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Confusion

Happy-51 profile image
15 Replies

Hello

With ongoing tests to determine what’s going on I just wanted to ask you guys some questions.

Whenever the doctors listen to my chest I’ve usually been sitting around waiting for ages and any wheeze has gone so I don’t feel the seeing the whole picture. As long as I sit still I’m fine.

If I’m being told my chests fine why am I wheezing upon slight exercise?

Why can’t I walk as far?

My peak flow has gone from 350 to 270.

Heart rate is still high.

Bp mostly normals

Sats go down to 93 when I’m walking, as soon as I stop there go back up to 95-96.

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Happy-51 profile image
Happy-51
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15 Replies
hypercat54 profile image
hypercat54

Your sats at 93 are fine. It's only when they regularly go below the late 80's and stay there for a while that there could be a problem.

I can't really help with the asthma question as although I do have it I am mild and have never had any real problems with it. x

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to hypercat54

Admittedly not a dr but not so sure about that re sats in asthma. 93 is fine for COPD but 92 or below is counted as worrying in asthma (off the top.of my head that would be one feature of a severe asthma attack in several guidelines), so not sure 93 is great for an asthmatic, and many asthmatics can be higher and struggling a lot, especially if younger. Perhaps a medic can confirm but I believe that thinking anything 90s or even high 80s is fine is very much a COPD thing. With asthma I think they prefer it to be higher.

With the dropping even a bit on exercise it does sound like something is up Happy 51 - I remember a nurse being unhappy with me constantly going from 98 to 94 and back during an attack because I was still desaturating even if not to an alarming level. Heart rate may also be high to compensate for lungs- I can have good sats and a very high heart rate to keep them that way.

I also don't wheeze pretty much ever so I get your frustration there! But PF dropping, low exercise tolerance, the sats dropping does sound like somethitn is up - do the drs know all this? Can you keep a record and show them? Including how your sats drop.

hypercat54 profile image
hypercat54 in reply to Lysistrata

Fair enough. I have copd and asthma and according to the respiratory nurse they are only concerned with and only treat the main disease which she said was copd. I have stopped smoking but when I was and my sats were often around 89-93 no one showed any concern at all. x

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to hypercat54

Makes sense if COPD is your main problem. I sometimes think some doctors treat asthma like COPD even with people who don't have COPD too (eg assuming sats can be fine at lower levels, forgetting that asthma is variable and assuming spirometry will always show the problem) which is more of an issue in someone whose main/only issue is asthma.

MaggieHP profile image
MaggieHP in reply to Lysistrata

I’ve certainly been told in the past by my GP that if my oxygen sats drop to 95 I would be sent straight to A&E. On the occasion she said this they were at 96 and I was in a bad way (mind you, that might have had something to do with the fact that I also had a very nasty infection which really wasn’t helping matters).

Happy-51 profile image
Happy-51 in reply to MaggieHP

My sats usually are around 94- 95 but recently lower when walking even slowly. 92 yesterday but after a few minutes of sitting still and deep breathing they recovered.

MaggieHP profile image
MaggieHP in reply to Happy-51

It’s interesting how things differ. Mind you, this was nearly ten years ago, so advice may have changed. And of course, there were other issues: rocketing temperature at 10am, find talking hard, peak flow dropping (though it was nowhere near its all time low of 150 nearly thirty years ago when I had a normal reading of around 425). She was not happy about the state I was in. The one thing that baffled her was that my chest was, apparently, clear. It didn’t stop her from putting me on a hefty dose of antibiotics and oral steroids. It did the trick. Forty eight hours later I was experiencing that calm after the storm feeling: no energy, weak as a kitten, but able to breathe.

Wheezer2018 profile image
Wheezer2018

Write an asthma journal and bring it to the gp - do not settle for its ok - it’s not ok

Happy-51 profile image
Happy-51

I find if my sats go below 92 I’m usually in a pretty bad way. My doctor last week was concerned with 94 so I think if I told her I had sats of 80’s she would be alarmed lol.

It’s all really frustrating as I have so many symptoms since this whole thing started.

Bear with me so I can give some background info.

I came back from Vietnam in August and was really unwell for weeks but all my tests came back clear. And have just felt unwell since.

Then I had two chest infections and 2 large doses of steroids.

Heart rate has been high since. Sat here with a resting heart rate of 129.

Had ecg, echo cardiogram , blood tests and get all those results tomorrow.

Now onto my brittle asthma, seen in his letter to my cardiologist that’s he blaming anxiety and asthma meds for my heart rate.

Now I’ve had severe asthma since I was one, I’ve kept myself out of hospital for 20 years by managing my asthma .. and maybe being stubborn but it worked.

Since my heart rate has been high I’m struggling with everything.

I wheeze after a few mins of walking and have never been this way before when well.

All the tests he did he said were fine and today I’m having CT scan to get my airways.

I guess I’m confused how all this can just go wrong.

I’ve barely eaten for 9 days and not lost a single lb, steroids just seem to screw my body over yet keep me alive.

Sorry I’m not sure any of that makes sense and writing on my phone at the hospital.

I’m so utterly frustrated.

If your peak flow is normally 350 and it is now 270 that should be enough for your GP to realise something is not right whether you wheeze or not.

Happy-51 profile image
Happy-51

Well it has gone up to 320 this morning, but like my heart rate seems to be all over the place.

Superzob profile image
Superzob

It can be very frustrating and worrying waiting for results but, if they're due tomorrow, it might just be best to wait and see.

Happy-51 profile image
Happy-51 in reply to Superzob

No I’m seeing cardiologist tomorrow, ct results not until 26th

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

My heart rate goes nuts when asthma misbehaves and has done so even when I didn't have asthma meds (when they were faffing with diagnosis). I got the anxiety line too but it didn't even begin to explain all the other symptoms and especially not why it would shoot up with the smallest exertion. I still get that in asthma attacks and they still blame the meds even though coughing and moving drive it up.

Happy-51 profile image
Happy-51 in reply to Lysistrata

That’s the frustrating thing, I’m not paranoid etc.

We all know how bad living with asthma is .. brittle asthma more so. So it’s not that we are just being precious.

Like I’m feeling bad, my energy is gone.

Well all I can do is rule one thing out at a time.

Heart doctor tomorrow, asthma specialist on 26th for ct scan results.

Then go from there.

I’m certainly having a good mot

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