Frustrated and apparently over medicated

[Glty]

I've just had a frustrating call with the respiratory consultant.

In the 7 months since I caught covid I've had 3 courses of pred, vast quantities of ventolin, added montelukast, upped fostair from 2x100/6 to 8 x 200/6 a day and added uniphylin continus - my GP has been fantastic and over 5 months I'd more or less regained control if I didn't try and exert myself. Then I finally got my resp referral and was sent for lots of tests (2 months ago). On the consultant's recommendation I've since managed to reduce the fostair to 4 *200/6 a day. I also stopped the uniphylin 2 weeks ago as my asthma has improved and I really hated the side effects. My GP suggested I try this 2 months ago but I couldn't cope without it so I've definitely improved in the time since.

I would currently describe myself as having precarious control though my peak flow is not where I'd like it to be. I'm more symptomatic day to day but not spiralling.

On the call I explained the improvements I'd seen, described my symptoms and how my peak flow had responded to reducing the fostair and stopping the uniphylin and that since stopping uniphylin I'm using more ventolin and having more symptoms - not escalating, or that bad but a regular reminder that it might pop back up anytime. However, she couldn't see past the fact that my lung function tests showed no obstruction (the guy said there was no point doing reversibility as no obstruction) and were 120%.

She told me, my peak flow was too high and I am over medicated. She said I should be aiming for 480 (my pb is 620 but I'm currently around 540 which goes up >600 if I take my ventolin). I told her that I had been told predicted values were irrelevant as it should be about my own personal best but she was having none of it.

I expected that we would agree that things are looking better right now but it might be worth looking at something to replace the uniphylin that didn't give me cramps and palpitations (electrolyte tests came back fine) so I'm not getting regular symptoms.

But the outcome was that she recommends that I reduce the fostair further - I'm really reluctant to do so. I don't feel that well controlled atm and it's taken 7 months to get here. I'm going to talk to my GP next week, but I'd appreciate your thoughts and encouragement right now, I'm feeling a bit wobbly.

[twinkly29]

The peak flow thing is ridiculous - you should be aiming for what your best is (as you were doing) not some target that's from a chart of averages that someone decides you should have. It might be worth giving the Asthma UK nurses a call to discuss this.

[Glty in reply to twinkly29]

Thank you, for a few minutes there I started questionning everything I know and if my symptoms are even real.

[twinkly29 in reply to Glty]

Yep, been there! It's horrible isn't it.

[Fruitandnutcase in reply to twinkly29]

I have nowhere near your problems but I found the same with where an asthma nurse thought I should be with my peak flow. I’m 72, 5’2” and normally hit just below or above 400 - I only ever need my brown preventative inhaler.

An asthma nurse I spoke to at our practice a couple of years ago decided that wasn’t good enough and gave me a lesson on how to use my spacer differently! Her method didn’t suit me at all - made me hyperventilate which I really didn’t like.

For me the charts actually helped - I went online found one and discovered that my 400 was pretty ok for my age and height so I went back to using my inhaler the way I had always done.

When that nurse left the new person was perfectly happy with how I was doing things as is the one working there now so I’d say (although I’m not medically qualified - just asthmatic for 25 years) do what you know works and suits you and don’t be bullied by someone who might not even know you. Hope you can sort it all out soon.

[Lysistrata Administrator Community Ambassador]

Were you talking to my former consultant (I nicknamed her Umbridge)?!! Convinced she knows all about asthma despite clearly not knowing some key basics, like using personal best peak flow, not predicted. And refuses to listen at all when she decides she knows better. (Sadly, it probably wasn't her. I've met more than one like this). (The all-time Umbridge classic was 'all asthma can be controlled, even if it's severe'. Yeah that's why the NHS wastes money on tertiary specialist centres....)

As others have said that is completely ridiculous with peak flow. I'm similar - predicted 470, best 630, get crap for it at times. Used to have spirometry well over my predicted and probably still do sometimes, but haven't been able to demonstrate it so they still do the whole 'well 80% predicted is fine'. (And selectively ignore the times I get 63% when I'm feeling fine - spirometry is well-known not to match symptoms, but I feel like they only ever comment when it's better than expected so they can imply I'm overperceiving etc)

It actually drives me completely crazy that the recommendation is not to do reversibility testing if no obstruction or the first result 'too good'. There are several scenarios where you can have asthma and the first reading can look fine but still improve a lot after bronchodilator and you would think that it would be useful to get all the information you can. It's not exactly invasive surgery and if you're there anyway and they booked the appointment time assuming they might have to, I do not understand why they can't *just £$%^^&*!! do it* (As an example, though peak flow based: I can get above my predicted peak flow, do a neb, then get 20% plus reversibility, up to my best or close to it. The asthma cutoff is 15%...).

