Uncontrolled Asthma and Medics

Hiya everyone,

I am feeling a little confused and overwhelmed at the moment, which is becoming more pronounced with the medical people around me. Don't get me wrong, in the acute situations they are amazing, its more the GP and asthma nurse etc at my surgery!

I am a brittle asthmatic, only diagnosed with this though about 6 months ago after a bad period of control, being on step 5 of treatment and still having quite frequent bad attacks which required me to get some sort of help. Since then, I have had multiple hospital admissions with asthma and am usually treated with IV stuff. I now leave getting help until I am unable to talk and really ill otherwise I may as well live in hospital.

The reason for this post is that I have always felt that I have had a pretty good relationship with the people at my GP practice, and there is one nurse that after an admission I will go to see for a bit of a debrief. This time this happened though I left really upset and confused. I went as I felt pretty overwhelmed by the severity of the last attack and the fact that after initial treatment, I had a really bad rebound attack and for the first time ever needed to be given aminophylline, which I had always thought would never happen to me! During this admission the respiratory registrar was very concerned with how ill I was and made contact with the anaesthetists and was very blunt about where things were heading if I didn't stabilise. I also had to have a lot of ABGs done to see what was happening and whether I was stabilising. A VERY overwhelming experience.

The nurse at my practice though seemed confused about the results of my ABGs, as my 4th one showed that I had a normal pO2 and a slightly low pCO2 and said about how I was clearly hyperventilating. This was what the registrar had wanted my ABGs to do as he said that he was now much less worried than before the aminophylline started when I had a normal pO2 (on 4L - was put onto 15L for a while) and a high pCO2. This was the pattern he would expect it to take.

I might be worried about nothing, but it feels to me that my GP practice is telling me that I am overreacting and becoming anxious about it. Far from it, I wait until I really have no choice but to get help with it and I am always ""told off"" for leaving it far too late.

The nurse at my practice said the other day that we need to get to the bottom of what is going off, which I agree with, something needs doing. BUT she said to me that she doesn't think that it is asthma as she has never known any asthmatic not wheeze. The thing is I DO wheeze, but when I get help, my lungs are always moving nothing and silent, so I don't have a wheeze. I wheeze a lot on a daily basis, but only when I am too well to do anything about it! I know a lot of people on the forum rarely wheeze so this confuses me!

Another thing is, I know that my GP practice has spoken to my consultant (I have an appointment in a couple of weeks) and it worries me that my consultant is going to grip onto the anxiety stuff and tell me that all my tests have come back fine and that it isn't asthma. I would rather that it wasn't asthma and that they could give me a tablet or something for a week and then everything go back to normal and not need to treat it anymore, but for some reason I don't think that this is going to happen! If it wasn't asthma, how come I respond so well to asthma treatment? Not only in the acute settings, but in the normal day to day stuff?

I am finding the whole thing really tough at the min, so sorry if you're finding my rantings frustrating/annoying!!

Has anyone else been in this situation? How did you get through it/cope with it?

Laura x

12 Replies

  • Laura, you completely have my sympathy, it is so frustrating isnt it? I have a wonderful GP who has given up with my asthma in that she tries to persuade me to go to hospital but also prescribes what I need to manage at home short term, but never makes any changes to my standard treatment - she is not a resp consultant and doesnt 'meddle' in what she cannot fully understand.

    Not being able to breathe is frightening, some degree of panic isnt suprising and any good dr or nurse whould know that. Its normal.

  • As you know Im 10days into an admission. Its hard work and frustrating as Im no better than when I came in, but its worth it as its helping the drs understand my (very unusual) asthma. Im hoping and praying that in another 10days or so there will be a plan for longterm treatment which will allow me to have more control over my life than I have had the past 10mths.

    I think you should ask your cons for a similar admission. Yes you will hate it, but a few weeks in could help you stay out in the longer term.

  • Hi Laurs I'm sorry your having such a rubbish time atm,

    I can completely sympathise,I too am on step 5 and I am waiting to start my second trial of Xolair ( I've been waiting 9 months, I'm supposed to get it on Monday although given the state of my lungs today I doubt they will give it to me ) I have been unstable in varying degrees for years and my latest bout has gradually gotten wore over the past 6 months or so as I land in hospital every 2 weeks or so and the attacks are getting worse. Like you I tend to wait till I'm really struggling before I get help because if not I would never leave the place and I always need IVs to get me out of attack. My last admission nearly saw me ventilated and I have to say it really shook me up. I ended up having Aminophylline IV for 5days.

