I really want a medical professional to explain to me how they know I have asthma.I was diagnosed at 2 years old, after I suddenly stopped breathing after a cold. I know I was tested (negative, fortunately) for other things such as Cystic Fibrosis and there's a part of me which wonders whether the doctors at the hospital just picked asthma as an easy answer.
My life since then has been a list of different asthma meds, including a course of prednisolone on average every year. I assume the tightness in my chest and the breathing difficulties after a cold are asthma, but more than one dr has told me it's not an asthma attack when there's no wheeze. Most recently, a genuinely lovely A&E dr thought instead I might have a blood clot because my resting pulse was >130bpm with shortness of breath but no wheeze..
Was anyone else diagnosed as a child and then desperate for someone to explain to them how they know it's asthma? Is it a stupid question to ask at my next asthma review?
Thanks in advance ☺
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porthos06
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I was the other way round, I spent 20 years being considered to be a cardiac patient. They always discounted asthma as I did not wheeze. I had periodic chest pain, just before episodes of breathlessness, confused ecg during attacks, and mega high blood pressure.
My condition slowly worsened, becoming more and more acute, when the cardiac department diagnosed me with asthma, with no declared reason, other than that they had done nearly all cardiac tests known to man.
How do I know it is asthma.
Well my peakflow when first tested was 250 to 300 and stairs were very difficult, walking to the gp surgery was difficult. Within six months, ventolin, then clenil, then fostair, had got my peakflow up to 660, and I could walk again, up stairs and small hills.
My asthma is still worsening, so the attacks are getting more brutal. So there is probably something other than just asthma going on. My consultant is doing the ct scan and spirometry to find out.
So to me, you know you have asthma, if your breathing responds to the inhalers they give you. My inhalers, outside my attacks, have given me my life back.
The technical answer if you are unsure lies in spirometry, done before and after they have given you inhalers. You could ask for this to be done.
They may want to do a feno test, this works for me, but not for others.
If you think there is a lung condition other than asthma going on, you need to ask for this to be checked for.
As to doctors who said you have to wheeze to have asthma, my asthma consultants would all strongly disagree.
Your question is definitively not stupid.
Ring the asthma UK helpline, they will help you put your question into doctor speak, and help you work out what you are asking for.
Thank you so much for your reply It is interesting to see it from the other side - I have never heard any indication from anyone that I have anything other than asthma, but in a way I wish I had because I'm so hungry for answers!
I was diagnosed as a child, at about 4/5 years old, and at the time had a strong wheeze after exercise and during an attack. It "went away" for about 35 years then re diagnosed when I went to the doctor because I was coughing at night, the cough was waking me up nothing worked but no wheeze at all so he had checked my peak flow, gave me some ventolin, rechecked my peak flow and found a good improvement and enough improvement to decide it was asthma waking me up and causing the cough. If you have a peak flow tester try testing yourself before and after ventolin waiting 15-20 mins after the ventolin for the retest and see if there is an improvement.
Mine never went away but it was largely controlled during my childhood and adolescence. I have noticed the improvement in peak flow after taking my reliever, but I suppose I keep questioning whether that would have the same effect for anything else, ie chest infection.
as I understand it ventolin will only improve peak flow readings if you are asthmatic and the improvement will be greater if you've not used your steroid inhaler for a while, if the steroid inhaler is doing its job properly there will not be a big peak flow improvement. That said I'm happy to be corrected by someone with more knowledge if I'm wrong!
That makes sense, thanks! I would love to find out more about my asthma so I fully understand it - it's a nightmare trying to field your way through everything, especially when my symptoms aren't always typical...
I was diagnosed at age 3, very controlled on a rigorous regime then GP felt at age 17, because there was no wheeze I wasn’t asthmatic. He sent me to a consultant for tests who agreed no asthma, I questioned was it not because I was controlled on inhalers so we did a test. I went a week without any medication and went back for spirometry, lo and behold all signs pointed to being asthmatic (and admitted due to significantly low oxygen levels). I’m now a chronic severe asthmatic due to new GP’s messing around with meds and struggling to get back that level of control. I don’t think we should base Asthma purely on wheeze
I really feel for you on what you're saying about messing around with meds. I was on Relvar for a year or so and had absolutely no exacerbations but then got put on Symbicort and have had flare-up after flare-up since...