It does sound like you have a really good GP which is something -I hope they help and listen to you. I used to have one who would just eyeroll when cons said anything really stupid and ignore it; I hope yours has a similar attitude.

I know how it can affect your confidence though - I still often feel like it's all in my head after years of this kind of stuff from consultants!

It may help to call the AUK nurses and chat things through as they're much more practical and aware of this kind of thing (AUK helpline - 0300 2225800 M-F 9-5; AUK WhatsApp - 07378 606728), and generally good at restoring your sanity!

Although you may already know this, it may also help to read this great post to remind yourself that you are right about peak flow here, not the consultant: healthunlocked.com/asthmauk...

[Glty in reply to Lysistrata]

Umbridge 😂 😂 😂, that definitely cheered me up.

I very nearly insisted that they did the reversibility and I really wish I had - hindsight is wonderful isn't it! I'm waiting on a call back from asthma UK, hopefully they'll have some suggestions I can put to my GP. I think you're right though I suspect she'll have a good eye roll when I tell her what happened - shame it'll just be a phone appointment!

[Lysistrata Administrator Community Ambassador in reply to Glty]

Glad it helped! I also at times saw Snape (asthma prof, couldn't make his mind up, one appt I was neurotic and needed to believe I wasn't ill, next appt he was trying to get me on Xolair) and Voldemort (originally just 'You-Know-Who' online with someone else who saw him, but then earned the name when he told me it was all my fault for not trying hard enough at physio. The physio herself said this was rubbish and why hadn't he asked her first?!) Umbridge was also nicknamed the White Queen from Alice for a bit - easily able to believe 6+ impossible things before breakfast.

Ha yes all sorts of things I wish I'd said/done after the fact; hindsight in my case is much more articulate. I can't talk to consultants very easily anymore - it seems to be a side effect of persistently trying to talk to people who act like you're not even there and haven't said anything they need to register.

Hope AUK are helpful!

[gillbee in reply to Glty]

Why was t reversibility done? That’s for asthma. The obstruction is for diagnosing COPD?

[Glty in reply to gillbee]

They said because my lungs were really good, 120% that it wouldn't show anything. Wish I'd asked them to do it with hindsight but didn't feel confident enough at the time.

[Lysistrata Administrator Community Ambassador in reply to gillbee]

You also measure obstruction for asthma - they are both considered obstructive airway diseases. However, asthma is meant to have reversible obstruction and COPD is not. Recommendations say you measure obstruction if you suspect asthma and if it isn't there then you don't need to bother with reversibility because there's nothing to reverse.

However, this completely ignores the complexity of it all. The same ratio for obstruction is usually used for a start (FEV1 <70% FVC) - that's not correct since even if you are someone who has close to the predicted values for spirometry, the obstructive ratio varies by age, gender etc. They should use the lower limit of normal which takes that into account, but often don't.

Not doing reversibility if no obstruction also means you don't get to see if there is any bronchodilator response (not quite the same thing as reversibility to obstruction but part of the picture) A response of more than 12% or more than 15% from baseline (depends on guidelines) suggests asthma, but they usually assume if your first is good you can't possibly reach that, because they tend to assume everyone has the same best value for spirometry.

But if you can actually do 120% predicted at best and you get 80% predicted they will say that's good no need to do anything more, even though you would probably meet the % change threshold. If your best is 140% predicted which is the case for some people (musicians, former athletes etc) 80% predicted is really not good.

The current approach also ignores the fact that you can have other spirometry patterns in asthma (eg something called a pseudorestrictive oattern where both FVC and FEV1 are reduced so there is apparently no obstruction, but other values are not the same as they would be for genuine restrictive lung disease) and that some people with COPD do have a degree of reversible obstruction.

I find these tests are often done by people who are just trained to do the test and don't really understand what's behind it very well (but this doesn't necessarily stop them getting insistent that they are right based on a very superficial understanding). I find it usually goes better when there is a physiologist doing the tests who understands the science behind it.

[ninelives]

Bless you Gity,take a deep relaxing breath.

You know your body better than anyone.

I totally sympathise as was referred to a supposed "expert" a Professor no less.

Before any tests came back he told me I was a hyperventilating hypochondriac.

When the test results were in he said "oh this is very serious".

