it. Whatever it is, I hope you get it sorted soon, but I'd say do trust your own instincts. I'm not trying to diagnose because this is a forum and I'm not even a doctor and yes, there are other things it could be besides asthma but with me I always had a sense of what was wrong based on previous experiences etc and I turned out to be right. One of the AUK nurses encouraged me with this saying 'you DO know your asthma, you know what you need to be doing, you just need the confidence to do it.'

  • Thank you so much for replying! It's a huge relief to hear from people who have been through or are going through similar situations to mine. This is the first time my asthma diagnosis has been questioned, and I'm finding it rather difficult to deal with. Thankfully, though, all my doctors - GP, respiratory consultant, cough clinic, even breathing physio - are interested in me and my case and want to get me better!

    I'm glad to hear that PF being normal and not wheezing are not necessarily signs you don't have asthma! My PF is always 500, even during a severe attack, due to my oboe playing (yep, Philomela, I remember you very well! So sorry to hear your asthma is playing up and misbehaving for you, I hope you'll find solutions that work for you soon!) I have only wheezed twice in my life as my main 'asthma' symptom is and always has been coughing. My respiratory consultant sent me on to the cough clinic to investigate this, and the cough consultant ordered the histamine challenge, which threw a bit of a spanner in the works for him as I had a positive result! I had reversibility testing done just before the challenge and everything was perfectly normal, but during the challenge I definitely felt 'asthma' symptoms. I was wheezing, my chest was burning, I was coughing like crazy. They gave me nebuliser salbutamol and I instantly responded, got much better on it, so I'm hoping that the cough consultant sees those results and agrees that I do need some form of medication!

    Philomela, it is great to hear you say you felt very tired off the inhalers, too. I have never felt anything like this! I go to bed exhausted, sleep for ten hours, and wake up more exhausted than I was when I dropped off. Then I get the strength up to go downstairs, collapse on the sofa and give my heart and breathing time to settle, and then I'm stuck there for the rest of the day because I have no energy to move anywhere! I'd like to do a test with my reliever but my respiratory consultant asked me not to take it at all until they've worked out why my heart beats too fast. Now my echo was clear I'm hoping he will hurry and order this next exercise test, which should help him pinpoint the exact problem (he is now thinking either my blood doesn't carry oxygen properly, or my body can't metabolise properly, both of which make my heart beat too fast but don't explain the cough!)

    I also like what you say about trusting your instincts. At first, my respiratory consultant mentioned the possibility of there being two different conditions which mask each other in me - so one causes the heart rate/breathing problems and 'asthma' causes the cough/breathing problems. I am personally leaning towards this now, as I definitely feel asthma like symptoms when I meet a trigger (cold air, aerosols, the histamine challenge...!) but I also have this bone-deep weariness and breathlessness and ache in my chest which can at times feel very different from 'asthma' as I've experienced it before.

    One very interesting thing my cough clinic consultant said is that I 'don't have asthma because I react very quickly to triggers. Asthma is more a long-term feeling of being unwell that builds up over time'. I was surprised by this (I don't necessarily disagree with him, though) because I was always informed by my asthma nurse that asthma is a triggered response. So, if I meet a trigger (say, an aerosol deodorant) then I will have an 'asthma attack' and have to go to A&E (which has happened to me countless times in the past!) But what my cough consultant was saying is that is not really an asthma attack - they have to build up over several days/weeks of feeling unwell. I kind of agree with him, in a way, but then I have no idea what causes the triggered reaction where I can't breathe! Anyone else on here have experiences of being told that?

    Thank you very much for the hugs! It's extremely refreshing to hear from other people on the patients' end of all of this. Sometimes I feel like I'm the only one in the whole world going through this and it is SO nice to learn that I'm not completely crazy!

  • You're definitely not crazy, but it really does help to hear from others in a similar position. That kept me going and gave me confidence as I thought 'well if I'm not the only one like this then there must be an explanation'. I'm glad that your doctors want to help you - I really hope the challenge test makes your cons reconsider his approach.

