I've finally got my (re-)referral appointment tomorrow but unfortunately with the same doctor who told me I needed to reduce my meds as my peak flow was too high 🤦🏻♀️, this was despite needing ventolin a few times a week and having quite large daily and day to day variability in my peak flow.
She told me to aim for my predicted value of 400 as my personal best and daily values were too high (pb 630, usually symptom free above 570), I spoke to asthma UK and agreed this was a load of rubbish.
So, has anyone got any tips for dealing with difficult doctors?
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Glty
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Think I'd say that Asthma UK have firmly informed you this is not the right way round, the predicted values are average, people must go with their best not the predicted. Easier said than done I know.
I'd want to be sure if breathing issues were asthma or post covid (if that applies here) - they feel very different and respond to different things. But no way should they be negating asthma on the basis of pf values that are irrelevant to you. Gah. (Sorry I know that's your exact predicament!) The opposite is someone who has no asthma but a lower than predicted pf. On that basis the doc would presumably say asthma as pf too low. But maybe just has a low pf naturally and no asthma.
Yeah it is post covid too, but the majority of my lung symptoms respond to ventolin and I get variability in daily peak flow as well as big drops.
My long covid breathlessness eased massively over the summer with lots of yoga breathing and belly breathing practice. And with building up to walking very slowly.
I just wish my heart rate and fatigue could be helped so easily.
How do you aim for a lower peak flow🤔 Do you allow your breathing to deteriorate? Good luck with your appointment. I hope it will be of some benefit to you.
I would be honest and perhaps insist on seeing a different doctor if possible?
Not the same situation but whilst pregnant I was consultant lead and the first consultant I had a couple of appointments with was horrible..really rude and dismissed some concerns I had at the time..so I put a complaint in and next thing you know I got an apology and was put with another consultant. It wasn’t the easiest thing to do but glad I spoke up..
Best of luck and I hope you don’t have to go through a bad experience again.
Hopefully it'll go better this time 🤞🏻. I do now have a very sensible person coordinating my care through a long covid clinic so I do have some back up. I've been seriously struggling with my asthma for 11 months and really don't want to have to join another waiting list.
But if you do have a problem with her again and she persists that she is right to tell you to lower your peak flow rate to predicted values I would suggest that after the appointment you write to the PALS team at the hospital in formal complaint and tell them your concerns. From the sound of it, she needs to go on a refresher course.
Out of interest, is she a consultant or is she a registrar? If the former, is she actually an asthma specialist?
I spoke to the consultant this morning - it was a registrar back in October, her specialism is respiratory medicine according to the hospital website.
She has agreed to transfer me to a post covid asthma clinic but it's not actually set up yet. In the meantime she'll continue to see me in the post covid chest clinic.
We definitely don't agree on lots of things but I do now have a plan to reduce the pred which I think might work, even if I'm somewhat skeptical about her rationale.
I’ve come across medics like this in my time - not with asthma, thank goodness, but with other issues. The first time it happened I had my husband with me, who is a highly qualified scientist/engineer. He was horrified that some medics do not seem to get that the mean is just that - the mean. There is natural variation which leads to “the mean”. If a doctor doesn’t understand that - well, words fail me. On this occasion my husband politely requested a second opinion. Later he was scathing about the lack of understanding to me.
I remember being told once (actually at an annual asthma check) that I could do with putting on some weight: the average for someone of my age and height was a stone (6kg) more than I weighed I was told. My weight was fine and comfortably within the recommended range. I looked at the nurse concerned, kept my expression absolutely neutral and replied, “yes, well I’m not an average build so it’s probably not surprising”. I didn’t get a response. I confess I left the room inwardly grinning and made a mental note to avoid that nurse in the future if possible.
I’ve got to the point now where I will query/correct any medic (including consultants) if they say something which I know to be incorrect. The good ones will listen and be perfectly reasonable about it. You could try asking her to explain her reasoning, and then explain why you think she is wrong.
