Can Pots Cause Low 02 Saturation Levels? Pulmonologist Wants Me To Have Surgery – Need Feedback

[lynnie22]

I've been Following the topic of difficulty breathing with pots. I didn't notice that a low oxygen saturation level was necessarily a part of that for most of you. My pulmonologist wants me to have surgery which is why I'm writing and asking for your opinions.

Following my diagnosis of pots at Mayo, I came home and went to several doctors, including my pulmonologist. I have had trouble catching my breath for several years. No one knew what it was. However upon my return about three years ago suddenly I had an oxygen level That fell periodically to 88 or 87. My pulmonologist was concerned and sent me to a surgeon who tested me for a shunt. After much further testing, it turns out I have a small PFO -- small hole in my heart . No one feels this hole has anything to do with the low oxygen but both my pulmonologist and the surgeon think closing it is a good idea. Even the pots doctor thinks well maybe it will help the pots. I am okay with having the surgery if it's needed but then when I read about respiratory problems and pots, I wondered if it also is connected to the oxygen level dipping frequently. Over the last few months it keeps dipping lower.

I am seeing my pulmonologist tomorrow who knows little if anything about pots and I wanted to have whatever information I could use.

Thanks a lot for your feedback.

[badhbt]

I have POTS and I own a pulse oximeter, mostly to check the heart rate. My pulse ox is never low. I don't know if that helps you or not.

I would maybe get a second opinion before major surgery, it really makes the POTS mad. I had a neck fusion hoping it would cure my problem and it made my symptoms worse for awhile.

Did they draw any ABG's on you? Are you symptomatic with the pulse ox? I know that those things are not always correct because of poor circulation. I sedate patients and there are some that read in the 80's, but when I move it to their ear they are in the upper 90's.

[Mytwogirlsrox]

I have POTS and a PFO and my sats are never low. Maybe 97 if I'm cold

[Mytwogirlsrox]

Just off the top of my head.. How is your CBC? There is a hemeglobin binding capacity they check for.. Pulmonary function testing.. Anything abnormal in that regard? Poor circulation? How ate your blood gases? Maybe they should check that.. I know for me, my Dr wasn't interested in closing my PFO b/c I haven't had a stroke. I just do baby aspirin

[Tobiano]

Even during my worst episodes my 02 saturation has been in the high 90s.

I hope your appointment tomorrow goes well and that you get some answers.

[sue1234]

I had a home sleep test that had a pulse ox taped onto my finger overnight. The doctor was concerned that I spent a couple of hours with my oxygen around 85. I used O2 for a few months at night(per his order), but didn't notice any difference. A year or so later, I had a real sleep test in a center and my O2 did not go low.

My O2 during office checkups is always normal, upper 90s. I have no clue what it is while upright and getting POTSy.

[lynnie22]

Thanks for your replies. To answer your questions, what are ABG's? Blood gases? I don't think so. I've had hundreds of blood tests, but not arterial except for the one that tested what my blood oxygen level was. It was very low. That is how my pulmonologist decided I have a shunt. Funny though, if it really is the hole in my heart and has been there all my life, why would the oxygen level suddenly drop? No one could answer that. The surgeon who did my first shunt study did it on the forehead which showed general shunting. He thought it was coming from my lungs, but on a CT scan, there were no abnormalities. The heart then showed this tiny hole. Still, they feel the low and getting lower O2 must be related to the shunt. But of course no one knows much about POTS.

By the way when I was at MAYO, I had a sleep study and my O2 level dropped to 82 while sleeping, something the doctor there felt was related to my taking sleeping meds at night, but whether that is related to my O2 dropping entirely, I can't imagine.

My CBC is normal. Borderline B12, iron, but good CBC. Abnormal thyroid levels always since mine was taken out. BADHBT, when I had surgery many years ago before I even knew of POTS, I had a HR of 130 at all time, higher when I moved of course. But who knew?

I guess the pulmonologist's suggestion may be the only way to go. I'll see.

[lissy]

What about asthma??? They did check that for sure right?...My O2 is never low

[lynnie22]

Yep. No problems with the pulmonary function test, except some weakness upon expelling air, although they have always insisted it doesn't mean anything. No asthma.

Shortness of breath like many of you at times, although it doesn't correlate with the oxygen being low. I have never been given the drug during the test, because my tachy has always gotten much worse on it. I think I have a tendency to tachy regularly and super fast heart beat when standing.