At which point I told him I couldn't trust his judgement and didn't want him caring for me if my lung function was 52% and did he actually know what he was doing.

After a stand up row we parted company.

I now have an amazing resp consultant.

You will get there Gity ,it sounds as though your GP is very competent which is great.

Should you feel that your breathing is deteriorating please seek medical help.

[Lysistrata Administrator Community Ambassador in reply to ninelives]

Oh you've seen Snape too, ninelives? (Again I wish you had, but I'm more than aware that even asthma specialists can be like this and I doubt he's the only one. I also tend to lose respect for alleged asthma specialists who get hung up on needing a wheeze - they really ought to be past that, even at registrar level. Snape was completely obsessed with peak flow and with how annoying I was for not being as normal as his trial patients. Apparently the real world should make itself like the research world as opposed to the other way round. Silly me.)

Good for you for standing up for yourself and not letting him get away with it! I am horribly unassertive in that kind of situation and need to do better - they've got into my head now. Glad to hear you have a good one now.

[ninelives in reply to Lysistrata]

Bless you.

That professor wrote a horrible letter back to hospital consultant and my GP who had cared for our family for nearly 30 years and took no notice of eminent professor's letter.

That Professor was the most obnoxious doctor I ever met in a 30 year nursing career.He would be happy if just a pair of lungs danced in for a consultation -the fact said lungs were attached to body was a gross inconvenience!

As for non wheezing had fill of Dr"s saying thoroughly perplexed'theres no wheeze' right before I stop breathing!!!!

[Poobah in reply to ninelives]

Wow ninelives! Good for you for telling that consultant to their face what an useless article they were!! Not sure I'd have the nerve (cowardly lion from Oz). Way back when I was about 20, I asked a consultant what they thought about an alternative treatment and was met with "if you try anything we don't administer then we'll refuse to see you". He was so angry, as though I had committed a heinous crime, but I was so desperate for help.

Looking back over the years I've had so many appointments that were a waste of time. But every now & again, bingo! I get to see someone really switched on and it's worth all the duds. Unfortunately, I seem to only see a doctor once before they move on. I recall one lady consultant who saved me - I had been really struggling for at least 2 years and by the time I saw her I couldn't walk 5 yards. I'd seen GPs, asthma nurses, several consultants but she took one look at me and sent me for an immediate blood test. She rang me that evening and she was clearly concerned, my red blood count was minimal and "i shouldn't even be standing up". I was whisked into the chest ward and given a blood transfusion that lasted three days. She was prepared to think beyond asthma and I'll always be grateful to her for that.

I've been told conflicting info and the top man has contradicted himself several times. But I think the hospital asthma nurses are the ones that spend more time with patients and run all the tests, chat and actually listen to the patients. Their knowledge is pretty consistent and they are more than happy to explore for resolutions. They also take time to explain things and are open to receiving phone calls and engaging in email exchanges. Mind you they are part of an very active research team, which probably helps foster their approach. They've been the ones to suggest and secure improvements to my treatment in the last 5 years.

[ninelives in reply to Poobah]

It's great you had a consultant prepared to think outside the box for you and got your bloods sorted.

I agree the asthma nurse specialists both hospital and GP based are in the main experts in their field.

So glad you have a good one.

Stay well.

[Hidden in reply to Lysistrata]

The infuriating thing about the “no wheeze” situation is that it’s believed by so many doctors in so many different specialities. Now I suppose you could argue that if they’re not respiratory specialists there’s some excuse; as far as I’m concerned there’s no excuse at all! I’ve had doctors in different areas convinced that my asthma is mild because they can’t “hear a wheeze”. If they had bothered to read my medical records or had checked the medication I’m on they would realise very quickly that my asthma is certainly not mild. I’ve had one (a gastro consultant) suggest I see a respiratory specialist to get my asthma “reviewed” because he wanted me off my inhalers. Actually my asthma is very well controlled though even if it wasn’t there’s no guarantee they would hear a wheeze because I don’t always wheeze during an asthma flare.

[twinkly29 in reply to Hidden]

I agree - and I know Lysistrata will too. Fortunately I haven't (yet) had resp doctors say no wheeze not asthma but have had many others say it including a&e doctors despite me having a care plan from my resp consultant saying I don't wheeze. It's awful. How hard is it to listen/accept?!