    I have to say that your post is giving me a really strong sense of deja vu as a lot of it sounds like me! I think for me now, it's become easier for some reason to work out what's going on - having the medication seems to have helped it stop being such a confusing mess, though I do still confuse doctors!

    Re the cough: I used to have a constant cough. It's gone away on a day to day basis, which may be partly the physio (apparently it's easy to get into a cycle with coughing so learning to suppress it I think helps), but it comes right back when I'm really struggling, and I've learned that it's a bit of a warning sign, particularly when it ends with interesting wheezy noises (even though I mostly don't wheeze, like quite a few other people on here, I do seem to make these interesting noises when struggling and coughing). When I get (for me) really bad, I will be unable to finish sentences due to coughing - also tightness, but I'll cough and cough and not be able to speak. During this last admission, just getting up to go to the loo would set off a prolonged coughing fit and make my chest tight, and all the nurses would ask if I was ok lol. But this can confuse some drs etc - they say 'it just seems to be this dry cough you have' and don't always see it as an asthma symptom; sometimes they're hung up on whether it's productive and I usually have to say (as best I can) that no, it's not an infection, it's how I present.

    Just a few other points from what you've said:

    -Again, wheezing: plenty on here who don't, or not reliably, too many drs who are hung up on it! I don't usually, my newish thing seems to be just not really shifting very much air when struggling but not all drs seem able or willing to hear or acknowledge that one - they'll say it's clear, but as my old GP pointed out, a wheeze does actually require the air to be moving!

    -Peak flow: has someone checked your technique? MIne is still high (same reason as yours is I should think!) but it used to be even higher before my cons discovered I was doing it wrong. There is a way of doing it which just uses the windpipe and means you get a high result even when struggling. Maybe worth checking as even though it will probably still come out higher than expected, if you are doing it right you should at least have a bit more variation in your pattern which might correlate with symptoms. This really helped me with getting the asthma diagnosis - tbh it was a bit of a mess before. So I'd advise checking technique, practising and then keeping records every day, including better and worse days (I realise right now there isn't much in the way of 'better' but I was only doing it during bad periods and it meant they had nothing to compare it to, whereas now I can show them my week in Cornwall when I was really good and they say 'oh yes...it's not as good now is it?'

    -Heart stuff: I'm no expert so am sure your drs know what they're on about. However I went there with the heart stuff (one resp cons was really worried for a while I had a major heart prob), got given all sorts including an exercise test which I could have told them was a waste of time as I was so breathless and tired I couldn't last long enough to give much of a meaningful result heart-wise. Was told yes picked up a few ectopic beats on the Holter etc and it's fast but nothing to worry about. The second cardiologist I saw (first one just went on about anxiety), when I said I'd actually been diagnosed with asthma, said that that would make my heart beat faster. The medications do, yes, but it's also something they keep an eye on with asthma; if you are having an attack and it goes high that is not a good sign. My GP was a bit worried yesterday as I was a bit tachy and she didn't think I'd really had enough Ventolin to account for it, and I know it can go pretty high when I am hooked up in A&E and they don't like that. So there could be lots of reasons for it with you and obviously they are looking into it, but it could also be part of the asthma. I find if I am using Atrovent (which has less effect on me heartwise) and am doing ok asthmawise my heart will be well behaved and not too fast or giving me palpitations.

    -Re the build-up: hmm. I don't feel I know enough about this (worth chatting through with AUK nurses, might be able to shed some light as they are v knowledgeable?). I have also heard asthma attacks build up, but I think it might depend on the person as some people seem to go from fine to not fine very quickly whereas I am quite a slow burner. I do know that some triggers will only bother me if I am already struggling (eg scents or walking past someone smoking, rushing too much) whereas others, like actually being in a room with smokers, is enough to take me from ok to really not ok fairly quickly. Apparently this is not unusual as when already struggling it's common to be more sensitised to triggers. I've moved house and had real problems from packing, dust (not allergic to dust mites but has been pointed out dust is an irritant) and moved house and not used my reliever all day! I think it can be quite an indvidual response, but without being an expert I'd have thought it's entirely possible to react to some triggers very quickly. Particularly since if you do in fact have asthma, you're currently permanently 'flared' as you have no medication controlling the inflammation so will probably be sensitive to a lot of triggers. I didn't work out the primary/secondary triggers thing for myself until I had medication and therefore better/worse periods for comparison.

