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chest sounds ""clear"" grrrrrr

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Hi everyone

So i just came back from the doctor, and had the usual ""your chest is clear, go away speech"" and i am just so frustrated! I went to a walk in center on sunday due to having an awful chesty cough and was given antibiotics but not pred, so due to being unable to breathe and coughing constantly to the point of my ribs hurting I went back to the docs today only to be told my chest is clear.

I just wish my chest would make the right noises at the right times! and also yes I do sometimes wheeze but not always sometimes I just cough and cough. All the doctor kept going on about was the type of antibiotic I was on. And I got so frustrated that I turned round and said

""i'm not actually here for the antibiotics""

and the doc said ""so what are you here for then""

my reply was ""well i no i'm not gonna get what I want, so i'm not gonna bother asking!""

and I walked out

why do some doctors have to be so patronizing, he even had the cheek to ask me if I take inhalers! I mean REALLY! surely that would be on my notes.

anyway rant over. hope everyone is doing ok.

lejaya

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Thomass_mum profile image
Thomass_mum

I really feel for you it's a joke isn't it. Thomas's consultant likes to ask if we actually give his inhalers.

I am about to take him to the doctor, I know he needs pred but am almost anticipating the his chest sounds clear so he doesnt need pred speech. I have been giving him 10 puffs, trying for 4 hours but through the night he's not been quite making it. He is always a bit better in the mornings and is making 4 hours with 10 puffs but can guarantee come mid afternoon he won't be making the 4 hours again. I use the intercostal recessions and tracheal tug as a sign of when he needs an inhaler as he doesn't always wheeze so know he needed it. This GP has refuses me steroids before so am almost anticipating it now :(

Hi Jenny

Hope the doctor is helpful when you take thomas, I alwyas end up feeling like a fraud when they say my chest is clear and what really annoys me is why the doctors can't just give a prescription for pred eg to take if things get worse.

Also not everyone wheezes but doctors just don't seem to understand this, I have even been to a&e with horrendous coughing fits only to be told my chest is clear so no pred.

i have decided that I am going to record myself coughing tonight and show the recording to the gp, failing that I guess if I still cant breathe it will be a&e.

Lejaya

Ohh how frustrating!! Can you request to see another Dr or the asthma nurse at your practice? Or even the walk in again - actually request pred even? sometimes wonder what planet they are on!!

I had one on Sunday when was in a&e who said ""no wheeze, no attack"" despite having a pf of around 30% my pb :-/

Really feel for you, it's awful when you feel as though you're being dismissed.

Sending hugs xxx

Cumfevan profile image
Cumfevan in reply to

I know this thread was from 6yrs ago, but unfortunately some a&e doctor still state"no wheeze = no attack" as I was in a&e just last week February 2019. in spite of PFR 21% of my pb! & was desat to 75% with walking ~50ft inside a&e! Too tight to cough with diaphragm in a vice & full accessory muscle use /nasal flaring severe sob. The "fun" of cva. :-/

Thomass_mum profile image
Thomass_mum

Well he has crackles so have been given anti biotics as he has chest infection. Didn't get the pred I was after as got the well he has no wheeze line. No he jus wasn't wheezy when u happened to see him cos he's worse in evenings and nighttime. So now I guess time will tell.

Haha our walk in is worse, they told me Thomas's asthma too complex to take him there!

Exactly what we hear from OOH about my little girl, every time. Its so frustrating. I feel for you :(

I hate this, I often get that kind of reply, I have on occasion had my SATS measured too and told 'they're fine', and of course my PF has gone up and symptoms are never as bad at the GP's. Fortunately some GP's treat me based on my symptoms, others are not so keen, and then I'm in the dilemma of 'when do I go back to the GP because I haven't got any better', so I go back and worry I sound like a hyperchondriac.

Hope you're feeling better soon xxx

Thomass_mum profile image
Thomass_mum

Haha well I just got the OH to take me to walk in centre cos my chest hurt and felt a struggle breathing to be told I having a panic attack! We will see I have cough variant asthma.

I used to get this a lot too, as I was more of a cougher.

But, recently I've been wheezing quite loudly due to a chest infection....certainly does make the doctors more responsive ^^;

I hope you can get the treatment you need xxx

thanks for all the replies

I actually called the asthma helpline today and spoke to this really helpful lady who told me I NEED prednisolone and to tell the doctor if they don't give it to me then I will be going to a&e. she also mentioned that I was the fifth person calling today with the same problem and one person had to go to their doctor 4 times!

I just wish that doctors would actually believe us when we say our asthma is bad.

lejaya

Hiya, sorry to hear you're struggling at the min and gp not helping!

I got sick of seeing different ones at my surgery and them not always being great (only found 2 were not good tbh) but now always see him because I know I'm taken seriously. Is there a particular one that you like to see who you could go to?

Another thought - do you have a walk in centre you can go to? I have always found them helpful when my gp has been shut and know I'm flaring and likely to get worse, but bod needing the nebs and other stuff they give you in hosp. That way perhaps you could get started on the pred today and not risk it turning into an emergency?

Hope you're feeling better soon!

Thomass_mum profile image
Thomass_mum

I finally got steroids for Thomas today, despite being on day 3 of antibiotic he is still struggling so got to see the doctor we usually do and she said she realises I know Thomas's asthma better than anyone. He was wheezing at the appointment so has given me steroids which I told her I won't start tonight unless I feel it necessary as he has a tendency to turn into a little devil.

It is ridiculous though cos if we had been given it the other day he would be better by now!

Larua88 and JennyP, so sorry you had trouble getting the help you needed: no wheeze, no attack, my foot.

Glad someone finally gave you the pred. I'm sorry that he had to suffer while the doctor refused to get on board.

Someone ***really*** needs to revise all those medical textbooks that reduce asthma to wheezing only.

in reply to

Someone ***really*** needs to revise all those medical textbooks that reduce asthma to wheezing only.

In Japan the medical system works slightly different...there isn't really a GP as such, you cut out the middle man and go straight to the department/clinic that deals with your illness.

Although ""internal medicine"" clinics can treat asthma, they do seem to be very much ""no wheeze, no asthma"", but the ""respiratory"" clinics believe in CVA which is great.

Beth- the most annoying thing was bing told I needed a&e by ooh/111 then turning yo the to be dismissed cos a that point wasn't wheezing!! Go wasn't impressed, and said next time to ring 999.

I do think bough that having an unsympathetic gp is worse though than a&e ones because they are the ones who should be looking after you!!

Hope you get sorted lejeya!!

Are you better now Beth? xxx

Totally agree with you about the importance of a sympathetic gp, which fortunately I have. At present, I am doing much much better, in fact better than I have in six months. For the first few days out if the hospital I kept hitting a new personal best, both in terms of how I felt and PF: my new personal best is 480.

Oh good Beth!! So glad you're feeling better and impressed at PF going up :-)

I also feel a lot better than last wkend thankfully, 2 nights where it's not woken me up!! Also hoping to taper pred on mon if still stable :-) and have a cons appt on 12th June - hope its behaving itself, should only be on 15mg by then!!

