Time to find a new pulmonologist?

Every quarter in Israel I can change doctors and the end of a quarter is coming up (end September). I'm increasingly frustrated with my current pulmonologist, but I'm worried that I won't do much better with a new pulmonologist. All the pulmonologists in town work that are part of my health plan work at the same hospital so I fear that their attitudes, methods, and biases about asthma will be shared. On the other hand, switching GP and practices has been a very positive move for me.

The reasons I'm frustrated are described below. I suspect some of them might reflect organizational biases, but I wonder if some of them are more about his personality. If its organizational biases, then switching won't help. If it is personality, then a new doctor might help if he or she is more comfortable answering my questions. Your thoughts would be much appreciated. I don't want to look like I'm doctor shopping, but I'm not very happy with some of the things I see in my current doctor.

a) I'm having a lot of difficulty seeing how his definition of asthma and proof of asthma fits anything I find in the standards documents or the research that supports them. If you use the Global Initiative on Asthma (GINA) standards to evaluate my symptoms, family history, peak flow journal, PFT result, my response to treatment and the work done on differential diagnosis, I would be classed as having severe asthma with two different kinds of supporting objective evidence (positive bronchodialator response and high intra-day PF variation).

My pulmonologist on the other hand believes he has no proof that I have asthma, thinks that if I do have asthma it is mild, that my on-going symptoms are either the result of steroid withdrawal or my ""overreacting"". That's a huge difference, and every time I try to ask him questions about why his conclusions seem so different, we either run out of time or he gives an answer that makes no sense to me given the studies and research reports I've read.

He's never given evidence of any alternative diagnosis including the claim that I'm ""overreacting"". I don't understand how one would have respiratory symptoms in response to steroid withdrawal unless there is an underlying respiratory problem that steroid withdrawal reactivates. He seems to have a different definition of asthma severity than GINA, BTS, and many other organizations. He seems to have different standards of proof - so much so that I wonder whether he and GINA even define asthma the same way.

b) Part of the reason we run out of time is that he starts challenging my right to ask questions even before I can ask them. During my most recent appointment he told me I shouldn't read pulmonology research and standards because I didn't have the clinical experience he did.

And this isn't the first time. When we went over my PFT results earlier this spring he first cut me off saying that ""He's interpreted thousands of PFTs so there was nothing to question"". Then he told me PFTs were too complicated. Then he asked me if I was a physiologist, in a tone that sounded like ""how can you ask (have the right to ask?) these questions if you aren't one?"".

c) He also doesn't seem to know the facts of my case and that makes it hard for me to trust his conclusions. I can live with ""I don't remember - I'll need to look it up"" --- he has lots of patients and I can't imagine he memorizes all of their cases top to bottom. But making assertions contrary to fact is another matter: if you already believe you know something you'll never double check it and you'll never know you are wrong.

He was so convinced he had no proof of asthma he claimed I never had a positive bronchodialator test. Positive according to his definition is 15% and 200ml improvement. I did in fact have a positive test (15.7% and 420ml) by his standards. But his standards don't match cut offs in current major standards documents which are (12% and 200ml) for GINA, ATS, ERS, NHLBI (USA) and nearly everyone except the BTS which prefers 400ml - but I'm positive both by 12%/200 and by 400ml as well.

d) I really don't know how to deal with situations where he cites reasons for his positions that are contrary to the research studies I've read. He's the pulmonologist and I'm just a lay person who has read a lot. I'm not an expert. There is always the possibility that I've misread something. I don't want to offend him or make him defensive by directly contradicting him. He barely seems to be able to tolerate my asking technical questions. However, soph's and other's technique of asking questions with an answer that is already known doesn't really work when the doctor disagrees with the ""known"" answer.

On the other hand to accept his opinion without a cogent explanation for his opinions feels like putting my brain in a meat grinder. I really don't think being a patient should require me to act brain dead. I do think I'm smart enough to understand an explanation of why I'm wrong.

For example, several professional and standards setting respiratory organizations consider high intra-day variation in peak flow as diagnostic of asthma, unless the variation can be proven to be the result of some other disorder (usually in the upper respiratory tract, e.g. VCD or trachomalacia). My peak flow can vary a great deal throughout the day (average for the last 4 months is 40% a day) but he absolutely refuses to consider that evidence of anything - not asthma, not lack of asthma control, not even something worth investigating to see if there is a non-asthma reason for it.

