Appointment with specialist today

I had my second appointment with an asthma specialist at a hospital today. He said I didn't really have much response to histamine test and that the nitrogen test didn't really pick up any inflammation. I have been told that this just means that I'm not a brittle asthmatic. Whilst there is no doubt I have asthma, the symptoms I am describing indicate that its not just asthma, its asthma and something else. I asked if he has any idea what (I have had heart monitors, diabetes tests, thyroid, all the common tests and I'm healthy here) he mentioned that it could be a problem with gas exchange in the lungs. If I'm honest the main thing I suffer is feeling general tiredness 24/7 in winter and often in summer and need around 12 hours of sleep to feel OK in winter.

Has anyone had a similar experience?

PS this is UniGirl but apparently I can't be that anymore so now its UniGirl2

17 Replies

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  • Perpetual tiredness could be a whole raft of things - but in terms of your lungs have you had an overnight oxygen sauration done at home to screen for sleep breathing disorders such as apnoea/hypopnea?

  • seems strange that they went to an asthma diagnosis if the 'main' thing is tiredness?? or do you get a lot of asthma stuff as well.

    On exhaled nitric oxide, i though that asthma was a component of airway inflammation (as picked up by enhaled NO) and bronchoconstriction, which can be picked up in a histamine challenge if you react to that - but surely if you dont have an attack during the challenge then you wouldnt!?! i dont know. i guess if you have elements of something else contributing then it would be worth considering?

    How do you feel about the whole thing? I know it can feel almost upsetting when you had a diagnosis and then suddenly are back into the relm of the unknown? was your cons nice and supportive of how tough it can be to suddenly go back to not having any answers? is there anything i particular he's thinking of looking into? and i'd second that if tiredness and lungs are an issue then a sleep study might be a good plan!! i assume they've covered all the anemia basics??

  • Hi Unigirl,

    I had a similar experience with tests and had a low gas exchange score. I was told by the consultant that he believed some of my blood vessels that should be going to my lungs bypass my lungs. I always need 9 hours sleep and a siesta when I can get one but, have always thought that is just me :-) Back in my 20's (now 50) the first consultant I saw said my heart and lungs don't work well together.

  • Nurse Furby I will definitely mention this when I go doctors next Tuesday. A problem with breathing in my sleep would definitely make sense. Need to love further into this.

    Sophie, when I say the main thing I do get a lot of asthmatic symptoms also, I respond to the medicine, feel worse if I try to lower it as I have often been advised to do as you should keep meds to a minimum (not usually a good result) and have had a lot of attacks in the past two years. It's just that the tiredness can take over and since it is 24/7 in winter there is no hiding from it. He also mentioned that tiredness isn't a symptom many asthmatics report.

    When I love the cons office I felt very annoyed for a few hours and I think it was the grey area of ""something else"". Although upon more thought it is a relief that a doctor is not trying to deny asthma as I know if he tried taking me off the medicine I'd have a guaranteed attack waiting for me and it's good that he is finally looking into the ""something else"" and acknowledging it. I felt in the past doctors have acted as though it's either asthma OR something else with no overlap (i don't know why they couldnt ever consider this??) I have been tested for anemia many times and I don't have it. My cons was OK, I prefered my previous as I felt a bit rushed but I wasn't leaving until I was done - I have learnt that much from GPS! I am having a test next time where I will ride a bike with breathing monitors on (I think it looks at my throat and heart too) so they can pin point where the problem actually is rather just simply saying there is a problem so hopefully I'll get somewhere with that.

    JF, it is nice to hear from people with similar experiences. how did they test for the gas exchange? Wow, what a big thing to say, how have the solved the problem of your lungs and heart not working well together?

    Thank you all for your replies.

  • Also forgot to say, when tested for allergies I have a moderate cat allergy and I am very sensitive to dust so this also indicates asthma diagnosis

  • Hi Unigirl,

    When I was in my 20's I was told to work on my fitness to improve the efficiency of my heart and lungs. I love walking and have used this over the years to keep fit. They didn't suggest anything this time, just suggested the low gas exchange could contribute to my SOB. I have since realised there are things I have never been able to do as I always get SOB even when my asthma has been in perfect control - like, aerobics, tennis and cross-country running.

    My asthma diagnosis is based on my good response to nebulised salbutamol but I have always needed high doses of steroids to get my asthma back under control. My asthma is always quick to go out of control and slow to regain control.

    I had all of the tests thrown at me but they didn't have a treadmill test. I would have really liked to have had that one as exercise is my biggest trigger. I still don't know why 'my asthma' doesn't show as 'classic asthma.'

