Wildly fluctuating o2 levels

Posted by kudzu @kudzu, Jul 16, 2022

I’m experiencing wildly fluctuating o2 levels on finger oximeter. This morning already I’ve been everywhere from 71 to 99, especially while standing still.
I went to the ER June 3 with this and they couldn’t find anything. My pft of June 3 indicated restrictive lung disease. May or may not be due to Amiodarone.
I’m going to Mayo July 27 to see a pulmonologist.
Very scary and depressing.
I know if I go back to the ER they probably won’t find anything, and I read in my medical records that my pcp has diagnosed hypochondriasis(not the case, this is really happening).
Anyone else have this?

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I suffer from asthma and have a severe scoliosis that inhabits my rib motion and also decreases my lung capacity. The adult onset asthma was easily brought under control years ago with budesonide and until recently (maybe 2 years ago)I didn’t even need the inhaler. Things have changed (post COVID) and now I too have wildly fluctuating o2 levels. I am 59. Sometimes at night they drop into the low 70’s. If I sit up and breathe deeply it returns to around 90. I will see a specialist in a month. Meanwhile I commiserate!

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@kudzu

Thanks for the reply, Sue.
No, I was not blue and if I hadn’t checked it I would not have known other than maybe slight shortness of breath or lightheaded ness. I’ve seen readings like that before on a different meter. I think it’s me. Another possibility is that they suspect I have Reynaud’s and the circulation to my fingers was not good. I have seen my palms and the soles of my feet turn blue intermittently(they were cold). Oddly, at that time the readings were normal if I recall right. If I start moving around the cyanosis goes away.
No, such readings have not been noted in the doctor’s office. It’s usually high 90’s in there.
If I hadn’t gotten pictures on my phone I don’t think they would have believed me. I have a series of pictures taken in a span of 60-90 seconds that go from 75-98. I was standing and talking on the phone during the whole thing.
I wonder if this is postural, something like pots or orthostatic hypotension. I do have lowish blood pressure that fluctuates quite a bit.
I also notice low readings in the car after I’ve been sitting still though not that low-maybe 91. Although I was sitting very still in the car looking at a map and caught a reading of 77 back in March. Didn’t last long. Shallow breathing?
I’m also looking at when it happens. Right now I’m taking a close look to see if it correlates with exertion at all. I’m a gym rat and if it’s happening, it’s either intermittent or I’m just not catching it. I’ve checked the oximeter while on treadmill and stepclimber and it stays high 90’s except for occasional dips into high 80’s that are transient.
It’s very wierd. I’ve had it dip into the mid 80’s walking around a parking lot, felt nothing, and kept walking. Took a few minutes but came back up to high 90’s and stayed there.
The really odd thing is that it doesn’t seem to last long.
Sorry this is so long, but it’s a wierd thing that’s mysterious.
Can’t wait to get to Mayo. If anybody can nail it, they can.

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Sitting still, laying down, I have a very similar problem!

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I’m also experiencing odd o2 readings. I go from 97 one time down to 80, and then back up to an average of 93. Usually the readings stay between 93 and 88%

My lungs are clear according to a chest X-ray, so I’m going to make an appointment with a pulmonologist soon.

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Same here. I've been to specialist after specialist. Mayo couldn't find anything wrong. I recently was diagnosed with lymes disease and 5 co infections one of them being babesia that causes air hunger joint pain fatigue brain fog amd the list go's on. Mayo called it fibromyalgia which was a false diagnosis.

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@kudzu

Update on the fluctuating o2 levels.
I’m mostly recovered from Covid but the effects hung around for awhile.
I’ve started checking my o2 levels again and have gotten a few scares-in low to mid 80’s. It doesn’t stay there, but now I’m able to connect it with physical symptoms like shortness of breath or nausea.
I wish I’d had the oximeter with me at the dog park yesterday when I felt that suffocating feeling I’m so familiar with, plus sweating and visual changes. Yes, part of it may have been anxiety but I wish I knew. I was strong walking and able to walk around with the dog, so it’s a mystery.
Add to the stress the fact that I’m scheduled for my MAYO appt with
pulmonologist on Tues. I’m wondering if it’s ok to fly, as o2 levels in everyone drop in flight. I asked my pulmonologist here and he said he couldn’t answer that without a sleep study to see how low I go at night(been having some desat issues at night even with Cpap). However, they haven’t been able to get me in this week.
I did do the six minute walk test the correct way with this pulmo and it came out well.
So it’s up to me. I’ve made a personal decision not to use supplemental oxygen, so that’s not an option. I don’t want to get dependent on it. I watched my mom go down that road and it is like an addiction.
I know this forum is not for medical advice and I’m not seeking that. I just wondered if anyone has been in a similar situation.
Sorry this is so long but I needed to vent. I’m stuck between taking the risk(which may not be that great; I’ve probably flown with this before and not even known it) to get to some of the best doctors in the world who probably can figure this out and playing it safe, putting off the appt again and waiting for the sleep study. 😟

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I went to mayo thinking they would help and they did nothing for my air hunger. I've been suffering for 2 years and most days sit on my cpap machine so I can breathe better.