    -Chest aches/pains: if you're struggling to breathe, these will happen. I get them when struggling (then have that difficult moment where you have to say yes you have chest pain but not 'that sort' of chest pain, you know what it is etc). You might also be using your accessory muscles at times. And working hard to breathe all the time is tiring!

    Hugs again and I hope this helps and you get some answers very soon. Keep us updated! I wish we still had PMs on here....

  • Music geek, I am so sorry this is happening to you right at the start of your university career. Of course, you can start again, but I am sure sofa-surfing was not what you had planned. I empathise hugely with the breathlessness, and hearing your other symptoms, wonder what other, possibly autoimmune tests, they could do for you?

    Hello everybody, a newbie here. Not wanting to thread jack, but am going through the Not Asthma stuff as well at the moment, and just about to do a Challenge test so though I'd jump right in.. I am VERY like JF, and her story, same age too, and would be curious to know if (JF) your lung function numbers are similar also. Being on max asthma meds, my numbers are all pretty normal, apart from the diffusing figure, which is likewise a little reduced, and presumably also likewise accounts for my breathlessness. Do you know your dlco figure? Have they explained why it's different? I would love any reassurance on this, as t is exercising (worrying) me somewhat, and one consultant says asthma, and the other is scratching his head and muttering about dysfunctional breathing.

  • Welcome, Winnie.

    Music Geek: So sorry to hear about how the school year ended and that you are still struggling. All I can say is hang in there and trust your instincts. You know your body. You know yourself. You have a right to be well and get help from others to get there.

    Some thoughts on my own experiences:

    I'm also going through a tough time with consultants. A year of tests and no one has an alternate diagnosis. If you go by my symptoms and medications I'm severe. If you go by my peak flow numbers, I'd be type I brittle. If you go by evidence of a positive bronchodialator test (15.7% in February lab test, very dramatic improvements measured by home peak flow meter - i.e. changes from 100 L/min to 400+ L/min ) , variability in peak flow, lung volumes or resistance - there is evidence that something objective is off kilter in a way that is consistent with asthma. I cough a lot, but the cough goes away very quickly after using ventolin - that's also consistent with asthma.

    A year of various tests to find alternate diagnosis have failed. If you assume I'm sane, there's nothing left but asthma, so of course the next step in the diagnosis process has been to question my sanity. Yes, I know this is not right (see above - for what Philomena quoted about diagnosing mental illness from physical symptoms - DSM V has made it quite clear that it is ""inappropriate"".) Sigh. It takes a lot of inner strength I think to get through this process.

    I think many doctors have fixed ideas of what asthma should be - but in fact from what I know: asthma presents in many different ways. Some people have slow burns. Some people suddenly flare. Some people can easily connect triggers to flares. Some people wheeze. Some people cough and are short of breath. Asthma isn't really a single disease: its a collection of symptoms that involve variable obstruction. When you don't fit nice little boxes , or as a friend of mine says, ""you are a zebra not a horse"", doctors can get suspicious and have a hard time accepting things at face value.

    Numbers: My personal best FEV1 % predicted is very high for my age and height. It is 120% of the predicted value using ECCS prediction equations, If I'm having an exacerbation and down 15-20%, I'm still above the predicted value. So in the eyes of some doctors I can't possibly be sick and must just exaggerating, stressed, or whatever.

    I also find I have to deal with a certain amount of agism. I am a bit older than you (well more than a bit - 49 :-) ) . The prediction equations have age as a variable. Were I 20 instead of 49, my supposedly fabulous personal best FEV1 would in fact be in 93% of predicted. Because my lungs haven't aged as fast as they are predicted to, I'm treated by certain doctors as ""overreacting"" rather than actually sick.

    To those doctors, % predicted is some sort of fixed number that describes what should be. Other doctors see prediction equations as more like intelligence: what matters is what is normal for you.