[Hidden in reply to twinkly29]

My current gastro consultant is more sympathetic, or was; I haven’t seen him for over a year thanks to covid. Mind you I have to admit that he is the only doctor (and I include GPs I’ve encountered as well as all the other doctors I’ve come across in my life) who has actually had the decency to apologise for the fact that my asthma was misdiagnosed for five years when I was a child back in the 1960s (despite the fact there was family history and I’d had quite severe eczema for the first year of my life). I nearly broke down and cried when he said that. It meant a huge amount to me hearing it. All other doctors who have heard about it have looked resigned, despairing or have said words to the effect of “I’m afraid that’s how it was back then”.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I have a little more tolerance for doctors not knowing certain things, depending on the speciality. I mean, if I had to see a neurosurgeon or an orthopaedic surgeon I would probably have a fairly low expectation of their knowledge of asthma.

I do think there should be much better knowledge among resp drs, GPs, and anyone involved in emergency or acute medicine who is likely to have to deal with asthmatics. I suspect it's often a training issue, but these areas REALLY ought at the very least to know things like: asthma is a variable condition within the same patient, what is called asthma is a syndrome with a lot of different underlying mechanisms and presentations, and a wheeze is not and never has been required for asthma (it's actually right there in the materials if you look but so many of them do a really poor job of explaining that wheeze isn't needed).

What I do have very little tolerance for is them not recognising the limits of their knowledge. That gastro consultant had no business sticking his nose in and deciding you didn't have asthma - clearly had no idea about it, but still felt able to decide you didn't need the medication! I would very much expect that in that situation they should say 'I will leave that side of things to your asthma specialist, and will ask them if there's anything relevant I need to know'.

I think a lot of them see asthma and COPD as kind of the same thing, except people with COPD smoke and are older...yeah that's not how it works. I also think it's not a great reflection on a doctor's medical training to see ANY disease as entirely reliant on a single symptom! Even if they know very little about the disease, they should have enough training and knowledge in this day and age to know that the disease is not the symptom. But you still get people saying 'nebs treat wheeze'. No, wheeze is a symptom of bronchospasm which is what you're actually treating gahh!

Usually the worst culprits, I find, are resp drs who are not that familiar with asthma and are used to things like lung cancer and COPD where there's more likely to be something there you can see. Not all of them by any means, but they seem on average to be more prone to assuming that asthma is easy, they are resp drs, therefore they know ALL about asthma and you will not contradict them. I still find it a bit shocking that some of them don't always know the asthma basics (at least 2 senior resp drs have informed me my asthma is mild because I have no wheeze, and one was apparently unaware that lungs can go quiet or silent in asthma).

Asthma specialists who come out with stuff like 'asthma needs a wheeze' and 'don't go to A&E unless your peak flow is below 50% of your best'...well, they shouldn't exist, but they do. (And yes, I have heard both those things in specialist asthma clinics.)

[Hidden in reply to Lysistrata]

I’ll admit I’ve never been told that:-).

To be fair to the gastro, he wanted me off my inhalers because he was blaming them for oesophageal thrush - which granted they can cause, but other meds (one of which I had also been on) can also set up conditions which can result in it as well (which he certainly should have known about). He knew about Montelukast and from the frequent references to it I suspect he wanted me on that. I agree with you completely that he had no right to butt in on my asthma treatment. My GP was less than impressed when I related this to her (but then she’d had to deal with me when my asthma had gone out of control). The resp con I saw was very dismissive about it as well and made it clear that there was no way I could come off steroid inhalers and wrote to the gastro with words to that effect (I was sent a copy of the letter he sent:-)). I’ve often wondered if more was said though. When I next saw the gastro his first words to me were “Well you can’t come off your inhalers” and then went on to say that I would probably end up in ITU if I did and I had to remember that people died of this condition. Yes, I do know that actually! After all at the time this happened I’d been living with the condition for over fifty years which was a lot longer than he’d been practicing medicine and not far off how long he’d been on the planet.

Personally I would like to see the training in asthma for all medical staff increased to tie in with a) how prevalent the condition now is and b) more recent understandings of the condition which would include “not all asthmatics wheeze”. Nor would it hurt for all for all cons to go on the occasional “refresher” course to bring them up to date with the latest understanding of various common chronic conditions they are likely to encounter. There is quite a lot of truth in the saying “the more you specialise, the less you know”. Unfortunately in medicine that can have dangerous consequences.

To be fair it’s not just the doctors that are at fault. A couple of years ago I was horrified when a GP, on hearing that I’d had breathing difficulties (which certainly were asthma related) after having surgery for appendicitis, reported that had I been on a medical ward instead of a surgical one I probably would have been nebulised. For goodness sake, it shouldn’t matter which ward you are on! Asthma is asthma! It doesn’t change simply because you are on a different ward. As it was I spent the night on oxygen.