Rather he views this variation as affirmation of his belief that PF is unreliable. He thinks PF is unreliable because it is low tech. Indeed, research does show it is very hard to predict an individual's peak flow from just age and height. Different meters can give different results for the same person. If one wants to compare a specific value of PF to some population norm, PF is not reliable. However, the range of normal intra-day variation in peak flow using the same meter everyday is much more predictable. This has been confirmed by multiple studies. These studies do not in any way rely on speculation about the high tech quality of a peak flow meter. Rather they assess predictability based on statistical methods. Low tech or not, normal lungs do not produce widely varying peak flows - in people without a history of asthma or other lung disease, intraday variation averages about 8% a day and 20% is the outer limit of normal.

e) He doesn't seem especially interested in digging deeper when symptoms don't seem to match the numbers. That frustrates me because it makes it very easy for him and other doctors that rely on his opinions about me to think that my symptoms are coming out of thin air and have nothing to justify them.

If I hadn't challenged him to look down the page on my pulmonary function test results he would have never noticed that I had lung volumes way above what they should be and resistance above the upper limit of normal. He would have stopped at the predicted FEV1, seen it was normal pre-bronchodialator and never looked further.

I don't think he ever noticed that 25% (1.4L) of my lung isn't even reachable when I inhale (lung capacity measured by gas diffusion is 75% of lung capacity measured by body plesthymography). All the sources I've read think that a difference in measurement that large reflects either operator error or evidence of obstruction, but pulmonologist either never noticed it or doesn't think it is proof of a problem or thinks it is an error. I'm not sure which because I never get to ask that sort of question.

He also never checked my flow rates against absolute volume (total lung capacity - expelled air). I had to do a ton of reading on my own to figure out that it probably should have been done. Did he choose not to do it because he doesn't agree with the science behind it? If so, why? Did I misunderstand the science? Or because he just didn't dig deep? I don't know, but given the way my questions get cut short, I'll probably never get to know.

The flow volume curve printed out on most spirometry results maps flow rates to expelled air, not absolute volume. However, the theoretical model of lung mechnics predicts flow rates based on the current absolute volume of air in the lungs. To know the current absolute volume one needs to know both the actual starting volume when the lung is fully inflated or total lung capacity (TLC) and not only the amount of air that has been expelled so far. Expelled air is used as a proxy for absolute volume because in office spirometry can't measure TLC. You need special equipment for that.

In most people using expelled air as a proxy isn't a problem because most people, even asthmatics, have normal or nearly normal sized lungs. But some of us have really oddball lungs. My TLC is 125% of normal (99%+ percentile) and when TLC is that big it can make using expelled air as a proxy for absolute lung volume very misleading.

My flow-volume curve looks great if you compare my flow rates to predicted values using expelled volume because my starting flow rates reflect my higher starting lung volume and appear to be higher than predicted. I have a lot of resistance in my lungs but not enough to completely cancel out the higher flow rates associated with higher lung volumes.

I look a lot worse if you compare absolute volumes. At a lung volume of 4.5L my flow rate is 50% of normal. At 3L my flow rate is 10% of normal. At 2.5L, my flow rate is zero and a normal lung for someone my height (1.63m) is still able to push out air. Even a person tall enough (1.8m) to have a normal TLC as big as mine can still push out air. I cannot. As a result, I end up with a lot more air than usual stuck in my lungs (RV/TLC = 45%).

The same now-she-looks-good-now-she-doesn't happens with FEV1. In prediction equations height is a proxy for TLC. If you look at my FEV1 for someone with my age and height I'm above normal. If you look at the same value for someone my age with my TLC, my FEV1 is 81% of predicted.

6 Replies

  • Hi Beth, I can't comment on all the technical stuff, I dont have the depth of medical knowledge or experience - but it seems to me you are clearly deeply unhappy with your current treatment, thus changing consultant could be a positive move. Going on how you feel it seems you could only gain, rather than lose...

  • Thank-you everyone so much for your responses: each of you has said something different that I really needed to hear.

    Lynda (NurseFurby) - you were spot on zooming in on the feeling side - thanks for underscoring it for me and helping me to give it more weight.

    Curiouser - if you didn't take the technical bait and also focused on the feelings - that says a lot. I *really* need to give them weight and I almost wasn't. I think you also zoomed in on another important point - feeling like my pulmonologist is working with me rather than speaking at me.

