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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@pb50

Here is what I have (picture attached). I don’t know anything about how to interpret but I’m told they’re normal.

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Doesn't look like they measured it as it is not in the report. When I have a moment, I will post more about Pulmonary Function Tests. I finally found some info on how to read them

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@pb50

Here is what I have (picture attached). I don’t know anything about how to interpret but I’m told they’re normal.

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Here is something to start you off. These tests are hard to figure out. But one can focus just on the most important ones, and track against what the normal values are.
Pulmonary Function Test
PFT measures:
• Tidal volume (VT). This is the amount of air inhaled or exhaled during normal breathing.
• Minute volume (MV). This is the total amount of air exhaled per minute.
• Vital capacity (VC). This is the total volume of air that can be exhaled after inhaling as much as you can.
• Functional residual capacity (FRC). This is the amount of air left in lungs after exhaling normally.
• Residual volume. This is the amount of air left in the lungs after exhaling as much as you can.
• Total lung capacity. This is the total volume of the lungs when filled with as much air as possible.
• Forced vital capacity (FVC). This is the amount of air exhaled forcefully and quickly after inhaling as much as you can.
• Forced expiratory volume (FEV). This is the amount of air expired during the first, second, and third seconds of the FVC test.
• Forced expiratory flow (FEF). This is the average rate of flow during the middle half of the FVC test.
• Peak expiratory flow rate (PEFR). This is the fastest rate that you can force air out of your lungs.
Normal values for PFTs vary from person to person. The amount of air inhaled and exhaled in your test results are compared to the average for someone of the same age, height, sex, and race. Results are also compared to any of your previous test results. If you have abnormal PFT measurements or if your results have changed,

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@vic83

Doesn't look like they measured it as it is not in the report. When I have a moment, I will post more about Pulmonary Function Tests. I finally found some info on how to read them

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Awesome! I will happily be your student.

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@vic83

Here is something to start you off. These tests are hard to figure out. But one can focus just on the most important ones, and track against what the normal values are.
Pulmonary Function Test
PFT measures:
• Tidal volume (VT). This is the amount of air inhaled or exhaled during normal breathing.
• Minute volume (MV). This is the total amount of air exhaled per minute.
• Vital capacity (VC). This is the total volume of air that can be exhaled after inhaling as much as you can.
• Functional residual capacity (FRC). This is the amount of air left in lungs after exhaling normally.
• Residual volume. This is the amount of air left in the lungs after exhaling as much as you can.
• Total lung capacity. This is the total volume of the lungs when filled with as much air as possible.
• Forced vital capacity (FVC). This is the amount of air exhaled forcefully and quickly after inhaling as much as you can.
• Forced expiratory volume (FEV). This is the amount of air expired during the first, second, and third seconds of the FVC test.
• Forced expiratory flow (FEF). This is the average rate of flow during the middle half of the FVC test.
• Peak expiratory flow rate (PEFR). This is the fastest rate that you can force air out of your lungs.
Normal values for PFTs vary from person to person. The amount of air inhaled and exhaled in your test results are compared to the average for someone of the same age, height, sex, and race. Results are also compared to any of your previous test results. If you have abnormal PFT measurements or if your results have changed,

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Great insight - many thanks

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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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Hello,
YES! I have been having this problem for about two years now. I am 69 and have always been fairly healthy and always very active physically.

I had COVID that lasted for several months starting in January of 2022. I was hospitalized for three days (unbelievably, due to a telemedicine doctor telling me to drink lots of licorice root tea to help treat COVID for its medicinal qualities and it ended up depleting my potassium and I gained 10 pounds of fluid overnight), but while in the hospital it was discovered I had two prolapsed heart valves (and no, before COVID, I never had any heart issues). My mitral valve was "almost severe" and my aortic valve was "moderate." Nearly 8 months later follow up visits showed my valves had improved and the plan for repair surgery was cancelled. I see my cardiologist at Cedar's Sinai approximately every 6 months now and things are "stable."