We did ask a friend of ours (who trained as a doctor around thirty years ago) about how much statistics they were taught at medical school. He replied that that it had been very much a “one model fits all” approach.😳
LysistrataAdministratorCommunity Ambassador• in reply to
What gets me about peak flow is that I learned the stats necessary to grasp it in about...year 7? Year 9? It's not massively sophisticated to understand that a population mean isn't a value that applies to everyone invariably. Do they never revisit the basics?
LysistrataAdministratorCommunity Ambassador• in reply to
I really dislike doing key stage 3 revision with someone when I can't talk properly.
See also: giving lessons on why wheeze doesn't equal bronchospasm when I can't talk properly. Especially when they've tried to give me a patronising but incorrect lesson on why nebs won't help.
You've got a good point there. I think I might start growing some and just question things more instead of having these silent conversations in my head then double checking im right on here first when I know I am it's just confidence as cons have a way of making you doubt yourself! Fair play for having the balls to do it!! X
I’ve learned the hard way that sometimes you have to. Back in the 1980s I was told by a consultant that my asthma was mild (I’d been referred to him to have my asthma meds reviewed). He told me that from my history and the meds I was on my asthma was mild and put me on the lowest strength of Becotide. My asthma got worse. I reported it to my GP, was told it was probably down to my technique. It took another appointment before I got a ventolin inhaler off him (yes, I wasn’t given one initially), but he wouldn’t change the steroid. Eventually of course I got a bad infection, ended up with pneumonia and my asthma spiralled out of control very quickly. I ended up in hospital. The consultant then decided that the meds I’d been put on obviously weren’t enough and put me on something stronger.
I learned a valuable lesson from that episode: doctors, even consultants, are quite capable of getting it wrong.
I just wish we could trust our consultants and not have to get 2nd opinions all the time!! 😫.
I had an appointment today meant to be reversibility spirometry with nebulisers but they decided my previous lung function was good so didn't need the full test or reversibility... so basically waste of time...again. it just never ends does it? If I had the money at this point in time I really would go private I just need answers, diagnosis and treatment it's doing my head in dancing round in circles it's been a year now and still no further!! Sorry for rant😂🤣🌻 x
Oh no, that's horrific! They refused to do reversibility on me back in September cause I can't possibly have asthma with scores that good 🤦🏻♀️. So sorry that it didn't go well today -why do they not understand variability?
Absolutely no need to apologise for the rant, I'm hoping I won't be joining in with you after the call tomorrow 🤞🏻. When do you find out what they want to do next?
Its basically what their getting at again I think "the whole it's not asthma" I've been messed about with the mannitol test but now have it fri 5th march, but wed 3rd appointment with cons to discuss test results... I said today does my cons app need to be changed? Apparently not as he doesn't need results.... so 3 f2f appointments in 1 wk while shielding and lockdown plus had to go there at weekend for pre appointment covid test. So 4 appointments in 1 wk!! I'm glad having tests but annoyed at same time as today's wasn't full test so pointless, an surely wed app best after fri app?! But what do we know!! X
Why don’t they understand variability - because far too many of them don’t understand basic statistics. Apparently in recent years there has been recognition that actually have some understanding of statistics is useful in medicine (surprise, surprise - most scientists I know would say it’s absolutely essential in any branch of science).
Hi, I can't comment on your doctor or condition but I have a difficulty with my own doc at the moment and I have to make a note of what I wish to say and just be honest. I would normally have someone with me but of course its all over the phone now.
If you are not happy ask for another opinion.
You could just ask to see someone else or say you disagree and why. Take a deep breath and ask them to help you understand the medical reason you have to change. Explain that you disagree and why. I am sure she isn't the ogre you think.
If that doesn't work, you could imagine her first thing in the morning, all dishevelled, curlers in her hair, mascara everywhere and wrinkles. That should work and help you to relax.
If you really are not comfortable with your doctor, you might be able to see her colleagues. Good luck.
Hi, if you haven’t already it might be useful to print off the response from Asthma U.K. , or ask them for a written response . Alongside this I would gather additional printed information from established organisations such as the British Thoracic Society or verified clinical research reports.
