Hi all.
I went to the doctor yesterday for a routine physical for work. My O2 level was 90.
Last September when I went I recall it being 89.
The nurse remarked about it each time, but I don't think she told the doctor. I did not realize how low that was until I looked it up now. I have called them and asked them to get back to me about it.
I am worried. My sister (NP) thought it could be due to my poor circulation due to POTS. However, I asked around at dysautonomia network and people there have poor circulation/ hypovolemia without low O2.
I am worried that Sjs is affecting my lungs.
I am worried that I will have to go on steroids or immunosuppresants.
I am worried I will have to go on oxygen.
I am 36 years old!!!! (There is no screaming emoticon. We need to fix that.)
I realize that I have a serious case of cyberchondriasis. ::) Just wanted to share with you all. What would you do in my case to investigate. Thanks.
I would definitely investigate - do you see a pulmonologist???
we DO need a screaming emoticon!!
I don't have POTS, but I do have episodes of low oxygen. No idea why. It's episodic. I do have mild persistent asthma, so maybe that it what causing mine. I know when it gets lower than 93% I end up using my rescue inhaler and all is good again. Conversely, sometimes my oxygen dips down to 87% the same time my heart rate dips into the 40's - sporadic and episodic.
Between PCP, vascular doc, allergist, etc etc thus far no one can explain it and since it can't be correlated to anything specific, and I'm still walking and breathing without any dizziness and how I manage it thus far is working, I haven't pushed the issue.
What if your doctor referred you to a pulmonologist on a consult? It's easy enough to do a pulmonary function test in clinic.
Thus far I have passed mine with flying colours (my allergist even repeated them at next followup as he couldn't believe a ciggie smoker could have such good PFT results).
Another possibility? Some of us have issues with aspects of the nervous system - I can't recall if it's the autonomic nervous system or not, so hopefully some of the other sjoggies will add their remarks to your thread that have more familiarity with that element.
In any event (I can't type well as my eyes are blurry from drops so if I don't catch my typos just laugh it off - I caught the word sub for "event" at least - geesh), low oxygen is not a good thing over the long term and certainly needs proper evaluation to determine what is causing it then addressing the cause.
Amanda
Thanks.
Yes, POTS is an autonomic disorder but to my knowledge does not lower O2 in and of itself, although I may be wrong about that.
No, I have never seen a pulmonologist. Now I am thinking I should.
Drats. Another doctor.
I did not hear back from my doctor today but expect I will tomorrow.
Just curious. Do you feel short of breath at all or short of breath when you walk or exercise?
Regardless, if it was me I would see a Pulmonologist.
A good Pulmonologist will keep looking until he/she finds out why your oxygen saturation is lower than it should be.
If you can find the cause, maybe something can be done to rectify the problem.
How was this measured? If just with the thing on your finger and if you have Raynauds you can get a low reading which means absolutely nothing in terms of pulmonary function and is not a true measure of anything.
I occasionally get short of breath, I would say it is mildly so.
I do not think I have Raynauds. At least they do not change color dramatically like my sister's do. The nurse felt my hands to see if they were cold and they weren't. Yes, it was measured with the oximeter on my finger.
If it was me I would be finding a pulmonologist. There is just no way that internists/GP, etc. can deal with the pulmonary problems as there are so many issues that can come up. I made sure to see pulmonary many years ago as I had a bad lung infection and needed follow up. I only see her once a year now as things have stabilized for me.
I have not had my lungs scanned for 5 years and she wants it done in the next few months as she want to check me for autoimmune lung issues that can go with Sjogrens. Actually, all autoimmune diseases can have some pulmonary affects. I even found literature that showed the pulmonary changes that could be found in people with Celiac sprue.
You will find that you will feel so much better seeing a pulmonologist because you will have a more in depth understanding of what involvement your lungs may have. It is easy for other docs to miss lung issues if they are dismissing the importance of pulmonary symptoms.. Good luck. Irish
Ok. Thanks!
Yes get it checked out! Are you a smoker? Depending on that ....sats with normal lungs should be 95 or above.
Smokers who have smoked for a very long time can have low oxygen sats. Either way you need to see a pulmonologist, preferably one who knows about autoimmune lung disease. Sjogrens has been added to rare lung disease clinics across the country....I believe there are 26 total. Google that. See if there is one in your area and see the doctor associated if you can?