    As for what they really are? There are in fact several different prediction equations and they all come up with different predicted values. For example, if I were in the USA they would use NHanes III prediction equations rather than ECCS prediction equations. Instead of my personal best eing 120% predicted it would be 113% predicted. Men and women also have different predicted values for the same height and age - that tells you that muscle strength does have some impact - women don't all have the same muscle strength so clearly what is normal for one person is not going to be normal for another. But even more than that, statisticians have analyzed the variance in reference equations and found that it can't all be down to measurement and sampling error. There is, in fact, a component that is simply dependent on factors specific to individuals.

    Bottom line: these numbers are more like intelligence than the expected frequency of a vibrating string on a musical instrument. If a person with a 130 IQ suddenly lost their analytical skills and began thinking like someone with a 100 IQ, we wouldn't say ""everything's OK - who needs to be that smart anyway"" No, we'd say: this person isn't their normal selves. You have a right to be able to breathe well enough to play your instrument. So do I. If that means we have to be above predicted, to be normal, then that's what we have to be and we should keep looking for help until we find a doctor who accepts that the goal is what is normal for you, NOT what is normal for the other guy.

    Many things depend on the doctor's attitude and what information they are willing to consider. Doctors who are prone to trust patients will look for the numbers that explain the symptoms. Doctors who don't will use the numbers to try to unseat their patient's self perception. If you look at research papers you'll see some researchers saying ""patients have these symptoms: lets find out what physical parameters correlate to these symptoms"" - they will look at a lot more than just FEV1 - they will look at resistance, hyperinflation, closing volumes, tidal breathing volumes, inflammation markers and more. Others won't look at anything other than FEV1 and if that doesn't show a change, they will go ""ah-ha - see you really don't have asthma"" . It doesn't seem that is what is happening to you at all, but don't let anyone do it if they try. There is a pile of research that shows that in asthma, symptoms, medication levels and FEV1 are not all that well correlated. Your symptoms speak for themselves - let them be the starting point. Insist that they be trusted. They are the true facts here.

    This is what I keep telling myself, I'm one of those people for whom problems likely show up some place other than FEV1 sometimes, in my case resistance and lung volumes. I'm finding this diagnosis process is making me learn a lot about where I do and don't have self-confidence. In my better moments I try to use that information to help me work on the areas that aren't as confident. So I find that this process also teaches me a lot about myself and helps me grow. I wish though none of us had to go through this - there are happier ways to learn about oneself an grow.

    Its really painful to have your symptoms and self perception called into question. So again hang in there. Trust yourself and don't be afraid to stand up for yourself and advocate for your truth.

  • Hello Winnie,

    Welcome to the forum.

    I have dug out my consultant letters and to quote from two of them:-

    '... a reduced KCO of 73% predicted in the context of a normal TLCO of 87% predicted.'

    'The degree of deficit in gas transfer is probably sufficient to explain the patient's exertional dyspnoea.'

    During an appt he said I was the 3rd lady he had seen in 15 years with my symptoms, history and test results. We were all in our 40's also. His explanation of my reduced gas transfer was that he believed that some of the blood vessels that should go to my lungs actually bypassed them.

    Interestingly, when I saw a consultant in my 20's, 2 years after diagnosis because the medication was not working to calm things down, she said back then that my heart and lungs don't work well together and that I needed to work on my fitness always to help with this.

    How are your symptoms at the moment Winnie?

    This site has been my sanity saver in the last 3 1/2 years and to hear of others who don't have 'classic' asthma has helped me feel less alone and isolated.

  • I have dug out my consultant letters and to quote from two of them:-

    '... a reduced KCO of 73% predicted in the context of a normal TLCO of 87% predicted.'

    'The degree of deficit in gas transfer is probably sufficient to explain the patient's exertional dyspnoea.'

    Grrrr. I had worse numbers than that and am being told this is in my head? From my February, PFT:

    TLCO 79%

    KCO 68%

    And yes I get short of breath ""just walking"" on and off.