Hello, I developed asthma at age 21. I had a background of severe hayfever so wasn't a big leap. Spring tree pollen has never agreed with my lungs. I don't wheeze either so it took years for proper diagnosis and treatment. Some doctors 'got it' and others haven't. It was only when I ended up in hospital after an attack that both doctors (and myself) really took things seriously. My peak flow doesn't move much either but at that time it went down to 400 when my personal best is near 550. Now if it dips below 500 I usually need a course of steroids. Even now I sometimes doubt myself but ultimately I respond well to treatment so sticking with the asthma diagnosis.
Your asthma sounds a lot like mine - the no wheeze and little change in pef is a terrible combination. I'm lucky in that my GP understands this but everyone else tends to tell me I'm absolutely fine (or, when I'm clearly not, they look for something else like the non-existent blood clot!)
I’m a doctor with a special interest in asthma. A key fact is that there is no single test that confirms asthma diagnosis - tge diagnosis is made clinically, by someone with asthma expertise, based on medical history, test results and response to treatment.
The others are correct that wheeze doesn’t have to be present to diagnose asthma.
However asthma is defined as a disease characterised by reversible airflow obstruction - which means that your air passages get tight during flare-ups of asthma - and tgen this improves - either spontaneaously or after treatment. lung function tests like spirometry or Peak expiratory flow ( PEF) are used to demonstrate airflow obstruction. So it’s important to have tests to confirm reversible airflow obstruction. Either spirometry before and after salbutamol or a PEF diary card - best of three tests morning and late afternoon for a few weeks.
12% change in FEV1 on spirometry confirms reversible airflow obstruction. And excessive variability in PEF of 10% in adults or 13% in children also confirms reversible airflow obstruction supporting a diagnosis of asthma. ( according to ginasthma.org)
In fact there is evidence that by the time wheeze is heard there is already about 30% obstruction of your airways - so you could still have over 20% variability in airflow obstruction without wheezing - there is research in children and adults on this.
Other information that supports asthma diagnosis is a family history of allergy or asthma; a personal history of eczema or allergy, or symptoms suggestive of asthma tgat come and go ( cough, wheeze, shortness of breath or chest tightness- ie any of these, not just wheeze). In addition , improvement with asthma treatment also supports asthma diagnosis.
FENO is a test for inflammation which may or may not be due to asthma.
The advice to speak to an asthma trained nurse is a good one and perhaps ask your GP to refer you to a specialist respiratory doctor, preferably one with expertise in asthma.
Brilliant, thanks doc! I have been asked by dox a few times how do I know I have asthma, my reply is I’ve had it since I was 4, so know what it feels like! Peak flow test no use on me, have never been able to blow hard enough to make a dint in it and now kyphosis bad so I’m all squashed up inside, so barely registers atall. 🙄
And would add you don't necessarily have to have a wheeze at all - I'm very much not alone in having severe asthma attacks without one, at least on the way in. I can't speak for others but it would appear I bypass wheeze to go for reduced air exit and then air entry. The only times I know I have wheezed are on the way 'back up' when the treatment has started to work.
It seems based on my and others' experiences to be overly common to get 'you can't be having an attack if you're not wheezing', even if they accept the diagnosis of asthma. Not a particularly safe approach, but then the UK's asthma stats overall aren't wonderful as I'm sure you know (I'm aware not everyone is doing no wheeze sats ok so you're fine etc, but too many do just from personal experience and those of friends with severe asthma. I have a medic friend with severe asthma who has found it quite scary how little some of her fellow doctors know about asthma).
Porthos06, an asthma attack can also increase your heart rate, independently of any treatment - I and others have found the heart rate often goes *down* after nebs etc because you're not working as hard to breathe when the treatments are working. I've had the 'maybe you have a clot' a few times too but I never actually have, though I get why they need to check. Problem is that they often find no clot and then instead of saying maybe it is asthma, will decide everything is fine.