Good luck to you and be persistent. Ck
After I had pneumonia last summer and had an abnormal CT scan, I googled the U of MN physicians and looked at the profiles of all of the Pulmonologist. There is one at the U of MN who specializes in pulmonary problems associated with Autoimmune Diseases and also Interstitial Lung Disease. She is the Pulmonologist that my Rheumatologist referred me to. It was a good decision. She is superb.
In fact, she has been testing me to find out why I get short of breath when walking up an incline (even slight), walking faster than about 2.5-3 mph, and walking and talking at the same time. My pulmonary function tests are normal. Then she did an echocardiogram, which was normal. Then she did a cardiopulmonary exercise stress test and this was not normal. The pulmonary part/results of the test were normal, but I have an attenuated heart rate response to exercise (chronotropic incompetence) (my HR increases to 130 bpm with exercise but it should increase to 158 bpm with exercise). So she has referred me to a Cardiologist for evaluation. Chronotropic incompetence is generally believed to reflect an underlying autonomic nervous system imbalance.
This is the type of thing I was referring to in my other post. You need someone who will do the appropriate testing to find out what is wrong and then refer you to the appropriate specialists if the cause is not pulmonary.
I have never smoked.
Please get to a pulmonologist. My oxygen got low-I was a little short of breath but ignored it. My PCP sent me. He started tests but before he could come up with a diagnosis, I suddenly went into respiratory failure and spent awhile in the hospital.Between my rheumy and the pulm. I was said to have interstitial lung disease caused by Sjogrens. I am on oxygen and immunosuppressants and working on getting better.
This very well may NOT happen to you but I would get it checked. In each state there are one or two hospitals that have rheum and pulm who work as a team. I am lucky to be near one of those centers.
Good luck and feel better!
Hugs,
Lesley
So, my doctor's assistant called back. I got the numbers from her. O2 in September was 88, January 98, and now 90. My doctor is not concerned because I have not reported any other symptoms. Very occasionally I cough some, and there are occasional times I get a tiny bit winded coming up the stairs. I am in bad shape at the moment because I have had a hard time exercising since last May.
I emailed my rheumy and we'll see what she says.
I guess I am not as concerned if it went up again in January. At least I'm not low all the time. It could have to do with my poor circulation, although I have not been able to find anything on that.
Quote from: Nymph on March 25, 2015, 03:20:02 PM
So, my doctor's assistant called back. I got the numbers from her. O2 in September was 88, January 98, and now 90. My doctor is not concerned because I have not reported any other symptoms. Very occasionally I cough some, and there are occasional times I get a tiny bit winded coming up the stairs. I am in bad shape at the moment because I have had a hard time exercising since last May.
I emailed my rheumy and we'll see what she says.
I guess I am not as concerned if it went up again in January. At least I'm not low all the time. It could have to do with my poor circulation, although I have not been able to find anything on that.
my personal opinion (and I should take my own opinion and apply it to myself actually), still worthwhile to pursue a pulmonologist consult. No harm in a consult.
Do you have any shortness of breath in conjunction with the drop in O2? I always get short of breath when my oxygen drops. And it's episodic - not all the time just once in a while. Sometimes I even get deep dull pain on left side of chest but not enough to complain about (in comparison to my other aches and pains I mean).
I just found this from Johns Hopkins on oximetry:
"Certain factors or conditions may interfere with the results of the test. These include, but are not limited to, the following:
Decreased blood flow to the peripheral vessels"
That's POTS. My capillary refill time is about 6 seconds, which is ridiculous. My fingernails are half blue all the time. My feet turn purple on a regular basis. I think it's most likely due to this.
litliwlowa - I was not short of breath when I had those low readings. That's another reason to think they're not accurate. You're right, though. No harm in a consult. I will see what my rheumy says.
If your finger nails are blue and feet,or legs are purple whether Raynauds, pots or poor circulation these could cause a low pulse ox reading. Something circulatory for sure is going on.
I agree with rnathans...something circulatory is going on if your nails/fingers are blue. I doubt your O2 sats are truly reflective of your lung function...it's more likely the lack of circulation causing the low readings. If your actual saturation was 89, then you would likely FEEL it, by being short of breath and in some respiratory discomfort. You didn't mention any short of breath, so does that mean you didn't have any symptoms?