    Other stupid numbers that are being ignored (I understand these indicate obstruction*)

    VA/TLC = 75%

    TLC - VA = 1.47 L

    *Source: ""In normal subjects, Va is within 10% of TLC, with a mean Va/TLC ratio (combining men and women) of 93.5% ± 6.6 (1 SD) (5 ); the Va/TLC ratio has no significant dependence on age, sex, height, or weight (5), but decreases substantially when there is intrapulmonary airflow obstruction and maldistribution of ventilation"" - J. Michael B. Hughes and Neil B. Pride ""Examination of the Carbon Monoxide Diffusing Capacity (DlCO) in Relation to Its Kco and Va Components"", American Journal of Respiratory and Critical Care Medicine, Vol. 186, No. 2 (2012), pp. 132-139. Available at atsjournals.org/doi/full/10...

  • My interpretation of these numbers was that I am 14% below where I should be. And that would mean you are 11% below where you should be.

    Interestingly, my spirometry tests also show my lungs are 39% better than average and classified as supra normal.... I really don't understand why I have asthma symptoms based on this!!

    I have given up understanding my 'non-classic' asthma to be honest.

  • Interestingly, my spirometry tests also show my lungs are 39% better than average and classified as supra normal.... I really don't understand why I have asthma symptoms based on this!!

    Numerous studies show a poor or even no significant correlation between FEV1, symptoms, medication. You wouldn't be alone. Also if you are moving lots of air, but the O2 from the air isn't getting into the blood, it wouldn't help you much.

    My interpretation of these numbers was that I am 14% below where I should be. And that would mean you are 11% below where you should be.

    I take it you are subtracting one from the other? Interesting. Did your doctor say the reasoning of why he subtracted TLCO from KCO? I know there is a lot of controversy over what the predicted values should be and how to interpret these numbers. But I've only ever seen subtraction for comparing lung volumes measured by body plethysmography ( TLC) vs. helium diffusion (VA), i.e. TLC - VA.

    A while back I was curious about where all these numbers came from and also needed a project to work on to learn a new spreadsheet package. I put together a spreadsheet that calculates predicted values from about 14 different sources and lets me compare them along with some of their statistical properties. There is quite a range of predicted values for KCO: my local hospital uses KCO predicted 6.11 for me which puts me at 68% predicted, but other commonly used predicted values would result in a much higher % predicted for me: 85-92% which is certainly a great deal better than 68% predicted!

  • Hi Beth,

    The consultant didn't explain the figures at all to me. I just assumed that's what they meant. I wish I had your knowledge!!

    Before my meds started working I could only walk for 10 mins and then needed to rest for about 45 mins using ventolin and waiting for it all to calm down. I would get extremely out of breath making a cuppa. (I was on Symbicort SMART back then, which actually worked really well for me for about 3 years.)

    That is very interesting regarding the numerous studies that show no or poor correlation between FEV1, symptoms and medication.

    In my 30's when they had fewer tests available, I was told it was my small airways affected which is why I don't wheeze and it takes time for the medication to work. With the newer tests, I have been told that is not the case as the tests show my small airways work perfectly ok. So confusing!

    Also, the latest consultant did say that there is an emerging belief amongst the experts that there are 5 different types of asthma.

  • It is definitely confusing. The more I read, the more I'm convince how little we really do know, despite certain doctors proclaiming certainty.

    As for the five types: that comes from the work of the Severe Asthma Research Program (SARP) in the USA. They've been compiling a database on asthmatics of all levels of severity and control. The five groups come from a factor analysis of that database. The research report describing it, is available here:

    severeasthma.org/uploads/Mo...

    Personally, I'd hold the five clusters ""lightly"" . There is some hope that classifying people according to type will lead to better treatments. However, as can be seen by the fact that between 1/4 and 1/3 of cluster 2 is on high-dose ICS and 10% of 1/2 have been hospitalized, there is still a wide variety of medication needs, symptom severity, and health care utilization rates in cluster 1&2.

    A brief summary of the groups:

    * Cluster 1&2: Asthma started in early childhood through early adulthood. Baseline (pre-BD) FEV1 is usually above 80% predicted. Personal best FEV1 % predicted is usually above 100% predicted. These two clusters as a whole have good control and uses a lot less medicine than the others. However, even in these two clusters there are still people who would count as severe asthmatics.

