How to tell severity without peak flow?

HI everyone,

I'm new on here and still not 100% sure if I even have asthma; I'm waiting for an appt with consultant (which it's taken them nearly three weeks and many nagging phone calls from me just to try and book, still don't know when it will be but apparently could be 2-3 months - arrghh!)

My question is whether there's any way to tell, objectively, how severe asthma is if your peak flow is consistently not just normal but better than expected even when you can't breathe properly.

Of course, this might mean I don't have asthma at all; I also haven't responded to Ventolin, Serevent, Clenil, Symbicort or Bricanyl.

I started getting breathless (again, had very mild childhood asthma) in 2009 after I had what I'm pretty sure was swine flu. GPs thought maybe asthma, puzzled, ended up with lots of hospital appts and tests, excellent spirometry (I have been singing since I was 6 and playing the oboe since I was 8 which GP thinks could explain this), normal X-ray, ECG, echo, VQ scan etc. They thought it was hyperventilation and discharged me with a couple of physio sessions.

In October of last year (2010) I got a cold. Basically lots of coughing, and I haven't stopped since. Also have feeling like I have a chest infection a lot of the time - it feels irritated, and sometimes like I've just breathed in cold air, but no chest infection and it sounds normal apparently (been given antibiotics, do nothing). And the breathlessness, which was ok if not pleasant before, has got way worse over the last month or two.

Given what people have said on this forum and elsewhere, I can see I'm luckier than many - I can still work, sing, walk at a reasonable pace (all of them make me breathless, but I am some kind of masochist and at least I can do them). However, stairs really get me out of breath, as can getting dressed, housework (can do it, just about) pulling the bin (binmen keep leaving it at end of street, grrr) and often just sitting doing nothing. I only usually wheeze in the evenings and at night though, so of course unhelpfully never when I've been to the doctor's.

Basically I was wondering if there is any way to tell how bad it is when your peak flow doesn't help. As I said, might not be asthma, but given what I've read I think it's at least a possibility. Given that I've been fortunate and haven't had to stay at home or give up work, even though it's massively uncomfortable, I'm worried that they'll decide it's 'routine' and shove me in in a couple of months. I can see that there are people who have it worse, but I'm worried simply because I have no way of telling if it's just unpleasant or could be serious, or how I might know if it's getting worse and what to do (short of a really severe attack which I would probably notice) - if it is asthma, I have no way to either monitor or control it at the moment.

I'm sure there is an element of hyperventilation in what I experience but given the cough and the chest irritation lasting for 4 months, I refuse to believe that's all.

Anyway, sorry for such a massively long first post! Any advice welcomed.

Thanks!

[Annista]

Hi Philomena

I can truly sympathise about the coughing - I started at the beginning of October and am still at it, although it is gradually easing off. My GP doesn't seem to think it is much of a problem (he should try coughing continuously for 45 minutes at a time and see how much he likes it!).

I have no clever answer for your question, but I do think you should listen to your body - it it is telling you you're not well then believe it because it seems as if this is the only real indication you're going to get at the moment.

I'm very new here myself and I'm still reading past posts and feeling very lucky that my symptoms are, for the most part, pretty mild. I'm finding that the feeling that I'm not alone helps a lot and I hope you are finding the same.

Good luck with it all and let us know how you get on.

Annista x

[Hidden]

Good to hear from you!

Hi Annista,

Thanks for your reply - it is good to hear from someone in a similar boat. My GP (well, not the first one I saw) has been more sympathetic - one gave me a prescription for some codeine syrup and said 'even if we can't get rid of the cause, at least we could stop you coughing all the time'. It didn't work, but nice of him to try.

I'd advise persistence if you feel it's not getting better, and maybe trying a different GP in the practice if the one you saw hasn't been helpful. Mine is largish which is lucky, and since I've been registered there for a few years in total (moved away, then moved back) I've worked out which ones will actually listen to what I say and which ones are more dismissive. I had to go back a lot and keep saying 'still coughing, please help' though and try various things so if you don't feel it's getting better, keep trying!