    Hopes this helps :-)

  • I'm not too different from you UniGirl, and JF and I have already discovered we're pretty similar asthma-wise! I""ve also had a low gas exchange result a couple of times but no-one seemed bothered except one time when they suspected me of having a pulmonary embolism (I didn't, but I've been suspected of this 3 times now!)

    I've had that test on the bike - though I had it on a treadmill as I said that would set me off. They found I had a mild issue with vocal cords closing off and I was sent to physio, but she concluded it might be there but it was mild and not causing symptoms. I did also have a breathing pattern disorder on top of asthma but worked on that with physio and it definitely improved so think probs now are NOT just that!

    Re the tiredness: I'd say uncontrolled asthma can make you very tired! I had that when they were still looking at diagnoses and I didn't have any preventer medication, and I still get tired now with worse asthma symptoms, though that's partly poor quality sleep. It might be something else but I'd sy it definitely can go with asthma as I don't feel tired in my good breathing periods -do you find it correlates with asthma symptoms at all?

    I do have huge sympathy as it's difficult when you're in that diagnostic grey area. I had 2 admissions and several OOH trips last month for breathing and while it wasn't fun it was v much treated as asthma and I think it was, though I was finally out of the grey area as they didn't seem too bothered when treating me about the abnomalities (eg had no wheeze but wasn't moving much air) - but now my consultant is saying some odd things which contradict everything else I've heard and is putting me straight back in the uncertainty of 'hmm maybe it's partly perception' grrr. (he didn't seem to think I'd needed any of the urgent stuff, but he wasn't actually there).

    Good luck with finding a cause for the tiredness - and with improving the asthma!

  • JF, I try to run 3-4 times a week for half an hour a time during summer. During winter outdoor exercising is not an option but I can manage some dance classes to keep my stamina up. However, as I was telling the doctor, my running can be very hit and miss. Sometimes I will run for a min then walk home because my chest is tight and I can't run at all. Other days I can be a pro. I haven't noticed much correlation between bad running days in summer and anything like weather(storms, heat or whatever) or stress. Have you ever found this with your walking or exercise? Or you Philomela?

    When you are feeling short of breath but it isn't your asthma how can you tell the difference? Also what kind of relief is there for this feeling? Are you on any meds to control this or are there none that are offered? I am finding a lot on this board that people have what is not necessarily ""classic asthma"". I do not know many asthmatics (only those who only have blue inhaler- not on anything preventative and are very lucky barely having symptoms) so I do not really have anyone to talk to about asthma who can relate so I did just think it was my asthma that was very strange. Now I know how varied it can be for everyone - doctors should be told this!

    Philomela, surely low gas exchange is a bad thing? Has nothing been done to sort this? Is there anything that can be done?

    Well I have definitely noticed if I'm going through a bad period asthma-wise then I am a lot more tired. Also right after an attack all I wanna do is lie down and not move for the rest of the day! Have you ever found this? The tiredness can then carry on for weeks after and it is very difficult to pick myself up after a bad attack. To be honest I feel like I have been in a sort of grey area this whole time and now I've just moved into a different one. GPs have often stated that they don't know what else they can give me or have said they don't know why I'm so tired and give me the old ""come back if you feel any worse"".

    I am sad to hear you had a bad month last month, hopefully you are better now?

  • I am the opposite, worse in summer, with heat and pollen. I am best December and January for least triggers (but need scarf over mouth and nose to keep the cold out). I have had periods with well controlled asthma and my triggers become minimal up to very sensitive like now when I have loads of triggers. I have had reactions to skin prick tests to dust mites, grass pollen, tree pollen and rape seed pollen.

    I wonder if my SOB with the low gas exchange is more noticeable when it adds to my asthma symptoms when they start and without asthma I just can't do the more physical sports. With hindsight my mum says I was always slower than my siblings physically but she just thought I was a plodder lol.

    I have not been offered any treatment, just told that's what you have.

    I also agree with Philomela, uncontrolled asthma at any level creates tiredness because our bodies are working harder. When my symptoms go, I have so much more energy.

  • I used to always be worse in winter with the cold etc, though humidity was also a problem in the summer. This year though I seem to have developed hayfever and pollen allergies, and I suspect, though can't be sure - I will be getting allergy test results back on Wednesday - that last month which was so bad (for me anyway) may have been caused by the v high tree pollen - consultant is pretty dismissive about it all and doesn't think it was a problem. However, I know I am MUCH better now - I went to London on Wed and walked around at a decent speed and only needed 6 puffs all day, compared to June when I was creeping around, sounded funny (I rang the AUK nurse from a phone box to get advice on various things and she was a bit worried about how I sounded and the idea of me walking round London given what I'd told her!) I find it hard to tell the difference till I'm better then I think 'wow can't believe how I did that!'