    I totally get your frustration, I went to my gp after my last attack and literally got ""what do want me to do, I don't think you even have asthma as I've never heard you wheeze,"" despite being diagnosed by 3 separate cons over my life and the fact that my best FEV1 is only 53%

    I have/had depression due to my asthma and I have always been very upfront about its effects on my asthma control, my cons totally respects that I know my body and takes direction from me but my gp is adamant that I'm some kind of anxious hypochondriac that panics because my ABG is better than he would expect (not sure what he wants to see but it showed that my PCO2 was high and I was acidotic hence nearly being vented) it's so incredibly frustrating!

    I am finding things really quite difficult to deal with at the moment as I have tried every other treatment readily available and now feel that I have no where to go with it, I am on a maintenance dose of pred 40mg and still multidosing with ventolin to get through a ""good day"". I am quite nervous about the lack of action plan for trying to keep me well over the winter as I would like to get through it with as few hospital admissions as possible and I would also like to make an appearance at work. That would be amazing!

    When I see my cons on Monday I am going o ask her to be referred to the Brompton, she offered this to me before but i wasn't as uncontrolled as I am now and right I just desperately want some sort of control.

    Well this has just turned into a right rant.....oops :P

    I'm sorry that can't be of much practical help but I hope that at least you feel a little less alone in your situation

    Sending big hugs

    Becca xx

  • Hey.

    I completely understand and know where you're coming from and I'm sure many 'difficult' asthmatics have had these thoughts and feelings at some point.

    I'm lucky in a way that the majority of gps at my practice overreact with me rather than under react. But I still see one gp preferentially as he's the most sensible and gets me!

    I have however had a few registrars or drs when visiting other hospitals who have said similar things re no wheeze etc (as like you if I wheeze I'm pretty well for me!). and I had a wobble at my last cons appointment where I was told off for coming in too late (and ending up in ITU) but I said I felt that I was waiting people's time if I came in earlier etc (which I got told off for also) ... Luckily my cons is lovely!

    And yes you are correct ... The reg would be much happier with a gas with low/low normal co2 as it means you were able to breathe out rather than high co2! And the fact you needed aminophylline to get you there showed how severe an attack it was!

    I wouldn't worry about your gp talking to your cons ... He will have your full hospital notes (which your gp won't) and he's also seen you good and bad! Asthma is so variable and very few people with difficult asthma fit the boxes so you won't be your cons only awkward patient ;-)

    Sorry if this doesn't really help, just thought I'd say your definitely not alone! And you know you and your asthma best!!

    Hope you feel better soon

    B x

  • Well, they say 'if you can't convince them confuse them' lol. Seems a good motto for many of us on here...

    It is frustrating and confusing though when they get onto the anxiety bandwagon. I would suspect it's partly because they have NO idea what is going on with you and want an answer which makes sense, even if it's not the right one (is that too cynical? I got told some really odd stuff in A&E the other week which genuinely made no sense to me and when I pushed for an explanation they couldn't really give me one which kind of made me think it was a case of 'hmm we really don't know'. Apologies if I'm generalising or don't get the medical thought process but if I'm given a diagnosis I kind of expect them to be able to explain, in brief at least as I get they are busy, how it fits my symptoms and they didn't seem able to/changed the subject when I asked!)

    My admittedly non-medical understanding of ABGs (I had a look online when I was sent my results to pass onto cons) is also that looking like you are hyperventilating is a) same as mild asthma b) much preferable to normal or high CO2 with asthma.

    Re cons: as others have said he has seen you bad and he also may have different views from the others. My GP did not buy the 'anxiety' diagnosis from a previous cons and he was very suspicious about the breathing pattern disorder thing - wrongly as it turned out, but it was quite funny watching him say 'but you're a singer, why are they saying you have a breathing pattern problem?' I know they do sometimes tend to fall in with what others have said but there are some who prefer to think for themselves!! Also did you not say that he is asthmatic himself? In which case he might get more that it's not automatically anxiety. I think I've said this elsewhere but I wonder if even really good drs who have never experienced breathing issues themselves project how they would feel onto us (""I would be anxious if I couldn't breathe') forgetting we may be more used to dealing with it and might not automatically panic.

  • Hiya, thank you SO much for your replies, it makes me feel so much better knowing that I am not the only one going through this! Though I wish others weren't, its nice to know I am not alone!