Before you see the pulmonologist, you should get your circulation evaluated...it seems to the the bigger and more serious problem.
BTW, you are correct in that autonomic dysfunction does NOT lower O2 readings like this.
I don't really feel that I have shortness most of the time. Sometimes I get slightly winded coming up the stairs. I just feel like I am bad shape, not that I'm gasping for air or anything. And I have a slight cough sometimes but I think that is from allergies. So I don't know.
You are right to still pursue a pulmonary assessment. Because you have diminished circulation from another physical condition you need to see if this is affecting your breathing in any way. This way you can do preventative maintenance as ordered by your doctor. Good luck Irish
So, my primary says he is not concerned because I was not having respiratory symptoms when I had the low readings, but to come in if I have such symptoms. I guess that means he thinks they were false readings, which I also think is the most likely explanation.
On the other hand, my rheumy answered my email and said she thinks I should get a set of lung function tests with diffusing capacity. Given all I have read about lung problems in Sjs and especially anti-CCP+ RA, I think that is a good idea. So I'm just waiting for them to call to schedule the appointment.
I feel much better about this. Thanks, everyone!
I seen my rheumatologist today and asked if sjogrens will effect my internal organs and his response was that it does cause inflammation in the lungs, liver and kidneys. But to what extent I don't know. I would suggest for you to request a referral to a lung specialist just to ease your mind, as sometimes the unknown is worse than knowing. There may be some exercises you can get that help with your breathing.
I have interstitial lung disease from sjogren's.
My O2 levels have as gone low as 87%.
When this happens, I am very sick, weak feeling, cannot walk and talk at the same time, and cannot go up stairs. I first noticed this breathing problem while I was at Mass, when I noticed I could not sing and breath at the same time - so I had to stop singing. Little by little this got worse, until I was placed on nasal cannula oxygen. I no longer require O2, and I know I am well when I can sing again.
What I have is inflammation in the capillaries that feed the alveolar (smallest air sacs where the Co2 is exchanged for O2.
My CO2 blood levels are always slightly higher than normal, even when I am not short of breath.
I have a tight chest right now, and I feel like I cannot bet in enough air.
I am having a flare, with all the other usual symptoms.
I am in bed, almost happy to be here, because I am so fatigued.
There are better times ahead, of this I am sure.
This is Day 3, so I have about another five or six days to rest.
I hope this helps you, and please don't worry, because all is not lost. There are better times ahead.
Good luck,
Linda
litliwlowa, You mentioned that you have episodic low O2. Do you have a specific lung problem that's causing it?
Quote from: Nymph on March 31, 2015, 01:56:14 PM
litliwlowa, You mentioned that you have episodic low O2. Do you have a specific lung problem that's causing it?
Good question. I haven't been back to pulmonologist in 5 yrs (fired that one - NO doctor gets up his 7 ft tall self and gets in my 5'3" face and yells at me.)
I've had asthma for decades. Numerous allergies. OSA (sleep apnea). My PFTs look great. Depending on the doctor, some say I have COPD (NOT), others say only asthma, others say "I don't know, your PFTs look great". Various triggers for the shortness of breath.
I will be discussing this with upcoming wellness visit actually. Not sure mine is pulmonary at all. Seems to correlate when my BP goes too low which sometimes correlates to drop in heart rate - seems that way anyway. Sudden onset fatigue also like who put lead weights on my eyelids kind of fatigue. Episodic left side chest pain pressure.
I was supposed to have cardio followup in 2009 - had complete cardio consult (with echo, thallium stress test etc) in 2008 following abnormal EKG subsequent to gee willickers horrid chest pain that lasted a couple of hours. Moved to different state - so far no one is listening (let alone reading that report even tho it's been provided). My new to me PCP is more amenable to considering cardio - since the findings back then were not 100% normal.
And maybe it is all sjogrens, who knows?
Thanks for filling me in. It is interesting to hear other experiences. Of course, it seems that low O2 readings can have a number of causes.
Now it seems that my rheumy also thinks it could be a false reading. She wants more readings to make a judgement. Ok by me. I'm getting a pulse oximeter so I can keep track for awhile. I've usually been able to get the most out of my doctors with sheets of numerical physiological data. Haha.
And I would never go back to a doctor who yelled at me, either. Horrible!