Hope you keep improving :-)

so I finally got pred today after a really bad night and almost ending up in a&e, however I had the unfortunate luck of seeing the same doctor, who made such a song and dance about giving me pred,

he wanted to talk to my consultant first,

he thought I'd had to many courses in the past,

he thought I was only being given them because I was nagging my previous doctors for them (I am new to the surgery)

he also wanted me to try montelukast first even though I explained my cons didn't want me to have it due to me not having allergic asthma.

he was also rather rude when I mentioned how i spoke to asthma uk and they told me I needed a course of pred, his response was.

""well maybe you should get the nurse to prescribe you the pred, and they can't tell me what to prescribe my patient""

It was like getting blood out of a stone! but at least I have it!

lejaya

What a charmer he sounds! I'm glad you got the pred though. This is why I hate having to ask for emergency appts and OOH - it's such a lottery when you're not typical and you have to see a doctor who doesn't know you or has certain ideas/textbook approach.

I'm always a little puzzled by these doctors who are convinced we ask for pred when we don't need it. Is this a genuine problem they experience? I'd really much rather NOT be on pred because I am the one who has to deal with the side effects, but I do get frustrated when I can see, and health professionals like my usual GP and the AUK nurse can see, that I need it, and I'll get worse without it, and then I have someone else like another GP etc telling me I don't need it and in fact I am fine.

(I've also had the 'you don't need pred' from a consultant whose colleague in the same hospital had prescribed pred before and seen my spiro results and symptoms improve. He also tells me to see my GP because the hospital is too far away to assess me, then doesn't like it when the GP prescribes pred, though there's not much else he can do for me!) So I know what you mean, but I do wonder if there are really a lot of people who actually 'want' to be on pred when they don't need it or if it's one of those things some drs get in their heads.

I'm glad he didn't wait to speak to your cons first - if you need it now, you need it now, not whenever he can get hold of the cons! btw am slightly surprised, though obviously I'm not even any kind of doctor let alone yours, about not having montelukast because you don't have allergic asthma - I'm on it, hadn't thought I particularly had allergic asthma (though am wondering if I'll get more allergic triggers now that I seem to have developed hayfever) but was put on it because my GP says it's good where there's a strong exercise-induced component, and it does work for me, though I know not for everyone.

Hi I'm new to this

I totally agree with the comment about wishing your chest made the right sounds at the right time! I wish I had a pocket gp sometimes!

However I have been fairly lucky in getting referred to a specialist but I'm always well when I see him.

He has given me pred and antibiotics to keep in stock and start when I need to. Its a shame not everyone who struggles with their asthma doesn't get this.

I also have a brilliant asthma nurse who is sympathetic. Strangely, a lot of them have asthma themselves.

it is nice to find a forum where I hope people understand each other's pesky asthma and can offer ideas

Nat

hello!

I was hoping you would join my thread! I had some allergy testing done (blood tests) a few months ago due to having an itchy chest and they came back negative so my cons didn't think montelukast would be beneficial, I used to take it when my asthma first got really bad and it was actually a trial drug back then and it did help me, but I started to find that it wasn't making much difference to my general asthma control.

Hope you are doing ok? I have to say that I have never in the whole 10 years my asthma has been really bad had this much trouble getting pred!

lejaya

Grrr internet just went down in the middle of my reply!

Was just saying yep, i definitely know what you mean re the clear chest - mine KNOWS when it's near a dr, and especially a really sceptical and unhelpful dr - I swear the only time I've known it to wheeze when actually at the drs was when I was seeing my GP, who is generally ok to go on symptoms and other markers even if it's clear but tends to check anyway.

I've found the montelukast doesn't do the whole job but I'm definitely better on it than off it. Judging from what people say on here though it does seem to be one of those ones which either works well or doesn't. It doesn't give me what you'd usually call 'good control' but it does stop me finding even a slow walk such a massive effort that I can't do anything, which is very much appreciated (when I had to come off it for tests last year I was right back to being overtaken by grannies with walking sticks).

Just rang AUK to ask about hayfever - have had some really useful advice from this forum but still trying to sort it all out. Got some helpful advice about nasal sprays but it ended up being a bit of an asthma discussion which I hadn't really intended - especially since what I think is normal from here where a lot of people have worse asthma than me now makes them go a bit 'you have HOW many puffs of Symbicort? Why are you on xyz as well?\ And she told me when it's an 'emergency' - though I did say if I went with that I'd just get told my PF is fine and I'm not wheezing. The way she defined 'need to call someone now' is rather lower than what I'd thought - still don't think I'd get very far if I called after 10 puffs not working, esp as I find it usually kicks in eventually, at about the point someone is assessing me... I decided best not to mention the time I had 30+ puffs, when even I thought perhaps I could ring 111 (but I had a GP appt the next day so I didn't - and I still think that may not have been the best idea though was ok in the end).

OMG! you had 30+ puffs? I normally take 5 or 10 through my spacer when i'm really bad and see if that helps and if not I will call for help eg last night, but 30 is a huge amount! that would of made me dizzy!

lejaya

I'm fairly convinced that only doctors and nurses that have asthma themselves really get it.

Philomena: if you have hay fever I suspect you are ""allergic"". Hay fever generally is an allergy to something.

in reply to

I'm fairly convinced that only doctors and nurses that have asthma themselves really get it.

Philomena: if you have hay fever I suspect you are ""allergic"". Hay fever generally is an allergy to something.

Yep - I know that now, but previously I haven't really had what you'd call 'allergic' triggers for asthma. Possibly mould but I was never sure about that - so maybe the montelukast was actually working because I was 'allergic', but I didn't know that before? I'm just hoping that I don't develop any more triggers really.

Agree re the drs and nurses having it - though depends, if they've always been a 'blue inhaler only' type it's possible they could still have the mindset, subconsciously, that that's what 'asthma' means and may still not get it. But yes, I think if they have had the symptoms themselves they will at least get that even moderate symptoms aren't fun.

bt this isn't my thread I know but just wanted to say hi and welcome to Nat75!

yaf_user681_4328 profile image
yaf_user681_4328

Mostly Drs and Nurses with asthma themselves are more likely to listen, did have one nurse who was a "" blue inhaler only"" and just said I had odd asthma,

in a not so helpful way, Another nurse who also had asthma was fantastic they took one look and said wow it's the symbocort go get it changed there are lots of other treatments.

Out of interest looked up in a few books and coughing is clearly listed as an asthma symptom so wounder why there are so may no whezing no attach dr's?

in reply to yaf_user681_4328

Mostly Drs and Nurses with asthma themselves are more likely to listen, did have one nurse who was a "" blue inhaler only"" and just said I had odd asthma,

in a not so helpful way, Another nurse who also had asthma was fantastic they took one look and said wow it's the symbocort go get it changed there are lots of other treatments.

Out of interest looked up in a few books and coughing is clearly listed as an asthma symptom so wounder why there are so may no whezing no attach dr's?

Not just the books, also the best practice guidelines for British Thoractic Society (BTS-UK/NHS), Heart, Blood and Lung Institute (HLBI- USA/NIH) . HLBI specificially says absence of wheezing should *not* be used to exclude asthma.

Unfortunately, a lot of textbooks only mention wheezing as a symptom.

Also, doctors like definitive signs and symptoms: cough and shortness of breath can have many causes.

