Lung Sheffield

I arrived at lung sheffield today for breathing tests to be told you should have stopped your inhalers for seven days prior.

Has anyone else had to do this?

[PMRPete]

You should have been told beforehand how to prepare for the test, it is common to stop some inhalers.

nhs.uk/conditions/spirometr...

cdn0.scrvt.com/08ab3606b0b7...

[Hidden in reply to PMRPete]

it was not in the letter unfortunately so the test was done with me on inhalers and now i have been told

to

stop montelukast and inhalers and was discharged.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

Wanting to facepalm. They should have told you exactly how long to stop inhalers etc for but they often don't. What test was it? Challenge test? Reversibility? They should definitely have confirmed that with you in plenty of time and checked on the day what you had before going ahead. Looks like no one bothered to note that you hadn't stopped inhalers and so whoever interpreted the test thought you didn't have asthma because they thought that was your result off treatment.

My first challenge test was negative because they gave me stupid instructions about stopping - and it was a specialist hospital. My second one they also gave me stupid instructions (and it was another specialist hospital!) but I had learned from the first and did my own research on what to stop when (it wasn't 7 days for anything, wow.) I have to say it was quite hard and the guy doing the test looked a bit horrified when I came in coughing madly but I had a fairly strong positive reaction. These tests really are sensitive to this and it drives me nuts that people often don't seem to get proper instructions and then no one checks and the test is still interpreted as though it were infallible! I spent ages being told I couldn't have asthma because of the first, negative test. Did you get *any* instructions about stopping anything at all?

Are you struggling off the inhalers? I would advise calling the helpline here asap. And do you have a good GP? I would go to them and explain what has happened and how you're finding it off the inhalers.

[Hidden in reply to Lysistrata]

i have rung asthma uk helpline nurse was brilliant. i have recently moved GPs so am

waiting for a health check. after this will go to new GP and ask for advice as per asthma uk helpline advice.

I did not receive any instructions. i dis nitrogen oxide, a gases thing, spirometer with a nose clip and another breathing test on spiro. no reversibility test because no obstruction. not a clue what that meant! i felt so lightheaded afterwards and the mouth piece was too large for my poor smalll month still have cuts from plastic in my mouth.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

That's so annoying! Without being an expert but doing this a lot and reading up, plus knowing how things go with me, I get annoyed when they don't do reversibility because they think there is enough information from the first test.

I am not good at doing these tests, my best used to be higher than predicted and I will not always show anything much on the first one - it may even look kind of ok. However, if you give me the bronchodilator I usually show a strong response with actual better technique (the worse I feel the worse I am at doing the test). I realise this isn't everyone, but I do feel they get a bit rigid and also in cases like yours and mine do not give proper instructions yet rely heavily on the test without considering what could have affected it.

I should add also that the nitrogen one (exhaled nitric oxide or FENO) should *not* really be used to rule asthma in or out. I have read up on this because my consultant loves it and really it is more to detect the presence of specific inflammation. I definitely have asthma based on other tests and general bad lung behaviour, but my FENO can be normal even when struggling which they said means something else causing it and that pred therefore won't help.

I'm glad the helpline was useful - I generally find them so good! Hope GP is also useful.

[IZZYWIZZY in reply to PMRPete]

Hi I've never been told to stop before a test, in fact I think my clinic should get its act together.

[elanaoali]

I due to have breathing tests in end of January but my letter says only 4 hrs before the test!? My appointment is 9:30am so I planning to get up early and do it at 5am. I know that if I don't take my seretide for two days I was trying to use a different inhaler. 7 days seems a long time to be without having your inhalers?!

[Hidden in reply to elanaoali]

see petepmr response it has links to how long. what you been told is not correct i can remember that much.

[risabel59]

They often forget to tell you what to stop and what not to stop. On a number of occasions I have rung the clinic or the consultants secretary to check, and often they don't know.

It can be very specific to the tests they are doing. I normally have to stop steroids and LABA/LAMA for 24 hours, Montelukast and Antihistamines for 1 week. But when I have done Clinical trials I have had to stop everything for a week before hand.

Like somebody else said FeNo testing measures inflammation, but if steroids are working for you and you aren't suffering from an attack or virus you will get a negative reaction. For some people with Asthma, steroids don't work very well, and FeNo is a great way of finding out if you are one of them.

Anyhow what I think is so dreadful about this is that you weren't told. It is such a waste of everyones time, and resources are so limited. It never ceases to amaze me that all the thinking in hospitals seems to be so disjointed and disconnected.

