Started about 14mths back with a case of oh dear, why can't I breathe. NHS helpline said get to A&E. Went. Had nebuliser with something else and some steroids. Kicked out next morning with blue Ventolin, pf meter and that was it.
Over next few weeks had a couple more can't breathe episodes and after calling gp was given an appt.
Few months later and having seen asthma nurse and gp a few times and having inhalers changed over and/or strength increased I'm told I have possibly severe asthma with copd which is difficult to control. Mm.
I am waiting for referral apt for resp consultant and it seems I will be having a ct scan.
Now, back to the title of this post. According to asthma nurse and what I've read, my pf for my age and height should be around 400 ish. Best I've had was 260.
On occasion, like now it drops to 90 and I need my blue inhaler which seems to work to relive a little after around 10 minutes. My pf goes to about 150 then.
The little app thing I have on my phone(I filled the paper thing that came with my pf meter) suggests that below 150 puts me into the red zone and certainly the 90 reading does.
As I am not crawling around the floor gasping for breath should I be going to A&E or not?
I know that in a few hours I tend to be back above 200 on my pf. So I guess low readings are normal for me.
None of this has been explained by gp or nurse particularly well tome so I'm curious what you guys think.
Sorry to hear you’ve been thrown into the deep end with it all!
First off PFs are personal - some people never get their predictive, others go miles over it... that’s regardless of if you have a resp condition or not! (My best as a severe difficult asthmatic is 630, predicted about 450(I think), a friend with same predicted as me but no issues can only get 350...)
If you’ve had days when you’re completely asymptomatic and have done you’re PF, then you can use that as your best. Over time, with practice and on the right meds, it may increase, which just means your boundaries will change.
So boundary wise use your best... for asthma (COPD may be a little different so can’t advise there!) it’s usually 50% PF or lower (130 or lower for you) is red zone, and 50-75/80% (130-190ish) is yellow. I also use ‘black’ zone which is 25/30% or lower (70ish) and needs hosp regardless. Dropping to yellow suggests a GP visit is warranted for possibly steroids or a change in meds. Dropping to, and remaining in, red warrants a hospital trip. If you can reverse it to yellow then you need to see your GP ASAP for steroids and if it happens regularly then a med change or addition is warranted. If you can’t reverse it or if you can’t talk with a normal speech pattern (gasping every few words) or can’t walk/eat/sleep without issues then a&e it. Doctors always want to see us earlier in the process than later - it’s easier and less stressful for them! Asthma is rarely as dramatic as it’s portrayed on tv!
Ventolin does take 10ish minutes to kick in and if you’re struggling you can take up to 10 puffs at a time (tho really you should see your GP if you’re having to do this). 10 puffs is about the equivalent of a nebuliser. Each time you take ventolin (however many puffs) it should last 4 hours, if it doesn’t you’re not controlled and need help somewhere (hosp if quickly dropping back to red). Ideally (for asthma) you shouldn’t need your blue more than 3x a week - it may seem impossible now, but on the right med regime for most people it is! Some people do get a large variety in PF but that’s also a sign of poor control too. You probably will find it worse pre-meds in both the morning and evening, but if you can get it into yellow and stay there after meds (and you feel safe) then I’d suggest a trip to your surgery to see if there’s anything they can give you in addition to help.
What meds are you currently on? Have you had a lung function test yet either? It may be worth asking for one whilst you wait to get to the hosp cons.
I hope that explains some things about asthma for you anyway 😅. Fire away if you have any more questions... no doubt someone on here will have an answer for you 😉
Thanks for the responses. I've had 2 spirometry tests on diff dates with Ventolin after each and showed a marked improvement in response to the inhaler.
They have me on Seebri in the morning and 2 puffs of flutiform (highest strength now I'm told) it was seretide then they changed it and put me on a low dose flutiform.
Evenings it is 2 more puffs of flutiform and a montelukast pill. Ventolin is as and when and I have been using it more than 3 times per week which I have told the nurse and gp when I see them.
I hit red readings 130 or less when it is colder or damp out and always red with a slight bit of exercise like walking up 10 steps or 50yards down the road.
Stupidly went on hols and had 160+ steps up to apt. Had to stop several times each trip up and use Ventolin. Nice views though...
