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Not sure who to believe at this point.

Nj9x profile image
Nj9x
25 Replies

Hello everyone, hope you're having a splendid day, feeling healthy, and staying safe.

I made a post on this forum 3 months ago and the responses I got were very positive and made me hopeful that I'm not alone in this mess.

I was "diagnosed" with asthma three months ago and prescribed a corticosteroid inhaler, Ventolin inhaler (later changed to Berodual), and Theophylline pills. The only medication I'm using right now is my corticosteroid inhaler (DuoResp Spriomax) one puff in the morning, and one puff in the evening.

The following tests were done on me:

Spirometry (I'll post the results below I don't know how to interpret them. I would be overjoyed if someone helped me with that). FeNo analysis which turned out to be completely fine. And a CT scan.

The Spirometry results:

FCV(%) 127

FEV1(%) 108%

FEV1/FCV 71.7%

PEF(%) 92%

FEF25-75(%) 73%

I also tested positive for pollen allergies (This was in spring April - May). To be honest the doctor I went to didn't really bother to give me too much attention and just wanted to get rid of me as soon as possible.

I went to another clinic and they told me that the proper asthma test hadn't be done on me, which was the methacholine challenge test, and that they cannot diagnose asthma without that test. However they didn't do any more thest on me and told me to come back if I wasn't feeling well.

Luckily my GP has been struggling with asthma and allergies his whole life so I can have a really honest and open discussion with him about everything asthma related. He's been monitoring my situation for the past 5 months and he says he cannot hear any obstruction in my lungs with his stethoscope, and he keeps regular check on my oxygen saturation which always turns out normal. He says that my asthma diagnosis may have been a misdiagnosis, and my situtation could be a combination of anxiety and GERD (which I have been diagnosed with).

I don't have any other symptoms except being unable to take a deep breath and a chest tightness sometimes. I don't have any cough, wheezing or anything like that. I do have a lot of mucus in my nose that I can feel sliding into my throat regularly, and a hoarse voice sometimes. I regularly go to the gym and work out.

I've had 3-4 days when I've gone without a single symptom but days when it constantly bothers me. Ventolin and Berodual do literally nothing when I use them. It has never bothered me in my sleep, and I have no symptoms when I wake up in the morning. The whole things starts when I get up and start moving around.

I've been using inhaled corticosteroids for 5 months now and I am not noticing a change in the situation. Could it be anxiety or GERD?

Note: I was feeling awful one night and I took 2x Medazepam- 4mg and It almost instantly opened up my chest and I could breathe much better.

Any ideas or suggestions would be highly welcome!

Thanks in advance.

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Nj9x
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Troilus profile image
Troilus

Firstly, can I just point out that I have no medical qualifications. What I have learnt about spirometry is based on my own experience.

FVC stands for forced vital capacity. This is the amount of are you can breathe out during the Fev test.

FEV 1 forced expiratory volume. This is the amount of air you can breath out in the first second of the test.

Fev1/Fvc ratio fev1 divided by fvc x100

The percentages you quote are of predicted values. Predicted values are based on your height and your age. They are basically averages, some people will be bang on average (100 %), some will be higher than average, some will be lower than average.

This is where the ratio comes in.

So to take my readings, for example, my fev1 is as predicted, but my fvc is higher than predicted. On the surface, that’s great. But, when you calculate my fev1/fvc ratio it is below average.

Have I lost you yet?😁

Fev1 is used as a measure of airflow obstruction. In other words something is slowing the air you are breathing out.

A common test for asthma is to get a fev1 reading, ( with no medication having been taken) and the to take 4 puffs of Ventolin, wait 20 mins or so to give it time to take effect, then repeat the test. If the fev1 reading goes up by 200 ml or more or 12 % or more then this indicates asthma. Because the Ventolin relaxes the airways other measures may also increase. This is called reversibility.

Results in people with asthma can be very variable. If the person being tested has no symptoms at the time of testing, their results can be normal and show little reversibility, but the same person tested when they do have symptoms they can show a large amount of reversibility.

The methacholine challenge test, can be used to provoke the airways to see if they go into bronchospasm, but I have never heard of this being necessary for a diagnosis.

Sorry this is such a long read, but I hope it helps you.

You can find calculators on line where you can enter your age, height and values from the test and they give you your predicted values, but as your results are presented as percentages I’m guessing you have already done so.