    I tend to minimize as it is. If my pulmonologist then minimizes my minimizations, this really is not going to work. I looked over the summary of our meeting that he gave me. I told him in the last appointment that I was doing ""relatively well"". He wrote down that I hadn't had any meaningful flares. If he had pushed deeper to find out what I meant by ""relatively well"", he would hae found out that as far as control is concerned, I was failing on all categories. In my mind though I was relatively well because all the flares were something I could handle at home. But even that is a bit of an understatement because there was at least one that my current GP wanted me to go up on pred for and then gave me a pass when he saw how much I wanted to continue the taper.

    Soph - thank you so much for sharing your mother's experiences and your own experiences about presence/absence of differences between consultants. The pulmonologist who keeps being recommended to me is the head of the pulmonology department of the hospital. it is hard to know whether the others reflect his views or simply have their own way of seeing things. Still, I won't know if I don't try.

    Philomena - thank-you for sharing your thoughts about ""doctor-hopping"" and for your reassurance that sometimes there are genuine and legitimate reasons no matter what it may look like to others.

    Laurs - I think you are right that at this point, I really have nothing to lose. And I may be pleasantly surprised. In any case, I'm not even sure how my current pulmonologist can really diagnose me. I think having a doctor that trusts me is really important. With all the PF variability and the night symptoms, I just don't see how anyone can treat me unless they trust me and my efforts to document what is happening between doctor's visits.

    My husband is also with you all, as well as three friends I talked to in the last few days and they also were in favor of a switch. One friend affirmed the importance of communication and that poor communication alone was reason to switch. Another friend who is both a nurse and a respiratory patient stressed my right to try to be as well as I can and not be fobbed off. Both she and another nurse friend were surprised at some of the pulmonary function test results that seem to be ignored.

    So it really seems like the consensus is to try another pulmonologist.

  • +1 for what Lynda said - the details are less important, the fact that he's not collaborating with you in your care is enough, alone, to warrant changing.

  • Its very very tricky, I agree than in specifics hospitals there does tend to be some similarities in care, although I have never changed 'regular' consultants, only seen different ones in an acute setting (and i do notice some differences). Both my mum and my sister who are different types of people in health care describe appts with high-ups as 'playing a game' which i think is a depressing reality and, for the patient at least, means that less can be understood in the appt. It DOES vary, i have seen cons in the past who are over the moon at my curiousity in 'how things work' and my desire to have as full an understanding of my condition as possible, sadly, the vast majority of cons do not feel this way, they consider that i will never even get close to an understanding of asthma and therefore shouldn't even bother worrying my pretty little head about it. more concerning is some cons tendancy tro assume that interest=obsession or anxiety about the situation (you'd hope that as people who arepresumably interested in medicine as a science they could FULLY understand why someone could be interested in it, but thats not how it works at all!). This means that I play dumb in appts, which does feel wrong, but is the only way I can get their medical opinion without them spending a lot of time either lectuing or telling me i'm wrong. I also get my poor old GP to write a lt of letters for me before cons appts so that any technical questions I need to get through can be asked byut without me having to ask them (GPs I find tend to accept my level of knowledge and it is mutually beneficial as I can point them towards ideas or places to look, and they can clarify things i have misunderstod which allows me to better care for myself through a more full understanding of my condition) which is incredibly frustrating. I often use the phrase ""i just wish i could stretch my brain around these people"" but I understand that I cant, one of the few benefits of my cons at uni is that he used the term 'educated patient' and meant it, he would test his students on me, and then test me by asking if i thought they were correct. My understanding of what most doctors describe as an educated patient is one who knows that they have to take Meds and PF measurements as told otherwise things might go wrong, and nothing further. I do believe that an understanding of WHY you are on certain medication is a vital part of asthma care as it allows you (the patient) to identify short-comings in effectiveness and also about the mechanisms of medication (i didnt realise that i COULD be having allergic symtpoms after my anti-histamine, but after a discussion with a pharmacist who let me stretch out my brain for a bit with them i discovered that actually the only reason my anti-histamine is described as once a day is in order to let it be described as 'non-drowsy' and that my description of it wearing off after 10hrs was because it actually had worn off!). Anyway. back to your initial problem and enough of my rant about the issues in medical care hehehe! Unless you can move to the UK and see a cons i once saw who was utterly amazing at patient education - he couldnt tell me enough and was excited by my interest, then i'd reccomend switching for two reasons, one, another set of eyes and ears when clearly your current cons is only seeing one set of things and that will be affecting his care of you, you are clearly open to explore other options but he seems unwilling to explore any options despite evidence of asthma. but I also think a fresh start may be beneficial in terms of how much you stretch your brain around them. if it feels too depressing to feel like you are 'playing a game' as my family describe it, then you dont have to, but you may find they are more willing to guide your care if they are left to feel in more control. Consultants are human too (which sometimes makes it much harder for both sides of the table) and they are probably up against a lot of idiots for whom knowlegde is a cause of problems, i bet they get people googling things all the time and then deciding to change their own treatments etc. and it is also probably embarrasing for them to be wrong. i think a fresh start might be a good idea, and its not as though you seem to really have anything to lose. With clear evidence of asthma, and a cons who is unwilling to look into asthma, or really anything else, its not as though you can take a step backwards!! HTH!!

