May not be asthmatic but need advice!

Hi everyone.

I know this is an asthma forum but not sure who to ask so thought I'd put my story out here and see can I get any tips.

I went to my own GP 3 years ago with a chronic cough (ongoing about 15mos by the time I presented - I study abroad and had been told in that country my cough was psychogenic, i.e habit cough and to take some cough suppressants...which didn't work).

PF was minorly down (420 when estimated for height was 490 apparently. So was started on Ventolin and got a chest x-ray which was clear. Cough didn't really abate so was stepped up over next few months to reach Symbicort. Within 3 weeks of starting on this noticed huge improvement in my fitness, no longer got short of breath when running or at swim training, etc. Cough persisted in morning and night but that was it.

Shortness of breath has since developed into affecting me any time. For the last year I've been using my blue inhaler 2-3 times a day on average, some days a month I need it 20+ times. Wake up some nights. Winter is far worse and frequently get "chest infections" or viral infections as well as exacerbations of my "asthma".

Been to doctor where I study but no wheeze=no asthma so always just been told to keep taking my inhalers. This October got a chest infection and was put on steroids, ended up in A+E with it. Got a referral to pulmonologist and when I was with them recently spirometry shows "mild obstructive pattern" but isn't below the criteria for asthma (FEV1 = 90%, FEV1/FVC = 75%), so looks like my lungs are working fine. Reversibilty is 6% (needs 12% for asthma dx). PF's never drop below 440, best is 510 so green zone there.

The doctor thinks it's all postnasal drip. Cough still there but much improved since I was given montelukast. Have been on a nasal spray for 3 years. Any suggestions as to what could cause the shortness of breath or does anyone has experience of getting short of breath with chest tightness and coughs related to post nasal drip? Any suggestions on how to improve this or what to do. Many thanks in advance!

[Hidden]

Meant to say am now on Flutiform 250 (1x2 - as doctor thinks I'm on too high meds as it is and take my blue inhaler too much...though I feel I need it that often). Peak Flows rarely below 430 I meant to write, normally 440-460 this time of year.

[Griffon]

Does sound like you may have a low level asthma , but you can only be guided by your doctor .

All medications have side affects and the body also builds a tollerence to them , so it is wise to keep medication to a minimum of what you can get bye on .

[Lysistrata Administrator Community Ambassador]

I feel like I've been here before myself! To me the medications working is a big clue that asthma may well be behind a lot of this. Post-nasal drip could also contribute but you could have both.

Spirometry can be very tricky with asthma. They use standardised values based on population averages and taken from different studies with different criteria eg some included smokers in their calculations. It's entirely possible that your own personal best is a lot higher given that you mention in passing that you do a lot of sport when well. Mine was 120% predicted once upon a time due to playing a wind instrument so if I had mild obstruction based just on predicted, it would actually be more based on my real best values.

It can also vary depending how you are on the day and whether you stopped your preventer/ reliever for long enough before. I have severe asthma now and my spirometry is frankly a bit weird and all over the place, partly because for some reason I'm bad at performing the test and worse when my breathing is worse. In the early days I would often be dismissed based on it. I also had a negative challenge test initially because I didn't stop inhalers for long enough, then had a strongly positive one later.

My peak flow is also.way better than predicted - again guessing yours may be too. Sadly many drs do not take this into account though it can take a little time trying to find your best so thry do have to go off something to start with. May be worth trying post inhaler when you feel well and see what you can get?

It is in my opinion hugely unhelpful of the dr to just say oh you take too many meds and cut down without thinking about why, but I have had a lot.of that (I have never had post nasal drip btw). Is this doctor the GP or pulmonologist? Respiratory/pulmonology specialists I have found do not necessarily know how to deal with asthma that's a bit unusual, if asthma is not their main area of focus. I have met quite a few respiratory drs who will insist on things like no wheeze=no asthma (just no), or interpret tests in a way that isn't necessarily in line with the latest asthma research. I wonder if you may be able to find one who is properly focused on asthma? This made a big difference to me after years of being told that my problems didn't really exist because they weren't standard. Not sure how easy it is to find/get the referral though. I will say that my asthma cough did lead to a persistent cough that wasn't all asthma. Physio helped me get rid of that part so now my cough is just with the asthma.

I always say this but would advise calling the Asthma UK helpline. They should have some very helpful advice on everything i cluding the post nasal.drip aspect and practical advice on the medication side. I am not an expert and I agree that unnecessary/wrong medication is not good, but neither is poor asthma control if that is what's going on.

[Hidden in reply to Lysistrata]

Wow, thanks a million for your reply! I did do a spirometry last year at some stage - when I was well controlled but in another country studying - and that FEV1 was 140% (24hrs off meds) so I felt that 90% (on meds) was down a bit but the respiratory doctor was explaining that it still needed to be below 80% for asthma diagnosis. But what you say makes sense too in terms of how I feel at the moment.