Oh, you are absolutely spot-on about the response after finding there's no blood clot... As soon as my tests came back clear, I was packaged off home with no support 🙄
I have a real issue with admitting when I don't feel well and there's really only my GP who seems to believe that I'm ill when I say I am, because my default position is to get very frustrated with myself (although I do rein it in for others!) 😂 This isn't a good move with drs who already feel I'm not meeting their criteria for an asthma attack.
It really helps to have all that written out - and I can identify from what you've said that I most likely do have asthma... I just wish that I could have this conversation in person with someone!
Sadly, I did get referred to a "specialist" and had my appointment yesterday. It was a disaster! I was expecting to get all sorts of answers but instead I was just told that I didn't need the referral because I hadn't had a flare-up since September (the referral itself was from June!) Spoke too soon of course, because I had an asthma attack last night and have been feeling rubbish all day with it...
If you have another appointment with the specialist or request another one, have you looked at recording all your symptoms or maybe even get someone to video you when you are bad to show them? I was diagnosed when I was 5 had a wheeze etc. Im now 30, the last 3 years have been a disaster with my asthma and chest infections. I recorded every attack, used an app when I had my blue inhaler, which was a lot and had a lot of arguments with doctors over the years. I also recorded every course of steroids, antibiotics and a&e trips to give them the full picture. My own gp decided i wasnt asthmatic because suddenly steroids wernt helping, because at that point it was a chest infection. But they wouldnt see me because of the lock downs. On many a&e trips i had to argue that i barely wheeze in an attack anymore and my peakflow doesnt go down, they dont often believe me but will give me a nebuliser and steroids, and low and behold i am better. They seem to ignore that i am a severe asthmatic and go to a severe asthmatic clinic and i have just started a new biologic injection because they cannot control it anymore. I asked my specialist to explain to me am i actually asthmatic because my gp is always saying im not. He explained about the fact that when i was younger the steroids helped, as i got older it changed, but through covid the chances are they didnt know if they were treating asthma or infections so steroids may not have helped. Bloody tests and spirometry showed i was and the fact they had to increase my inhalers as i got older as it was getting worse. Since i had covid a year ago its made it all a lot worse. My feno score is low, samples never show an infection because they think im not coughing up the bit at the bottom of my lungs. It almost felt like their was no proof. But my spirometry showed a slow decline over the last year and my blood tests always showed infection and inflammation proving asthma and infection. When i go to a&e my heart rate is usually high 130 to 150 and my blood pressure can be through the roof. Usually because of to much blue inhaler and the stress of an attack. They say its normal for it to go up when your ill and its the effect of the inhaler. Sorry for the long reply, just dont give up getting an answer. You know when your ill and if you can push to get appointments and help and ask them all the questions you need to understand your healh. If i didnt nag the hospital repeatedly for months, i would have got nowhere and im glad i did, because it makes you miserable not knowing the answers when your ill and you just need the right help. Hope you get your answers also, if you feel to nervous to ask, write your questions down and give it to them, that also worked for me when I tried to tell them how it was ruining my life and i desperately needed help, i just couldnt say it.
Oh, that sounds horrible 😢 I recognise lots of what you're saying though. The high heart-rate is a regular feature with me - resting at 144 this morning when I was at the out-of-hours, but the fact it's combined with 99/100% o2 means that medics generally aren't concerned...
I also really relate to what you're saying about being able to write it down and not say it. I have a tendency to be very matter-of-fact about my symptoms and I think people assume that I'm not really experiencing such bad flare-ups as I am. Best experience is always with my own gp and asthma nurse for that reason - beause they know my little foibles 😂
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It is interesting to see it from the other side - I have never heard any indication from anyone that I have anything other than asthma, but in a way I wish I had because I'm so hungry for answers! 
fostair 100/6 how long until you noticed an improvement? 
What would you say to her?
Consultant doesn't believe my diagnosis 
recently diagnosed asthma