    Sparkly - thanks for your sympathies!! My GP doesn't understand either my level of asthma control (or lack of!) or my non stereotypical asthma. So it seems as though everyone at my practice is now saying ""anxiety"" but the only thing that makes me anxious is being told I am anxious. Is that really silly?! I am really thinking that asking my cons to either arrange a long admission OR refer me on. It just worries me that they would find nothing/come up with nothing conclusive and make me feel like a fraud. What if I spent the whole time in hospital being ""well controlled"" as I am always fine at cons apts! Deffo hoping you get some answers though!!

    Becca91 - thank you so much!! I really hope that you can start Xolair, and that this time it turns out to be your magic drug!! You're a nurse aren't you, if I remember rightly? I am averaging at about 5 days at home at the min between admissions, though this time I managed 2 weeks :-) was much worse than normal this time, and I rebounded too, to the point that as well as being given magnesium and aminophylline, I was also being given 6 hourly hydrocortisone too. This time I had a pO2 of 6.2 and a pCO2 of 4.7, was also becoming acidotic. After Magnesium, things resolved for a while and then went downhill again to an ""ok"" pO2 (12 on 4L though) but high pCO2 (over 5) and then my pCO2 reduced to 4.1 and pO2 of 14 on 15L (once aminophylline had begun and even more nebs!). Was my pCO2 which scared the respiratory registrar, as he said I was becoming tired resp wise and with a resp rate of 46 I should have a really low pCO2! Don't worry about ranting hun, its good to know that I am not the only one in this boat and others understand! Even on a ""good"" day I also multidose a lot, but try not to use nebs until absolutely necessary.

    B - thank you :-) !! What frustrates me with my GP practice, is that it seems that because I am not ""text book"" its anxiety instead! Like you I am always told off for getting help too late, and I am WAY beyond wheezing if I do get help. Sometimes they just don't seem to get this. Fortunately for me, my ABGs usually make A&E sit up and realise that though I am not wheezy, I am really bad! As I said above, surely a ""normal"" pCO2 with a resp rate of 46 is bad? And that this is why the anaesthetist became involved? Rather than me being anxious!?

    Philomela - thank you!! From what the respirator registrar said the other day (anyone feel free to correct me if I am wrong!) there are 4 stages of an asthma attack (in terms of ABGs). 1. High pO2 and low pCO2. 2. Low pO2 and low pCO2. 3. Low pO2 and normal pCO2. 4. Low pO2 and high pCO2. I was initially at number 3, then getting towards 4 (normal pO2 as was on oxygen at the time - according to reg!) which is when they got the anaesthetist to talk to me about where things were heading and I was given aminophylline! Hoping my cons is understanding, as getting really nervous and anxious as they keep saying I am anxious!!

    Thanks everyone!

    Laura xe

  • Laurs - first just (((hugs))). And well, again (((hugs))).

    When I was in hospital last May, several doctors tried to pull the anxiety card presumably because of blood gases. No one apparently thought to consider that I might be having a bad reaction to infection + asthma + sudden onset anemia. My blood tests showed very high white blood cell counts and between the first two blood tests they did - one in the evening and one the next morning I lost 10% of my hemoglobin - all in less than 12 hours.

    Nor did anyone know at the time that I was horribly allergic to olive trees. The week I ended up in hospital I was off antihistamines to do prick testing at exactly the same time as the olive trees went into full bloom. Just because we can't see the cause, doesn't mean it is psychogenic. It simply means we don't know.

    I did, like you, appear to have normal/high O2 and low PaCO2 on my blood gases. However, had they taken my hemoglobin level into account, and considered my actual blood oxygen content rather than just SvO2 (saturation) and PvO2 (partial pressure of O2) - the v is for venous - here they like to do VBGs, they would have seen that on 2 of my tests, my blood oxygen was actually below the lower limit of normal. They very nearly discharged me from A&E with a venous blood oxygen content of 9.4 ml/dl when the lower limit of normal is 12. Even accounting for the anemia it should have been more like 11, not 9.

    Even the two that had ""normal"" O2 and low PCO2 weren't all they appeared. In one case, my base excess was below the lower limit of normal and my PCO2 wasn't nearly low enough given the drop in HCO3. From what I understand this means that I had possibly two things going on at once, a.k.a. mixed acid base disorder. If I were to make my best guess, I'd say infection was causing a respiratory alkalosis (high pH, low paCO2) and asthma was causing me to retain some of the CO2 my body was trying to expire as compensation for how the infection was affecting my blood pH. The other normal blood gas was done several hours after my last severe flare, before the next one and whilst on O2. (PF was 75% of PB).

