Why do I have shortness of breath when my pft are normal?

I may have asked this before, but once again my breathing tests came out normal, even above normal. Now don't get me wrong, I am happy for that but why do I still have such shortness of breath?? My pulmonologist doesn't even have a good answer. It is very frustrating!
Thanks for being there for us to ask all the questions our doctors can't or won't answer!!
~~Gale~~

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I have the same question for myself. I wish I had an answer for you, perhaps someone will explain this to both of us. My ACE also comes back low to normal, yet I have shortness of breath, relentless cough and many other sarc. symptoms.
I was diagnosed w/the disease but that seems to be as far as it goes w/my doctors so far.
Good luck with getting an answer.
jobob

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Dear Jobob
I thought I made a mistake and accidently posted my reply before I was finished with it, but not sure so I will start again. lol
Thank you for responding! My ACE was 28 normal when I first became sick a year ago and all the testing began. My 2nd ACE about 2 mo later was 300!!! This was partly why they diagnosed sarcoid...along with all of my symptoms and a chest CT scan. Now my ACE is back to normal but I still don't feel great?! Confusing huh? Currently, my doctor says he doesn't think ACE is a good test for me as far as the status of the sarcoid!
Sure makes a person feel like screaming!!!
Thanks again and God bless!
~~Gale~~

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Okay, I'm on the same page with you and jobob. I have the same problem. Breathing tests all come out
okay, but I'm still huffing and puffing after walking to and from the mailbox, etc. I tell the Pulm. Dr. about it, but he doesn't seem to address that with me.
Hoping we get some answers.
-Gwen-

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My PFT's are in the high 50's to lower 60's, but my oxygen saturation level is always 98-99%. I have read that oxygen saturation is not a good indication, because most likely the patient is sitting down and hadn't been doing anything remotely physical in the preceding 15-20 minutes.

I can't answer your question about why you are short of breath with good PFT's, except to quote my pulmonologist when he says "sarcoid is a strange disease", not very comforting, but maybe that is just the way it is. I believe no one really knows the answer to that question (and unfortunately so many other sarcoid questions), which is why we never get any concrete answers.

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Thank you for responding! Even though there are no real answers at this time for most sarcoid questions, it helps so much to know I am not alone!
Hugs :-)
~~Gale~~

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May have the answer here guys!

I have stage 3 sarc lungs but with good oxygenation.The pulm says the symptoms I have that you describe are from sarc in the fine breathing passages. It is like breathing through a straw. You get enough air into the lungs to produce good blood gases, but it takes so much work that you feel light headed, short of breath, tired and chest hurts.

Do you do all the computerized breathing tests at your pulm offices?

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I have had the same problem and it is not from the sarcoids it actually from anxiety and had my dr.give me a presciption for it .I never had it before only when
I came down with this .
good luck.

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Yep, same for me as well. I now have scarring and my right middle lobe is collapsed, but my pft. test comes out normal.

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What ticks me off is when you have a normal PFT the dr blows you off and says your PFT is normal come back to see me in a year. Your sitting there telling him you short of breath, you have pain in your lungs and the area around your rib cage feels like someone is sticking you with a knife.

What he didn't tell me until I got a copy of the report from the scan is that my spleen is enlarged with granulomas and so are my lymphnodes, even when the ACE is in the normal range. I find it maddening. I am feeling like "Well doc if everything looks good on your end why do I feel so bad?"

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I had normal breathing tests for years with pain and shortness of breath, so I understand your frustration. It's kind of like sarc in general. You look okay, but you feel like crap. After 20 years my tests show that I am breathing at 75% capacity, and my doctors still say that's very good considering how long I have had it. So I guess I still look good and feel like crap. : )

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Dear ellj,
I think all the PFT'S I have had are probably computerized. I have never asked. :-( How would I know if they are not? Also, if I may ask, what difference does it make in the results? The recent results of my PFT'S placed me in the 104th and 112th percentile...which is above normal function!? My blood oxygen levels sitting and walking are in the mid to high 90's. They gave me an in home oxygen level test overnight and it was normal, don't know the exact readings. All my lung specialist says is that there can be a lot of "things" going on in the bronchial area that might cause shortness of breath. As some of you have said, he thinks my PFT'S are excellant so just come back in 4 mos! Sigh...
Thanks to all who replied, you are awesome!!
~~Gale~~

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Ask if ALL the results of your PFT are normal. Are they normal on the inhale and normal on the exhale? Are you moving air well in and out? There are several dimensions to the PFT other than simple oxygen level. It can, the computerized test, measure air capacity in and out in addition to oxygen level. It is important you understand all the info from the test and how it changes over time. Try asking the tech doing the PFT to explain the computerized printout to you - including what the numbers mean.

I have found that stress - mental or physical - can cause shortness of breath for me. This seems to be a constriction in my chest. I use inhalers including an emergency albuterol inhaler. They do seem to help.

