Misdiagnosed asthma : So I've recently... - Asthma UK communi...

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Misdiagnosed asthma

elmothebrave profile image

So I've recently completed a load of tests under thoracic consult. Feno, spiro, challenge test, blood allergy etc all came back normal.

Having been told I have asthma since I was a kid, now 28, it's kind of confusing to now be in this position. My symptoms are tightness, sob and coughing, relieved by bronchodilator.

Now I have to wean off all the 4 current medications I take and see what happens, having been OK for a few months following hospital admissions and 4 lots of steroids!

I asked about vocal cord dysfunction but was told that was super unlikely in my case. Wasn't any Gerd.

Guess I'm just looking to see if anyone has had similar, or any experience coming off the meds altogether. Thanks.

16 Replies

Hi Elm,Can I ask how you got your initial diagnosis and did they do reversibility testing when they did spirometry? And did they say why it is not asthma!

I ask because initially, on several occasions I was told I didn’t have asthma.

elmothebrave profile image
elmothebrave in reply to Troilus

Was initially diagnosed as a child, don't think they ever did any proper testing on me. They did do reversibility on the latest spiro, but it didn't show up enough to qualify. I do have reversibility when doing peak flow but my peak flow records don't seem to suffice. They said because all the tests were clear that asthma was definitely ruled out. He said maybe I had it as a kid but definitely not now.One thing they did say was potentially bringing me in for testing when I'm totally off meds or if I have an exacerbation.

How did things develop for you?

Troilus profile image
Troilus in reply to elmothebrave

I did eventually get my asthma, but it took a while. I went for spirometry, but reversibility testing wasn’t booked, but the technician very kindly did it for me, which the consultant duly ignored. However, I got there in the end 😁You said that you have been feeling good recently and have recently had prednisone. It is possible to have asthma and have normal spirometry and FeNo results when asthma is well controlled.

As far as allergies go, I had a nurse ring up and tell me that my blood tests showed I had no allergies, so I stopped my antihistamine and hey presto, asthma attack. When I queried it my ige was high, which shows I do have allergies, they just hadn’t identified what I was allergic to. So that might be something you want to check on.

elmothebrave profile image
elmothebrave in reply to Troilus

Yeah they've stopped the spiriva and halved the steroid inhaler. When I said 'if I don't have allergies is there any point being on montelukast and antihistamines' he said to stay on them for now, which seems confusing.... But yeah like you I fear what would happen if I come off.Hope things are going well for you now!

I’m going through something similar right now. Started experiencing chest tightness, cough and major exacerbations leading to attacks in 2019. I was diagnosed with asthma. But by the time I got to see a specialist who started some serious testing (2020-21) it became a lot less clear. My FeNo was borderline, spirometry (which I do once a week) hasn’t shown any blockage, and I’ve been diagnosed with silent reflux. Yet I’ve had about 7-8 chest infections since my initial 2019 diagnosis, and I’m on 5 medications just to control it.

I’m still going through the process, but it’s about as clear as mud what I actually have.

One of the technicians said to me 'its another piece of the puzzle' and I'm like there are no puzzle pieces so far.... Its crazy that we can be on so many control medications and it's not the thing those medications control!Fingers crossed your mud clears soon!

Hi Elmo,

I have been in a similar situation in the past. When my asthma is controlled the tests are all clear. Being told by doctors I didn't have asthma was difficult. I stopped all medication and ended up in hospital! If you are stopping meds then I suggest as soon as you notice any deterioration to get in touch with doc or asthma nurse.

I have allergic asthma, ige were at least high in tests in that respect, but many doctors I've seen didn't like to call this kind of asthma, asthma!?

10 years later and I am now under a lovely consultant and getting the right support for asthma so hang in there and don't always assume the doctors know best.

elmothebrave profile image
elmothebrave in reply to ReedB

Thanks for the information. Luckily I've always kept a very detailed asthma diary so am just continuing that. I told my mum to tell me if she hears anything from my chest, as often she'll ask me before my chest gets bad.I'm yet to actually meet the consultant who is in charge of me so no idea what they're like!