The nurse reckoned on my last visit that the resp consultant would probably change my inhalers again and maybe give me steroids in addition to what steroids are in flutiform. She did seem a bit vague even though she commented that my spirometry was very low on fev? And pf.
Guess I'll just have to wait and see if I can get any sense out of the consultant.
The fact spirometry improved after ventolin indicates asthma more than copd as I've been told if the spirometry does not improve after ventolin then it's copd.
I have asthma and had a few spirometry tests and that's how they explain the reverse spirometry test (after ventolin)
I find PF's to be worse than useless in the case of how bad my asthma is. Many resp consultants have gone away from treatment based manly on PF. 'treat the patient not the numbers'. It does depend on what Dr you see and often those that have only very general Asthma knowledge rely heavily on PF for treatment levels.
Generally unless I am ill/in hospital I don't monitor my PF. I usually go by wheeze/tightness and length of time I have been experiencing symptoms . Using ventolin is often an indicator for me as usually I do not use this unless my asthma is spiralling. I keep steroids at home so I can start them immediately If I'm struggling. I try to at least give it a couple of days on the steroids without seeking medical advice.
I struggle turning up to a&e and will often delay to the last possible second. This is down to years of turning up unable to breathe and being told to go away I'm making up my symptoms and/or imagining them. PF is a massive issue for me and I find it very unreliable. When I'm well my PF sits anywhere between 450 and 550 which is higher than usual. However during an attack it may only drop to 350 meaning that its still higher than would be expected. The lowest I have ever seen my PF was 140 and I had nearly stopped breathing at all by the time it dropped. Often the other indicator used is o2 sats and mine never drop below 95 even during the worst attacks. With all of this and no breath to explain any of it to an a&e doc I avoid going If I possibly can as its a battle to get any treatment.
As you get more familiar with your Asthma you will get to know your 'normal' However I would warn you the Asthma is very changeable and can and will present differently even in the space of a couple of weeks.
Hope you get things sorted soon. If in doubt at all speak to a medical professional. Better that than become so ill you need invasive treatment.
Sounds like you have had some real "fun" with A&E before.
I was lucky(?) on my only visit to them. I found it hard to sit/stand, breathe in anything other than 5 second gasps and was clutching my chest(it did kinda hurt). I couldn't really speak to the reception lady and as she was explain on her phone to someone in the triage area I heard her comment that I was a bit grey with bluish lips. Less than 3 minutes later they had me on a bed.
I don't want to repeat that again in a hurry. Looking through some of the posts on here it sounds like quite a few struggle to be taken seriously when they get to the hospital.
I don't want to go to A&E and waste their time if I'm not really that ill. But, I also don't want to get as bad as my last visit before I do ask for help.
I never go blue even when 02 drops although I do go extremely pale. Please do not think that not going to A&E saves the staffs time. It doesn't. Better 20 mins in A&E with a nebuliser than a lengthy stay in hosp. If you are in any doubt with your symptoms you can give NHS 24 a ring. They can get you an emergency apt with a local hospital/Dr who can assess you and prescribe additional treatment. I struggle to get treatment so unfortunately I have got to the point where I will deny how unwell I am. Even (as happened in September) where a nurse is standing over me strapping a neb to my face an preparing for emergency intervention. I was still telling them that I was fine. :0.
Hopefully you continue to have better luck with treatment.
I think this is the typical response of a severe/atypical asthmatic... we all stick our head in the sand and avoid the situation for as long as possible 😅 (I’m *wheeze* fine *gasp* I’m *huff* fine *puff* 😂😅). Even as a ‘textbook’ asthmatic, with a wheeze and reliable PF I’ve had some very bad experiences in a&e and as an inpatient because my best is so high! Plus I have a habit of responding well to a few nebs so they don’t give me anything more until I crash back down again a couple hours later 🙄
Personally I have to rely on my PF reading to prompt me to do anything because I have compensated so much over the years (pre severe diagnosis and biological treatments) that I won’t recognise an issue at all until I’m below 50% and don’t ‘feel’ bad until I’m between 30-40% by which time a&e panic and my sats are usually dropping (I too am a ghost not a smurf 😉). I usually suggest to newbies if they feel bad head in or if their PF is low but boundaries for symptoms is hard to describe other than for dangerous levels as it’s so variable and individual 😅. If you have a reliable PF then that is something to base things off of.
