No diagnosis: Any information/advise greatly appreciated!

I am 28 years old. I have been having breathing difficulties since Aug of last year, by this I mean feeling as though I am not getting a satisfied breathe, some chest discomfort and tightness. I have seen several G.P's and an Asthma Nurse and have been on oral steroid treatments, anti-biotics for a possible infection and both a daily brown inhaler and a blue inhaler when required. My PF averages between 330-420. I have never been admitted to hospital but have presented myself there on several occasions but only once have I been put on a nebuliser. My pulse oxygen has always been between 97-99. Chest X-Rays showed slight inflammation. All medical professionals that have listened to my chest have said there are no obvious sounds of wheezing. I was referred to a respiratory consultant for a secondary opinion to see whether my problems were a lung issue or something else and she felt that I could possibly be suffering from GERD and was prescribed the necessary medication. Initially this appeared to alleviate my problems, until about a week or so ago when they have arisen again. My consultant recommended a 24 hour heart trace and a breathing test at the hospital and that if nothing showed up on these she wouldn’t call me back due to the GRED medication (apparently) working. Due to the Christmas holidays and other things, I have only been to the hospital today for my breathing test. The Health Care Assistant who did this told me that my lung volume was fine. He asked whether I undertook regular exercise (which I don’t) which he tells me he asked because it showed I have good lung elasticity? However there appears to be an issue with how my lungs are exchanging gases. The Health Care Assistant tells me that it should be 80-90% but mine read 66% on the first attempt and 73% on the second. He explained to me that my lung walls may have become thickened but gave me no further information. I am awaiting my next consultant appointment. I appreciate that this may not be the best place to ask but I was wondering whether anyone had any further information that they could provide me or point me in the right direct of some information. Initially I was told I may have asthma but now I feel I am in limbo. Any information would be greatly appreciated. Many Thanks!

3 Replies

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  • HI Caroline and welcome back,

    I don't know if I have any useful advice for you, sorry, but I have been more or less where you are with the whole diagnosis thing so can sympathise esp about feeling in limbo - I do feel now (crossed fingers) like I might be getting somewhere now if it helps to know that; my latest consultant has said that the basic tests are not showing anything (as it seems they mostly don't for you) but they are persisting with me so it is possible to get somewhere!

    What test was it exactly that picked up the gas exchange problem? I don't know much about that; have had a range of lung function tests but they didn't really say what it was for. Did they give you a reversibility test where you do the test before and after your reliever to see if it improves? You can also have a methacholine challenge which is sort of the opposite - they provoke your lungs to see if your performance on the test drops.

    Also wondered, is the medication you're on helping much? I'm not a medic but would think if it is working, even if not completely, that kind of suggests they're at least in the right ballpark with asthma; my GP is a great believer in just trying the medication to see if it works. Even if it isn't working so well, could you ask about trying other asthma medication to see if it improves the symptoms, as well as the GERD stuff if that's not helping anymore? There's plenty out there as alternatives to blue, brown and steroids, and I feel like I went through a lot of it before getting something that started to work a bit better (still not perfect, but better than it was).

    Just throwing out ideas here, not sure if anything will help! I would suggest ringing the nurses on here though; I did this a couple of times when I was feeling really lost and 'what the hell' and they helped me work out what to do next. They should also be able to explain a bit more about what you've been told and point you towards some info.

    Good luck and PM me any time if you'd like. It is really frustrating being in limbo, having symptoms and being told different things.

  • Hi, sorry to hear you've been struggling with both symptoms and a diagnosis.

    The 'gas exchange' result or it's other name 'transfer factor' is as you say part of the spirometry work up. And gives an idea of how easily gases can cross from lungs to blood stream and back again. As the hca said to you, a cause for a lower reading is thickening of the lung walls. Did they say what your fev1/fvc ratio was? In asthma it's usually low, but in other lung diseases, including those with lower transfer factor results it can be high.

    As philomela asked, do you find asthma meds work for you to relieve your symptoms??

    When are you next seeing your consultant?? Have they done a chest xray, or even a ct?? There are many lung diseases whic could cause results like yours, as could normal lungs lol! So probably best to enquire to your cons who will hopefully have the whole picture! But again, as philomela said, do keep pestering them if you're still symptomatic!

    Sorry, this probably isn't much help, or making much sense ... I am a little sleep deprived!

    Feel free to pm me!

    B x

  • Hi Caroline,

    I have had this low gas exchange reading last year. I was diagnosed with asthma in my 20's, confirmed in my 30's and last year with atypical asthma and now my consultant has changed his mind and is questioning asthma again. (I don't wheeze and my peak flow doesn't vary much.)

    I also have GERD and take omeprazole and domperidone for it.

    The consultant said to me last year, regarding the low gas exchange, that he believes I may have blood vessels that should go through the lungs bypassing them altogether. This was following several tests - CT chest scan, VQ perfusion scan and echo and bubble study on my heart. All of which came back normal.

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