Finally, not everyone agrees with the guidelines apparently. And worse yet, many don't even bother to read them or set hospital/medical policy on them. Guidelines are after all guidelines, and clinicians are free to believe that they know better or disagree.

When I asked my GP to give me a letter sai g that I had cough variant asthma and said I thought maybe that would at least get someone to look something up if they weren't familiar with cough variant asthma., he laughed and told me I was giving people too much credit that they would actually look something up.

I guess the real problem is that doctors are just plain human with all of the ego/""i already know it and don't have anything more to learn"" issues that everyone else has. No profession is immune from the ""I'm already an expert so I have nothing to learn"" syndrome. Sad, but true.

The real question is: how do we get around it so we get the care we need and don't lose work/family/friend time due to unnecessary illness?

I'm new on here and was looking for some advice because this has just happened it me. I have changed inhalers to symbicort SMART and wasn't sure what to do with worsening symptoms so went to the walk in centre. I was wheezing so much when I got there that the receptionist wanted to book me into A&E (they are all on one centre) but after my protests that it wasn't actually an emergency, I was put onto the OOH list. The lady I saw was lovely and was willing to give me some pred until she listened to my chest which was clear. I explained that I had taken a reliever inhaler only an hour ago and sat in the waiting room which was the perfect climate for me. She then spoke to a GP who suggested that it was anxiety and I needed to reduce the amount of Bricanyl I was taking without even seeing me. As soon as I walked out of the centre and into the cold air I started wheezing again (even though I am not a great wheezer. I was told to go back if it got worse but I would be repeating the whole thing again!

I totally get the frustration of this topic and am glad I am not the only one (makes me feel a bit less like a fraud).

This is my biggest bug bear ..I feel your pain

well I would just like to welcome all the newbies! hope you find this website helpful, I no I do, especially when my doc is being particularly unhelpful and the asthma nurses are lovely and really helpful, so I feel less like a fraud!

I think its about time doctors started listening to us and actually believe us when we say our chests are bad, we shouldn't have to end up in a&e to get treatment.

lejaya

Thanks for the welcome! I'm still not getting very far as being treated is concerned! After the OOH yesterday, I tried speaking to a GP today but was told that it was not an emergency so I had to wait for a routine appointment next Monday. When I explained that I couldn't possibly wait that long, I managed to get an appointment for the asthma nurse on Wednesday evening. I felt a bit let down by this so I phoned the helpline and spoke to a lovely nurse who said she was quite cross with the way I have been treated when my symptoms are calling out for pred! On her advice I phoned the doctors and was surprised when he told me to come down straight away. I have just got back from this and got the whole your chest is clear so I doubt it is asthma! I did explain that I had needed a lot of Bricanyl (which I shouldn't even need as I am on Symbicort SMART but have used all my dosage for today) to enable me to around safely and have not being doing anything all day. He then told me that I won't have an attack and it will ""just sort itself out but may take a while"". I now feel angry as only a fortnight ago, my consultant said I need to treat my symptoms quickly as they have a habit of staying for months!

Anyway, getting to the point, I have read some people talking about recording their symptoms and am seriously considering this as I am starting to be made to feel like I am making it up (have seen 4 people for this now since Friday and only one really offered any reasonable advice). Did it help them to realise that nocturnal symptoms are real? My other thought was to not take my inhaler leading up to the appointment but I will have to drive there and don't really feel safe struggling for breathe. I did jokingly say to the doctor today that he should hear me at 2 in the morning struggling to breathe and wheezy but I was told that he can only treat what he sees. I have a nurses appointment on Wednesday which I will go to if it doesn't magically get better before then!

Sorry to go on a bit - just feeling really cross and let down now (I have had worsening symptoms for over a week now). I have never had this trouble getting pred before even though my symptoms have been similar (and I know that is what I need)

That must be very frustrating Kayla - I have similar whereby it can linger for a while unless I jump on it with either quick treatment or doing nothing and staying inside (often not possible of course with work, general life etc)

I may not be a doctor but am sceptical about the 'we can only treat what we see' - my housemate is a junior doctor and often talks about the importance of the history (and for asthma that is pretty important in general eg more likely if you're worse in the morning/evening so you could turn up at the GP in the afternoon and not be that bad, which is something I get sometimes; I spend an hour sitting down at my best time of day waiting at the hospital for outpatients so unsurprisingly I'm not too bad when I get in there even if I had been having problems!

I have also had one OOH dr willing to prescribe me pred based on what I'd been telling him about recent symptoms so it is reasonable - he said my chest was clear but nonetheless he would want to prescribe pred given that I had been struggling.

It does really make you start second-guessing yourself though doesn't it, and then start wondering if maybe they're right even though you know that really you do need the pred or whatever.

Lejaya - how are you doing now? yeah the 30 puffs was not the best idea I've ever had - wasn't really thinking straight as I discovered (was trying to work and making stupid mistakes!) I really should have called someone before that.

hi philomela

I'm doing a bit better thanks, still have a bad cough but things are slowly improving, just hoping that the infection has actually cleared properly. how are you doing?

It seems that doctors are anti pred at the moment, given a few peoples experiences, I have never had this much trouble getting pred before even when my chest has been clear. I even got grief from the pharmasist who implied that I shouldn't need pred given all the other inhalers I take! in my opinion it's not really ok to just ""see how things go"" surely it is better to get things under control when they first get bad, rather then waiting until urgent treatment becomes necessary! you would think doctors would want this for their patients.

lejaya

Welcome KaylaCP! No need to apologize for going on . Your frustrations are entirely understandable.

Lejaya - glad yo hear things are getting better.

This is an interesting post, and makes me realise I am not a medical anomolie!

I have had countless chest infections and pneumonias and each time my chest is dry so the doc can't hear a thing, really frustrating. The pain I am in usually convincees them but it strange isn't it?

I've just got back from OOH after receiving the 'chest all clear' comment. Went in after ringing 111 as peak flow has remained between 50-60% since yesterday morn, have used 10 puffs of Ventolin since getting up this morning, feel like I can't get air in coz my lungs are full, and have started coughing thick yellow mucus up again (last chest infection only 3 weeks ago!) With that funny taste. Told to cut down in Ventolin as I'm using too much, and chest is clear so am fine, Wtf? I will be trying to see a gp in morning and hope I get a sesible answer!

Sorry to hear that Butterfly. This was the situation I was in last week with the same comment that I was using too much Bricanyl and to wait a little while before taking it to make sure I really needed it! Unfortunately it is not the first time I have had this comment for OOH as I find that I respond well to it and it helps me to avoid A&E. When I told this to my consultant she said that she has often heard of people be given advice like this by people who don't understand 'asthma like mine' and that if I hadn't taken so much I would have ended up as an emergency! I hope your GP can be more sensible tomorrow.

Butterfly - sorry to hear about your bad experience. Hope you have better luck with your GP.

Out of luck with the sensible answer!! Explained that chest has been tight, pf reduced, coughing, air trapping and waking at night etc etc. PF at GP was 470 so he said 'that's fine, I'd expect it to be around that for your age/height etc', to which I told him my best is 570 and whilst the value in surgery is only down by nearly 20%, the readings I've been getting at home have been much lower. He did say that I sounded like I was struggling as I was cutting sentences short, but my chest was clear and could hear good air movement. He said to keep an eye on things and return if no better, and to go back in 6 weeks to review medication (what reviewing, I'm already on seretide 250 2 x twice a day and montelukast!).