  • I am with everyone else on this. I don't think you're going to get anywhere with your current one and it seems as though you have nothing to lose.

    As you know, I have ended up seeing more than the ideal number of specialists. I'm sure I look like a doctor-hopper which is unfortunate. However, a lot of it has been down to being discharged then re-referred, and me deciding that if I do in fact have a choice I want someone who will look into things properly and not dismiss anything I say as being down to anxiety (and that was a referral after I'd moved so it wasn't because she thought I was doctor-hopping afaik). I was also asked, reasonably enough, to choose between 2 consultants/hospitals that I'd somehow ended up seeing simultaneously and made the wrong choice, which I later decided to fix.

    In general, while I don't like swapping (I would rather have someone I get on with and who helps first time!), I feel that everyone's time is better served if I have a good relationship with my consultant and they are able and willing to help me in return for me trusting what they say (which I won't if I can tell they are not listening and have little interest but are just going through the motions - yes, I know I'm not their only patient but I still think I deserve better than a half-assed attempt and if they can't be bothered I may as well not take up any of their time). I have only once actively decided to switch - that 'choice correction' mentioned above. In that case I was beginning to realise that they hadn't really changed or done much over my appts - it was the same every time (the physio really helped, but the appts never seemed to move things on). I also realised that the consultant had very firm ideas, which by that point included blaming me for lack of progress and implying that I was lying about it when I said I had done everything I was asked to by the physio. In my book, if they can't trust me and are going to pass the blame or insinuate I am lying with no evidence, that is a relationship that isn't going to work. I understand I am frustrating to have as a patient, but I always try to be polite and to listen and take their ideas on board even where I don't necessarily agree, so I can at least try them. However, if it's been the third time something's been suggested that I know doesn't work because I've already tried it, I want them to acknowledge that maybe, it's not the right approach. I would like them to think it's my lungs/condition which are frustrating, not me - since I am pretty frustrated by it all too!

    I hate the fact I've seen so many. I wish I hadn't had to. I wish I didn't have to see any specialists at all, but since I do, and since like you I am not typical, I think it's important to have a good relationship with who you see. I don't see eye to eye with my current consultant on a couple of things, but at least he seems willing to listen and to have me challenge what he says; he actually does acknowledge that I am not stupid and I can understand why he wants me to do something - which I appreciate even if I don't always agree. I'm determined to make this one work!

    This is a bit longer than I meant to say, but thought I'd chip in as I've had an unfortunate amount of experience with all this. I'd say it's rare to have a perfect relationship, but you can probably do a lot better so if you have the chance to switch, I'd go for it.

  • Wow Beth, you certainly know your stuff!! I wish I could be bothered with it all enough to do the same thing. Also feeling frustrated with my asthma (as a lot of us are!), but really struggle to switch off from it at the min!!

    I have changed consultants for a number of reasons. 1. in my 3rd appointment with him, I left feeling upset and frustrated after having a few pieces of wrong info given to me (I.e. low IgE so clearly not allergic despite being on montelukast and 35mg pred). 2. the A&E I go to when acutely unwell is different so see different consultants and they don't get all my notes. 3. my new cons has seen me both acutely unwell in HDU and on the back end of an attack. 4. he seems more empathetic about the impact of symptoms on a daily basis and is more trusting in terms of treatment, i.e. home nebs!

    I'd say that from how you are clearly feeling at the moment, you cant lose anything in changing cons! Its their job to listen and explain. I think most medics would be happy to encounter patients who want a clear understanding and picture of their condition. I feel that there may be a certain degree of similarity within practices, but I have found whilst an inpatient that actually opinions etc between consultants vary a lot.

    if it comes to the worse and you don't like your new cons, I guess there is always the option to go back to your old one? I am sure you don't look like you're ""cons hopping"" more that you want the right treatment for your condition. And as a clearly intelligent and educated individual, you deserve to be understood and not fobbed off!!

    Hugs, hope things improve!!

    Laura x

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