    - 3 or more controller medications 19% of cluster 1, 29% of cluster 2

    - high dose ICS: 10% cluster 1, 28% cluster 2

    - oral steroids: 11% cluster 1, 10% cluster 2

    - urgent care/A&E/hospitalization in past year: 33% cluster 1; 39% cluster 2

    - specifically hospitalization at least once in past year: 7% cluster 1; 9% cluster 2

    * Cluster 3: Asthma started in 40's. Mostly obese women. Medication levels are a lot like cluster 4&5; health care usage half-way between 1/2 and 4/5. Has a very high rate of sinus problems.

    * Cluster 4&5: Fit the stereotype of severe asthma = low FEV1. The personal best in both groups is below 80% predicted on average. These two clusters are 3-4x more likely to be hospitalized for asthma in the past year and 3x more likely to be on high dose ICS. Cluster 4 has a better FEV1 and is more likely to be atopic than cluster 5.

    As for FEV1, symptoms and medication: the poor/insignificant correlation is largely due to the following: although low FEV1 does increase the likelihood of problems, middling and high FEV1 doesn't guarantee their absence.

  • Hi both,

    THanks for the nice welcome.

    that's very interesting information, Beth. In answer to JF's question about my asthma, I seem to fit categories 1,2 &3, in that I have had mild asthma, kept controlled latterly by symbicort and salbutomal for most of my adult life, since puberty, and only triggered by dander and damp; and now latterly, with menopause, late onset more severe asthma with yes indeed severe rhinitis (puberty and menopause hormones may be significant, as I am not obese). This has been manifested by some more severe than usual attacks earlier this year (and some allergy testing which shows many more allergies than known about, all the usual suspects, plus exercise and cold air triggers), which was not treated very aggressively, had literally to beg for prednisone eventually two months in and so had prolonged inflammation for some time and now which seems to have damaged my lungs somehow, hence the worries about the transfer factor capacity reduction. Persistent symptoms are (productive) cough and bad breathlessness, sore chest and blocked nose. Nothing on CT scan except some minor atelactasis (collapse), which I am told is quite normal.

    Both of your TLCO figures are good and that squares entirely with the asthma diagnoses, even if something is affecting the alveolar volumes, whereas I seem to have the opposite, a slightly reduced KCO at 72%, but a dlco of 60% on one test and 67% on another.

    So, like musicgeek, they may be trying to find out what else is wrong with me, but I am not sure why an asthma challenge is necessary for either of us, as patently, we have asthma, and the question may be whether there are complications or something else plus asthma.

    I am hoping not, but the persistent breathlessness, like musicgeek, is worrying.

  • Thank you everyone! This thread is super interesting to read. I don't know anything about the different figures so reading how knowledgable you are (Beth especially) is really useful.

    Winnie I know exactly what you mean about dealing with persistent breathlessness. It is the most exhausting thing I've ever dealt with! Like some of you were saying, I can make it maybe 10/15 minutes up the road before I have to stop and rest for about half an hour, as long as the ground is flat. I can't deal with hills or stairs very well at all. I don't know about you, Winnie, but for me the challenge test was ordered because my consultant at the cough clinic was absolutely positive my cough signalled something else, definitely NOT asthma, because I don't have any of the 'classic' symptoms (e.g. My lung function tests are all higher than expected, I don't wheeze, I didn't get better when on steroid tablets and high inhaler doses). Of course, I had a positive result, so that will have confused things rather a lot! I'm seeing him again Friday morning and will be extremely interested to hear what he has to say now!