    Asthma does make me tired and it did used to be almost constant before I got on some medication; I do get some relief now though. But yes, I do get very tired after an attack and after I came out of hospital definitely felt like that, though part of that was probably the impossibility of sleeping in there! I am a little puzzled also re them not doing anything about the gas exchange as once they knew I didn't have a PE it was dropped. I'm not worried about it, it's more that given I am another strange/awkward one you'd think it would be a possibility to look into! But perhaps it's something they see a lot, I don't know. I do find walking is harder and slower when I'm worse - it's one of the ways I measure things and I think it is harder when it's humid or the pressure drops - but not with stress, that doesn't seem to set me off.

    Re the breathing - not sure! I have a breathing pattern thing on top of the asthma so that can be a little different, though have been working with physio and definitely improved that - I can tell because of various things that are easier, like with that I found it easier to breathe lying flat (with the asthma, no way, ugh, doesn't like lying down) but not kind of half-lying (the asthma doesn't like that either when bad but is fine with it when ok). And I kept taking little random extra breaths and getting air hunger which I don't do now. Had to practise breathing slowly (mainly I breathe too fast apparently though that also happens during an attack) and building up how much I could do without the bad habits - she said I do know how to breathe (diaphragm, through nose etc) but sometimes do it too fast. Consultant didn't seem to think there'd been improvement but physio said yes, definitely had been and tbh on this one I trust physio a lot more as she's an expert on breathing pattern stuff. If you think you have an issue with that might be worth asking ti see a physio; they can be pretty subtle, as I tend to score fine on the questionnaire thing and know how to breathe correctly etc - also a lot of the time I don't even get any symptoms from that! I do find with asthma I tend to get a tight chest and a feeling of it being very hard to push air out rather than wanting more in - when I'm singing while having problems I really feel I'm having to work hard to push the air out, but it sounds ok once I do and my throat is fine (which is why I didn't believe former cons when he was on about it being laryngeal as I can't see how I could produce good singing (even if it's much harder work) if it were all in the throat.

    Sorry about the ramble there, it may not have been what you were after but thought I'd share in case it was useful. I do feel for you with being in the grey area all the time as I seem to spend a lot of my time there. And just when I thought now it really is mainly asthma, cons is seizing on the breathing pattern thing - he seems to think it's impossible that I could have improved that, but I know I have yet am still having problems. I also think probably the hospital would have been able to tell the difference (I don't wheeze but I did go very quiet in my chest and wasn't moving much air) and I have seen my ABG results as the cons wanted them; don't know what he will say but have been told (very much off the record) by someone else who knows that they are consistent with asthma though not just asthma.

  • If you're worried about something other than asthma, especially if it is causing difficulty predominantly on inhalation more than exhalation, then ask to see a physiotherapist to rule out paradoxcial vocal-cord dysfunction. This is often misdiagnosed as asthma, and since the two conditions can quite frequently occur in the same individual, it is likely that a bronchdilator has some effect. A speech therapist, good physio or good singing teacher would be more help in this instance than your GP - or very probably the asthma nurse.

  • I really am grateful for all these replies. Not only is it great to talk, it is great to talk to someone who understands and I will definitely write down all of these suggestion to mention them at the docs on tues and at my next appointment with cons.

    Good to know others get tired with their asthma. Take today for example, I had my usual run, only for half an hour as I can't really manage much more. It was OK but not my best. Took inhaler twice. Then was at the park playing cricket and other sports (just for fun, not competitive) with friends but I was out of breath very easily so I rested for about 10 mins before chest got tight so took reliever and I have not felt right since. (I don't have any pollen allergies as far as I know-think it was purely the exercise). My chest is OK now but I couldn't and didn't run after that. Now I am feeling very lethargic in my body and my mind feels very foggy. When I got home my mum kept asking what is wrong, am I sad? I said no I am just that tired but I think my whole demeanor has turned a bit more sour than I was when I first woke up this morning. Does anyone else find this? Think it's a night of rest for me ahead (cup of tea and film).

    JF, I hope you are feeling well. I think this summer is getting to a lot of asthmatics and if this is your bad time you must be feeling a lot worse.

