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when ive had tests done when my breathing is playing up im often told that my oxygen levels are ok - often between 95 -99%. the only time they drop low is when ive got a chest infection. been told that this is normal for asthmatics----so why do some medical staff say it like i cant be feeling ill if its not low before they check my chest and hear im rattling like a baby toy? wish this was common knowledge as i get sick of having to say this when i can hardly speak. is this just me?

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likewise jay,

my sats mostly stay 95-99 until i crash and resp/cardiac arrest or do something weird, or got inf. i too am sick of trying to explain to them this is normal for me!! grrr...

also during admissions when i get tight and SOB asking for neb and they say to reassure u by saying - oh well ur sats are fine - arrgghh!! they almost always are!! read my notes...

i was told the other night that its a myth that asthmatics drop their sats as NOT ALL of us do...

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This is interesting - not that I have severe attacks like you guys but I get the impression that doctors treat it as an absolute gold standard measure and seems it may not be. At my first cons appt I had to walk up and down the corridor a few times to see if my sats dropped (didn't do it all, think cons thought it would take me rather less time than it did! 98% to 97% so not really significant). It may have been taken along with everything else to be fair, but got the impression that did contribute to cons saying 'well your lungs are working fine' - aggh no they aren't! So interesting to hear it doesn't have to drop even when things are much worse.

Sorry for bit of a rant there, frustration leaking out but know it could be much worse.

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I know with Snowy hers always remain at a high level even during a mild attack, its only when shes REALLY bad that they plumet, like now, at around the 70% mark, but if shes having a serious attack they can remain in the high 90's and then fall lile a stone to 60 within seconds, I try telling them everytime but the hardly ever listen, only her GP does as shes seen it happen in front of her.

Alex

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Yep. Same here. Mine stay around 96 ish when having a bad attack. The problem is that although my oxygen levels are ok my Carbon Dioxide level rise very quickly. They are usually reassured when the attach the SATS probe, only to dissolve into complete panic when they do a blood gas and realize that I am not quite as well as I look ! It happens every time !!! It's always my Carbon Dioxide that puts me into HDU or ICU. It's never because of my Oxygen levels.

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likewise looby - sats are fine - blood gas shows diff levels oxygen and carbon dioxide levels - then they panic lol...

but on other hand, with me, they normally start the panicking based on other symptoms rather than sats as they know now bout me maintaining high sats..

x

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i am the same drs discharge me because of my stats

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Me too - mine go down to about 92 or 93 and then in the final moments drop really fast. With a chest infection they drop much quicker.

And yes also the same when they do blood gasses and then start rushing at me with IV mag sulph etc etc

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I wish they'd make more in medical teaching of the fact that there is variance. Of course some doctors are good and know this but often even with the ones you'd think are experienced and should know things don't always present the same way you can SEE their thought processes (at least with me) - PF higher than predicted, sats fine, chest clear, still can't breathe properly - 'well, you seem to be fine, are you anxious about anything'? (though when I put it like that I do sound like a hypochondriac!)

Not easy I guess without objective markers to go on (that's more in my case I guess as you guys have the ABG to show what's going on), but it does seem sometimes they are a little set on the 'normal' even when they have people repeatedly telling them that someone doesn't follow the 'normal' pattern - and in an acute situation that really doesn't seem very safe.

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Same here too - they appear okay for a while then drop significantly - often it's only after the blood gases that they know there's an issue and I get wheeled into resus. It's such a relief when I get a doc who knows me or actually reads my notes and treats me as an individual not as the books say I should be.

[yaf_user681_8101]

My sats are 99% unless I'm really struggling. I've never had blood gases done so don't know about that. I had a few problems last weekend, Fri sats were at 99%. The OOH doctor complimented me on maintaining them so well; gave me smarties. I had a downturn later in the weekend and my sats were 98%. OOH doctor wondered if it was anxiety (wasn't wheezing but very breathless). Told me I was fine. I wasn't!

The only exception to this seems to be if I get an infection where they fall, last time this happened I felt tons better than I did at 98% last weekend.

I think they should throw out the sats monitors!

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If they're going to throw out the sats monitors, can we also have a super-injunction on misuse of 'anxiety'? I wish there were some kind of test I could take to get a certificate saying 'NOT ANXIOUS'. When I was at uni my friend studying psychology gave me a sanity certificate but don't think that would be good enough lol

There is I believe one you can take to show whether you're regularly hyperventilating - am sure someone on here mentioned that - it seems even people on here who can get quite bad have been told they're hyperventilating instead of having an attack so again a piece of paper I'm sure would be handy! (And if there is such a test I want to know why my previous cons who 'diagnosed' me with hyperventilation didn't send me for it?)