Would sport really make such a difference? I know my peak flow for age/height predicted is 480 and I've managed a 510 before. Usually I'm 430/440 when I wake up and then hit 460/470 after taking the Flutiform which has a long-acting bronchodilator in it.

My GP is great, he treated me as asthma from the beginning and never questioned the lack of wheeze really, but he can't do/change anything if the respiratory doctors say I don't have asthma then he has to take their word for it really. At least he still gives me the prescriptions and says to keep going with what they say for the moment but I know I can go into him if I need to if I deteriorate a bit.

I'm due for a challenge test in a few weeks time so will see how that goes. I've no idea what the respiratory doctors at my local hospital focus on but they get a lot of COPD and asthma referrals there.

Thanks a million for your advice and suggestions. Really glad to know there are ways around this. I don't really mind whether it's asthma or post-nasal drip, it's just frustrating being told I'm taking too many meds when I get short of breath most days a week and my ability to partake in sports is impaired by this. Thank you so much!

[Lysistrata Administrator Community Ambassador in reply to Hidden]

The respiratory doctor needs to stop and think and realise that below 80% ought to be calculated on an actual best number. Diagnosis, especially of asthma, is not about hard numbers and cutoffs - they really should be looking at the bigger picture, and it sounds like this one is clinging to a textbook definition and not actually taking everything into account. Without being an expert, I completely agree that if once you could do 140% predicted off meds, there is something going on if you are now at 90% on them. If the doctor doesn't look at the context, you might as well see a computer, not a human who should be able to interpret numbers and facts based on their training!

Seems like you go to a general respiratory clinic which makes sense as a first port of call. However, I've noticed it is rather pot luck as to who you get in those and how much they know about asthma. If you have a little time it may be worth googling the names and seeing if any of them seem to be more associated with asthma (not just their own lists of interests on the website - they often say asthma on those but in fact aren't up to date with asthma and a lot has happened in recent years in research terms. If their main thing is lung cancer or COPD, they probably don't have time to keep up with the details of asthma.) You should then be able to ask to see a specific doctor when you next go - just ask at the front desk when you check in and they should write on your notes, otherwise it's like a taxi rank and they pick up anyone's notes. You might find a different doctor makes a big difference, especially if they're a bit more flexible in their thinking and don't see asthma as like being pregnant (yes/no). Great that you have a good GP at least - they can disagree with the consultants in fact (mine did when I was in your position) as they are independent practitioners, but often don't like to. (I can see why as they know they are not experts, but then your GP probably knows you better than the consultant and the consultant isn't necessarily expert level in your specific problem either, as mentioned!)

With the challenge test, it can be very hit and miss with what they tell you about stopping meds so I strongly advise looking this up for yourself - lots of places publish advice on what to stop when, and this is usually more useful than what they tell you. I had both mine done at specialist asthma centres and they were *still* really vague and didn't actually tell me about everything I was taking or tell me to stop it for long enough. It was really hard stopping for the proper length of time but worth it not to have another negative test and to have that confirmation - obviously though if you are really struggling then don't put yourself in danger.

Re the sport: I'm not a respiratory physiologist but I do know there is big variation just from person to person and things like sport and singing do make a difference. I started singing at 6 and oboe at 8 and my best peak flow (it still happens sometimes...) is 630 compared with predicted of 470. Not sure what my older lung function was when I started having problems, but I know it was maybe 120% predicted at least - it's dropped much more than the peak flow for some reason. Exercise has also been shown to improve lung function including in asthmatics (sorry don't have a source but have seen this a few times) so it makes sense that you started off higher if you're doing regular sport.

I hope this helps and I don't sound too cynical or offputting! It is difficult not fitting into a textbook but there are still people who listen like your GP - it can just be hard to deal with the ones who don't. I think I used Asthma UK nurses as my main source of asthma advice for a while just because they know their stuff AND listen which was very good for my sanity lol (this is why I go on about them). I think it can be really difficult day to day when you know you can't do what you used to, especially if you're used to being very active, and some doctors don't always take that into account.

[Hidden in reply to Lysistrata]

yea, this helps loads - thanks. It's been really helpful to read this as I feel I am bothering the doctors and wasting their time when I go and should just "deal with it" but it's hard sometimes not being able to go anywhere without coughing and needing to use my inhaler, knowing it helps the shortness of breath, yet being told I shouldn't use it so much.

I like the way you talk about your sanity there...feels like I'm about to lose mine so I'll give them a call and see what they say. Thanks a million for your help - you've been a saviour today!

[Lysistrata Administrator Community Ambassador in reply to Hidden]

If they want you to use it less, they should get their act together and help you! The day to day effect is not appreciated at all I find, and they do like to squash us in a box and then blame us that it isn't the right size.

I'm glad I could help - I really do feel like this could have been me writing a few years ago. I was in a similar situation with doctors and this forum was so helpful in making me feel like I wasn't crazy. I really wanted to 'pay it forward' so very glad it helped. I hope the nurses help too, but always happy to try and answer more questions if I can (obviously I'm not a professional like them but the patient perspective can be helpful too.)