Low oxygen SPO2 anyone?

I use a pulse oximeter because it is more accurate in monitoring my heartrate than smartwatches or fitbits I’ve tried.



I noticed that my oxygen saturation fluctuates a lot during the day, everyday.
It goes from 90-99 spo2. Especially on waking I have lower O2 values. (91-92)

It’s not the meter, they are very accurate; whenever I test it on my wife or son they always have 98-99.

I cant find a relation with activity or the way I am feeling.
It’s just 9% below optimal sometimes.
And everyone else I test it on has 98-99.

No asthma, Copd or anemia.
Could this be caused by poor circulation to the extremities?
Is this a common thing in ME or dysautonomia?

 

Yes. I've been wondering about this @Mattie. Even bought a second pulsox to check the first. They do differ so obviously something is not accurate, or both are inaccurate.
My levels are fairly similar to yours but husband is reliably 98-99

GP not interested, although he did catch me at a good moment.

Was in hospital recently with a heart valve problem so obs were taken regularly. My O2 was slightly low fairly often and I was told to breathe diaphragmatically. So long as it went up to 96, which it always did, everyone was happy. So I have decided it's ok for now at least.

 

Could these lower oxygen saturation figures just be a result of ME/CFS patients (of necessity) being sedentary much of the time? If you are doing minimal physical exertion, presumably your oxygen requirements are going to decrease, and so I would guess breathing rate or the depth of your breathe is going to decrease in accordance.

So if you have shallow and slow breathing, it's possible the oxygen saturation will go down, as there is less oxygen being delivered to the lungs.

You might want to check your oxygen saturation during physical exertion like walking, etc. It may be closer to 100% then.

 

I did, many times. I cannot see any correlation with activity or breathing.
I have been using device also before I became very inactive. Even then it gave me low readings often.

 

What if you deliberately start taking rapid deep breaths: does that increase the oxygen saturation? I had a pulse oximeter (but it broke), and I noticed that sometimes my oxygen saturation would go down to around 95% (never quite as low as the 91% - 92% you are getting), but deliberate rapid deep breathing would bring it back up closer to 100%. But this is more just to check that the pulse oximeter is working properly on your finger (we know from your tests that it works properly on other family members).



A speculative explanation of the lowish oxygen saturation figures you and @Binkie4 are getting might possibly relate to Dr Leslie Simpson's research on red blood cell shape in ME/CFS.

Red blood cell (erythrocyte) shape can vary from person to person, with the biconcave disc shape being the ideal form. Here is an article on the various abnormal red blood cell shapes that exist.

There is some suggestion that ME/CFS patients may have a higher percentage of abnormal red blood cell shapes (such as cup-shaped), that make it harder for these cells to get through small capillaries.

Assuming this is the case, then when these abnormally-shaped red blood cell arrive at the lungs, perhaps some of them cannot get into the tiny capillaries of the lungs, and thus do not receive any oxygen. So these abnormally-shaped cells then flow onwards out of the lungs without being loaded up with oxygen molecules. I am not sure if the lung vasculature makes that anatomically feasible, but I am thinking that might happen.


Dr Simpson found that B12 hydroxocobalamin injections can influence red blood cell shape, as can evening primrose oil. So if this red blood cell shape speculation is correct, you might expect these supplements to improve your oxygen saturation.

 

@Hip
Your post is extremely interesting. A month ago I bought Dr Simpson's book " Ramsey's disease- ME and the unfortunate creation of ME/CFS" .His work was on red blood cell shape and @MsUnderstood was a subject in his research in the 90s I think.

I had become interested in the haemorhological properties of blood, even tried discussing them with a haematologist who looked at me blankly. I'm not sure that they are on med school syllabus.

I just have a gut feeling that this is involved somewhere. I think Ron Davis is looking more closely at blood . The blood of ME patients is apparently stickier, less able to flow easily than that of healthy controls. And I think he has reported that it is a different colour, darker, which fits with the article you posted. Am afraid I don't have a link.

I may try the B12 again.

 

Interesting, my blood, in volume (i.e. when drawn) used to look almost black and sticky, like warm tar, and used to sometimes take minutes to get a vial - presumably it can't be actually like that or it wouldn't work very well, or at all, as blood - but that's what it looks like - or did, for years.