    Another slightly strange thing in my case is I had allergy tests done on my blood (not had a scratch test) and they showed I wasn't allergic to anything, which is one reason that my asthma diagnosis was originally questioned. I do have reactions to triggers though - cold weather, aerosols, smoke, occasionally dust - so I've always been a bit confused by that. With regards to the numbers, mine have always been 'too good' for my age/jheight/weight, I'm very small and look quite weak, so doctors are always shocked by how much air I can blow. It's because of my training as an oboist, so 'bad' scores for me will still look too good for my age, which makes doctors question if I'm actually ill or now, regardless as to whether I can breathe! So Beth it is a relief to hear you say you have issues with this, too. I sincerely hope the doctors start believing what you say and not going down the 'mental' route. We do not need to deal with our sanity being questioned when we are already struggling so much! Thankfully my consultants have never gone down this route, especially since the exercise test I did highlighted that yes, something is definitely not working properly in my body.

    Thank you all so much, really. Seeing other people who have had their diagnosis questioned or who don't fit the typical asthma stereotype has made me feel much less alone (and less crazy!) I am off back to the cough consultant tomorrow and I'm looking forward to his reaction to my challenge test - on the day I didn't get to properly look at the results, all I know is I DEFINITELY had a positive reaction, so it will be interesting to see what he makes of the numbers! I sincerely hope we all find the answers we need soon enough (and doctors who will listen to us!)

  • Music geek have you had a high resolution CT scan to rule out other respiratory issues which could be causing your symptoms?

  • Good luck tomorrow Musicgeek! I hope you get at least some answers!

  • Musicgeek -good luck tomorrow, let us know how it goes! Crossing fingers for you!

    And just so you know, my allergy blood tests have been negative too. However I do seem to react to some things and my cons said well they're not perfect! I also had this weird thing where last year my total IgE level was insanely high but this year it's low/normal? Confuses hell out of cons hehe.

  • Hi again everyone,

    So I had my appointment. My cough consultant went through the challenge test results with me and explained that I came out in the 'mild' category, and as I have already been on very high inhaler doses and steroid tablets and they didn't work he is still almost certain that I don't have asthma. I asked him if I could still use my blue reliever inhaler for when I meet a trigger and at first he was reluctant, but he asked me if it helps and I said yes, in a trigger situation anyway, so he finally agreed. He then said (and I quote) 'well, it's obviously a very difficult case and we are all scratching our heads a bit'. Not entirely sure how I feel about that!

    Nursefurby - I have had a CT scan done which was clear, however at my appointment on Friday the consultant said there was a possibility of doing another one with a dye to see how well my lungs are working, but he said for now they don't want to do that with me because of the radiation affects and my age, and they would rather test for other things. He also mentioned another bronchoscopy, this time to take biopsies and samples of my cells to check for eosinophilic bronchitis, but again he would rather test for other things first. To be honest, I am relieved about that, as my first bronchoscopy was horrid!

    My cough consultant is going to write to my respiratory consultant, who oversees all my testing, and recommend a tilt table test. My respiratory cons also wants to do an invasive exercise test, to see what happens in my blood when I exercise. Plus, my cough consultant listened to my heart and heard a possible murmur, as well as commenting on how fast it beats, so they want to revisit my echo results to check they didn't miss anything. *sigh* So lots more testing for me!

    Thank you all again for sharing your stories with me. Although it looks like I don't have asthma, hearing that many of you have similar issues with mis/undiagnosis has made me feel a lot better and a lot less alone! I guess I shouldn't be posting on this forum too much now, however, as it turns out I have probably never had asthma hehe. Thank you all again and I hope everyone struggling gets well soon!

  • Thanks for updating us musicgeek - glad they are still on it but must be so frustrating for you not to have any answers still and more tests! Really hope you get something sorted soon and they work out what's going on.

    I don't know about anyone else, but I wouldn't mind if you want to pop on and update us or have a bit of a rant. It's frustrating to be ill like this anyway but even more so without a diagnosis as it also means it's harder to find people to connect with who are going through the same thing (there's no forum for 'people with undiagnosed breathing difficulties'). I kept using this forum during the 'undiagnosed' periods as people on here still had similar symptoms and it helped stop me going round the bend, plus I learned more about it all. After all (as another lovely member said to me after I said much the same thing ie I shouldn't be on here), whatever the cause we have all known what it's like to have trouble breathing and for that to affect our lives! I'd just hate for you to feel like there's no one you can talk to about all this just because you've been told you probably don't have asthma.