However, during this time it was discovered I also have variable 02 rates which go from the mid 80's to normal (95+). This was initially discovered after a sleep study test because I kept waking up feeling out of breath, however, I was informed I do not have sleep apnea. Doctors have not been able to find the problem and truly don't seem concerned at all because my "levels are not consistently at 88 or below." Sorry, but I AM concerned because this is NOT NORMAL! After a 5 hour airplane ride this last summer, where out of curiosity I monitored my 02 rates during the entire trip, my 02 remained consistent at 86.

My cardiologist told me this is not related to my heart valve issues. I also saw a pulmonologist in 2022 and had a lung test, CAT scan (I do have a small spot on my lung that is not changing), and my GP has "no idea" what could be causing my problem. I have also been diagnosed with 3 autoimmune diseases in the last 2 years: small fiber neuropathy, Vitiligo, and Lichen Sclerosis.

I sleep with 02 support at night (1 to 2 liters) to avoid waking up gasping for breath and to help me sleep better knowing my 02 levels are adequate. However, for the most part, during the day, I can not tell when my 02 levels are low.

NO ONE has been able to tell me WHY my 02 levels are so erratic. It is frightening for me and I want to figure out WHY this is happening.

Your post is over a year old... have you been able to find out anything more? I hope you are doing well.

Sincerely,

Sharon Hunt

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@vic83

Thanks for your reply. Are you on oxygen? I have been working on understanding my Pulmonary function tests. My DLCO was 55% in April and 52% in December after my 6 weeks on Prednisone for pneumonitis. Mayo is treating my lung cancer, and heart issues, working on determining etiology as that impacts my lung cancer treatments.
I found following on Internet to be able to judge my values:
• Normal DLCO: Between 75% and 140% of the predicted value.
• Mildly reduced DLCO: 60% to 75% or the lower limit of normal (LLN) predicted value.
• Severely reduced DLCO: Less than 40% of the predicted value.

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Yes, I am on oxygen but I use it at night and sometimes when my oxygen levels drop below 88 during the day. My doctor says that an oximeter is of value because it does show how much oxygen is going into my lungs, even though my lungs are not absorbing it all, so that when I do oxygen, perhaps a little more is utilized. I still don't really understand it. Visits are short, he answers my questions which at the time seem to make some sense but then when I get home and think about them, I still feel confused about it. It's always a matter of "why didn't I ask him this or that question"! For my condition, it is best to keep my oxygen levels between 88-92, as I guess my body is okay with that and there is no damage to other organs in that range. However, that is tricky to do in itself. That is not to say that 94- or so is necessarily bad, but I guess if it's too high, then there could be C02 buildup! Perhaps, someday I'll understand it better but I sometimes feel that the medical profession has no concrete answers to this problem! Still, I'm feeling well enough at present, although I take it easy and rest between chores etc. If I am doing anything more strenuous, which I try to avoid, I do use oxygen while doing so. Usually, just sitting down brings it back to a more normal range and I don't need to do oxygen. I hope this is not too confusing for you, but I can only suggest that you ask your doctor these questions and see what he has to say!

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@gdanker

Yes, I am on oxygen but I use it at night and sometimes when my oxygen levels drop below 88 during the day. My doctor says that an oximeter is of value because it does show how much oxygen is going into my lungs, even though my lungs are not absorbing it all, so that when I do oxygen, perhaps a little more is utilized. I still don't really understand it. Visits are short, he answers my questions which at the time seem to make some sense but then when I get home and think about them, I still feel confused about it. It's always a matter of "why didn't I ask him this or that question"! For my condition, it is best to keep my oxygen levels between 88-92, as I guess my body is okay with that and there is no damage to other organs in that range. However, that is tricky to do in itself. That is not to say that 94- or so is necessarily bad, but I guess if it's too high, then there could be C02 buildup! Perhaps, someday I'll understand it better but I sometimes feel that the medical profession has no concrete answers to this problem! Still, I'm feeling well enough at present, although I take it easy and rest between chores etc. If I am doing anything more strenuous, which I try to avoid, I do use oxygen while doing so. Usually, just sitting down brings it back to a more normal range and I don't need to do oxygen. I hope this is not too confusing for you, but I can only suggest that you ask your doctor these questions and see what he has to say!