As I said based on feelings I’m useless, I have safe or unsafe as my categories- case in point I currently have a chest infection but my asthma doesnt feel bad - the other day went to gp for ABs as PF at 40% but not ‘asthmary’ to me... apparently I had silent chest starting and severe global airway restriction however still felt safe 🙄... he wanted a&e, I wanted Chinese... I did both 😅.
Good resp cons listen to the patient- if they aren’t PF droppers they discuss symptoms, if they can’t feel symptoms they discuss PF... we’re all different and individual! And I really wish docs would learn that sats only drop in asthma when you’re really really bad!
I quite agree that as you get to know your condition you’ll learn what to do and when, but most docs/hosps would rather see you early than late, plus if you’re not sure you can go to urgent care!
Good luck with finding your path and what’s right for you! Hope that appt comes through quickly for you!
I tend to find that my earliest symptom is fuzzy thinking. Particularly apparent when driving or trying to hold a conversation. Also i become extremely irritable and will act out of character. However these things are much easier to spot post treatment not when your reacting at the time.
This rings a bell. I act like an idiot and if I was at work would try to stay and finish something off. Then when I came back I'd have to redo it. I stopped that because idiotic thinking wasn't well understood by work as a sign of asthma and it wasn't really good for my career! I also try to work from home at times and give up because even if I am at that point safe to be at home, I can't sit up and focus on work.
i'm lucky In that my managers are very understanding however I didn't recognise this as a symptom until recently myself, I wasn't sure if anyone else experienced the same.
Mine are now but in a previous job when I was learning all this about myself, they were sympathetic/understanding up to a point and I felt I had gone past it a few times. It is much easier now they just say don't try to work we will sort it, rather than making me feel like I am letting them down a bit and I should maybe try to do the work (admittedly that feeling was in my head too until I learned it was best not to try).
I hated the feeling of being pressured into working. I used to work in the care industry and I used to work well past my endurance because I knew that if I didn't go in there was nobody to take my place. its easier now where I'm not the only person on shift.
I'm with you. I have been asthmatic for 32 years diagnosed for 28 and this year was first I ended up at A&E I was reluctant to go because like you didn't want to waste time.
The day before I ended up in A&E my friend called ambulance paramedics came and nebuliser me but didn't go to hospital because I said seeing GP next day.
Next day it was GP who sent me - said don't have nebuliser in surgery and sputum results showed bacterial infection and GP said hospital would decide the antibiotics and nebuliser me.
So I found myself in A&E waiting room I got worse while waiting.
They were fab put me on nebuliser took bloods and chest xray. Sorted out antibiotics gave me an extra course of prednisolone and arranged an appointment for after the weekend to see a Respiratory Nurse
It just goes to show how different we are. I think I lived with asthma for some years without knowing I had it, and gradually just got used to the limitations in my breathing. So much so I now am truly useless at ‘feeling ‘ my condition and instead rely on a variety of ‘tricks’ to help me, like pf, an oxymeter (less useful but has its moments), like imagining myself going snorkelling and would I enjoy it/feel able to do it. My latest, as yet not developed is to compare a pf reading to how long I could very gently hum a note. It has yet to be proven as useful. Even coughing I can dismiss as have had periods of coughing throughout my life and now just dismiss it, unless it is more significant, like stopping me sleeping a lot. I am truly working hard at trying to learn how it feels! And if I don’t feel well, not just dismiss myself as a wuzz.
The best thing for me now is that I have a few friends who will not hesitate telling if I can’t speak in my normal way. I truly do not notice! One friend says she can easily hear it on the phone, so now I can just ring and ask, and I have done, once. Or if my breathing is laboured - again I don’t necessarily notice, and don’t trust it if I do, so I am grateful when it is pointed out to me.
The most effective help was from a friend who is also a doctor (a psychiatrist) who sat me down and read me the riot act a couple of years ago. I was really grateful as I also felt validated- relating to those moments when I can feel something but dismiss it as my wuzzish ways. She had held back for some time, but in the end really took me to task. It didn’t unfortunately help me argue with doctors, but then I have rarely had the need.
So while the pf isn’t the be all and end all, for me it is an important tool. Just that, a tool, not god. One thing that can help.
I wasn't trying to knock PF readings. I'm sure many people find them helpful. I however don't as there is no variation on my PF even in the middle of a Asthma attack. I have also found that Dr's who don't have a lot of experience with asthma often over rely on things like PF or oxygen levels and will make decisions based on them even when I am struggling to take a breath.