Personally I would present this as information I had gathered to understand my concerns and then ask your GP whether she can now understand your viewpoint which is validated.
We all know doctors vary and some see their relationship with their patient as more collaborative especially with variable chronic conditions whilst others don’t.
If she remains steadfast and you can’t accept what she says I would ask for a second opinion.
I wonder if consultants ever suffer from imposter syndrome? Their utter belief in their opinions floors me at times. And try and ask for an explanation? I had one lady con, from NZ, in 2019 insist that no asthma dr was prescribing Ventolin anymore and she was adamant that I no longer needed it. It was the sheer panic in me that made me speak up and a heated debate followed, with her being quite irritated that I had dared question her statement.
I stress that, despite my panic, my approach was quite measured but I wasn't going to leave until she gave in to me having Ventolin as an emergency med, as per my asthma Japan. I tried so hard for 6 months to follow her MART regime and ended up on the max daily dose for Symbicort and uncontrolled asthma. Fortunately, my asthma nurse was happy to listen to my history and experience of MY asthma and understand how individualistic asthma is.
The last consultant I spoke to, in December, was lovely and completely got that I knew what worked for me and then explained why....basically he had taken time to read my notes.
So what can you say? If anything is said that you don't agree with, my response would be, "I'm sorry, but you're going to have to explain that to me again". And once they've explained it again and it still doesn't make any sense, take the opportunity to express your apology for not fitting the expectations of the chart/opinion, but you would like to discuss a level of meds that you feel confident with. Definitely push it like a negotiation, with you having equal power over the decision. Don't leave without a plan B. If the consultant wants to decrease any medication, then ask what dose you can use if things don't go to plan. And stress you don't want to wait 6 months for another appointment in order to seek permission to raise the dose of your meds. That is a reasonable request. Good luck! Let us know how you get on.
All in all a bit of a mixed result, I did manage to confirm this is the post covid chest clinic rather than an asthma clinic and she's agreed to refer me across once they actually have a post-covid asthma clinic set up (in ~2-3 months time) but will follow up with me herself in 6-8 weeks.
We still disagree about peak flow and a few other things. I'm pretty sure she doesn't believe that the issues are asthma but she didn't see the point in repeating lung function tests as mine were fine in September.
But we have agreed a much slower and more cautious pred taper. I couldn't get a plan B out of her in case things start to deteriorate, as she's insistent that the pred isn't helping at all (based on my blood tests in September - normal ige and eosinophils).
She kept saying that I should expect to feel rotten as I reduce and to use as much ventolin as I need. She also said to ignore my peak flow as it will be lower due to muscle weakness from pred and long covid (she was surprised I can still hit my pre Covid pb after ventolin). I'm not sure how much of this I agree with, but I'm willing to give it a try and intend to speak to asthma UK for advice if I'm still struggling to reduce.
I did highlight that my GP needs much more support and guidance for how to help me in an exacerbation, so hopefully there may be additional guidance in the letter she sends there 🤞🏻.
Oh and yes, she also did the whole anxiety thing too and said I should be on anti-anxiety meds but after a bit of arguement agreed to leave that up to the GP to decide if that was warranted.
LysistrataAdministratorCommunity Ambassador• in reply toGlty
Glsad you got somewhere! Were the blood tests done while you were already on pred? Because steroids tend to suppress eosinophil levels, so if your levels were normal on pred that doesn't necessarily mean pred won't help! IgE is more complicated in terms of pred, but having normal IgE levels again doesn't mean it won't help.
As I said below, peak flow doesn't appear to be affected much by COVID and it certainly isn't automatic that it will be (anecdotal , but fits with other evidence) so that's a red herring really. I can believe your peak flow might easily still reach its best even with long COVID, and I'm a little sceptical that you should 'expect' it to be lower for the reasons she gave. The muscle weakness from pred making it lower especially...I don't know if this might happen after a lifetime, but there are plenty of people on pred who find their peak flow improves, if it helps their asthma, and they don't appear to have muscle weakness issues from it. I really don't know where she's getting this from; I don't have the evidence against it to hand but I'm not sure if she's basing it on evidence at all.