[Glty]

To give a quick update, the nurse at asthma uk confirmed the Peak flow discussion was a load of b*llocks. She suggested asking my GP to add spiriva if I'm still struggling but don't want to go back on the uniphylin. She was pretty cross they want to discharge me.

She also reminded me that it's all advice based on tests done on a good day, that I know my body best and that whilst reducing my fostair is a good aim, I get to judge when/if it's appropriate based on my symptoms/lack of them.

[Lysistrata Administrator Community Ambassador in reply to Glty]

Glad AUK were helpful!! And hopefully your GP will be on board with the Spiriva.

Hope you're feeling less aghh now that it's been confirmed by a professional that the cons was talking BS. I always find that helps me.

[Glty in reply to Lysistrata]

Yes, feeling a lot better now, thank you for all your help. This site is fantastic as are the asthma UK team.

[Smoggy1990Boggy in reply to Glty]

Is it the Spiriva Respimat Asthma UK are recommending? I have just responded to your post as only seen it today.

[ninelives]

Thank goodness you have a knowledgeable asthma nurse,am so pleased for you.

Managing asthma successfully long term is a partnership between you and the medical bods.

Sounds like you have found a gem of an asthma nurse -well done you.!

[oldwheezie]

I find that people who can breath have No idea what it's like when you can't, the panic is awful, and they tell you to relax!!

[Hidden in reply to oldwheezie]

There was a wonderful thread some years ago on this forum for suggestions to enable doctors (particularly some consultants) to understand what it’s like to have an asthma attack. Some of the ideas were brilliant. I seem to recall a couple that involved running 400m or so whilst breathing through a straw and wearing a tightly laced corset:-).

[Lysistrata Administrator Community Ambassador in reply to Hidden]

For a really accurate experience, you could also yell at them about how unfit they are while they do it, how they're fine, how you have asthma and you can do that without a problem on a good day after taking all your meds and a neb and using a Segway. Then inform them that because their numbers as a 30-something 6 foot man are still better than your chain-smoking 90-year-old grandmother who is 4'11", you can't see a problem and perhaps they feel some anxiety around exercise.

I'm not bitter at all

[Autie1]

Love everyone's reference to shape, you know who and umbridge. I have a you know who he is a professor who knows everything but doesn't listen. I have a brilliant asthma team at my GP but sometimes even they struggle with my asthma issues. Ive had 3 referrals to the hospital and everytime I got sent back with Spiriva which im allergic to!!! And discharged... bloody brilliant not!!!

[Tugun]

Don't reduce on her advice - you decide with the knowledge you have of your own body. During a severe flu a doctor who didn't know me and just listened to my chest - no wheeze - told me I was fine and to reduce the prednisolone. I knew I wasn't well ( I have silent asthma) but I also didn't want to continue with the prednisolone so I listened to his diagnosis and commenced to gradually reduce the prednisolone.... and was seconds away from from dying four to seven days later. I thought I was going to die but my body started shaking which must have loosened some phlegm in my chest so that I could get some ventolin in and I recovered. My lungs had closed over to the extent that I couldn't take even the tiniest breath. It was my fault because I knew better. Don't let someone else's statistics override what you know about yourself.

The thing that I did find annoying about the doctor was the sheer arrogance and determination that I was silly to be taking prednisolone when I "obviously" didn't need it. HE couldn't hear a wheeze so therefore my chest was clear.

[LDloveslattecoffe]

Your GP knows you better and if you discuss your concerns they do not have to implement the recommendations. They can keep you on what you are now until you feel ready to reduce.

[Smoggy1990Boggy]

Far too many people rely on peak flow and also are obsessed with wheeze. This is in part due to many people who are reliant on what it says in text books. If you can give Asthma UK nurses on the helpline I am sure they would be helpful. Their number is 0300 222 5800 and they are open Monday - Friday 9 am until 5pm. I totally understand your frustration so many of us have had a dreadful time.

[Prestart55]

Hi this happened to me same scenario also with non obstruction. On montelukast.seretide, and salbutamol. The consultant said put down to one puff. I did. It didn’t work. The gp said why did they say that when been on 2 puffs 2 a day. Can’t manage just doing one as was taking blue a lot more and thought not supposed to do that so went back up to two and still need double puffs if unwell. Sometimes it’s better to go with gp who yours seems to know you best.