Wildly fluctuating O2 levels

It took a muscle biopsy to find the mitochondrial dysfunction and myopathy. Hopefully you don't have to go that route!

Mine woke me up too! I changed settings to not be woken up. Mine uploads to my computer and I have the reports to show what happens

I thought it was a good idea to be woken up originally, but sleep is precious so I will turn it off when sleeping now.

I know that readings when you sleep are lower.
I have an Apple Watch I can use, but I also have a pulse-oximeter.

I had ACDF surgery on cervical spine this past Monday and my oximeter readings are up and down and it beeps at me when it drops below ideal levels. It is very scary because I am breathing normally (or so I think) and not sure if it is due to the irritation of my trachea when being intubated. I have fired a doctor for putting in my record hypochondriac and treating me disrespectfully when I was suffering from being misdiagnosed for degenerative cervical myelopathy which is spinal cord compression injury. It caused many symptoms below my neck and improved after ACDF surgery but I have residual permanent spinal cord injury due to the delay in treatment (my 4th surgeon finally properly diagnosed me and explained to me what was behind all of my symptoms…finally validated!).

Here is what AI came back with to the original post. I was curious how it would respond and wanted to share:
“I'm sorry to hear that you're experiencing such distressing symptoms. Fluctuating oxygen levels can be concerning, especially when they vary significantly. Here are some points to consider regarding your situation:
1. Understanding Fluctuating O2 Levels
Causes: Fluctuating oxygen saturation levels can be caused by various factors, including lung conditions, heart issues, or even anxiety. In your case, the restrictive lung disease indicated in your pulmonary function tests (PFTs) may be contributing to these fluctuations.
Measurement Variability: Finger oximeters can sometimes provide inaccurate readings due to factors like poor circulation, nail polish, or movement. It's essential to ensure that the device is used correctly.
2. Importance of Medical Evaluation
Follow-Up with Specialists: Your upcoming appointment at Mayo Clinic with a pulmonologist is a crucial step. They can provide a more comprehensive evaluation and may conduct additional tests to determine the underlying cause of your symptoms.
Documenting Symptoms: Keep a detailed record of your oxygen levels, symptoms, and any triggers you notice. This information can be valuable for your healthcare providers.
3. Managing Anxiety and Stress
Mental Health Support: It's understandable to feel scared and depressed when dealing with health issues. Consider seeking support from mental health professionals who can help you cope with anxiety related to your symptoms.
Support Groups: Connecting with others who have similar experiences can provide emotional support and reassurance.
4. Emergency Situations
When to Seek Help: If you experience severe symptoms, such as difficulty breathing, chest pain, or persistent low oxygen levels, it’s essential to seek emergency medical attention, even if previous visits did not yield answers.
5. Advocating for Yourself
Communicate Concerns: If you feel that your concerns are not being taken seriously, it’s important to advocate for yourself. Be clear about your symptoms and how they affect your daily life.
Conclusion
Your experience is valid, and it's important to continue seeking answers and support. The upcoming appointment with a pulmonologist may provide you with more clarity and potential treatment options. In the meantime, focus on managing your anxiety and maintaining open communication with your healthcare providers.”

Well no answers still yet dozens of tests. I got the o2 sensor even saved the recordings only for doctors to dismiss in office because he didn’t happen there . SMH fast forward I have developed cells in breasts and now high risk for invasive breast cancer . MRI every 6 months they even put me on tamoxifen! Got Covid again so that was fun , to the point now I have constant pain in hands and fingers and feet and toes . Feels like broken bones . Going in on Tuesday which I am sure will just prompt more blood work . Trying to find a better endocrinologist as not many in my area. The only I have refuses following anything but the blood results . Now every so often my breathing gets slow and heavy then I lose feeling from my elbows down . I believe it’s everything we come in contact with on a daily basis . Food , air and water . I am to the point I realize the doctors won’t do anything unless it’s to stabilize us from dying other than that it’s like they just keep passing you along to more doctors . I have spent a small fortune at this point . I exercise daily only to be in more pain seeing now improvement . Muscles get weaker even though I am literally pushing my body .