The anxiety thing...gahh. You might have anxiety, but even if all your issues were not asthma and were long COVID, this does not automatically mean you have anxiety or that you need meds for it. If you do have anxiety, as you say this is something you could address with your GP. Too many respiratory doctors seem to think they can 'dabble' in psych and diagnose things this way (to be clear, I know not all of them do it, but none of them should be doing it - would they want a psych dr diagnosing and managing complex asthma? If you as a dr think anxiety is a major issue, refer to someone who can identify and help it - might be your GP or a specialist.)
The tests were all done whilst not on pred but I was well controlled at the time so I'm not sure how much that affects things?
I agree with you about the peak flow etc. There is muscle weakness but that manifests as rib and back pain when I'm symptomatic - I have far less stamina to fight to breathe than I used to but I don't feel that it affects the short term effort you need to get a good peak flow measurement.
I definitely do have some anxiety about not being able to breathe but I think, given the past 11 month's that's totally to be expected.
LysistrataAdministratorCommunity Ambassador• in reply toGlty
I mean that was then, this is now. It may be you actually don't respond to pred (I don't because of my type of asthma, though I still seem to respond to inhaled steroids; it just isn't necessary to add any more). On the other hand, it could be that you have inflammation that responds to pred now, but when you were well controlled any inflammation was well controlled so everything was normal. It's difficult to tell one way or the other from that one set of results - though also hard to tell if you test while on pred, for the reasons already given!
Without being in any way an expert, I would have thought if you can still reach your best PF and your technique is fine then in general peak flow readings are going to be reasonably accurate in terms of the larger airways, which is what they're measuring.
Anxiety about all this is natural as you say - doesn't mean anxiety explains everything or you need meds for it. (Not to say meds aren't helpful for some people in the right place, but it seems a bit of a stretch to go straight there!). I have horrendous anxiety about going to clinic, but it doesn't affect my asthma and doesn't mean that's the whole problem. (Actually it's made worse by anxiety that people will say anxiety is the only/main problem...).
When we upped from 30mg to 40 mg pred my ventolin use more than halved from one day to the next, from 20+ puffs through the day and needing it every 2hrs or so to it lasting 4 hrs again and only needing 2-4 puffs at a time and I slept through without needing any, I continued to improve afterwards. So I'm pretty confident it was helping. I was on antibiotics too though, so it might well have been the combo.
I have low eosinophil levels, and pred helps me loads. I do have to have high doses for it to work though. Eosinophil levels should be used as a guide, I mean if steroids work then they work 🤷♀️
The peak flow thing is ridiculous, if it's low then you need to do something. I would definetly give AUK a ring and go over what was said. I'm not an expert but what she said sounds dangerous...
LysistrataAdministratorCommunity Ambassador• in reply toGlty
I mean it definitely sounds like something was helping! As Melanie says eosinophils should be a guide (and they're on a continuum really, it isn't 'they work at x level but not y level') and you need to consider reality/context! Apologies if I made it sound too black and white there, I think my consultant has got into my head a little too much on this topic.
Well done for standing your ground, especially when you're feeling really rough from covid. Apologies for misunderstanding the full situation; a consultant treating covid in an asthmatic. You've clearly demonstrated how the steroids were helping you as your Ventolin use has halved. At least you secured a slower reduction of Pred.
If you're a CEV patient, then the guidance states you should have also been referred to your asthma consultant in order to receive necessary asthma treatment, separate to seeing and receiving treatment for covid from a covid consultant.
The anxiety thing is frustrating, but it's highlighted so often in guidelines now I'm not surprised by that it's trotted out so often. I've been lucky never to have had this brought up in conversation regarding my asthma and yet I have had anxiety and depression treatment two occasions! My guess it's a reflection of knowing written guidance better than knowing the patient. Some doctors are great at communicating and understanding individual patients, others not so much.