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@SusanEllen66

I’m also experiencing odd o2 readings. I go from 97 one time down to 80, and then back up to an average of 93. Usually the readings stay between 93 and 88%

My lungs are clear according to a chest X-ray, so I’m going to make an appointment with a pulmonologist soon.

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I see a pulmonologist tomorrow. I will keep you posted. Update. I am using an o2 condenser set at 1.5 when I sleep. It seems to be helping. Sleep is better and. Asthma meds are more effective.

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@micnic

I see a pulmonologist tomorrow. I will keep you posted. Update. I am using an o2 condenser set at 1.5 when I sleep. It seems to be helping. Sleep is better and. Asthma meds are more effective.

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Wondering how your appointment went?

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Hi there!
He was generous, with a kind personality that made me feel comfortable and heard. I am not great at staying focused and clear when I try to describe my health situation. He read through my nervousness and was able to glean useful information. He was very clear when describing the differences between asthma, restrictive and obstructive lung disease. Has any doctor diagnosed you with any of these?
the scoliosis is causing the restrictions, not obstructive, and the asthma has gotten more under control taking 1 puff Pulmicort and 1 puff generic Symbicort. 2x daily. he was perplexed but since it was working he approved and did not try to change it. I will go in for another pulmonary study and I got my allergy tests back. SO my O2 levels still drop below 90 sometimes all the way to 84 but now mostly in the evening or after a larger meal. or exertion... Now that my asthma is more under control I can start to deal with the restrictions. The BIG deal is I am on O2 from a concentrator at night. My PC ordered 4L. but I self medicated 1.5L and was so happy that I was finally sleeping better and felt it was helping with my quality of life in a big way. He questioned my reasoning and we agreed on 2L. Here is that whacky part. 2L and I woke with an O2 of 90, with a headache, so I reduced it back to 1.5. Energy and O2 at 94-96 consistently! I will remain here for a couple of weeks. so far so good. waking with good energy and good readings. We are not out of the woods yet as I still fluctuate with vigorous action, even if it is brief, or if I am very still and reading or concentrating on something. My breathing is improving with my excersizes and a lot of focus, so I don't stay down for long! I also don't really trust the first reading I try again on another finger and wait a few seconds in between. I hope this helps in someway..... sorry I am so verbose. As for your air hunger are you on O2 as well?
breathing,
Michelle

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@nmac

Did you ever receive a diagnosis? I have been dealing with the same thing for over a year now. I did an overnight sleep study and was diagnosed with nocturnal hypoxemia....I was at 88 for about an hour. They put me on supplemental oxygen for sleep and it seems to be helping, but I do still get dips in my o2 levels in my sleep....sometimes as low as mid 70's. I did a pulmonary function test and it was normal, but when I walked a few laps in the office with my dr and had the o2 reader on finger he could see that I would have sudden random drops...as low as 93 and he wasn't expecting to see that. I get that same feeling of my chest having this kind of sqeezing feeling or heaviness and then lightheaded. The lightheadedness is what lets me know that its happening. My gut feeling is that it is neuromuscular or something with my nervous system. Its like something is short circuiting. I saw cardiologist and my heart was fine, but I do get mild arrhythmias and have bradycardia. I would just like to be able to help guide the doctors to the right tests I guess. It is the weirdest thing and does not make sense to any of the doctors. They thought for sure I had obstructive sleep apnea, but I "shocked" them.

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My name is Sandy. I'm currently dealing with the same issues. The Doctor issued chest xrays, breathing test and sleep test. She said the sleep test, not only shows sleep ap, but also if your brain is not singling to breathe. Especially since it's happening during the day.
I found this interesting.
Hopefully I can find my way back with any updates. Thanks

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@the1downs

My name is Sandy. I'm currently dealing with the same issues. The Doctor issued chest xrays, breathing test and sleep test. She said the sleep test, not only shows sleep ap, but also if your brain is not singling to breathe. Especially since it's happening during the day.
I found this interesting.
Hopefully I can find my way back with any updates. Thanks

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I am currently waiting for results from a genetic mitochondrial disease that runs in my family. I was diagnosed with POTS, but after doing POTS protocol for a month they determined it's not true POTS, but POTS like symptoms. I have been fully worked up by Pulmonary and did the Pulmonary exercise test...I passed, but barely, but I passed, so they said it's not Pulmonary. With all of the different symptoms I have...they think it's mitochondrial or stemming from my nervous system not functioning properly. I still have more testing to do like a muscle biopsy if the genetic test is negative. Not giving up. (I do NOT have sleep apnea. I'm on oxygen for nocturnal hypoxemia without apnea. Hope this helps.

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