Hi.

I'm new to all this fun with diagnosis.

I finally listed to friends urging me to get help last year for worsening long term ignored issues that due to covid resulted in keeping a peak flow diary and eventually being prescribed inhalers. No Spiro, challenge or anything else to confirm or rule out asthma. I need to know if I've developed it from my job...

The preventer ran out in October and the checkup hasn't happened either. I'm still keeping a diary too.

Good luck!

Make sure to get in contact with the doctor about the preventer! It only works if you use every day. They can do occupational checks, so push to have them done. Try to get a proper diagnosis as then you will know you're on the right treatment. Best of luck!

Yes going through this right now.

Had asthma since I was little. Had a few hospital visits the last few years, doses of steriods etc..

It always been difficult to control and has perplexed my Consultant as I'm not a classic case. There's apparently no obstruction on my spirometry and I often don't have the classic wheeze just tightness and sob.

Anyway by chance due to being seriously ill this year I had to have an appointment with a cardiologist privately and he suggested that in addition to everything else I have, that I could possibly have Mast Cell Activation Syndrome.

He put me on two types of anti histamines and after a couple of weeks my symptoms/peak flows started to improve after months of being pretty low particulary at night.

I then had to have an appointment with someone and due to the improvement they also suspected mast cell so in addition to the anti histamines they put me on a mast cell stabiliser drug and again after about a week my symptoms and peak flows have improved further.

So now my Respiratory Consultant thinks I may not have asthma and has changed my diagnosis to possible asthma after over 30 years of supposedly having it.

Like you though I feel in limbo as I'm still on my inhalers and I've no asthma plan if I deteriorate. Nebulisers and steriods still work for me when I have an "attack" but I've no idea what they'll do should I have one now.

I've had the recent complication of adrenal insufficiency thrown in so I'm hoping once that's been looked into Respiratory will come up with a long term plan.

It's been quite a shock though thinking I had it for over 30 years and now it's possibly not. 😳😳

elmothebrave profile image
elmothebrave in reply to Dino40

Agh nightmare! I don't really understand this thing of oh the meds are working so you must not have the disease. Seems quite backwards to me! Fingers crossed they're able to work it out for you soon 🤞

Lysistrata profile image
LysistrataCommunity Ambassador

Ugh the rollercoaster! I am 🙄🙄about the certainty some healthcare professionals have with things which are not certain, eg 'asthma was definitely ruled out'. And the way some of them ignore evidence which doesn't fit their view eg your peak flow, Yes, that needs to be looked at in context, but at the same time it's more than just a one off reading, whereas the tests in hospital tend to be just a snapshot. Also, guidelines specifically include home peak flow variability as one way to diagnose.

At the very least, the fact you have reversibility at home should be included as part of the picture and not dismissed (though my cons has the same impractical view about home peak flow, despite the fact you can't just do repeated spirometry at home).

Have they said anything about your technique? I mean my cons apparently thinks no one but him can judge peak flow technique - so much for them being a team and the asthma nurses etc being part of that. I would see if someone can confirm your technique (just to make it official, not because I'm assuming it's bad) and keep recording meanwhile - try doing it twice at around the same day to see what happens with variability, in case you see someone else who finds it more helpful/is willing to look at the charts.

Obviously, some people are misdiagnosed with asthma, and you may be one of them. However, you could, as others have said, also just be better controlled at the moment, which does not mean no asthma. The fact that reliever helps symptoms and that you have reversibility on peak flow would usually be considered to support asthma, or at least make them pause for thought and not say 'definitely not asthma'.

