Wildly fluctuating O2 levels

Posted by Phoenix @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 have this too! Only recently diagnosed with a PFO. Surgeon doesn’t believe that is the reason .

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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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Someone mentioned these are our people! I agree! I have the same issues. I requested o2 to protect my other organs at least while I sleep. That helps for nocturnal hypoxia. My daytime drops are Willy nilly like others in these posts. I purchased the O2 ring to prove it! The pulmonologist doesn’t believe the walk of shame with me and all is fine! I do have reynauds but my galaxy watch says the O2 is even worse. I’m getting older so even though I might have had this all my life it’s getting worse. I was tested and they found that I have a PFO . That’s a right to left heart shunt. I was referred to a heart surgeon who the then told me he didn’t think that was the reason. Chech in with him in 6 months. They usually don’t fix this unless you have had a stroke or heart attack. Really!!!!?????

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@nmac

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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Please read my previous posts. I also don’t have sleep apnea. I can’t wait for AI to read all these posts and come up with potential solutions. Although everyone is different, how can we all experience the same thing without something in common? Has everyone on this thread had the bubble test ? That showed my PFO. Local drs suggested Long Covid symptoms. I never tested positive for Covid., but apparently that doesn’t mean that I didn’t have it.

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@bella6001

Have been going through exact same thing for 2 yrs and endless test to reveal nothing . Now have me scheduled for the holster test but again last year had the heart scan and lungs scanned and nothing showed . I have a continuous oxygen monitor not only is my oxygen going up and down sometimes for up to 3-4 mins then shoots up instantly . Never had covid or at least no test ever showed covid . No overweight , ear healthy . I do eat sugars but nothing to cause the onset on this out of the blue . All my issue Assyria four month after second covid vaccine . Not saying there is a link but the timing is impeccable . I even have gone as far as to worry it might be microplastics . However getting a doctor to listen when they see a ten second snapshot in the office is sad . Even with all my records of my recording barely made a difference . Been to cardiologist, pulmonologist (no cops) lungs clear . Heart clears no calcified arteries . Even been to endocrinologist, thyroid issues started after vaccine but it’s been in check since seeing Endo however issues with oxygen and heart remain . Seen rheumologist to rule out auto immune such as gravis to lupus . I am at my wits end and feel like just giving up . Walking to my mailbox now causing high heart rate and oxygen drops . I have become dependent on family members to function daily . How did I get here ? I was very active , healthy and outgoing and then this started . It has robbed me of any normal life and left me with no help . Getting genome 🧬 fully scanned which cost a small fortune in hopes on more answers .

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I wonder if the Covid vaccine has anything to do with this!

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@drwass3

I have same problem.
get a gadget called the O2ring. google it.
It fits on finger like a ring so it stays on, even while sleeping.
It records the O2 reading every 4 seconds and can keep 4 10 hour sessions in memory. It also displays real time on your phone. can save data to phone and you can plug it USB to computer and download data and display it in various forms. Very well worth the money, since doctors only get a small snapshoot of information when in the office.
Can be, positional, when lying down, which doesn't happen in office.
My O2 was always weird and eventually would eventually get to 97 and docs say ok.
Ring showed my O2 fluctuates up and down 10 points every 40-50 seconds.
While sleeping it can go to 72 and sometimes stays low 80's for a few minutes. Still working with sleep study people to figure out what is really happening. I'm fighting with them on calling it Obstructive Sleep Apnea because I could be resting, lying down, and breathing at normal 15-20 breaths a minute and watch the O2 go from 97 to 87 within about 30 seconds and back up to 97 the next 20 seconds. Like clock work, all night long. When up and about it looks kind of normal slowly variying high 90's
I have appointment with 2nd sleep study doctor next week, Feb 2024.
Hope I can get better information.

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These posts are truly an autobiography. I agree Drs see a snapshot in time. The O2 ring shows all of the time you wear it.

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@sadiecat

My pulmonologist told me that was normal after I asked him after having done a home sleep study. That being said I live at high altitude which may not be your case.

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I had all my tests done in Colorado aka high altitude. We went to Key West Florida and I had the same results. Altitude was not the reason for me. I suggest taking a vacation to the beach and see if you have the same symptoms and results.

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@drwass3

I purchased a RING O2 which fits on your finger like a ring and can stay on at night while sleeping. it can record 4 ten hour sessions and take a blood Ox reading every 4 seconds.
It will then download the data via blue tooth to your phone and you can also download the data into a computer.
As I relax and begin to fall asleep, the blood Ox leverls varies about 8-10 points at almost a 1 minute interval. It may vary from 96 to 88 back and forth every 50 seconds. Sometimes dropping to 92-92 at the same cycle rate. Occasionally, probably REM sleep, it may stay below 90 for 5 to 10 minutes. It has gone as low below 80 to mid 70's. I have a sleep study schedule for the next 2 days. Hope to find out what is happening.
Does anyone know why blood ox would cycle over a minute cycle while resting and breathing slowly. It is not obstructive sleep apnea, as I have watched the value drop while I'm breathing.
Can shallow breathing cause this if there is a somekind of lung defect in the area of the lung which is being used while shallow breathing. I do sometimes wizz with very shallow breating.

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I have the O2 ring. Tried wearing it the other night without supplemental oxygen hoping to see different results and was woken up every hour with readings below 88. I still wear it,but with supplemental oxygen to show the drs the difference.

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@shunt

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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Sounds similar! I have a PFO, and to their knowledge nocturnal hypoxia, so I qualify for nocturnal oxygen but not traveling oxygen! We travel! I’m blessed with my mother in laws innogen, but will need that dr letter to be able to take it on the plane! I suggest getting the O2 ring to see your daytime O2 and take it from there. These readings will be in my arsenal when I see the pulmonologist and cardiologist.

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@gigipigi

Please read my previous posts. I also don’t have sleep apnea. I can’t wait for AI to read all these posts and come up with potential solutions. Although everyone is different, how can we all experience the same thing without something in common? Has everyone on this thread had the bubble test ? That showed my PFO. Local drs suggested Long Covid symptoms. I never tested positive for Covid., but apparently that doesn’t mean that I didn’t have it.

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I have mitochondrial myopathy and mitochondrial dysfunction. After 2 years I had a repeat Pulmonary test and now show signs of restrictive lung disease. I have a repeat ecocardiogram tomorrow. I'm STILL trying to get to the bottom of this but things are leaning towards possible nervous system disorder, or not being able to oxygenate my blood properly. Getting closer.

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