Seriously what do we have to do to get heard? I feel bad, because he has otherwise been a seemingly thorough GP, but I just feel like I'm making it up (he didn't suggest this BTW, it's just how I feel), but I KNOW whether I'm breathing normally or not!

Sorry....I'm just upset by it all, the lack of sleep and being tired from trying to breathe isn't helping. Rant over ;-(

in reply to

He said to keep an eye on things and return if no better, and to go back in 6 weeks to review medication (what reviewing, I'm already on seretide 250 2 x twice a day and montelukast!).

Butteryfly, I'm so sorry you are continuing to struggle and didn't feel heard.

I'd take seriously the ""go back if you don't get better"" - my GP usually waits a week or so before he decides to up the pred if I'm up and down but hanging out below 80% . He's not blowing me off, just trying to see which way the wind is blowing and if things will clear up on their own.

One thing I've learned with my doctor is that I need to keep him updated on the good and bad - I even once made an appointment just to show him what I looked like on a good day so he'd have some sort of comparison (he had been assuming I had a low baseline all the time because he'd never seen me at least sort of well).

The reliance on %predicted is so frustrating.

Do you keep a symptom diary. along with the peak flow record? And would your doctor be receptive to your documenting the ups and downs? For those of us with unusual peak flows, I think that is especially important. if you can document for *you* that predicted means symptomatic on a regular basis and only close to your personal best makes you actually well, perhaps he would be more receptive to the notion that the difference between your best and predicted is not just some extra capacity that you don't really need?

Sometimes the correlation between symptoms and numbers is more persuasive than the numbers or the symptoms themselves. At the very least it begs explanation because one has both subjective reports of symptoms correlated with objective data.

My personal best isn't as high as yours (480 so far), but the reliance on % predicted rather than personal best causes me problems too. Predicted or not, I don't really feel well and I'm not able to carry out the normal activity level of people my age unless awfully I'm close to personal best and in general even the lowest blow of three is above 400.

For me, if I'm ""at predicted"" for my height and weight (378) - I'm actually pretty sick and can't do most of the things in my life that I need to do - i'm tired, I'm coughing, breathing is hard, half a day or more out of the house leaves me so tired when i get home that I crash. If it goes on for long enough breathing and the rib cage and all the muscles involved start getting sore. And I'm more vulnerable to acute flares that need immediate attention if the triggers pile on.

Really, sorry you are having a rough time. Hope things clear up sooner rather than later : both with your lungs and with the GP.

Whatever you do, don't give up - you deserve to feel well!

Re: air movement and wheezing.

Its a good question.

I'm still trying to figure out my own patterns here, but it seems with me that I wheeze when I'm mildly symptomatic or just coming up/going down into an exacerbation. When I'm worse I go through a phase where one can hear aitr move,, but if one hears a wheeze it is only at the end of a forced exhale.

I know that people with cough variant asthma sometimes don't wheeze at all: they only cough.

Unfortunately, most ""asthma training on one foot"" tells doctors that they should either hear a wheeze or a silent chest (no air movement). Even a really good doctor can find it confusing when they hear movement but the patient is reporting or sounds symptomatic. ""confusing"" was the word my own doctor used when he finally resigned himself to the fact that his stephascope wasn't goinig to tell him everything thatt he wanted to hear.

in reply to

Do you keep a symptom diary. along with the peak flow record? And would your doctor be receptive to your documenting the ups and downs? For those of us with unusual peak flows, I think that is especially important. if you can document for *you* that predicted means symptomatic on a regular basis and only close to your personal best makes you actually well, perhaps he would be more receptive to the notion that the difference between your best and predicted is not just some extra capacity that you don't really need?

Sometimes the correlation between symptoms and numbers is more persuasive than the numbers or the symptoms themselves. At the very least it begs explanation because one has both subjective reports of symptoms correlated with objective data.

Thank you for your reply Beth, I do sometimes record my symptoms too, but only when going through a rough patch, so there's no 'this is me when I'm good' information, which as you say could be equally as important.

I will of course go back in 6 weeks, but just find it hard to go back in the meantime, as I've been told my chest is clear and whist I might still feel rubbish, nothing will have clinically changed, and don't want to seen as being a hyperchondriac. I will just have to take things easy, slow down a bit more and hope things improve on their own. I have a stock of ventolin, and am not rationing it like OOH suggested!

Thank you for the info on 'air movement' too, so basically GPS are looking for wheeze or no air flow, for it to be asthma?! Oh dear, seems I am one of the complicated ones too then!

in reply to

Thank you for the info on 'air movement' too, so basically GPS are looking for wheeze or no air flow, for it to be asthma?! Oh dear, seems I am one of the complicated ones too then!

Yup - very frustrating! I get localised air trapping / mucus plugging. This means that if you listen in one spot my lung sounds are fine, and if you move an inch over then it goes silent. My GP (who is very good) always listens in multiple spots, and then the A&E Jr doc listens in 3 places and can't hear the problem. I was so relieved in Feb when I was in MAU and a proper respiratory doc came and had a listen and found and explained the patchiness of breath sounds and got my treatment started.

But cough-variant is important too - and when coughing is my main symptom I feel like parts of my lungs are constantly spasming closed and then opening while I cough and then spasming again. By definition I can only do a peak flow when I'm not having an acute bronchspasm, so that can only tell you how open my lungs are for the few seconds in every 20 that I can exhale at all!

I'm not sure stoicism is to be encouraged in people with asthma - I think most of us here self-manage very well. Would it be worth seeing the asthma nurse at your practice? The 'come back in 6 weeks' approach feels very, very unsatisfactory - my GP has generally only wanted me to go one or two weeks without an improvement in symptoms given the level of meds I'm on. I do understand not wanting them to think you're over-reacting though.

My own hay fever (I assume) based asthma has, for no obvious reason, kicked off as of 5am. I was in London this weekend and although I had plenty of acute attacks, they were all the kind that reset back to zero with reliever as soon as I got out of the pollen. But now the constant sticky cough has started - annoying! I actually wonder if I've picked up a virus or something as it doesn't really make sense.

I hope you feel better soon,

Cx

That must be v frustrating! Do you/can you keep a PF chart to show him? Not ideal I know if you need help sooner rather than later (and does sound rather like you do need to do something to get on top of things) but sometimes hitting them with the visuals can help. Is he the one you normally see or is there another one there who might be better

Can you try the AUK adviceline? I've found them helpful on the 'how to get what you need out of doctors' kind of advice before, as well as on the actual medical stuff. If you explain what's happening I think they would probably say you need to go back and might give you some ideas about what to say - judging by this thread they'll have heard this problem many, many times before - I sometimes wish it were possible to get them on the phone DURING a consultation as on the whole they do tend to be much more accepting of all the variations in asthma than many drs who seem to go more for the textbook approach.