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I have the same issue. My PFTs are the same and my Xrays have not changed in 5 years. My oxegen is 98 and still when I do anything remotely physical I get all breathless. I am also on 4mgs of Prednisone.
My pulmonist is elated so I try to say ok and just get on with it.
A friend called today and I was coming up the steps from the basement. I put a bit of pep in my step and when I answered the phone I sounded like an asthma attack. She was very concerned but I told her it is just Sarcoid. I keep my inhaler handy.
Bunkie

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hey jobob, i have ask my docs the same thing without ever getting a good answer. my pfts have all been normal but i still have periods of not being able to catch my breath, dizziness etc. i'm trying to get into johns hopkins and hope to get some answers there. if u ever get a good answer let me know and i'll do the same! good luck

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Hi ellj
I think I misunderstood your question: "Do you do all the computerized breathing tests at your pulm offices?" My new answer lol is yes, I do all the computerized tests at my pulm office that my doctor orders. Except for the most recent PFT and that was because I have always hyperventilated extremely easily and the very last test was one that would most likely make that happen so the person giving me the PFT said it was not an important test and they had all they needed to get an accurate reading, so I didn't do that last one. Sorry that I was so dense!!
Many hugs
~~Gale~~

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My PFT's were all well above normal even though I was short of breath and had chest pain like all of you. I was told they would check it every 2 months or so, that was 9 1/2 months ago and I've never had another PFT. I still am short of breath and continue to have chest pain. My last appointment was the end of January, I had a chest x-ray and he said it looked good, that it showed better volume than my July x-ray, so any problems that I have now were not related to the Sarcoid and come back in 6 months for another chest x-ray.
I have a copy of the PFT, everything is above normal. Wish I felt above normal. I think if we had PFT's before Sarcoid, then maybe it would show that we really have had a decrease in our own personal normal, rather than being compared to someone else's "normal".
What you said Ellj really does make sense. It's good to hear that some of the docs out there understand and can explain.
I have a friend who says that normal is a setting on the washing machine! :>)

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Hi there,
I just joined this group. Found it while doing research about sarc. I've had pulmonary sarc for 3 years, and it's getting worse. I had a 6 month course of Prednisone last year and it made a huge difference on my breathing, felt back to normal. But a few months after going off the Prednisone, I'm basically back to where I was before the drug, out of breath with exertion and a nasty dry cough all the time.

Regarding the PFT's.
It seems that the FVC (forced vital capacity) is not affected by the sarc. Mine has always been greater than normal and it has not changed during the course of my disease. One of the numbers that is significant with sarc. is the FEV1. This is the amount of air that you can force out in the 1st second. If there is a restriction or obstruction this is the number that will show it. The actual number is not important but the ratio of FEV1/FVC is the number to look at. Mine is 64% but the reference value is 79% so I am quite a bit below normal. My research tells me the lungs lose elasticity with the sarcoid, so maybe that explains it, just a guess.

I have always been very active in endurance sports, running, cycling, triathlon, cross country skiing and so on. My performance in these activities is way down since the sarcoid. I can no longer keep up with guys that I used to leave in the dust. I have given up competing, I just get too out of breath when I exert myself. My O2 sat was always 98-99% before the sarc. Now it is 93% at rest and falls as low as 85% during exertion. Like someone mentioned, the rest value does not tell much. I recommend you purchase a finger pulse oximeter (they are as little as $50 now) and test yourself while you are exerting yourself. Before the sarc, my O2 sat never fell below 95% even at high exertion levels.

I am currently researching some of the other numbers on the PFT. Interesting is the DCLO and the ratio DCLO/VA which is a measure of the diffusing capacity of the oxygen from the lungs into the capillaries. Pre sarc my numbers were 160+% of the norm (or the reference value as they call it). Now I am at around 105% of the reference value.

I suppose to a Doctor, 105% of the norm looks great. But like someone mentiond, what is the norm? The only true norm is where you were at before the sarc. These numbers would indicate that my O2 diffusion is only 65% of what it used to be. 35% less oxygen would sure explain why I feel so out of breath when I try to exercise at levels that were easy before the sarc.

So to me these numbers mean that things have gotten really bad, and yet the Doctors tell me that my PFT's are not bad at all, and pretty much normal and not really changing much???

I guess the thing to do is to do a lot of research yourself, formulate some questions and ask your specialist the next time you see him. This is the stage where I am at now. I am reading everything I can find about sarc and the PFT interpretations and the Xray interpretations. I will see my Respirologist in about a month and will try to get some answers.

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YES - me too - a long history of normal pft results with extreme shortness of breath and advanced pulmonary sarc. It is one of the great mysteries of this disease. This is a pattern not an anomaly. My doctors insist on repeating this test over and over...

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Greetings! Thanks for the good information. Where have you seen the pulse oximeters for $50.00? We're just getting bills now for my hospitalizations in January and also bills for the testings I just had done within the last month - nuclear stress (sitting); echo; trans-esophageal and cardiac cath. I believe most of my SOB (med ab. for short of breath) is due more to the cardiac problems now, and those are probably due to the SOB that I had from the lungs, both from life-long asthma, and then the sarcoid.
I think they are preparing for a pacemaker, (hope they include the defib with it - I have a wide range in my b/p which goes quite low and can also go above where the doctor wants me to be); also cardiac rehab. Fortunately my arteries and veins are not blocked. God bless and strengthen! Great-gram

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Just do a Google search for Oximeter and you will find lots.

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