It still looks weird, but isn't as sticky, I even got asked a few months ago, at a bloodletting, by the nurse, whilst doing that shake thing they do with it, if it looked normal to me

It has improved however, I suspect that may be coz I stopped smoking 5 years or so ago.

 

Thank you for your input @Hip !
Will try the breathing test.

I have read the Ramsey's disease ebook a few weeks ago. Very interesting.

I have been injecting high doses of hydroxy b12 over the last year. Twice a week. That did not make a difference in spo2 readings.
Currently trying evening primrose oil...

 

Since your husband's tests are reliable, maybe the meters don't do well with you for whatever weird ME/CFS-related reason.

I have fluctuating oxygen levels as well. They don't correlate to short-term activity, but to long-term. On days that I have been more active, my O2 will be around 90 in the evening. It is also low when I first wake up in the morning.

 

Wow 90 ish is pretty low.
I don't have ME, but do have asthma. I developed it about 10 years ago and it has always been pretty mild.

Then 16 months ago I woke feeling fairly rough. I had had a very sore throat the night before but nothing else. When I went downstairs I still felt rotten. I do not usually get colds etc badly.
However trying to get back upstairs was dreadful. I did a couple of steps and had to stop

Anyway, a friend took me to A and E where they administered a few nebulisers. Nearing 4 hours they wanted to discharge me. To be fair the doc wanted to monitor me for a bit longer, but more patients were arriving and she was overruled.

This is where the habit of understating your symptoms is not good, I said I felt pretty rough still. Husband knew that was severe for me.
I have a habit of saying my back's a bit twingy, when I mean I need to stop doing anything and sit or lie down with an ice pack and top up pain killers

Anyway we were kicked out, despite my levels still only being 91/92. (This was my first experience of an asthma attack)
Bit of a long story, but for me this was really restrictive, I had to sit down 3 times between car and lounge. We do not have a mansion!

I was readmitted later, seen very quickly by the medical team, tested more fully and given several more additional meds and recovered fine.
Was in hospital 3 and a half days, including the 8 plus hours in A and E on the Monday.

 

Just to say I was admitted to hospital again last week just for a day for another condition.
Obs were taken routinely ( I make sure not to watch because I have a white coat hypertension and it makes it worse) and towards the end of the day, I was asked if I usually had trouble with O2. It was 92. I will take this up with doctors. I need heart surgery soon and I will raise it then. This time I was told it should be 94 min.
My own view is that it's a capillary problem; hands and feet often cold. Have restarted B12.

 

I've been taking my O2 every half hour today; it's ranged between 91 and (for an exciting 5mins) 99. But it's averaging 95.
The lows are corresponding with headaches.
I had a normal ECG last month.

Somewhat worrying is Mr S and a friend who popped over both have heart rates 10-20 bpm lower than me and O2 levels of 98-99. Both are 10 years older than me and lifelong smokers.

 

Has anybody of you experiences with taking oxygen?

 

I ordered a refurbished oxygen concentrator today. (5 liter / min.) Some PWME reported significant benefits. (Not specifically with increasing sp02).
Will update after trying it.

 

If mine is a bit low at the doctor’s, the MA invariably blames my cold hands (I have Raynauds and it’s typically visible) and keeps looking until it gets up to 98 or 99 or at least 97 and writes that down.

I suspect it has more to do with walking in than the Raynauds.

 

Received the Philips Everflow 5L/min. 3 days ago.

I have done 3 one hour sessions in the past two days.
Can't say I have noticed anything, good or bad.
Will continue trial for a month.
If it does nothing I will sell it on.

 

Has your O2 level changed upwards?

I have bought another sats meter; now have 3. Two are in line, the other reads high so I will junk it. My reading is around 92, which is what the hospital told me when I was admitted for a day a few weeks ago.

Saw my GP this week and he prescribed an inhaler, not as a reliever but diagnostically. Sorry, it's downstairs so I can't get to it to give you name.

Have also been referred by cardiac team to pulmonologist because of breathlessness. Are you breathless?

 

No. O2 levels measured by sat-meter did not change during or after 1 hour of O2 intake.

Only when in PEM.

 

https://www.healthrising.org/blog/2...er-more-exercise-issues-plus-bad-brain-motor/

Maureen Hanson and Betsy Keller both reported on issues which related to oxygen transfer to the tissues at the Montreal conference. I hope that is correct?