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Wildly fluctuating O2 levels
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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@salpuck1979
Sorry to hear you’re going through all that; I can relate to the fear and anxiety apparently fluctuating o2 readings can cause.
I wrote that post back in 2022. Shortly thereafter I had some sort of mental shift where I was able to say “scr** it”, put the oximeter in a drawer, and never use it again. The stress and disruption it was causing my life just wasn’t worth it.
In the past 4 years, I have not fainted, dropped dead, or had any limitations on my activity.
I have no idea what causes it, and have taken the position that if it were anything terrible, I probably wouldn’t be writing this.
Obviously this is a common phenomenon judging from the length of this thread.
I’m not telling anyone else what to do; just saying what worked for me.
Thanks to you and everyone for their concern and support; I really was in a bad place when I reached out in 2022.
I hope all of you get the answers you seek and get stabilized.
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2 Reactions@gigipigi
I also have oxygen induced hypoxia so my pulmonologist gives me a prescription to fly with. I LOVE my Inogen unit! Other than that, when I share how concerned I am about my fluctuating levels to my pulmonologist, he just tells me, “relax and take a few deep breaths.” It’s all I can do not to roll my eyes at him. I have taken pictures of my low readings and shown him, and he will just blame it on my pulse oximeter, despite the fact that I have several and they all show the same fluctuations, and the fact that my husband’s 02 when taken on the same meters never shows wild deviations like mine does. I also invested $200 in a medical grade oximeter which he was unimpressed with. Best of luck to you!
@shunt I got the same response originally from my pulmonologist. I also have reynauds so they poo pooed my o2 devives. I kept pushing my primary and pulmonologist. I finally had a CPET test and more information came out about my heart, but it still didn't explain my nocturnal hypoxia. I requested another sleep study. In the journey (pushing my primary and pulmonologist) we discovered i had had a stroke and have a PFO. My pulmonologist originally suggested it could be brain related before all the testing. So..if you research it may be central sleep apnea which is brain related for nocturnal hypoxia. My daytime oxygen is apparently fine unless I'm on an airplane.
You said "while standing still." Does that mean you weren't walking, but maybe doing something like moving other parts of your body, your arms for instance. Or were you totally still?