    I don't know if I'm right about what was going on - its my best guess based on what I've managed to learn so far. However, it doesn't really matter. The point I'm making is that it isn't just enough to consider O2 and PCO2 when looking at blood gases. There can be many different reasons for a normal paO2 and low PCO2. To know what they are, one needs consider a lot more than just O2 and CO2. For example, in addition to low blood oxygen content and infection, low potassium can cause normal O2, low PaCO2. What can cause low potassium? Using loads of ventolin is one possible reason for low potassium. Steroids can also cause it. For a much longer list of potential causes: emedicine.medscape.com/arti... .

    Some other thoughts

    a) the up-coming DSM-V is quite explicit that it is inappropriate to diagnosis mental health issues purely on the basis of unexplained medical conditions. Psychological matters require psychological signs and symptoms...without them there is no basis for treatment or diagnosis.

    ""DSM-5 narrative text description that accompanies the criteria for SSD cautions that it is not appropriate to diagnose individuals with a mental disorder solely because a medical cause cannot

    be demonstrated. Furthermore, whether or not the somatic symptoms are medically explained, the individual would still have to meet the rest of the criteria in order to receive a diagnosis of SSD."" (source: dsm5.org/Documents/Somatic%... ).

    It is, of course, important that you be honest with yourself about your feelings and physical ways of expressing anxiety, depression, frustration, and inner conflicts. On the other hand, if you are feeling you are being honest, I don't think it is psychologically healthy or wise to doubt your own self-perceptions and intuitions. Most psychologists spend an inordinate amount of time getting people to face and trust their feelings and intuitions. Expecting you to deny your self-awareness so that you can be the good and agreeable patient is hardly constructive.

    b) you can have a very real and even dangerous asthma attack with anxiety as an overlay: neither cancels or invalidates the other. It never hurts to develop a repertoire of relaxation, self-calming and self-soothing techniques to help you when or if anxiety and stress become a complicating factor either as a source or as a reaction to breathing difficulties, or for that matter any other stressor in life. The benefit is that when and if anxiety arises you can use them to calm yourself and focus better on breathing as well as your body will allow you to.

    c) I don't know how one tactfully tells a doctor ""please look at the big picture (hemoglobin, mixed acid-base disorders, presence of infection, bad reactions to drugs, etc)"" , but I think all of us who have severe/refractory asthma need to figure out how to do it. Your teaching skills might come in handy: not of course by your taking on the role of the teacher but because part of the art of teaching is figuring out how to prompt someone into thinking more deeply about things without giving the answer. The difficulty and irony is this: for me, I am only able to do this kind of prompting well when I really understand something well and also have a good feel for what parts of something are hard to understand. So here am I, the patient expecting the doctor to explain things to me, and instead I have to learn about things in so much depth so that I can pretend to be dumb and manage to explain something to the doctor without appearing to.

    d) Asthma has a long history of being blamed on psychosomatic causes. For those who are responsive to treatment this is a thing of the past, but I think for those who are less responsive than doctors want to see, that long unfortunate history becomes our biggest bug-a-bear. Sadly, I think we just need to develop a certain amount of thick skin about it. Saying we need to, sadly doesn't give us a thicker skin, but somehow we need to find a way. Or maybe our thick skin isn't really our own thick skin but rather the protective effect of having sympathetic and supportive friends to vent to when we get told things that just don't make sense and insult our sense of self-awareness to boot.

  • Hiya everyone,

    I am feeling a little confused and overwhelmed at the moment, which is becoming more pronounced with the medical people around me. Don't get me wrong, in the acute situations they are amazing, its more the GP and asthma nurse etc at my surgery!

    Another thing is, I know that my GP practice has spoken to my consultant (I have an appointment in a couple of weeks) and it worries me that my consultant is going to grip onto the anxiety stuff and tell me that all my tests have come back fine and that it isn't asthma. I would rather that it wasn't asthma and that they could give me a tablet or something for a week and then everything go back to normal and not need to treat it anymore, but for some reason I don't think that this is going to happen! If it wasn't asthma, how come I respond so well to asthma treatment? Not only in the acute settings, but in the normal day to day stuff?

    I am finding the whole thing really tough at the min, so sorry if you're finding my rantings frustrating/annoying!!

    Has anyone else been in this situation? How did you get through it/cope with it?

