Head against a brick wall

Had spirometry today, and readings were above what they would expect for someone with asthma. Tried to explain that lung capacity has always been good since young, and more so in recent years due to levels of running and exercise I do. Nurse said my cough and raspiness didn't sound right but that the readings didnt indicate asthmatic issue.

Feel like banging my head against the wall with this. My chest is constantly tight, the cough is there every day, worse when I exercise, I am rarely productive but feel a constant weight over my chest. I have to wait now to see the doctor second week in April. I know i'm not feeling right but what on earth can I do to get them to listen to me and see beyond the 'normal' readings? Starting to really get me down.

:o( :o(

16 Replies

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  • I had this a few times especially with new docs.... I used to ask if I could do an excercise test on a treadmill and that used to get docs worried fairly quickly and definately proved I had asthma... Have to admit they won't let me do it now for safety reasons...

  • My son's lung capacity is above average (for his age, height etc) despite asthma, but consultant told us that is not uncommon.

  • Definitely keep going back and describe your symptoms, maybe keep a symptom diary. Don't be put off by normal readings, go by your symptoms.

    Angievere, that is really interesting what the consultant said, as I also have higher lung capacity for my height/age etc.. I put mine down to lots of long distance walking when asthma controlled.

  • Seatea, I could have written that post! I completely understand the frustration - I had that for SO long (in my case I think it's because I've been singing and playing the oboe for so long). I have finally managed to get a consultant who listened to the fact that my best is insanely high (700 now, was 670 and went up for some reason) and accepted that that means readings in the mid-550s don't mean everything is fine.

    Do you know your best? I found mine out after taking loads of reliever (I have NEVER got up there without it). If you do know it it might help as you can point out that they shouldn't be taking your predicted as a guide (my predicted is 470...if I blew that I'd be getting help pronto).

    But tbh pf with me is not really a great indicator and may not be with you either; however a lot of medics/nurses can take it as the be all and end all - even though an AUK nurse said if the small airways are blocked it doesn't really show up on PF.

    LIke JF says I'd keep a symptom (and PF) diary as they should be looking at the pattern and variation as well as numbers. Plus the symptom pattern is a giveaway - if it's worse in the morning and at night, for instance, that's classic for asthma.

    Maybe ring the asthma nurses on here and ask if there's any way you can explain the problem and ask them to look into it a bit more? Good luck and I really hope you get somewhere as I know how frustrating it is.

  • Seatea, I could have written that post! I completely understand the frustration - I had that for SO long (in my case I think it's because I've been singing and playing the oboe for so long). I have finally managed to get a consultant who listened to the fact that my best is insanely high (700!) and accepted that that means readings in the mid-550s don't mean everything is fine.

    Do you know your best? I found mine out after taking loads of reliever (I have NEVER got up there without it). If you do know it it might help as you can point out that they shouldn't be taking your predicted as a guide (my predicted is 470...if I blew that I'd be getting help pronto).

    But tbh pf with me is not really a great indicator and may not be with you either; however a lot of medics/nurses can take it as the be all and end all - even though an AUK nurse said if the small airways are blocked it doesn't really show up on PF.

    Could you keep a symptom (and PF) diary as they should be looking at the pattern and variation as well as numbers? Plus the symptom pattern is a giveaway - if it's worse in the morning and at night, for instance, that's classic for asthma.

    Maybe ring the asthma nurses on here and ask if there's any way you can explain the problem and ask them to look into it a bit more? Good luck and I really hope you get somewhere as I know how frustrating it is.

  • Hi

    As others have said it is important to go by your personal best Peak Flow. Years ago when I was first researching online I found info about establishing what was your personal best. Even if advice has changed I think it would still work. Basically the info said to take your peak flow sometime in the middle of the day (to avoid the morning dip or the evening dip if you are a double dip person) and take it about 20 mins after a couple of puffs of Ventolin. Do this over the course of a few days to get a good idea. Also if you are having a particularly good day take a reading then. Even though I have severe unstable/brittle asthma I can still achieve a peak flow of 550 at a good time, which for my age and height is above my predicted of 410.