Nj9x profile image
Nj9x in reply to Troilus

Thank you for the detailed response! As a matter of fact I literally did only one spirometry test. One breath in, one breath out. That was it. And I was given a piece of paper with the values I presented above. No pre and post bronchodilator tests or measurements. The doctor didn't even bother to explain the values on the paper.

You actually did more to explain than my doctor did and thank you for that. That's why I'm not sure whether the values I was presented with are normal or not.

Troilus profile image
Troilus in reply to Nj9x

Hi Nj

Here is a link where you can look up the predicted values for your age and height. As you fev1 and fvc have just been given to you as percentages, it is not much help, but you can see how your ratio compares with the predicted. ( This varies with age.)

vitalograph.co.uk/resources...

Nj9x profile image
Nj9x in reply to Troilus

Thanks for the link. However I cannot compare them as the values on the website are presented as (L), whereas mine are presented as (%). Thanks a lot for taking the time to help me though! I really appreciate it.

Troilus profile image
Troilus in reply to Nj9x

Ignore the page where you input your values Nj and scroll down to your age group. At the bottom of the charts you will find the Fev 1/fvc for your age and height.

Your results look pretty normal to me. They might show slight obstruction, but really the results are just a snapshot.

Did you do the test without taking any of your meds? If you did and it is asthma then I reckon you could have full reversibility, but please do not take my word for it, like I say, I am not a professional.

You could try a little test at home by taking your peak flow before you take any of your meds, take some Ventolin, wait for 20 to 30 mins and take your peak flow again, to see if it goes up.

Taking your peak flow on a daily basis is a good way to monitor your airways. The recommendation is twice a day, morning and night. ( I do mine 3 times. Once before meds, one about an hour later and one at night.) If you graph the results out, this is something you could show to your GP to help him to work out what is going on.

You could also try an antihistamine and a nasal spray for your allergies. Pollen has been high this year, so they might help.

I’m I can’t really suggest anything else. Problems with breathless usually take a while to sort out.

Your GP seems like he knows his stuff, so it is a case of patience, observation and sometimes perseverance!

Nj9x profile image
Nj9x in reply to Troilus

Thank you for keeping up with the post, I really appreciate it. I do take antihistamines daily and I use a corticosteroid nasal spray. My GP told me that my spirometry results show very little deviation, maybe even nothing at all. He wasn't that decisive on his answer but told me taking everything in consideration I should't be getting the symptoms I am with the results I have.

I've been diagnosed with Allergic Rhinitis a few times before though. Usually always during spring. But last spring I had a rhinoplasty surgery due to my deviated septum. I think the surgery somehow made my allergies worse this spring and could be what's affecting me so much. I went to an ENT and told me that the deviation in the septum is back, and it's somehow made my nose worse.

What does full reversibility mean by the way? Sorry for asking so much questions!

Troilus profile image
Troilus in reply to Nj9x

Hi Nj, full reversibility is where your fev1/fvc ratio is at or above your predicted. Some people with asthma do have some element of irreversibility depending on severity.

I had a blocked nose like you describe for 18 months. It wouldn’t blow and I could feel the gunk sliding down the back of my throat. I would try to clear it by snorting, with little success. My GP just kept telling me to keep taking the steroid nasal spray.

Anyway, I was prescribed Montelukast for my asthma. Within a very short time of taking it, I could feel fresh air coming in through my nose (lovely feeling!) and a short while after I blew my nose. I have been fine since.

Montelukast can be prescribed for allergic rhinitis, so as your GP is so amenable it might be worth asking him if you could give it a try.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Troilus

A bit belated but just to add to this (I had to check) that reversibility and bronchodilator response often get mixed up. So reversibility as Troilus says is obstruction that reverses to normal after bronchodilator. However, I (and others) also use the term reversibility for what should be really called bronchodilator response, which is where you improve at least 12-15% (varies by guidelines) and 200ml after taking the reliever.

I have severe asthma and I don't always get the obstruction (I can often have both FVC and FEV1 reduced, which is possible in asthma too but more often seen in other lung diseases), but I generally manage to get a good response of well over 15% to bronchodilator. This is why I really think they need to do testing pre and post bronchodilator and not just pre - it is useful to see how someone responds to the treatment!

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Nj9x

Hi - just to say it is harder to interpret when you haven't been allowed to do full spirometry! The usual practice, which I think is actually a bad idea, is to only do reversibility if the first set shows obstruction. The thinking seems to be if you're not obstructed/have 'normal' values there is no point, because you can't possibly have reversibility - but that's really not true!

- 'Predicted' values are just that -they vary naturally and also if you have done a lot of sport/singing/playing wind instruments, especially as a child, you may well have higher than predicted best values, but this is never taken into account.