    Philomela, do you think maybe my tiredness is partly from not finding the right meds? What medication are you on now that works for you? You are lucky that stress doesn't set you off. When I am stressed I have a very tight chest and if I am upset and crying I find my chest and throat very tight. We all have different triggers though don't we. Glad to hear the physio has helped? What sort of things has the physio done with you ie breathing techniques, exercise, both? I do not like to lie flat with bad asthma either. If I'm having a bad night I have to get more pillows and in winter I feel as though I might aswell sleep upright!

    I do not fully understand what you mean by air hunger in reference to SOB. You say its difficult to get air out during an attack, I don't feel that I can always fully remember how I feel during attacks, just key moments because I am feeling so sleepy usually. But I find that I get a feeling that comes over my whole body like I know its coming about two seconds before it comes on (do you know what I mean?) but I am unsure whether its harder to get air in and out, I really can't ever remember.

    Nothing is a ramble to me, I find it all very interesting and I love understanding more about everyones different experiences. Everything is useful to me.

    Tenorman, I have never heard of paradoxcial vocal-cord dysfunction. Would this cause sudden attacks? I have been tested and have allergies to dust and cat and cigarettes and cigars are a Big trigger for me, would this affect this? there isn;t really much useful information online.

  • Hi, I've been meaning to post for a while so I'll try not to repeat what others have said!

    The tiredness thing certainly rings true with me- not just the obvious tiredness when you are not sleeping but one of the first signs that my asthma is playing up is that I get really lethargic. My GP said that this is understandable as your body is trying to cope with not being right and tiredness is a symptom of a lot of illnesses for this reason. I also get the mind fogginess which comes with tiredness but I also get it when I have used a lot of reliever (and when on pred).

    With your test results, my exhaled nitric oxide test was normal at an appointment when I had no symptoms back in April however a month later it was really high. My cons said this was perfectly normal (a bit like spiro) and a wide variation would indicate asthma.

    I am also a keen runner but have problems running outside in summer (pollen) and winter (cold air). I tend to do lots of runs in the autumn for this reason. Luckily the exercise itself is not usually a trigger for me unless I am generally struggling.

  • Thank you, unigirl. I have been sofa surfing for 5 weeks now. Fortunately, with the heat and pollen reducing I have started daily short walks since Thursday.

  • Unigirl

    It would have helped had a spelled it correctly. It's Paradoxical Vocal-Cord Dysfunction. It's usually seen as exercise induced - so often shortened to EI-PVCD. It is a common misdiagnosis in athletes. However, stress and allergic triggers can also cause it. It's a condition where your vocal folds adduct (come together) when inhaling. Normally they should abduct (open), so of course this causes tightness and restriction on inhaling. It sometimes causes a wheeze, and sometimes is silent. It can be diagnosed by stroboscopic laryngoscopy, but I have just read of a 24hr diagnostic method so will read up on that. I heard about the condition last year on Radio 4 ""Case Notes"". I'd not come across it, but found it of interest because I am an asthmatic singer and singing teacher, with a previous history of competing in university sports - where exercised induced asthma was a problem for me. Suffice to say, I don't have EI-PVCD myself, but it was interesting to hear and then read about. Listening to all of the athletes with EI-PVCD being interviewed, I could detect some very common vocal habits amongst all of them - poor vocal fold adduction, breathy/hoarse voices and a lot of high/clavicular breathing. I found this Powerpoint Presentation on line, which you might find interesting to read. udel.edu/shs/staff/manuals/...‎ Note that, although one of the early slides says that this is first thought of when symptoms don't respond to asthma medication, a later slide says that the two conditions, asthma and PVCD, often occur in the same individual. Hope this helps.

  • Kayla, so you get the mind fog too? Do you have any tips with how you deal with it? I find it very difficult when I have a lot of Uni work to do and I experience this, not really sure how to deal with it and sometimes I just have to put work off. I guess the best thing I find it rest and to relax. If I stress it only gets worse. With a lot of reliever I often find I get headaches. And with steroid tabs I eat whatever I can find and have terrible insomnia, waking up for around 2-3hours in the middle of the night every night.

    Ah this makes sense as I felt perfectly fine at the time.

    Tenorman, does this condition have a page on NHS website? if so I can't find it . I do not think this sounds like me but I could be wrong and wouldn't wanna rule anything out until I am sure, this is very interesting as I have never even heard of this before.

  • Unigirl

    I'm afraid it doesn't appear to have a page on the NHS website. A quick search shows that there are lots of resources about it in the US and Australia, but very little here in the UK, I'm afraid. This website has some good introductory information, including some common symptoms and any similarities to, or differences from, asthma. web.nmsu.edu/~lleeper/pages...

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