The joint asthma/covid clinic sounds positive and suggests that there are enough patients with issues requiring this service. That speaks volumes.
I hope your recovery continues despite everything and you get the support that you need.
Hmmm, that's interesting about the guidelines. I'm not officially catagorised as CEV though I've been told shielding would be a good idea and it's fairly easy for me to do so at the mo. My asthma was really well controlled before covid just on fostair 100/6, so I've only been under GP care except for the original post covid chest clinic referral in May.
I still think I'm going to be stuck in the situation where I reduce the pred and my symptoms rear their big ugly heads again but I'm probably going to need to do it to prove the point.
Maybe the guidelines should be flexible from patient to patient. I agree with Twinkly below. It's so challenging for you but also because doctors are trying to learn about the various affects of covid on patients and how best to treat them. Guidelines are all well and good for keeping doctors up to date as things develop in a fast moving pandemic, but don't forget each patient is an individual.
I agree clinics that look at the whole picture are needed - not just asthma and covid actually but the whole of the range of post covid issues.
However, I suspect the asthma covid thing will be a minefield.
Some people may well find their asthma is different. But I think, for many, the symptoms will not be asthma related at all. Many many people feel/see breathlessness as asthma (whether they have or had it before covid or not, but maybe moreso if actually they weren't bothered by it before) . But there are far more reasons for breathlessness and so on than asthma, especially having had covid.
I think the difficulties will be
- people's perceptions of what is bad (obviously relative in any case)
- people deciding it's asthma when it's probably not
- doctors treating blindly as asthma when it's not and so escalating meds that are never going to help
- doctors dismissing asthma because someone has had covid so therefore not treating changes that do need treating
- the availability of post-covid strategies that do help (like breathing pattern exercises)
- the availability of doctors and other professionals who are interested in the bigger picture in the first place and aren't trying to pass one off against the other (or in Glty's weird doctor's case.....who have really weird ideas generally!)
So yes combined clinics are needed but, given how asthmatics are not being affected additionally in an asthma sense with covid, I think it's likely the ongoing issues will be more linked to post-covid after it, just as with non-asthmatics.... it's just the asthma already being there muddies the waters, perhaps particularly where it's not been as severe or bothersome previously.
And I think patient experiences will be useful too (well.... realistic, non-dramatic ones anyway🤦♀️😆). When things were just not known about, I know I personally found the experiences you described of people you know of helpful to read. Hopefully future support and clinics and things will be a cohesive thing not a "doctor knows everything" approach.
I think one of the biggest frustrations for me is the constant waiting to be seen to be told - just wait and see, it'll probably settle on its own. It's been 11 months of issues and it's really not settling. I've not had many face to face appointment and all interactions have been at annoyingly good times wrt breathing. I just want to be able to look after myself and get back to work.
No one seems to want to see my peak flow chart and frankly (it's possible I'm biased) I think it shows that asthma is clearly a big factor for me.
I was doing really well over the summer whilst on uniphylin and was able to work on building up activities which reduced the fatigue, but developed tachycardia so had to stop in October and my asthma's been pretty unstable since. I'm still waiting for a cardiology appointment for the tachycardia. 🤞🏻 I don't have to wait too much longer.
Hi, am I missing something here? What's the downside to having a high PF? I mean, the whole idea is to get as much air into your lungs that is possible, right? It's an awfully strange complaint. You could always ask your GP if you could see a different Doctor next time and explain why. Perhaps your GP could explain the downside of a high PF.
You're definitely not missing something. It's a rather nonsensical opinion my consultant holds. She believes I'm over medicated as my peak flow is high and thinks I should be ok if we reduce my meds despite me having frequent exacerbations on my current levels.
LysistrataAdministratorCommunity Ambassador• in reply toGlty
Surely the point of medication is to make you as close as possible to your natural best? This is such a weird view, even if you don't understand (as she seems not to) that peak flow isn't 100% equivalent to asthma control (variation is important there too).