- Even the predicted values for what is 'obstruction' naturally vary but the same cutoff is used for everyone, even though it isn't actually the same for eg a big guy in his 20s vs a tiny old lady

- I can get some really impressive reversibility, but my initial results look like 'not that bad, not obstruction' - so on the standard protocol I don't have asthma and reversibility testing isn't needed. Problem is I actually do have asthma and I do respond well to Ventolin in general, but my spirometry doesn't look as expected, plus I'm not very good at performing it when I'm struggling a bit.

- As Troilus said - were you on or off meds when you did the test? You are supposed to be off them but let's just say not everyone gets clear instructions.

I'd be interested to know, as others have said, if you ever get reversibility at home, since as others have said it can vary, and if you're ok when you do the tests they may be normal even if you have asthma.

On the other hand, you do mention your reliever doesn't seem to help and you don't tend to get night-time symptoms, which does point away from asthma - but I also thought that GERD was meant to be worse at night?

Your GP seems good and is at least persisting, but I do want to query the anxiety. Do you actually feel anxious? Anxiety gets trotted out a lot as an alternative explanation for asthma-like symptoms, but a lot of the time I think people (including doctors) forget that it isn't just a label you can slap on to explain 'not asthma' and does have its own symptoms as well eg actually, you know, feeling some anxiety at some point - not just oh we can't explain it, it must be anxiety.

I've been told 'oh your body feels it even if you don't' but I find this a little ridiculous, since if my body were that bothered by it I'd expect at least some contribution from my head. In fact, although anxiety is an asthma trigger for some people, it actually helps mine! The anxiety I get is from the concern I won't be listened to and told it's anxiety, but it doesn't actually make my breathing worse.

So if you think that is plausible and you do tend to be anxious, and it seems like there's some kind of link between symptoms and anxiety then of course explore that - but just wanted to raise the point that it's too often used as a way to dump 'not asthma' and it should be still considered in its own right. You might find this post useful on asthma and its mimics, anxiety and dysfunctional breathing (both of which can occur separately, together, and alongside asthma): healthunlocked.com/asthmauk...

Nj9x profile image
Nj9x in reply to Lysistrata

Such a detailed response Lystratta, thank you! How I wish my doctors put half the effort into diagnosis the community members here do.

Yeah the doctor literally didn't try to explain the spirometry results. I just took one test, breath in and breath out and that was it. The story is a bit of a mess so I'll try to explain to the best of my abilities.

I started feeling short of breath one night all of a sudden and it simply didn't go away. I have felt short of breath before, but my breathing usually came back a few minutes later. I called a private clinic the next day and went for a check up the day after it.

The doctor listened to my breathing through a stethoscope, did a CT scan and told me I have asthma before even doing the spirometry and FeNo analysis. They told me I have to get tested for Covid-19 before I do the spirometry and FeNo analysis test, but nevertheless they told I have Asthma and prescribed me with DuoResp Spiromax, Ventolin and Theophylline pills. This was Friday. My Covid-19 test came up negative and they told me to come back on Monday for a full check-up. Meanwhile during the weekend I started following and taking the prescribed meds (even though no test had been done on me yet).

And by the way, the doctor wrote down a lot of symptoms I wasn't having such as cough, wheezing or sleep apnea. She wrote them down as me having them, where I was only feeling shortness of breath and slight chest tightness.

I went for a spirometry and FeNo analysis on Monday and I got the Spirometry results I posted above. The doctor told me that there was a really slight deviation in my breathing my nothing serious. Even though she claimed there to be a deviation I didn't do any reversibility tests or metacholine. The FeNo analysis showed no lung inflammation. The normal values were 10-14 and I got 12. Golden middle.

I went to another clinic but they wouldn't due any test on me due to Covid-19 but told me to keep up with the meds and come back if I wasn't feeling well.

My GP suspected anxiety when I told him I had taken 2 pills of Medazepam one night when I was feeling really short of breath and it helped me breathe again. He told me that if I had asthma, it's very unlikely that the anti-depressives would help the situation, actually they would make it worse. That's when he suspected anxiety. And I haven't talked to a professional about this but I do feel anxious and depressed almost all of the time. I did have a situation in my personal life that had a severe impact on my mental health a month prior to the breathlessness situation.

GERD is usually worse at night but I do take meds for it, and watch what I eat. I don't eat anything 3 hours prior to bed and take an anti-acid pill before going to bed and that pretty much keeps it in check.