FENO by itself measures one specific type of inflammation which isn't automatically part of all asthma, so low FENO, especially on meds, doesn't mean no asthma - however from experience, NICE guidelines and some consultants love it and ignore that it's only helpful in some cases. It appears to have a moderate correlation with other measures of inflammation and GINA finds the evidence shows that it isn't more helpful than guideline-based management for preventing exacerbations, for most people (obviously for some it may be very helpful). However, some consultants, including mine, really have a thing for it and tbh don't really acknowledge asthma which doesn't have this type of inflammation - even though this isn't what the research literature says!

Blood allergy can just be that you don't have allergies/don't have allergic asthma - doesn't mean no asthma at all. I believe, without being an expert at all, that allergy tests can also be quite tricksy - I have hayfever but mine are negative. Cons says that means no hayfever, yet I have in the past had very high total IgE and in the spring I definitely react and am improved by antihistamines. I note you're not being told to stop those meds so maybe they do recognise this?

For the rest, I'd be interested to know what you did for stopping meds before spirometry/challenge test? I've had some really terrible advice *from consultants' on stopping meds before reversibility and challenge tests, which fail to acknowledge not all meds work the same way (eg for mannitol challenge, montelukast acts on the same pathway being 'challenged' and you need to stop it about 4 days in advance). All challenge tests are dependent on being done properly, including meds stopping - I've met a confirmed severe asthmatic who had a negative challenge test because she was given bad advice. 'Indirect' challenge tests like mannitol can also be negative if someone doesn't have much inflammation at the time, but this doesn't rule out them having asthma overall. They're called the 'gold standard' but based on my own experience and others' experience here, it doesn't seem that uncommon for them not to be done properly and this then leads to misinterpretation.

It may be helpful for you to chat this through with the asthma UK nurses - including the fact you do respond to reliever and have reversibility on peak flow. AUK helpline - 0300 2225800 M-F 9-5 or WhatsApp - 07378 606728.

Sorry for the essay but I hope this helps. I understand that some people are misdiagnosed with asthma but given what you've said I wouldn't be convinced this is the case at this point - and I'm also aware of the rigidity some doctors (including specialists) have that it can't be asthma unless it ticks very specific boxes.

I appreciate the essay!I just find it so difficult to explain my symptoms if it's not asthma. Vcd shouldn't respond to salbutamol, but my symptoms do. Gaviscon does nothing and lansoprazole made it worse!

My challenge test was methacoline. Was told to stop antihistamines 3 days before and I think it was one or two for montelukast and inhalers. I did a day extra than that for all because I searched it online.... However, based on chat with asthma UK given that I'm well right now it would make sense that it wouldn't necessarily cause a reaction.

Also with allergies I would say I have hay fever too, without antihistamines in the spring and summer I am a mess! Also, if I am in contact with a cat dog I get similar symptoms, and antihistamines help those too. 🤷🏼

It's making me laugh because we have big family history of asthma and allergies, including my sister who has about 20 allergies all confirmed by allergenic specialist.

If it's not asthma then cool because i won't have to spend so much time doing inhalers etc, but also I'd rather not risk the exacerbation.

I was in a somewhat similar situation. I got a new con, did a lot of the tests, and they were all really good. My con doubted my asthma diagnosis, cut my usual medicine and put me at a very low ICS dose only. My asthma got really bad in the months between my appointments. The next appointment I did a challenge test, which was positive, and all my symptoms were showing even before we started the test. I was immediately bumped up on a different, but equivalent medicine regimen to what I was on before I met this con. Now I’m waiting for my asthma to hopefully stabilize soon.

I think that if your misdiagnosis is wrong, and you do have asthma, your symptoms will go bananas once you wean off your meds. It is a terrible way to prove that you have asthma, but I’m glad no one is going to argue with my diagnosis for a while now. I’d think that if you’ve been so bad that you’ve been admitted to hospital, there is definitely something going on.

Sorry to hear you went through that, its what I'm afraid is going to happen. My chest is definitely tighter already, although I expect being totally off meds before the tests will be contributing to that. I think probably the cons wants my chest to get bad to prove either way.

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