I do hope you manage to find a good GP and Consultant and get the right treatment.

[Hidden in reply to risabel59]

i still cannot believe i was told i do not have asthma due to the results. i the results were false as i had been on inhalers. i am ringing to see a nurse practitioner today as i am already having to use my ten puffs of blue ibhaler. only on day teo of apparently not being asthmatic.

[Lysistrata Administrator Community Ambassador]

I hope the NP helps. As an old lag with way too much experience of consultants good and less good, I groaned when I read your other post about being told you can't have asthma because you don't wheeze. This is just not true and is explicitly covered in asthma guidelines which state a wheeze is not required for asthma.

Unfortunately though some respiratory cons are good, others do not seem to be very familiar with asthma at all but still think they are - I have actually been told by a respiratory dr I was making up no-wheeze asthma and it wasn't possible! Combined with the confusion over your tests and not stopping inhalers, I can see how this all happened, but it must be very frustrating for you. I'm glad you're persisting with trying to get it sorted out - I got there eventually if it helps and I rarely wheeze!

[Hidden in reply to Lysistrata]

I have an appointment with a health care assistant at 15:30 as that was all that there was.

[Hidden in reply to Hidden]

i now have an appointment with a doctor on 7th december. any problems in between ring medical centre.

[ElizabethC in reply to Lysistrata]

Hi Lysistrata,

Can you post a link to the asthma guidelines re the no wheeze? I rarely get a wheeze and get told the asthma is not bad yet I can't talk and am having difficulty breathing, coughing etc. A lot of asthmatics I know don't have a wheeze - sounds to me as though its pretty common.

Yesterday was a good example (though it was clear I was struggling and was nebbed in the surgery which really helped. I have a cold so HAD to get the inflammation down so the chest infection can come out. Nebs worked where the ventolin didn't on its own).

Anyway, even with me struggling, and nurse agreeing with that (and muttering about A&E), she STILL said "No wheeze". Yet I can *feel* precisely where in the lungs I am tight (mostly right hand side). Once I'd been nebbed and the inflammation reduced (hugely!!), I could *feel* the shift in the mucus in my lung.

I'm back tomorrow to check how I am going on the steroids (three days) and antibiotics (it was infected hence why I hotfooted it down to the surgery). I'd like to ensure I can point my nurse to the guidelines to prevent the red herring of "no wheeze".

Next thing I have to stop them fixating on is GERD. But that is another post.

[Lysistrata Administrator Community Ambassador in reply to ElizabethC]

Hi Elizabeth,

Ugh that sounds horrible and also way too familiar!! I too am used to them looking for the wheeze even when otherwise being ok. I have had some very good ones who don't but it's such a concern that I often mention it before they even listen, and have had to try and argue with very little breath. I hope you get some resolution soon and the steroids help.

Here are the BTS asthma quick reference guidelines. I can actually see where the confusion is because you have to read them carefully to notice a wheeze isn't required, and that's quite common - see p4 where it says 'more than one of...' - the whole way through it mentions wheeze but not as a necessary sign, yet I can see how it could be read that way (do a word search).

brit-thoracic.org.uk/docume...

Here's GINA - similar story:

ginasthma.org/download/520/

Basically it's less obvious than even I remembered - it will go on about wheeze and you have to read it carefully, but I would say they can still be used to support the fact that a wheeze is not required. I need to track down the one where it says the loudness of a wheeze is not related to severity of attack. I think they really need to be more obvious about how they present this as it is such a common thing to encounter and causes significant problems for quite a few people!

[ElizabethC in reply to Lysistrata]

Thank you. That will be very useful. I think being well prepared should help.

Back to surgery though nurse couldn't see me so was seen as first patient by Duty Doctor. Nurse wanted to ensure that a doc was around if I needed more steroids - which I did. So the conversation I was expecting didn't happen - postponed for now - but it will happen.

I am on more steroids - extending the length of days to 5 but lowering dose from 8 to 6 tablets each day.

In the meantime, I have the green light from my husband's work health insurance to find a consultant (referred from a doctor at Bupa who was *not* happy with the history I described of frequent severe chest infections etc). Just now trying to find one in the nearest private hospital to me who will listen to me and not assume its "x" or "y".

Just fed up with constant chest infections (4th one this year).

[Hidden]

it is about time asthma without a wheeze was given a label!

[katie-astrophe in reply to Hidden]

It really is! I didn’t recognise a major asthma attack a few months ago for 48hrs because I didn’t know it’s common not to wheeze