I usually feel best when I sleep and as soon as I wake up in the morning. All of my symptoms are usually gone during the night, and maybe half an hour after waking up.

I did have a full heart check-up and I don't know the name of the diagnosis but they told me one of the chamber doors of the heart doesn't fully close and open when breathing, but instead it kind of flutters. But that it wasn't a big deal at all and shouldn't contribute to my situation.(This is the best I can explain it).

Oh boy this was a big wall of text. Hope I didn't overload you with information. As I said, the story is a bit of a mess.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Nj9x

Sorry, meant to reply to this before!

They really need to explain better what the tests mean. You do seem to have a lot going on which doesn't sound fun, and I'm not impressed that they seem to have just invented the history instead of listening to you.

Seems like anxiety isn't an unreasonable possibility then - but on the other hand it seems a bit odd that you would just suddenly start feeling short of breath like that for anxiety? I'm no expert but would have expected the breathlessness to correlate to some extent with the anxiety? I guess you could have some anxiety and that's why the pills helped when you tried them, but also maybe something else alongside, even if not asthma? Sorry to hear about the situation in your personal life - sounds like you don't need all this to deal with as well!

I am confused by your FeNO results...I'm guessing that like everything else they didn't explain them, but usually FeNO is measured in parts per billion (ppb) and can be anything from 0 to the hundreds. I have never heard of 'normal' being 10-14 or having such a narrow range, but maybe it's a different device. The ranges vary a bit but usually 0 to about 20 to 25 ppb is 'normal', 20-25 to 40-50 is 'not quite normal' and 40-50+ is high and indicates a specific kind of inflammation often found in asthma. However, you can be high and not have asthma (eg hayfever, and it's naturally higher in some people and if you have eaten certain foods), or low/middling and have asthma that doesn't have that type of inflammation, like me. So it just means you don't have the inflammation that responds to steroids. With asthma I would expect some response on the reversibility/challenge but you haven't had a chance to do them!

Re the heart thing - was it atrial flutter? I am not a doctor but if it is that I looked it up and it seems to be associated with several of the symptoms you have. Are they absolutely sure it can't explain at least some of what you're experiencing? Could you discuss with your GP whether it's possible that might be contributing? I wonder if it's also worth looking on the British Heart Foundation website (I think they have a forum for that) to see if you can find more about that and if it might be contributing as to me it seems a bit odd to just say it cannot possibly be related when you have unexplained symptoms that can be symptoms of that.

Hope this is helpful - again not a dr just a bit of spewing things out here.

Nj9x profile image
Nj9x in reply to Lysistrata

Thanks for the thorough answer Lysistratta. I will talk to my GP the next time I see him whether it could be something related to my heart as well. Also I'll schedule an appointment in another hospital to have all asthma related tests done from scratch.

If I don't have asthma related inflammation, or asthma that doesn't respond to steroids I guess treating my condition with inhaled corticosteroids wouldn't be helpful at all. I'll just have to get a second or third opinion.

Also my voice is hoarse pretty often, and at the beginning when I first started feeling shortness of breath I found it hard to properly pronounce some sounds. Also I clearly remember that when I tried to take a deep breath the point of restriction was actually my throat and not my lungs, at least I felt that way. Also when I try to take a deep breath my lungs don't wheeze, but rather my throat makes a raspy sounds.

Also I'm not sure if it's worth mentioning, but I don't get asthma attacks. Not sure if this is relevant.

I guess VCD would be worth checking out in this case?

mylungshateme profile image
mylungshateme

Just a thought again I am no expert so forgive me if you already know this or doesn't make sense. So I had a head ct scan just before lockdown I too get nasal issues and "funny" voice and was diagnosed with chronic sinusitis which respiratory nurse said not all asthmatics get but it means my entire airways are affected and causes a whole host of other problems/symptoms which make asthma worse. So maybe you have sinusitis..? The only way to diagnose is head ct. This maybe of no help to you so apologies if not. 👀🙂

Nj9x profile image
Nj9x in reply to mylungshateme

Thank you for the response, and no it doesn't sound funny at all. What I find funny is that people online are much more willing to go into details than doctors! Thank you for that :). I might just go ahead and suggest a CT scan to my GP to see if he's willing to write me a recommendation.