Out of interest, do any medics/frequent flyers know the answer to something which Butterfly's post made me think about? I know that quite a few asthmatics don't wheeze and that can be difficult with some 'no-wheeze-no-asthma' types, but when they say 'good air movement' as well that always makes me feel a bit fraudulent when I'm struggling. However, I've also read comments about how people have been in hosp and not allowed out because their air movement is still restricted/have been sent straight in because it's restricted. Is this something that would realistically only happen when someone is REALLY struggling, so that if you're not at your best/need urgent GP appt/OOH and PF has dropped etc and you would need to see someone asap and perhaps get pred, you might well still have OK air movement because that doesn't happen till someone is really struggling? Or is that totally wrong? I have an idea that wheezing isn't necessarily linked to severity but thought air movement might be so that a non-wheezer can sound fine in every respect but still need pred or whatever to stop them ending up with restricted air movement.

(Just curious, not applicable to me atm but think many ppl on this thread would like to know. Good luck Butterfly and anyone else struggling and not getting the help they need!)

Yeah I have peak flow all tracked on a phone app, which visually showed values bumping all around my amber zone, and occasionally into the red. He said he did appreciate that people are usually better when at the GPS but still didn't act on it. There are other GPS but I'm sick of having to back and worry what they think, I'm there again this afternoon with my daughter!!

Yes it would help to take the AUK nurses in with us! I will ring for advice later.

And I'm interested in what 'good airflow' actually means!

hi butterfly

sounds like you are in a similar situation to the one I was in a couple of weeks ago, I went to OOH, then to my doc twice in week before I finally got pred, but I think my doc only gave it to me to get rid of me! but I found talking to the asthma uk nurses really helpful, they made me feel like less of a fraud and they actually believed me when I told them how bad my chest was and that i needed pred. You should try giving them a call, it's so nice to talk to someone who actually listens. or maybe you could try seeing a different doctor?

anyway I really hope you feel better soon and I also think you should give it no more then a day or 2 before going back to your doctor.

lejaya

in reply to

hi butterfly

sounds like you are in a similar situation to the one I was in a couple of weeks ago, I went to OOH, then to my doc twice in week before I finally got pred, but I think my doc only gave it to me to get rid of me! but I found talking to the asthma uk nurses really helpful, they made me feel like less of a fraud and they actually believed me when I told them how bad my chest was and that i needed pred. You should try giving them a call, it's so nice to talk to someone who actually listens. or maybe you could try seeing a different doctor?

anyway I really hope you feel better soon and I also think you should give it no more then a day or 2 before going back to your doctor.

lejaya

Thank you Lejaya, sorry missed your post earlier. I don't care if I am just given pred to get rid of me lol!! Yes I had meant to ring the nurses today, I will tomorrow and see what they say. I bet the pred did help once you'd got it, didn't it.

in reply to

The pred did help, but it took until the end of the course for it to really make a difference but that was probably because I got the pred quite late, but yes I would also rather have pred to get rid of me to! I think my doc also realised that I wasn't going to budge until I got pred either! lol, I am just dreading the next time I need it, i will probably end up having to go to my doc about 10 times! lol

lejaya

in reply to

I am just dreading the next time I need it, i will probably end up having to go to my doc about 10 times! lol

lejaya

Lol, we shouldn't have to though, silly doctors!

Thank you curiouser, yes I have noticed I'm told I have a clear chest when they listen in 2-3 different places, the times they've heard reduced air entry was when they've listened in 8 or so different places. I also 'hear' myself breathe differently, which I was yesterday, but it must be just me who hears a difference?

Its a good thought re: the asthma nurse, while she can actually do very little, if she is concerned by anything, she usually calls the gp in, maybe I will book an appointment with her for a week or two.

I hope your day gets better and you can avoid the pollen, and hope its not a virus. I stupidly forgot my antihistamine this morning and am paying the price, my mouth is so itchy,I keep sneezing 6 times in a row and my lungs are even more twitchy and mucousy, duh.

Butterfly, I completely understand not wanting to go back. The way I feel about my experience at the hospital, I'd have a hard time going back unless I was positively blue (which has *never* happened) which frankly would be really stupid. Waiting six weeks isn't waiting to be blue of course, but I hate the idea of you suffering for all that time. You really deserve better.

Even if you are clear if you go back because symptoms continue, he may take a different view because it would be clear that the conservative wait and see approach wasn't solving the problem.

Several years ago when I had one of my post cold exacerbations I went to see a doctor who at first was no wheeze no asthma and refused to even renew my ICS prescriptions and gave me antibiotics for a bend over double pee in your pants sort of cough that is *always* asthma and only goes away with steroids. But after I came back coughing two weeks later even he gave in and at least renewed my prescriptions so that I could use the ICS to treat the cough. At least consider giving him one more chance if you are still ill a week from now or sooner if things get worse?

in reply to

Several years ago when I had one of my post cold exacerbations I went to see a doctor who at first was no wheeze no asthma and refused to even renew my ICS prescriptions and gave me antibiotics for a bend over double pee in your pants sort of cough that is *always* asthma and only goes away with steroids. But after I came back coughing two weeks later even he gave in and at least renewed my prescriptions so that I could use the ICS to treat the cough. At least consider giving him one more chance if you are still ill a week from now or sooner if things get worse?

Beth, thank you for your support.

I have got to the point where I am just doubting myself now, maybe things aren't that bad? I did manage a pf of 470 earlier but that was after ventolin, and i have used 8 puffs today which isnt normal for me, but im still doubting myself. I will see how things go over the next week, write down symptoms, pf and inhaler usage, that way I have facts to show myself and the gp. If there's no real improvement I will see either the asthma nurse, or a different gp.

I can't believe you oil gp wouldn't even renew your ICS prescription, how silly!

Your description of your cough did make me laugh, so thank you for cheering me up! I had THAT cough today, eating lunch seemed to trigger it, glad I was at home!!

Ohh how annoying Butterfly :-( and Lejaya, I hope you don't have to see the GP 10 times before being given the meds you need!!

I don't know if it is any help, but there have been a couple of times recently, when I have felt ill, known that I need to visit the doctor, but not wanted to/been able to. I have a GP at my surgery who I always try to see, because he listens to symptoms and low/high PF when at home etc rather than that snapshot in time at the GP when you've taken a ton of ventolin and relatively stable. These times I have rang and asked to speak to the GP and he has issued a pred prescription etc. I generally only see my GP when I am really ill and have been told before that I need emergency help, so I think that when I do this he'd rather prescribe than risk me getting any worse.

Is there any chance you could have a telephone apt, they might be more helpful?

I also get the no wheeze comment, all too often. There have only been a handful of times when a wheeze has been picked up. Its very frustrating!!

I hope you are both feeling better soon!!

Laura x

That's a very good idea with your gp, unfortunately our gp don't do telephone appointments and only do home visits to the housebound. ;-(

Quick update : things have been getting worse rather than better over the last few days, peak flow has been very erratic, anywhere from 50 - 80% in one day, I've barely slept through the night from coughing and really tight chest, I've used a full inhaler in a little over a week as a can't last more than 2-3 hours without 2 puffs and have sometimes needed up to 8. I still can't hear any wheezing, but my breathing sounds different, like it always does when I'm struggling. So I've concluded, enough is enough, I'm not going to wait 6 weeks to see the gp. I rang this morning to get an appointment but even the emergency ones were booked up, but they managed to squeeze me in later this afternoon, so I will let you know how I get on. I am going to pretty much DEMAND pred this time!

in reply to

Quick update : things have been getting worse rather than better over the last few days, peak flow has been very erratic, anywhere from 50 - 80% in one day .... I am going to pretty much DEMAND pred this time!