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well...sounds like we all have the same sort of experiences...I do sometimes hold my sats high around 97% during an attack, and then drop them down to high 80's. That tends to get doctors running. However my last A and E experience when I walked in and had my sats checked they were only 82% I felt okayish not as bad as I have done with higher sats...but the sats of 82% triggered a MET call which is a medical emergency call...it gets everyone running. I don't think I was that bad...I got medicated very quickly and moved to HDU. On other occasions I have been made to wait until almost too late and need intervention because sats became low...seems weird that a little finger probe can affect how we are treated.

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Mine are always 97-99% and I get the same response, especially as peakflow stays high as well. Symptoms with those results have ranged from sore ribs and a bit sob to dizzy, hardly being able to walk and not being able to complete sentences or count to 20 so they clearly aren't a good indicator of how bad things are.

Although when OOH doctor made me walk round the waiting room they did drop to 93% before gradually coming back up again!

[yaf_user681_8101]

Maybe we should have a medical professional advice thread? So far we have:

- Throw out sats monitors

- Assume we're all sane (until proven otherwise)

Actually, I might not do too well on the second one. I do have the odd panic attack but it feels very different to the asthma. For a start I can breathe in and out without any difficulty. If the asthmas playing up that isn't usually the case!

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More advice:

1. Listen to us (please be patient though as we're struggling!) We probably do actually know more about this than you - after all, we live with this condition every day of our lives.

2. Don't treat the book - treat the symptoms of the person in front of you!

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And don't rely too much on one indicator when others or the big picture may be more useful!

What really gets me about the 'panic disorder/anxiety/hyperventilation' thing is that I've read it's generally a diagnosis of exclusion ie if they don't think it's anything else then it *must* be that - but there seem to be a lot of instances when doctors have jumped straight to it even with known asthmatics! I'm not saying it can't co-exist like with you TS but surely if someone is an asthmatic and they're having trouble breathing there is a really really obvious explanation which you ought to start with, especially since if it is an attack you need to treat asap.

I've also found (and maybe this is just me) that with the panic/overbreathing thing, because it's what they say usually when they can't think of anything else it could be, anything which calls it into question (such as me saying 'no, I don't feel anxious, and I get this breathing problem even when I'm happy and thinking about chocolate) tends to be brushed aside.

Oops, more ranting. Think a thread with 'what we'd like to tell them' could be good - any chance we could get them on here to see it?

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ha ha ! making me laugh ! I had one junior dr in A&E say to me (before my blood gases had been done)

""Try to slow your breathing down if you can !""

The look he received back from me said a thousand words !

""You try breathing through lungs like mine and see how well you do at slowing your ******* breathing down ! ""

If I'm breathing fast it's coz I need to in order to stay alive ! Sorry about that !

I was then moved to HDU when he realised I was quite sick !

[yaf_user681_8101]

Its a bit sad that everything sounds so familiar. Why do they have to say ""take big, deep breaths""? If I could I wouldn't be bothering them!

Philomela, its rare but I have had the two together. Usually the panic stuff will kick off the asthma though so one follows the other.

Maybe someone should start a thread ""Medical Profession Advice Line"", we can copy all the replies in there then if one happens to stop by they might open it? lol

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hehe TS, yes it might be good for them to read some of the stuff on here, could open their eyes a bit (NB this is of course not aimed at any forum members who happen to be medical professionals as well like Snowygirl, but then of course you would never come up with any of the stuff the annoying ones say!)

What amuses me is having been sent to physio to be 'taught' how to breathe ie from the diaphragm, through the nose etc, not too deep - mostly stuff I have spent years being told to do by singing and oboe teachers - when drs want to listen to your chest they mostly tell you (in my experience anyway) to do some really quite contorted breathing like 'take some deep breaths through your mouth' - often find it quite difficult to give them what they want without doing some really funny breathing, esp as I don't breathe naturally through my mouth and this is when I realise I don't. (The honourable exception to this was resp physio who used it as an opportunity for me to practise the breathing exercises she'd just shown me - unfortunately every time I took a deep breath I started coughing so still wasn't the easiest thing ever.)