    Best Wishes

  • Yes,

    I also know the feeling and it is rather frustrating. I was told it's not possible to have better than 100% of predicted?

  • My boss once gave me his blessing to take the afternoon off to go to the doctor cos i'd been coughing constantly for the previous 2 days (mind you i did have a colleague / friend threatening to walk out there and then and march me to the dr if i didn't go voluntarily hahaha)

    Anyway, wouldn't you know it was the afternoon my own dr was shut so i went to the walk-in centre who did my pf / O2 sats which were within 'normal' even though i couldn't speak without a having coughing fit!!!

    They got me an emergency appt with a random dr who i guess was the equivalent of OOH even though it was only mid-afternon. Well that dr listened to my chest - which unsurprisingly was clear (!!!), he also re-did pf / o2 which again were 'normal !! He said oral steroids wouldn't do me any good, so to double my (already doubled) preventer inhaler and use the blue one up to every 2 hours. He also gave me the warning that if the effects of the reliever started lasting an hour or less then to get to A&E / OOH. Thankfully it didn't actually get that far though i can't remember how long it took to get back to my own normal!

  • Thanks everyone for your replies, it is so frustrating. Gonna be a bit of a waiting game now till I see the doc in two weeks, but will definitely keep a diary. Ran at lunch today and had my first cough free run in absolutely ages.. maybe because it's warmer? I don't know, i've not seen a pattern yet but maybe one will become apparent.. :o)

    Catherine

  • My spiro tests are always very good then when I go in to see the consultant a few minutes later they always remark on my wheeze! None of it makes sense to me and it is the same with peak flow I can feel awful and my result is not too bad but I can feel well and the result is low. The whole thing is a mystery to me. Yet I am a type 1 brittle asthma so it is anyone's guess.

  • I haven't read all the other answers so sorry if I am repeating something, but I was told at my asthma clinic that for people who are very active/run/cycle etc, that their level of illness / lack of control with asthma can be masked by their level of fitness. Because you are fit your lung capacity will be good and therefore you can appear more well than you are or be able to tolerate symptoms better than someone who is less fit. That's what my consultant explained to me, not sure if I have explained it very well though. Persevere. Ask for a second opinion if you're not happy too - you're well within your rights to do so.

  • Thanks EmC, can you send your consultant this way to tell mine that? I cycle to work. It's a good point and don't think it has been mentioned already in this thread.

  • very well explained EmC, i shall have to remember that.

    hope you get better soon Seatea, it's rubbish feeling rough for a long time especially when they don't seem to listen.

    L x

  • making you wait two weeks when you are bad is ridiculous.i know it's a hassle but it may be a good idea to get yourself to the e.d. they should sort you out and a second opinion never hurts.

  • So the doctor isn't sure I have asthma. Well. She said I may not have 'normal' asthma...whatever that means. She's given me a preventer inhaler now and referred me for a chest xray so its steps towards something, although what remains unknown. My spirometry readings she said were normal..I did challenge the improved lung capacity due to exercise but that kinda hit that wall of deafness.

    Just hope the preventer helps, the xray does something. I just want some answers, and to stop coughing and be able to breathe better when exercising. Time will tell I guess :o)

  • Seatea, you sound more and more like me...welcome to the 'weird asthmatics' club. ;) I've had all of this said to me many times, including the spirometry etc above normal - it's only recently that they've started to look below normal (though still not that low) and my PF is still well above predicted and doesn't change much with symptoms.

    At least the GP is starting you on the preventer though - I hope it helps, but if not you can take it from the 'weirdos' on this forum that you should keep pestering them till you find something that relieves your symptoms. It might not be asthma of course, but the 'normal' readings don't mean it's not. They love doing chest X-rays (I think they have to just in case something else is going on) but if it is asthma and you have no infection will prob. be normal.

    Is the GP ok at listening in general? She sounds better than some I've heard though not helpful that she didn't consider what you suggested about the exercise. Is there a GP who's interested in sports medicine in your surgery? Mine is, he's not officially an 'asthma' one at all but because he's into sports he treats a lot of athletes so understands about exercise and asthma which is useful (I am lazy as hell but I do have exercise-induced asthma; my 'super lungs' are from singing and oboe-playing.)

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