Is she actually a "consultant"? I learned about 10 years ago that not all Doctors working in an area are fully trained (kinda made sense once it was pointed out) and only Consultants are fully acclimatised in their area. Others, although still fully qualified Doctors, are just learning. You could always apologise for being an over achiever... I wish I could.
Even if she is a consultant, she may not be up to speed with all areas of respiratory, including asthma. If this was the post-COVID clinic she may well not be an asthma specialist even if she is respiratory.
I have heard some jaw-droppers from 'general' respiratory consultants in the past about asthma (actually heard them from some asthma specialists too). I would prefer it if they just admitted their focus is on say TB or lung cancer, they don't see many patients with complex asthma and they don't know everything about it.It seems more common (though not universal!) to encounter 'I am a respiratory consultant and I know all about respiratory, also asthma is easy so I know all about it'.
I have also seen at least one respiratory registrar (not quite a consultant but fairly senior and consultant is next step up) demonstrate that he didn't know even the basics about asthma.
I’m due to see a resp consultant in the not too distant future. One of my biggest concerns is that I’ll get someone who isn’t an asthma specialist. Ideally I need to see someone who also has some understanding of conditions affecting collagen and some knowledge of gastroenterology as my current problem is almost certainly linked to all three. Yes I know, fat chance! But I’ll settle for someone from resp who really does know about asthma (as opposed to someone who thinks they do but doesn’t).
I mean, there isn't one really. This doctor is just being weird - I've heard plenty of weirdness from respiratory drs but this is a new one! I've used this analogy before but it's kind of like telling someone who is taller than average that they must aim to be shorter, the average woman is 4 inches shorter than you and has smaller feet, you must be SHORTER, and please stop wearing those shoes, the average woman is a UK 6 so you must wear a 6 even if you are a 9! That's pretty much the level of sense.
As others have mentioned, this kind of attitude comes when people don't understand how predicted peak flow is calculated. It's literally an average value for people of that age, height and sex, based on a sample population. People can naturally be higher or lower than that average, and sometimes their environment can affect it (eg a history of playing a lot of sports or a woodwind or brass instrument).
However, your best peak flow doesn't automatically correlate with how well controlled or severe/mild your asthma is. Regarding COVID, it won't necessarily affect the same parts of the lungs/airways so may not affect peak flow much or at all -a friend with severe asthma who had severe COVID found her peak flow wasn't affected much if at all.
Peak flow is useless for asthma diagnoses, i have 680 peak flow but have severe asthma. peak flow is for monitoring when you feel your asthma is getting worse and the number is dropping. if it keeps dropping then you are having an attack. the lower it goes the more risk you are.
My wife is fit and does not have asthma and her peak is 400.
It's completely true that a high best peak flow, including one above predicted, doesn't rule out a diagnosis of asthma and you can still have severe asthma with a high best. Mine is 630, predicted 470 and I still have severe asthma (though assuming you're a man, and also probably taller than me and your wife, even your predicted best is going to be higher than ours as your lungs are bigger).
Peak flow can still be useful for diagnosis though in terms of variation and how it responds to medication (obviously not in the sense that Glty's doctor means, that's definitely not how it should be used for diagnosis or monitoring!)
It also doesn't necessarily drop neatly for everyone in an attack and correlate well with the attack severity. For some people this is how it works, and it is in guidelines as one measure of attack severity and risk - but it's definitely not the only one! Peak flow measures the larger airways not the smaller ones. So some people have peak flow that doesn't drop neatly, and doesn't necessarily reflect what's going on. I'm one - can be sitting in resus with dodgy ABGs and peak flow lower than usual but above 50% of my best, but have a less bad attack and be below 50% of my best. It's always fun trying to explain this to doctors who often focus a bit too much on peak flow. However, this is why Asthma UK says not to ignore symptoms even if peak flow is still ok.
Apologies if you've seen this already or already know this, but this thread about peak flow may be useful: healthunlocked.com/asthmauk...
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