Philomela x

[Hidden]

Hi, I really hope you get your appointment through soon and get some answers.

In terms of telling how severe asthma is with out peak flow, you have to go by how you are feeling and your symptoms. If you are very breathless, are wheezing a lot or have other worrying symptoms that arn't responding to your reliver inhaler then you should get medical help regardless of your peakflow.

Normally peakflow is a good indication of how things are in your lungs. You can work out your predicted peak flow based on your hight and age, but this is just a prediction and everyones peakflow varies. The only way you can find out what is normal for you is recording it every morning and night. If you dont already do a peak flow diary you should really consider it as it really helps you and your doctors to see how you are and if you are responding to new treatments. You can order a peak flow diary free from asthma uk.

It sounds like your symptoms are still not in control if they are affecting your life this much- ideally you should be using your reliever inhaler less than three times a week. There are still lots of meds that you can try so keep going back to the GP if your cons appointment takes a while to come through. There are lots of different preventer inhalers that you can try everyone is different and it is just a case of finding what works for you. Another commonly used one is seretide, which is like symbicort and has both a steroid and a long acting reliever in it.

If you want some advice and someone to talk to i would really recomend calling the asthma uk advice line where you can talk to a trained asthma nurse. The number is 08001216244

Hope this helps and you start to feel better soon.

Lorna

[Hidden]

Hi Lorna,

Thanks for your reply; I might well try the asthma nurse advice line especially if I have to wait for ages to see the consultant. My GP hasn't prescribed anything more as she doesn't know if it is asthma and is waiting for the cons opinion before she tries anything else as she thinks it's just a stab in the dark otherwise (I have confused her massively with my possible asthma), but this has left me without any kind of medication at all! Both Ventolin and Bricanyl (which worked when I was younger) do nothing as relievers. I think I have tried Seretide already if it's also called Serevent (salmeterol xinafoate).

I might try the peak flow diary again (did 2 but last year, showed 'not asthmatic pattern') but problem is it's always above 500 even if I am sitting there wheezing and breathless, and at my best I can do 600 (maybe worth it to show my best is way better than they think). And with the good spirometry, the previous consultant just kept saying 'well, can't be asthma, you can do 600 peak flow as well' even though every time I mentioned my symptoms they'd make me do another peak flow measurement because it sounded so much like asthma (mind you, spirometry was still huge effort to do - anyone else find spirometry hard even when results ok?)

I obviously have subsconscious longings to appear on House by making it unnecessarily complicated!

xx

[Hidden]

Hi Philomena and welcome,

I can guess you are feeling very frustrated. I too have had excellent spirometry with not much improvement with broncodilator and my PB PF is 550 which is way above what it should be, however I get lots of the typical asthma symptoms which are relieved with Ventolin. My asthma nurse said what is important is the symptoms rather than PF. I keep a note of how I'm feeling, (even if I'm feeling rubbish my PF rarely drops by more than 100) and the nurse adjusts medication based on frequency of symptoms.

I cant really offer much advice other than monitor and record your symptoms, you know your body best so listen to it, and don't rest unitl you have the answer you want.

Other thing might be to ring hospital and say you'd be happy to accept a late cancellation to see the consultant, might be a bit inconvienient but if it gets you sorted.

Good luck xxx

[Hidden]

Hi september20,

Thanks for your reply. Good to know someone else is in the same boat; it's quite frustrating when the numbers don't match symptoms. Not that I want to have bad peak flow but if I'm feeling breathless anyway it would be nice to have some standardised objective measurements which confirm it, especially as some medics still seem hung up on peak flow despite its not always being reliable (obviously it still has many uses).

Might try the cancellation route if/when I ever get my appt letter - just got a letter from the Appts Unit saying 'you haven't booked yet'. Not from lack of trying on my part, Appts Unit - try telling the dept to actually ring me back if they say they will and if they don't have info they need, tell me, don't wait a week for me to ring!

Sorry, they haven't been the most efficient to deal with - I have BT being annoying already, I don't need anyone to start imitating them.

Philomela xx