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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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deb24 | @deb24 | Feb 24 7:12am
In reply to @shunt "Hello, YES! I have been having this problem for about two years now. I am 69..." + (show)
@shunt

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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Hi Sharon,
I shared many aspects of your issues. I had an auto immune disease before COVID, but have had multiple issues with my oxygen being all over the map, plus troponin being chronically raised, indicating some level of cardiac damage. I had huge fatigue with lots of daytime sleepiness until trying nicotine gum, patches. It seems to have fixed all by the oxygen issues. I have just obtained a home oxygen concentrator and must use bipap for sleep. My doctor thinks it's due to a weakened diaphragm. I have central apnea during sleep, and I wonder if the COVID has caused central apnea to affect my waking hours. Have you found any answers?

REPLY
swaldo123 | @swaldo123 | Apr 1 2:45pm

For the past year and a half, my spo2 has ranged fro 72% to 100%. No rhythm or reason does it drop. I have had work ups by both cardiology and pulmonary and neither can find the reason. It has happened in office as well. It doesn’t stay down long maybe a minute, two at most. Have you found out anything on why yours does this?

REPLY
1 reply
wallenberg | @wallenberg | May 2 9:55pm

Are you still reading this string regarding fluctuating O2 levels?

REPLY
1 reply
wallenberg | @wallenberg | May 2 9:57pm
In reply to @swaldo123 "For the past year and a half, my spo2 has ranged fro 72% to 100%. No..." + (show)
@swaldo123

For the past year and a half, my spo2 has ranged fro 72% to 100%. No rhythm or reason does it drop. I have had work ups by both cardiology and pulmonary and neither can find the reason. It has happened in office as well. It doesn’t stay down long maybe a minute, two at most. Have you found out anything on why yours does this?

Jump to this post

Are you still watching this post?

REPLY
mgpolimeni | @mgpolimeni | Jun 24 2:07pm

OMG…I feel like I am reading my autobiography! I am going through the exact same thing! Has your doctor checked for eosinophilic asthma? I have never heard of it until I was diagnosed with it. Believe me when I tell you, it took 10 years to figure it out! Finally I found the right doctors and they prescribed medications. I was a new person!!! However, now, I feel like I’m going backwards again after 8 years. I don’t know if my body is getting immune to the meds or if something else is going on. So, I have several tests and appointments scheduled. Good luck to you. I know how aggravating it can get.

REPLY
mgpolimeni | @mgpolimeni | Jun 24 2:08pm
In reply to @wallenberg "Are you still reading this string regarding fluctuating O2 levels?" + (show)
@wallenberg

Are you still reading this string regarding fluctuating O2 levels?

Jump to this post

Yes

REPLY
dalem | @dalem | 5 days ago

Same here. I am on O2 all the time @ 2 liters flow. The pulmonologist said I have interstitial lung disease. I am a non smoker. I too am seeking answers or exercise I can do to have more stable levels

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