It sounds like most of you have a normal oxygen reading.

[lissy]

Hope your appointment went well.

[lynnie22]

Would you believe the pulmonologist canceled on me this morning? So it's put off till next week. Well, in the meantime I'll just wait.

[alijames]

HI

I have low O2 often==have a pulse oximeter. It seems that my shortness of breath is sometimes

muscle spasticity in my upper chest? or it is my apnea acting up in the daytime. I have a CPAP

for low O2 at night.

Sometimes I also have arrythmia and that makes my O2 drop really fast! I practice diaphragm breathing

every day because my upper chest wall is...has a mind of its own.

I can't explain it. They said it wasn't due to mitral valve....

Apnea seems to be my pulomonologists answer.

alijames

[lynnie22]

I know that apnea can cause low oxygen problems. THe CPAP should help you. That's interesting about your muscle spascitiy I actually just went to my cardiologist today who went to a seminar on heart holes, what I have, and says that she thinks I should have the surgery, since she has learned that it can cause some of my problems. I think I will be having the surgery in a couple of months. It seems to make the most sense, since O2 keeps going down.

[issie]

I have a friend that just recently had this done. She is in her early 50's and they just found it and she was born with it. She started having shortness of breath and fatigue --is how the found it. She had a plug put in and is doing wonderful. It was like an umbrella and when they got it in there it opened up and attached to the wall of the heart with little attachment like hooks. Then the tissue grows over the mesh/material that is there and it becomes more of a solid piece. She says she feels so much better having had it repaired.

Issie

[lynnie22]

Thank you, Issie. That's exactly how it was described to me. I have avoided doing it for about a year and a half, not sure if it would even help the breathing/low oxygen issue. But as the O2 goes down, and as more doctors get on board with iit, I am feeling more heartened that it may help. Thank you for your encouraging story.

[issie]

If you do it, I hope it helps you as much as it has my friend.

Issie

[comfortzone]

I know on my sleep study I had a few dips down to 72% or maybe it was 79% can't remember - and then back up to the mid 80's... when they titrated for cpap - I guess all was normal. I wondered why it would be that low - if the end result was just "mild" sleep apnea - and the pressure number for cpap was low - again can't recall but think it was 4. I had claustrophobia and after 3 mos of trying - had to quit the cpap. The respiratory therapist said he couldn't believe they even put me on it as the pressure was so low anyway - so I quit using it.

I have horribly distressing cognitive issues. So I wondered why is that - the doc did a repeat MRI and also did an overnight pulse ox study. As luck would have it - I had bilat max. sinus infections and probable pneumonia - the night I was to have the test completed. I never went over 84% the whole night - even with a ton of coughing jags. My primary was distressed and said, "I don't care how sick you were - no one should be 84% all night long"

So I was upset because I told the lady I was very sick when I went to take the oximeter home - she wanted to call a cab for me as I was so sick - I asked, 'shouldn't we just wait as I'm so sick' - she said no just do it - so I did - and now I'm told I need to repeat it - at my expense.

Then it's odd - why wouldn't they just repeat the whole sleep study and have me do a retry of cpap? Why spend this money on a pulse ox overnite test again? Why not just do a fresh set of PFT testing (mind a few years ago was mildly abnormal - they thought maybe because of my overweight status) Then my doctor awhile back last year said he didn't put stock in pulse ox readings on patients with orthostatic intolerance - which I do have.

So I don't know what to make of it - I went off pain meds to fix the brain issues and that didn't do a thing to help. So now we find this 84% all nite pulseoximetry test - but I was sick - maybe it's not that bad - but I bet it is... I guess I would then have to get yet more testing or just hear the doctor say, "well I don't believe those tests anyway" - meanwhile I get dumber everyday --- My MRI has the white spots in the brain - but the radiologist chose to address them as 'normal for that age group' - those guys just crack me up... areas of ischemia are not normal period - unless you have a reason for them that you consider valid.... I have borderline DM, high blood pressure and am overweight... small fiber neuropathy and hypermobile EDS.

So that doesn't tell you much - but I thought I'd write to let you know I too have pulse ox issues lately - will have the repeat test done on Monday... G'nite! :-)

[nantynanniez]

@lynnie22, hello, I was wondering if you had the surgery and whether it helped your breathing?