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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@yvonne55

Oh..P S. the only symptom I have left is when I lay down at night, I still have crackles on inhaling. 🙂

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My husband mentioned the other day that my "crackles" were so loud he could hear them when I was asleep. He raised the head of the bed so I was breathing easier. Mine come with allergy season - just more junk in my lungs and sinuses, I guess.
Sue

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@kudzu

Well, now you know why I’m going to Mayo.
I will say they did a ct with contrast, if that’s any help. As for testing o2 levels during the walk, I had a boss who used to say “there’s nothing common about common sense”🤪
I woke up with a cough and scratchy upper airways and running a low grade fever. This could have something to do with my lower than usual levels today, but not all the time.
I did an at home Covid test; it was negative.
I have an appt tomorrow with my pcp and I will talk to him.
BTW, my DLCO was normal on the test.

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Hello, This post is nearly a year old and I am wondering how you are doing? Please update how you are doing.

I have been having similar O2 saturation problems for over a year now. My O2 fluctuates from 99 to low 80's as well for no reason (had an overnight test which confirmed what I told the doctor about my O2 levels). I have had my lungs tested by a pulmonologist and they were "normal for my age" (69). I did have a few spots show up on a CT SCAN 3 years ago but a follow up CT SCAN showed they are not growing so pulmonologist is not concerned. I DO have moderate mitral valve prolapse and mild aortic valve prolapse, possibly caused by COVID 18 months ago (did not have problems that I know of before COVID, but I was not measuring my O2 levels before this time so who knows?). I do have a Cardiologist at Cedar's Sinai and have had a full battery of tests on my heart (TEE, ECHOS, Stress ECHO, Cardiac MRI, PET SCAN etc. My O2 drops happen during all events, even when just sitting still quietly. Most of the time my O2 is 94 or 95. Started having heart palpations about a month ago and wore a monitor for two weeks. Am waiting for results. Palpations are frequent... several times each hour. I do not feel faint or have any other physical symptoms. I just always feel like something heavy is sitting on my chest though. My blood pressure is anywhere from 100/60 to 120/80 when I am at the doctors office. No one seems to have a clue why my O2 fluctuates so much.

Take Care,

Sharon

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@sueinmn

My husband mentioned the other day that my "crackles" were so loud he could hear them when I was asleep. He raised the head of the bed so I was breathing easier. Mine come with allergy season - just more junk in my lungs and sinuses, I guess.
Sue

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Are you using nety pot for sinuses Sue ?

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@lenchiksf

Are you using nety pot for sinuses Sue ?

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Only if I have a cold or sinus infection, and then only for a few days, I use the NeilMed Sinus rinse bottle. Too much liquid, and for too long, irritates my sinuses and causes more mucus production. This was something I learned many years ago, when I had polyps removed from my sinuses & my septum put back in place.
I get better relief from daily use of Mucinex - and it thins the mucus in my lungs and seems to prevent fluid in my ears from thickening & causing infections.

Sue

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@shunt

Hello, This post is nearly a year old and I am wondering how you are doing? Please update how you are doing.

I have been having similar O2 saturation problems for over a year now. My O2 fluctuates from 99 to low 80's as well for no reason (had an overnight test which confirmed what I told the doctor about my O2 levels). I have had my lungs tested by a pulmonologist and they were "normal for my age" (69). I did have a few spots show up on a CT SCAN 3 years ago but a follow up CT SCAN showed they are not growing so pulmonologist is not concerned. I DO have moderate mitral valve prolapse and mild aortic valve prolapse, possibly caused by COVID 18 months ago (did not have problems that I know of before COVID, but I was not measuring my O2 levels before this time so who knows?). I do have a Cardiologist at Cedar's Sinai and have had a full battery of tests on my heart (TEE, ECHOS, Stress ECHO, Cardiac MRI, PET SCAN etc. My O2 drops happen during all events, even when just sitting still quietly. Most of the time my O2 is 94 or 95. Started having heart palpations about a month ago and wore a monitor for two weeks. Am waiting for results. Palpations are frequent... several times each hour. I do not feel faint or have any other physical symptoms. I just always feel like something heavy is sitting on my chest though. My blood pressure is anywhere from 100/60 to 120/80 when I am at the doctors office. No one seems to have a clue why my O2 fluctuates so much.