Thanks a lot!

mylungshateme profile image
mylungshateme in reply to Nj9x

I know what you mean people on here are so helpful with there comments advice and personal experience I'm learning far more this way than the hospital!!! Its just also good to know I'm not alone or imagining my symptoms as many of us end up feeling like when were not being listened to. It's worth a try asking your gp as at the end of the day if there insure your have the right diagnosis anyway and your meds aren't making a difference then they need to investigate and re diagnose in order to help you! The scan literally took not even 1 min was so quick didn't even know it had finished! Good luck and let us know how you get on. 🙂

hilary39 profile image
hilary39

You've been super thorough which is great! It is odd you're not noticing an improvement with a controller inhaler. Are you also taking an antihistamine? Will you be able to get a methocholine challenge scheduled?

Spirometry is a helpful diagnostic tool but many of us find that listening to our symptoms is the best way to track what's going on with our lungs. My spirometry numbers are similar to yours and I have very severe hard-to-treat asthma.

Did anything change in your environment--house, work space (if you're going in), did you move to a new area in the past year etc? Sometimes new allergens can worsen asthma such that even a slew of inhalers aren't enough to address the symptoms. A few years ago I got a new job in a building that had a lot of mold on my floor. I was fine for the first few months but when the heat kicked on it must have changed how the mold was blown out and I was a mess, an absolute mess, for 7-8 months until I was moved to a new floor.

Sorry you're going through this, sounds frustrating and puzzling, but good you're considering all angles!

Nj9x profile image
Nj9x in reply to hilary39

Thank you so much for taking the time to respond Hilary. And thank you for reading through that wall of text I wrote. Well I'm usually a pretty outdoorsy guy, I spend most of my time outside of home. All this started happening with the quarantine when I was spending almost all of my time at home. Not sure if that could mean something.

Our spirometry test are normal...or close to normal I guess? My GP took a look at my spirometry results and told me that they didn't show anything major. Maybe just a slight obstruction, or nothing at all. He wasn't really definitive in his answer.

I find that there could be days where I am without symptoms, or maybe just slight nuisance here and there during the day, and days where it really bothers me. So I'm kind of trying to find a pattern and documenting everything I do on the days where I'm fine, and on the days I feel horrible.

I tried a Ventolin based inhaler and an ipatropium based one. They don't do anything much really.

I've been diagnosed with Allergic Rhinitis a few times before, usually always during spring. But last spring I had a rhinoplasty surgery due to my deviated septum. I think the surgery somehow made my allergies worse this spring and could be what's affecting me so much. I went to an ENT and told me that the deviation in the septum is back, and it's somehow made my nose worse.

hilary39 profile image
hilary39 in reply to Nj9x

That's interesting about the surgery. I wonder if it could have made it worse indeed. See how you do with the methocholine challenge (once you can get it scheduled!) and that should tell you more about your asthma. Keep tracking your symptoms, your PF, whether your asthma interrupts your sleep or exercise etc. Maybe it'll help you notice a pattern of outside variables that has so far been elusive.

Nj9x profile image
Nj9x in reply to hilary39

Thank you Hillary. I've actually started tracking my daily activities to see whether I can notice a pattern that affects my condition. So far my asthma doesn't interrupt my sleep or excercise. I think I actually feel better when sleeping and working out. But I will have to wait I guess.

Martin153 profile image
Martin153

Morning. I also use the Duoresp spiromax & have 1 in morning & 1 in the evening. I find this inhaler brilliant. You probably do know but the reason it's called duoresp is it acts as both a reliever as well as the steroid. So you can use it instead of the blue rescue inhaler. I have had almost no trouble in 4 years on the Duoresp spiromax.

Nj9x profile image
Nj9x in reply to Martin153

Thank you Martin. How long did it take you to notice a change for the better with the DuoResp? I've been using mine for almost 4 - 5 months! :)

Martin153 profile image
Martin153 in reply to Nj9x

It was almost instant for me. If you are only having 1 go on it try 2 puffs morning, 2 in evening. That's what I started on. Worth mentioning I also use a Himalayan salt inhaler. Worth googling as it is good for any lung trouble.

Nj9x profile image
Nj9x in reply to Martin153

Yeah that's what I started on too. 2 puffs in the morning, 2 puffs in the evening. I then went to add 2 puffs in between too for 6 puffs daily total (the maximum allowed is 8). Now my GP told me to decrease it to 1 to see whether there is change in the behavior of the condition.

Martin153 profile image
Martin153

Forgot to mention that if you do use it as a rescue inhaler there is a limit on how many times you should use it in a day. The instructions will list that. Cheers.

Nj9x profile image
Nj9x in reply to Martin153

I use one puff in the morning and one puff in the night. I use the 160mcg/4.5mcg one.

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