    Laura x

    I think that all of the things that you're saying is pointing towards your GPs and nurses at your local practice not being able to understand your very severe asthma. You're on a very high level of drugs and steroids too which when they see other patients at their practice take they get better, so as you're still having severe attacks and frequent admissions they must be wondering how it can be asthma with so many asthma drugs already being taken. (I take a reasonable amount of drugs which should be preventing asthma symptoms so I sometimes find it hard to believe/get my head around that I still would be having symptoms, except for the fact that I am experiencing them so I know that it's asthma. It still confuses some of my GPs though and they suggest other things/diagnosis at times. A bit annoying, but I think we have to brush it off as a lack of understanding of difficult asthma on their part. After all, they can't be experts in every field, they have a general knowledge of everything health wise which I find very impressive).

    The fact that you get good emergency care for your asthma tells me that those in the acute care setting, including your cons, believe that is what it is. I'm sure they'd consider other options or influencing factors, but they are treating you for asthma and I'm sure that even though your GP surgery has talked to your cons then he will still see the bigger picture. He's seen you acutely unwell and so has a better picture than your GPs of what your asthma's like and he has also probably seen others suffer like you too, whereas your local practice may not have.

    You've not been brittle for a long time so I guess you and your team have not had a lot of opportunity to play around with meds to see what combinations work. This is where I think Sparkly's suggestion of a stabilising stay would be something you and your cons should be in favour of. Or if this isn't something your cons wants to do then I think you'd be perfectly positioned to ask for referral to a tertiary care centre.

    Big squishy virtual hugs.

  • I so wish I could go back to the days when the details on this thread would sound like Double Dutch, when I had no reason at all to know the pattern for ABGs in an asthma attack and I didnr know the asthma protocol by heart. I wish I didnt know what % of best my PF is without working it out and I wish I didnt know which drugs I need at which stage. Laura, hang in there, its horrible but we are not alone - sadly it seems too many of us are in the same boat just now.

  • Thank you everyone for all the support!! I have after a huge cry with my mum about the impact the asthma is having on life at the moment without being told that in someway I am psychologically influencing what is going off, I have changed GP practice.

    I did have some reservations about this: what if they were in the same mould? what if they were equally as frustrated? What if changing GP made it look even more like it was due to psychological reasons? It seems however that thus far these reservations were unfounded, as the GP that I saw yesterday said that GPs find brittle asthma very frustrating: 1) because it is as the term suggests ""brittle"" so difficult to control, 2) high levels and normal medication doesn't prevent severe flare ups and 3) lack of understanding. This therefore leads to the suggestion that it is somehow psychological as this is an ""easier fix"" than the actual asthma and leads them to look for alternatives. It seems to be a vicious cycle, but I do feel more reassured now. I just need my consultant to hopefully wave a magic wand and give something which will make it more manageable.

    I will respond more (and individually) at a later date as not well tonight. I have a chest infection (back on amoxicillin) and not allowed below 40mg pred before my cons apt due to my lungs acting up. In that annoying limbo phase as there isn't much more I can do at home, but then start a new job tomorrow, so do in fact need to be ok and not in hospital to turn upto work!! Very frustrating!

    Thanks again every one!


  • I had the same reservations as you about switching practices when I decided to stop seeing the GP who I'd had for nearly seven years. So far it has turned out to be a really good decision and also eye-opening about how different cultures and attitudes that can be between two practices.

  • Hi, I Have an 8 yr old child who doesn't wheeze either. he has severe brittle asthma and sufferes from silent chest so you are not alone on this.

    he has a lot of meds to take each day, however our consultant who is fabulous, doesn't agree with parents having nebulisers at home. has anyone else come across this problem. im worried that as he shuts down rapidly during an attack that I wont be able to get enough ventolin into him before the ambulance gets here. the reasoning behind no home nebs is that a child can give a false readuing of being ok after a neb when actually they aren't. on his last major attack he had 12 back to back nebs and they started to prepare us in case he needed to go to ICU.

    he has had chest infection where he doent have any temp etc but xrays show he has an infection. last time the dr couldn't hear any infection in his chest but when she did an xray she rang me up at home to say he had another chest infection. I suppose that the lungs get damaged and it makes it harder for dr's to hear whats going on in them.

    for any adults or teenagers on this forum who have brittle asthma and silent chest can you please explain what it feels like when you are starting to have an attack. he only see the frightening bit when he has an attack and he doesn't show us any warning that its coming. I would like to know if you get a feeling or sensation that your about to have an attack and if you have silent chest are you able to breath in at all as we struggle to get him to breath in with the inhaler.

    I hope that I can understand whats happening to him sooner like I could when he was much younger, now he is 8 he doesn't show symptoms until he is in an attack.

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