    I also have to say I'm glad your doctors have been nice about it so far. I hope that makes it a little easier: mine were much more on the end of 'this isn't anything obvious, so you're fine, just panicking, go away' when I wasn't fine at all. Having them be keen to get to the bottom of things at least suggests they know that they need to and you can't carry on like this; I hope that's helping a bit.

    Good luck with all the tests - and don't be a stranger (from a fellow musician).

  • There is no requiment to have asthma to post on here - and whilst you may not have asthma, your body seems to do similar things to an asthmatic body - so i'm sure you'd feel supported on here anyways!!

    Also - when on very high doses of meds and i came out in the milder category - the cons said it made it even harder coz at that time he wasnt sure if my symptoms were all casued by asthma, but said that complicated things a bit as clearly i had asthma to some degree, it just was unclear whether it caused all my symptoms!!

    Tests can be frustrating after a while, hope you are managing to stay focused on the end goal (stuipd lungs being less stupid) and patient for the end result. it sounds like your cons is being quite good and thorough - a lot of people seem to find that when the asthma diasgnosis is questioned, it is straight down the anxiety route - which it doesnt seem your cons has taken which is a real positive!! good luck, and if you dont feel like posting much on here anymore do keep us up to date - id like to know how you are getting on :-) x

  • Hi musicgeek,

    Feel free to continue posting when you feel like it, we would love to hear how you get on and not all of us are 'classic' asthma as you now know but the people on this forum are so supportive and knowledgeable. Good luck with all of your tests, bronchoscopies are not pleasant are they? I kept focussing on that cup of tea they would bring when I could have one!

  • Thanks for updating us. I do hope they find something that is (a) easily treatable (b) not asthma - anything that has a solution would be marvelous for you.

    Whether this turns out to be asthma or not, I do hope you will keep us posted. It isn't your asthma/not-asthma that we've made friends with - it's *you*.

  • Aww everyone, thank you so much! I would love to keep posting on here, I just don't want to be wasting people's time. Truth be told, this forum has made me feel more sane than I have in months - when symptoms are constantly being assessed and reassessed and changing every day, it's very hard to keep focused.

    JF you're so right about the bronchoscopy - the cup of tea was the best thing about it! Everyone was lovely, but gosh it was painful. The longer I can avoid another one, the better!

    And Soph, thanks for letting me know about your challenge test! I'm sort of glad to hear that, because my consultant said something very similar in that it doesn't completely rule out asthma and really just complicates issues. I am very lucky that my consultants are very thorough, though, and quite keen to test me and get to the bottom of my case!

    Philomela, I'm so sorry you had to go through the whole 'anxiety"" thing (and Beth, I think you mentioned this too?) I did have it queried right near the beginning of my investigations and I was sent to a breathing physio who thought I had hyperventilation syndrome brought on by anxiety. But I pointed out that to be able to play oboe at my level (4/5 hours a day when I got ill) I literally COULDN'T hyperventilate because my breathing was too well-trained. So for months I had people saying 'but your breathing is so good, you can't have a breathing problem!' Luckily, my respiratory consultant has always been very interested in my case as I present with very unusual symptoms, so he has always been keen to get to the bottom of it. And now I don't see a breathing physio at all as my exercise test showed that yes, something is physically wrong with me, but my breathing patterns and lungs are better than normal, so it can't be anything to do with that. Rather confusing, but thankfully it took the stress/anxiety element out of my doctors' heads!

    So now I'm waiting on (yet more!) testing and still struggling to manage symptoms day to day. Getting breathless just exhausts me so much and I am really fed up of it to be honest. I'm sure that is something we can all relate to! Thank you all again for your support, you really are wonderful people. I will stay in touch!

  • I'm very glad to hear you're going to stay in touch and keep us updated. I hope they get to the bottom of things, asthma or not, so that you can get the right treatment and get better soon. x

  • Good to hear back from you, Musicgeek, and that you have got such a good team of medics on your case. Ditto what everybody else has said about keeping in touch - you do have asthma after all! :) Hope it all gets resolved soon.

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