After running 3 half marathons in the last two years I was shocked when I just happen to put a pulse ox on my finger that my wife had brought home to have around during the winter to test our kids when needed. I have a special needs kiddo and sometimes it can be hard to tell when she isn’t well. Anyways, living at 5000 feet, a slightly lower spo2 is expected, but mine was 93%. Turns out walking up stairs and it can drop between 82 and 89. When I run I can fluctuate between 84 and 89, I try to keep it above 85. Of course I’ve been tested for sleep apnea, which of course they say I have. Cpap, didn’t improve the amount of time below 90% at night which is usually 2-4 hours, so I use 2L to sleep at night. I had to request this…. It wasn’t just offered. I’ve had Xray, CT, nuclear medicine vq scan, PFT, CPET, and echo. As some other have mentioned, I’m also uncovered a PFO through all this testing. However, I was able to get it closed. It had zero affect on my 02. So I would tell those considering it to proceed cautiously, I’m 5 months post procedure and still dealing with a residual arrhythmia from the procedure. For the most part, all of my testing has come back clean. The only think that was abnormal was my PFT. My fvc ratio was mildly reduced but my FVC was above average so it appears to be more of a ‘big lungs, with normal pipes’ common in people with my physique. (Barrel chested, athletic build). My DLCo was above average. My CPET was very encouraging. Above average vo2 max, 02 pulse, etc. my 02 was interesting. It was 95 at rest and 90 at peak exercise, which they considered fairly normal at this elevation. Side note on this. 1) this test was done on a spin bike, my 02 does ok on a spin bike, running and doing stairs is much worse. 2) they used a forehead sensor to measure 02. I bought my own Masimo clinical grade forehead sensor, it runs 5% higher than my 5 other finger pulse ox’s, including the finger clip that comes as an option on my Masimo pulse ox machine. Seems as though my forehead signicanrly over estimates. At first I thought it was just a finger perfusion issue but when I add an earlobe sensor it matched the finger readings.

Drs locally have basically said… you look fine, keep using the cpap and we will see what happens. When I asked if I should be worried about my dips they literally say, ‘sherpas live with far lower 02 levels, I would worry about!‘ So not being satisfied, I’ve been scheduled to be seen at National Jewish in Denver which is one of the best respiratory clinics in the country. I go out the end of next month for a full week of testing. My Dr’s are adamant I don’t have COPD, and my cardiologist says it’s definitely not PH which certainly has been the thing I’ve probably freared the most through all of this. While my work up definitely speaks against overt PH, there is I guess related type of pulmonary vascular abnormalities that could be in play.

It is crazy to hear so many of us dealing with this and so few that have gotten to the bottom of it. While I have had COVID, I never had any respiratory symptoms from it. Furthermore, I’ve actually had some little things happen over the last 25 years (getting really sick at higher elevations) that makes me think I’ve been dealing with something related to this for a very long time. I do get a little short of breathe walking up stairs, but I’ve also been training for a full marathon and ran 15 miles last week 🤷‍♂️

Your oxygen fluctuations would be normal for me. Also, I had quite a bit of coaching on using the pulse-ox when caring for my Mom and experiencing some heart issues of my own about 15 years ago. Essentially, except for the clinical grade meters used in perfusion tests, they are meant to be used on a stationary person - not while in motion. Perfusion in extremities drops during physical exertion to supply the lungs and brain with sufficient oxygen. I can't put my finger on that research right now, but you can probably find it in Google Scholar or a serious runners' blog.
At sea level my sats stay in the 90's easily (former runner) but above 2500-2800 feet they drop sharply to the mid 80's. And boy do I get a headache.

Sorry you’re going through this.
Has anyone mentioned ventilation-perfusion mismatch to you? As I understand it, that means that the blood with open spaces on the hemoglobin molecules don’t arrive in the alveoli at the same time as the oxygen molecules.
It’s like a taxi( blood) arriving for passengers(oxygen molecules)and leaving without them.
Could that be a possibility?

I know ventilation-perfusion mismatch can mean a lot of things…. I’ve read about sometimes blood rushing past that alveoli faster than the ‘oxygen in the breathed air can transfer into gas in the blood’. Is that kind of what you are talking about? I’m not sure how how that could be specifically tested.