You go girl!

Hi Butterfly

how did it go at the doctors? hope they were helpful and gave you pred.

lejaya

Got my pred, yay!!! Dr still reckons my chest is clear though!! but peak flow was only 360 (63%) and he admitted I didn't look well and still can't speak in full sentences so I've been given 5 days worth.

cici73 profile image
cici73 in reply to

Got my pred, yay!!! Dr still reckons my chest is clear though!! but peak flow was only 360 (63%) and he admitted I didn't look well and still can't speak in full sentences so I've been given 5 days worth.

Yeah I know how you feel, that's where I'm at right now, I'm having difficulty speaking too. I'm now on day two of a 5 day course of Pred (40mg) and I'm finding it easier to speak a sentence already :-)

Hope you are feeling better by now.

I am so pleased you finally got pred, hopefully you will start to feel better soon xxx

I have another 'chest is clear' comment to add to my collection!!

My asthma has gone downhill again just recently, not sure if it's a cold i have or worsening hayfever (stuffy nose, sore eyes and sore throat). My PF has taken a dip, on average reaching 70-75% morning and night, I'm having more daytime symptoms and needing more ventolin to settle flares. Today has been particularly bad, awake 3-4 times during last night, needed 6 puffs just to get out of bed, and needing another 6 an hour later. There was no chance I could get in with the GP, so I went to the walk in centre. I was waiting an hour to see someone and by the time I went in I was needing more ventolin but I waited so I could be seen 'worst case' .....instead the doctor told me he couldn't hear a wheeze, i told him I don't, he said it cant be asthma then, I asked what I should do, he said if the ventolin helps, keep taking it but he wasn't convinced. He never checked sats, or peak flow or asked what medication I was on.

I'm so cross ...oh what I'd pay to be a wheezing asthmatic!!

Argh butterfly how friustrating :-(

I'm a non wheezer also and have in the past had the no wheeze=no asthma. Fortunately my GP has always been pretty good when I've said I needed pred (before maintanence - so things are a bit different for me now), but have had a few horrendous a&e visits etc where I've been told I'm not having an asthma attack because I'm not wheezing. I had a dr in resus the other week who was more hung up on the fact I don't wheeze than the fact my chest was silent. It might be something for you to consider - I carry an ""incase of emergency"" piece of paper which gives alot of contact and medical info, but also what happens to me during an asthma attack - my constant has signed it and generally over the last couple of weeks and few admissions (my asthma, as you know is completely out of control) things have generally been managed better and treatment not dithered about as much ... it makes life so much easier when you can't talk to explain yourself! Perhaps that's something you could do? And get your cons (if you have one) or your GP to sign?

Do you manage to get your PF up into he green zone with salbutamol? Or is it down below 80% most of the time? Remember guidelines say that you should get help at 50% or if you remain in the yellow zone. Do you have an asthma action plan?

Don't ignore/let others ignore worsening symptoms ... it's a serious condition and ""professionals"" need to think outside the box as not all asthmatics are textbook ... I sometimes wish that they looked on here at what people are going through ... but then wouldn't really want my resp team to see what I write on here!!!

Sorry I'm rambling - totally brain dead at the min!! But hope it helps in some way!!

Laura x

in reply to

I carry an ""incase of emergency"" piece of paper which gives alot of contact and medical info, but also what happens to me during an asthma attack

I think this is a fab idea, its certainly something I can write, but I don't have a cons, and I have trouble getting the GP to treat me due to the lack of wheeze anyway so can't imagine he'll sign it! I did find earlier that I was in no position to have a full blown conversation with the walk in doc as I was so short of breath, so it would have really helped in this situation. I aslo find that PF isn't a reliable indicator for me either, so could add this to the list!

Do you manage to get your PF up into he green zone with salbutamol? Or is it down below 80% most of the time? Remember guidelines say that you should get help at 50% or if you remain in the yellow zone. Do you have an asthma action plan?

PF does go up after salbutamol, up to about 85% when I've taken ~6 puffs, without any salbutamol it stays low all day. Unfortunately I have no action plan, although my last visit to gp, he told me I should return if I'm using salbutamol >3 days a week, (this week it's been 3 days so far but I've used ~100puffs!! Hence the visit to walk-in!) So far it only reached 50% the other night once, but it climbed back up after salbutamol.

Don't ignore/let others ignore worsening symptoms ... it's a serious condition and ""professionals"" need to think outside the box as not all asthmatics are textbook ... I sometimes wish that they looked on here at what people are going through ... but then wouldn't really want my resp team to see what I write on here!!!

I will keep an eye on things and seek help if I need it. I agree, I think 'professionals' should ask advice of people who suffer, especially those who don't follow textbook!

Thanks again Laurs xxx

yaf_user681_30355 profile image
yaf_user681_30355

Butterfly, have you ever seen a consultant? I have odd asthma too -no wheeze, PF doesn't reflect symptoms etc. I have had problems with GPs and A & E over the last 25+ years but each time I have seen a consultant (in my 20's, 30's and 40's) I have come away with more confidence to voice that I have non-classic asthma at the beginning of any appt.

If your GP can't step up your treatment, it may be an idea for him to refer you.

Thanks for your reply JF. No I haven't seen a consultant yet, I saw my gp the other week and he said he wants to try one more thing before he refers me, he gave me options of increasing seretide beyond 2 puffs twice a day, adding long term low dose pred or theophylin. He then said if it didn't work (whichever option we went with) he would refer me. I don't like taking more medicaton than is necessary, and given that in the past I have managed on much lower doses of seretide, I wanted to wait an see if my lungs would improve before adding more. Unfortunately, since that appointment things have gone downhill, not sure if its hayfever or a viral infection, both triggers for me. I also have reservations about a consultant referal, its silly I know bit I'm concerned I'll be told there's nothing wrong with me and its in my head, I know its silly, especially at the minute its quite clearly not normal, normal people don't get out of breath sat watching tv, or wake up feeling as though someone is sat on their chest etc. But its a concern non the less.

yaf_user681_30355 profile image
yaf_user681_30355

I really get what you mean about trying to see if it will all calm down. Has this ever worked before? I hate taking all of my meds but, to keep working and have a quality of life I know I have to. Although I look at it as temporary and at some point I will be able to reduce. (It's just my current situation is lasting longer than ever before!)

I find with my asthma, I need to nip it in the bud quickly or else it becomes even harder to calm down. I am reacting to the pollen too and can't work at the agency that I normally do in the summer hols yet. Am I right in thinking you have small children also as not being able to stop and rest when needed also makes my asthma worse.

I also get very anxious when referred to a consultant and they don't ever have a true answer as to why I am different. My consultant last time said I was the 3rd person he had seen in the 15 years he had been a consultant with my symptoms and test results. No wonder I feel different! Lol.

in reply to yaf_user681_30355

I really get what you mean about trying to see if it will all calm down. Has this ever worked before? I hate taking all of my meds but, to keep working and have a quality of life I know I have to. Although I look at it as temporary and at some point I will be able to reduce. (It's just my current situation is lasting longer than ever before!)