Take Care,

Sharon

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Sharon,
Mine o2 levels leveled off 3.5-4 months after covid. I had ground glass opacities both lower lobes with covid April 2022, have asthma at baseline, reactive airways and hx of fungal pna with lung nodule. I used o2 supplement for 3 months to get around and to sleep. My high resolution ct was clean at 3 months after 2 rounds of steroids and 2 rounds of abx. Mine was clearly covid related. I am happy to say i dont have any post covid sequela.
I hope this helps

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@sueinmn

Only if I have a cold or sinus infection, and then only for a few days, I use the NeilMed Sinus rinse bottle. Too much liquid, and for too long, irritates my sinuses and causes more mucus production. This was something I learned many years ago, when I had polyps removed from my sinuses & my septum put back in place.
I get better relief from daily use of Mucinex - and it thins the mucus in my lungs and seems to prevent fluid in my ears from thickening & causing infections.

Sue

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Very interesting. I just had appt with ENT post sinus infection and cat ct for sinuses. I told her when i use nety pot, more mucus come out. She tells me that i need to continue 2x per day sinuses rinse, until i feel i am back to baseline. I also use budesonide in rinse and then Azelastine 30 min after the wash

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@lenchiksf

Very interesting. I just had appt with ENT post sinus infection and cat ct for sinuses. I told her when i use nety pot, more mucus come out. She tells me that i need to continue 2x per day sinuses rinse, until i feel i am back to baseline. I also use budesonide in rinse and then Azelastine 30 min after the wash

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That tracks - only use as needed, my old ENT told me that many years ago, before NetiPots, when you used a big bulb syringe & a bottle of saline to irrigate sinuses.
I'm glad your Covid aftereffects have cleared. When the first rounds of Covid pneumonia with "ground glass" showed up, it was really scary, because docs thought it might be permanent damage. Success stories like yours assure us that our bodies can and do heal.
Sue

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@lenchiksf

Sharon,
Mine o2 levels leveled off 3.5-4 months after covid. I had ground glass opacities both lower lobes with covid April 2022, have asthma at baseline, reactive airways and hx of fungal pna with lung nodule. I used o2 supplement for 3 months to get around and to sleep. My high resolution ct was clean at 3 months after 2 rounds of steroids and 2 rounds of abx. Mine was clearly covid related. I am happy to say i dont have any post covid sequela.
I hope this helps

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Good to hear you are doing well! I continue to search for answers. Thank you for your response. (:

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@shunt I started having blood oxygen levels swing between mid 80’s and high 90’s last year. I was put on oxygen, and had a bronchoscopy. The test was normal. The pulmonologist and my cardiologist debated whether I was having heart failure. I was not.
After much “investigation” it turned out that the drug Methotrexate caused my lung problems. I took the Methotrexate for an autoimmune disease that I have.
You just never know…

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@SusanEllen66

@shunt I started having blood oxygen levels swing between mid 80’s and high 90’s last year. I was put on oxygen, and had a bronchoscopy. The test was normal. The pulmonologist and my cardiologist debated whether I was having heart failure. I was not.
After much “investigation” it turned out that the drug Methotrexate caused my lung problems. I took the Methotrexate for an autoimmune disease that I have.
You just never know…

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Thank you for sharing. I am not on any drugs but I do have heart issues, which I have been told by my cardiologist should not affect my 02 levels. I supplement 02 at night (my idea because I grew tired of waking up gasping for breath a few times a night and a sleep study confirmed I do not have sleep apnea, but that my 02 did plummet several times a night) because I happen to have an oxygen concentrator on hand (belonged to my brother who died from COVID). My doctors (pulmonologist and cardiologist) are not concerned because legally I don't qualify for 02 supplementation since my levels are not consistently at 88 or below; but it seems to me it THEY were ME, they would be concerned about wildly fluctuating 02 levels if it were happening to them. I honestly don't know what else to do. I'm tired of worrying about it and no one seems to give a damn. Thanks for sharing and I am glad you figured your situation out.

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