As I said earlier during my last admission the senior consultant came to see me picked up my PF notes threw them away and asked me how I felt. He used the phrase "treat the patient not the numbers" I was so grateful as it was the first time I felt that a Dr was actually listening me and not dismissing what I was saying because a bit of paper was saying something different.
Yes, I fully accept that. Our daughter, also an asthmatic, hates the pf - probably because I made her do it when a child, and it always made her cough - and like you, she knows how she feels. As I said before, pf is just a tool, not a be all and end all, and, yes, I can absolutely see that doctors that treat it as more than that really don’t know. I was asked, on the other hand, how I felt at my last two consultations (Boxing Day and yesterday) how I felt............ My answer basically was ..................?...........don’t know...........??
Though I did know very well I wasn’t well. It’s like I need an interpreter to speak for me, though I am usually quite articulate. Unfortunately, my husband, who gets very worried, can’t hear it either, thus the brilliance of these mates around me.
It can be frustrating especially with low level symptoms trying to put them in to words. Even worse when your put on the spot. The one i find particularly frustrating is 'what do YOU think we should do to treat you' this usually happens at least once a day while in hospital and im sitting there thinking if i had the answer to that do you really think i wouldn't have told you. I guess we all learn coping strategies and ways to deal with things over time.
It reminds me of when I was in hospital (only once so far) when I was asked if I felt OK, not,long after admission. Now why would I even be there if I felt OK, was my slightly acerbic response.
I get that all the time from the nurses. The sympathetic head tilt and the how are you feeling today as my chest is sounding like a squeaky door with every breath. It take everything i have just to bite my tongue and not go oh yeah im fine thanks think ill just pop out and run a marathon
I get so frustrated by this question when asked by docs in a&e or people who don’t know me... what’s the correct answer? My usual answer is ‘not great but not bad’ if I think I should be admitted or ‘I’m fine’ if I feel safe to be at home. 2 weeks ago I had my cons and an telling me off for my response to ‘how are you feeling?’... my answer was ‘I’m fine and ready to go home’. (Genuinely felt fine 😅) ‘no you’re not... you’re PF is all over the place and only getting 70% after nebs... you’re not fine!’... ‘but I do feel fine!’ - don’t ask if you don’t want my answer 😅. alternatively I’ve had the ‘My lungs feel a little twitchy’ response and been told that I’m fine and good to go 🙄.
I always feel like I’m being judged by my answer... if I feel bad but they think I’m fine then I feel a fraud and they treat me like I’m making it up 😒.
Mind you I don’t help myself in hosp... I’m a smiler/giggler (usually from nebs or as a front as I save my breakdowns til I’m alone) so usually present better than I am cause of my mood... luckily I have the muttley laugh which is recognised as an issue 😅
You’re welcome. Your cons (when you finally get there) may send you for a complete LFT not just spiro, which just consists of a lot more tests, but may help point to which condition is more prevalent in you (asthma vs COPD), and yes they’ll probably change up your med list too (there are a lot of drugs out there which are available but you haven’t tried yet).
Learning how to pace yourself when you’re struggling is difficult, but you don’t want to stop everything... glad you had some good views!
Good luck and hope things calm down for you eventually x
Peak flow 20% lower than normal needs quick (urgent gp appointment)
50% or lower ambulance
Same for symptoms breathless that doesn't respond to ventolin ambulance
Breathlessness that goes away with ventolin but returns urgent gp
Ventolin not lasting 3-4 hours ambulance
But generally go with your gut.... am I out of my depth gp or 111 (111 will want you in an ambulance)... most gp's will give advice calls where they tell you back and offer advice and reassurance
Thanks to all for the advice and tips. Got a better handle on it now I think. I'm down a little on my pf just now after evening inhaler and pill and very tired so I'm carting myself off to Bedfordshire. Thanks again everybody.
I'm under a consultant who has told me I don't have asthma but as the stuff I'm taking is working not to stop taking anything until he finds out what it is
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If it’s significant—short of breath after very light exertion, or struggling to talk, SOB while resting, and you can’t relieve it with what you have at home, go to emergency. You can’t actu tell what’s going on with your lungs.
Wait too long and you could end up in ICU, intubated.
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