I find with my asthma, I need to nip it in the bud quickly or else it becomes even harder to calm down. I am reacting to the pollen too and can't work at the agency that I normally do in the summer hols yet. Am I right in thinking you have small children also as not being able to stop and rest when needed also makes my asthma worse.

I also get very anxious when referred to a consultant and they don't ever have a true answer as to why I am different. My consultant last time said I was the 3rd person he had seen in the 15 years he had been a consultant with my symptoms and test results. No wonder I feel different! Lol.

Well I have had quiet periods where I've been able to reduce meds, but to be fair my asthma is worse than its ever been in these last 6 months or so, so I get that really its unlikely that things will get better on there own!

Yes my kids are only small and need a lot of entertaining, resting is really not an option unfortunately. I can take a long time to recover too, when I have pred, I usually pick up, but then drop back again afterwards and need more time after to recover, over winter I had lots of chest infections, and didn't have time to recover properly in between each one, which I think has contributed to getting to how I am now.

Wow, 3rd person in 15 years, I just worry that the cons I saw would be rubbish (don't have much faith after recent non asthma experience) and say not textbook =not asthma

Thank you for your support xxx

Sounds a bit of a pain!! Are you ok this morning?

Being referred to a consultant is a scary thought and I had the same reservations as you do - being non textbook. But my attacks were increasing in frequency and severity, so it was really necessary to be referred at that time. I'm glad I was now, because while I've been miffed at what my cons has said at times it's been because perhaps I've not taken it as well as I should have - my asthma is ruling my life at the moment and the last time I saw my cons I couldn't get it through, didn't like how he'd said something and just completely shut down ... but it was silly and looking back, actually my cons wasn't being dismissive etc, its how I'd taken it. It also means that I have access to a really nice resp nurse, who is always at the other end of the phone and willing to see me at short notice if I'm struggling to cope post attack (both physically and mentally!). Sorry, I'm rambling again :-/

What dose of seretide are you on? I think the max primary care can put you on is 2x2puffs daily of seretide 250 - consultants are able to go above licensing, but I've found that GPs are reluctant to do this. Are you already on montelukast? Adding low dose maintenance pred or theophylline out you at step 5 of asthma management, where really at step 4/5 you should be getting a referral to a specialist. I was at step 5 (seretide, montelukast, salbutamol, atrovent and a pred taper to 20mg) when I got referred and I can remember having very similar thoughts about not wanting to be referred.

Since my referral, my asthma has gone even further downhill, so it's a good job really that I was referred! It means that post hospital admission and severe attack there are people there to contact and give support. It also helps when (unlike GPs who say how you're too complicated for them to deal with and they don't know what to do with you or what to try as all normal treatment isn't giving control) they can tell you that there is still xyz you can try and that they see lots of other complex cases etc. It sounds as though you're a ""slow burning"" type, and that your symptoms come out of control over a few days, but also that it gets to a point that you do need further help. There's no worse feeling than not being able to manage your own symptoms.

I'm rambling again - brain is totally scrambled at the moment, but hope this helps in some way.

Laura xxx

in reply to

What dose of seretide are you on? I think the max primary care can put you on is 2x2puffs daily of seretide 250 - consultants are able to go above licensing, but I've found that GPs are reluctant to do this. Are you already on montelukast? Adding low dose maintenance pred or theophylline out you at step 5 of asthma management, where really at step 4/5 you should be getting a referral to a specialist. I was at step 5 (seretide, montelukast, salbutamol, atrovent and a pred taper to 20mg) when I got referred and I can remember having very similar thoughts about not wanting to be referred.

Laura xxx

I've felt a bit better today, managed on 10 puffs all day which is good.

Im on 2 x 2 of 250ug of seretide, I was once managed through a flare on (I think) 4 x 2 for a few days by the gp, and whilst the gp didn't think it would work, was quite happy to increase it. I didn't know it wasn't licences beyond 2 x 2. Like I say, he I'd say he would refer if any of those options didn work, so he wasn't against the idea, I think he just wanted to try an fix me first.I am on montelukast already.

Yes I agree totally about not being able to manage my own symptoms, that's what I hate, and I hate feeling out of control. I do slow burn, but can have surprise attacks too, and deciding when you need help on a slow burn is difficult because you think, oh I'm only a little worse than yesterday, I'll be fine.

Its also true about a cons being better placed to offer xyz when abc hasn't helped, just as I sad in previous comment, I'm a little untrusting in them at the moment.

I really do appreciate your support, especially when you're so ill yourself, thank you x xxx

Hi.

Just wanted to echo what other people have said about being referred. I have many of the symptoms/patterns you describe-stepping up and down treatments, being ok on pred and then coming off, frequent bad periods but no major attacks, rarely wheeze etc. I was really worried about being referred as, in my opinion, my asthma was persistent but not that bad (have been a lot worse with admissions etc as a teenager) but my cons has been brilliant. II have seen the specialist reg then cons twice in the past two months so am still in the early stages but they listened to my symptoms, looked at my test results and said the fact that I respond to the meds confirm asthma even without big attacks and wheeze. It seems strange to be officially diagnosed as having severe asthma without admissions and apparently it is not text book but they have emphasised that I can't become complacecent. They are looking into other background condo fictions like Gerd even though everything points to allergic asthma and are more focused than my GP was at treating these (particularly hayfever). They also went right back to basics medication wise by changing my inhaler to symbicort and then trying an MDI seretide not accuhaler to see if these have an impact rather than just adding meds. Plus, after a bit of me wearing them down, I now have a plan recognising that I rarely wheeze and respond to relievers really well which makes getting pred/Nebs/help quickly much easier. The cons is also working with my GP and speaks to him on the phone to offer him things to try too which I thought was really good. Although I know cons and teams can be variable, I hope this can be of some reassurance as you sound as though you could benefit from a specialist. Sorry if I rambled a bit too!

Take care

Thanks Kayla for your reply, it's given me hope that I might too have a positive consultant experience, even with my wierd asthma!!

I still need to try the other options before I can look at a referral, but I know when/if I get there, I'll have plenty of support on here from everybody. And maybe I ought to be less stubborn, and try the additional medication that is available, rather than suffering. It really does mean a lot to know that I have people I can turn to who understand my fears along with my ups and downs from their own first hand experience. xxx

Hey Butterfly,

I hope I haven't worried you with what I said about licencing!! Its not that medically trained people can't go outside licencing recommendations, its just that that's what it is recommendation!! My GP follows the guidelines to a ""T"" and won't deviate from it. Though interestingly, a few months ago, I visited OOH (trying to avoid an admission - and when I was still on Seretide) and the Dr there told me (after nebs) to call back if I was still unwell and possibly take seretide 3x a day ... or go in if things hadn't picked up. Its a while ago so cant remember the details ... so much has happened since then!!!

I still reckon that getting/asking for a referral would be your best option. It's good that your GP is helpful with trialling different meds - does he have a special interest in asthma? All guidelines suggest that at step 4 and 5 of management a referral should happen - adding either maintenance pred or theophylline put you at step 5.