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Your situation sounds familiar to me.
Sitting on the sofa my oxygen level is 95 and higher - which is normal for an older person.
But add exertion and it drops. On the treadmill at a moderate walk, I will be 88-90 and be fine.
But exertion with a little stress and I am really without breath and my oxygen goes even lower than 88. Last weekend I wanted a Covid test and went to Urgent Care. A 3-minute walk and I arrived out of breath and with Oxygen at 86 and they got all excited and insisted on triaging me-EKG, blood test, medical doctor. I had to stay there some 2+hours. I have lung cancer and other lung/heart issues. They can do nothing for me. I am waiting for my doctors to connect the dots.

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It's all so senseless to me when they do all that! If we went to the E.R. every time our oxygen dropped below 88, we might as well camp out there full time! Especially when we know that if we just sit and rest for a few minutes it will come back up! That's my experience anyway! Yesterday, I was doing some cleaning around the house, doing some carrying and lifting and I kept it up for a good 15 minutes of somewhat strenuous activity, for me, anyway, I started feeling a bit weak and realized that I probably better check my oximeter reading and it was at 84, so I sat down and rested, and within a minute or so it went back up again to about 90! I also have other health problems, which include asbestosis. I have no idea how or when I was exposed to asbestos! Yet for a 79-year-old woman, with my health problems, I do pretty good! So do you, actually, so keep up the good work. Just rest and take it easy inbetween your activities!

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@gdanker

It's all so senseless to me when they do all that! If we went to the E.R. every time our oxygen dropped below 88, we might as well camp out there full time! Especially when we know that if we just sit and rest for a few minutes it will come back up! That's my experience anyway! Yesterday, I was doing some cleaning around the house, doing some carrying and lifting and I kept it up for a good 15 minutes of somewhat strenuous activity, for me, anyway, I started feeling a bit weak and realized that I probably better check my oximeter reading and it was at 84, so I sat down and rested, and within a minute or so it went back up again to about 90! I also have other health problems, which include asbestosis. I have no idea how or when I was exposed to asbestos! Yet for a 79-year-old woman, with my health problems, I do pretty good! So do you, actually, so keep up the good work. Just rest and take it easy inbetween your activities!

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Would you believe that in two years I have had this experience 3 times? The Urgent Care is combined with an ER so they classify me as ER and start triage. My clinic doesn't have a place reserved for COVID testing and they want to screen you first. My PCP just has me come in his office but on the weekend, I have no choice. And because of our lung conditions we need to know as soon as possible if we have Covid so we can start the antiviral. Home tests are convenient, but negatives are not reliable, and they pick up the virus days later that a molecular test.
I realize UC/ER staff are trained to follow certain procedure and they have a legal issue to deal with, but they are not helping me. And my insurance pays, but I wonder if someone who has an Advantage plan may have out of pocket costs for going to any Urgent Care/ER.

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@vic83

Would you believe that in two years I have had this experience 3 times? The Urgent Care is combined with an ER so they classify me as ER and start triage. My clinic doesn't have a place reserved for COVID testing and they want to screen you first. My PCP just has me come in his office but on the weekend, I have no choice. And because of our lung conditions we need to know as soon as possible if we have Covid so we can start the antiviral. Home tests are convenient, but negatives are not reliable, and they pick up the virus days later that a molecular test.
I realize UC/ER staff are trained to follow certain procedure and they have a legal issue to deal with, but they are not helping me. And my insurance pays, but I wonder if someone who has an Advantage plan may have out of pocket costs for going to any Urgent Care/ER.

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Yes, I think you are right as to it being more of a legal procedure. If, say, they skipped doing all the tests and diagnostics, and a person became seriously ill because they'd overlooked something, then they would, no doubt, be held liable. Still, I agree, that from our point of view, it's a time-consuming nuisance.
Still, I am, as a lower income person, fortunate with my insurance. As to how it would affect those on an Advantage plan, with out of pocket costs, I really don't know. I'm just glad that I'm covered! Glad to hear, that you are also!

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