I really do appreciate your support, especially when you're so ill yourself, thank you x xxx

I have had a better day than normal today - which I have used to sleep ... I have not had a night for a long while where my asthma has not woken me up/kept me awake. Its good though that however bad my own experiences currently are with my asthma, that they can help others to hopefully avoid getting to that point!

Hope you're sound asleep tonight!!!

Laura xxx

in reply to

Its OK I wasn't worried, more surprised tbh, I thought GPS tended to follow thinks to the letter in terms of medication.

No the gp I see isn't the asthma one ( he is rude and obnoxious so don't see him, sits a picks his ears while you talk to him etc, he's lovely with the kids though which is weird) so I'm not sure why he isn't just referring me, do they have a quota for referrals?....just wondered if he'd maybe exceeded it and could afford any more this month or something crazy!!!

I am a bit better today anyway, pf is around 77% and only used salbutamol twice today so I haven't seen gp ....I'll see how it goes!

hi all

I went to my doctor today due to having a really tight chest, coughing etc and surprise, surprise no wheeze, so she told me to take 6 puffs of my ventolin inhaler every 6 hours until monday and if that doesn't help then probably pred. just thought that sounded like quite alot, but I guess it's worth a try. she also mentioned that if my chest was really bad then I would be wheezing, even though I explained that I don't normally wheeze! I'm starting to think that there arn't actually any doctors who accept this?

lejaya

Oh no Lejaya,

Sorry to hear you are struggling again and are having the no wheeze issue although I will problem be joining you with in the next hour as I have an appointment with the duty doctor who said on the phone ""you don't sound too wheezy but come in and we will have a listen""

Can't offer any advice only I know how you feel support!

I do have one GP who isn't hung up on wheeze and another who will act without a wheeze but is a bit puzzled so they are out there. Unfortunately, these two always have a long wait to see them.

I hope the extra Ventolin does work for you. Take care.

hi kayla

how was your appointment? i hope they were helpful, I will probably go to the walk in center if no better over the weekend, also coughing up huge amounts of phlegm (sorry!) so I very much doubt things will improve, but hoping they will.

lejaya

Exactly as expected! The doctor was lovely but was puzzled by the lack of wheeze despite me obviously struggling. Said she didn't really know what to do as don't need pred, I explained that this is how it starts and I end up on pred anyway so could I have it now to try and nip it in the bud, doctor not sure about this but arranged telephone consultation with asthma nurse tomorrow to see how it is going! I didn't even get the Flixotide recommended by my cons to deal with excaberations. I'm seeing my usuall GP who is quite good with no wheeze on Monday to discuss my concerns about discharge from cons so I think I will mention how difficult it is to get pred then. I mean it is not like I enjoy the hunger, insomnia, sickness etc but five days now is better than ten days later!

Sounds like you need something more than Ventolin. I often found myself turning up at the walk in centre after seeing doctor. Unfortunately our walk in centre was closed and changed to a minor injury unit at the hospital which is part of an urgent care centre. They don't deal with asthma and you end up in a&e even if it is not an actual emergency. They were very good when I cut myself badly though!

Well I ended up in a&e last night with an asthma attack and had 3 nebs and steroids and my blood test showed infection, and the nurse didn't even need to listen to my chest cause I was wheezing that badly! So im not very happy with my doctor, if she had of given me the right treatment based on my symptoms alone then I might of avoided a long night in hospital.

however I am so glad that I was wheezing as I was treated quickly and without people doubting my symptoms.

lejaya

Glad to hear that you are home again. Hoping things improve soon.

I agree, it would have been better if the doctor had listened earlier rather than letting things get so bad.

When I went to A&E at the end of last April there was a huge difference in the way I was treated by the doctor who heard a wheeze (at the end of a forced exhale - he was the only one who even asked me to try to do that) and the doctors who did not. Glad the wheeze showed up when you needed it!

Hi Lejaya,

Hooray for the wheeze - the difference in treatment on the occasions that I have wheezed to where I haven't are so different even though if how I am feeling are the same (to the point where I once phoned up the doc to say look I am wheezing now!) However, like you say, it shouldn't be like this. My visits to A&E are often after an unsuccessful doctors visit in the previous days (I am gathering we have the same problems fairly regularly).. I hope you are starting to feel better soon.

I wrote on another thread about my appointment yesterday but I met an amazing doctor yesterday who, espite never seeing me before and me being convinced it was a wasted journey for the same reasons, really listened and said even though my chest was cleanish, I obviously knew my symptoms and what I needed. To the point where she even asked if I wanted pred and what dose (quickly pointing out that she does know but believes people with my history probably know more about works for them). So there are some GPs who don't just listen for wheeze!

Take care

Hi Kayla

really pleased you saw a helpful doctor, it really does make such a difference when they actually listen rather then making you feel like a fraud. I have often ended up in a&e or a walk in center cause my doctor hasn't treated me properly, none of them seem to listen anymore, they just want to get you seen and out the door as quickly as possible. so far at my new surgery which has 4 docs and locums, I have only seen one helpful doctor who never has appoinments, the others all just fob me off with no wheeze no asthma or it's a virus!

but hopefully we will both be feeling much better soon

lejaya

Hi! I'm new in the forum and couldn't help to share my experience after reading the threads about silent asthmatics. It is very annoying to be another no wheezing asthmatic! Usually wheeze when I'm suffering a serious flare. I have been diagnosed recently but I had to visit my GP 6 times! As my chest was clear it wasn't asthma, despite my night/early morning heavy cough, my PF readings (had to get and pay for a PFM in the local pharmacy) First he prescribed me antibiotics to treat what the thought was a chest infection. It didn't work. Gave a try with steroids and the made their job, I was fine during the treatment. But, when finished the symptoms returned. Eventually took X-Rays and my chest was clear of any sign of infection. Diagnosis: asthma! He made me feel like an hypochondriac wasting his valuable time with my silly symptoms. I knew from the very beginning there was something going on with my cough and breathlessness. Recall very well my first attack and it was really scary, thought I was about to die. After that I was determined to find out what was wrong with me. Was a very frustrating and infuriating experience. He prescribed me Seretide and it worked for me. Had a two month treatment and right now I am taking nothing and my PF are fine so far. Thanks good I keep the blue inhaler with me.

Thanks for sharing your experiences, it's relieving to know I am not the only clear chest in here xx

Welcome, Edda! I'm sorry to hear that you felt so dismissed by your doctor.

I've also had the experience where a doctor has tried to treat something as an infection when I was fairly certain it was asthma. A certain doctor several years ago didn't hear a wheeze and insisted on treating it with antibiotics. It was only after I failed to get well that he was willing to renew my asthma prescriptions so that I could treat my cough with inhaled steroids. On the other hand, this year I had a really terrible cough that turned out to be both asthma and an infection. So sometimes even with an asthmatic it can in fact be an infection.

I know it is frustrating to wait while a doctor figures out the cause : infection, asthma, or both. Glad to hear that you finally got it sorted.

Were you prescribed seretide for only two months? Normally, preventive medicine like seretide isn't meant for a short course, but rather to be taken daily in order to avoid future flares.

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