They say I don't have COPD. What disease do I have then?
I had my first spirometry test in the summer of 2023, after I had suffered my first exacerbation.
The test should have shown that I did not have COPD. I was somewhat surprised, but did not pay much attention to it because it might have been the result of the exacerbation and shortness of breath disappearing.
At the end of February this year, 2025, I was again struck by an exacerbation. This one was worse and lasted longer. I still experience shortness of breath on a regular basis. I think my COPD has gotten worse.
In April this year, I underwent another spirometry test. And again, I was told that I do not have COPD, or at least not to the extent that I should be concerned. This time, I was wise enough to ask for a copy, which you can see attached.
I have now undergone various tests to look for the cause elsewhere. Everything came back fine.
The doctors are surprised.
I'm not. I'm sure there's something terribly wrong with my lungs. During these flare-ups, I feel like I'm drowning. If I don't have COPD, what disease do I have?
Does anyone else have experience with this?
And would anyone be kind enough to translate the spirometry report into layman's terms? Does it really say that my lungs are okay?
Thanks
Hi
. I really wish we could help, but we are not medical experts and, for your safety, we can't allow others to interpret your results. Have you doctors said what they believe is causing your exacerbations? Have you considered taking your results to another pulmonologist for a second opinion? Thinking of you. - Lori (Team Member) Hi Lori Foster,
The issue is not so much interpreting the test results, because several Swedish doctors have already done that. The issue is the fact that all these doctors conclude that I do not have COPD, or at least not significant COPD. However, I am still experiencing shortness of breath and have already had two severe flare-ups, one of which lasted a very long time.
All the symptoms point to COPD, or at least a lung disease.
I have undergone various tests, including blood and heart tests, and everything is fine.
So my question is primarily whether anyone else has experience with this.
Furthermore, regarding the interpretation of spirometry tests, before posting this question on the platform, I first searched for spirometry tests in the search bar and found several posts from people who mentioned their test results and asked for an opinion, even one with a large photo of his spirometry test. They received normal answers without any intervention from the moderators. So I don't understand why I'm suddenly being stopped now.
As for the photo that has been reduced to the point of illegibility, it contains parameters that I know absolutely nothing about. I don't know whether a particular value is good or bad. For example:
Pre % ref
FVC(L)=88.8%
FEV1(L)=103.3%
FEV1%=114.8%
PEF 107.6%
FEF50 110%
Let me rephrase the interpretation question this time.
Where can I find information to translate these scientific figures into language I can understand?
Thanks
Hi
.
My apologies. I didn't mean to make you feel singled-out with my response. Other moderators should always have responded in the same way to this kind of question, but it is possible that a post or two might have slipped through the cracks. The rule (rule #1) is in place for your own safety. Here is a link to the community rules if you are interested: https://health-union.com/community-rules/
You are not alone in your frustration with the image issue. We are working on it. I had to zoom in to see your image and, even then, it was blurry. Hopefully, we'll get that resolved soon.
Wouldn't it be nice if doctors actually took a moment to explain what any of these results mean? I wish your doctors had been more understanding and empathetic and that they had investigated further to determine what is going on. I hope you keep advocating for yourself and keep pushing for answers.
I have been trying to think of anyone who might be able to help you, but you might have to reach out to another doctor or medical professional if you really want to understand those figures. Do you have any friends in the medical profession who might help?
Here is a chart from the American Lung Association about spirometry scores that you might find helpful: https://www.lung.org/getmedia/d53c0e59-f3ab-435a-bcaa-a6a195b6b565/Spirometry-quick-glance-guide.pdf.
Here is another, more scientific, explanation from the National Institutes of Health: https://pmc.ncbi.nlm.nih.gov/articles/PMC6516140/.
I hope these articles help and that you eventually get a diagnosis that you can have confidence in. Warmly, Lori (Team Member)
Have you had your heart checked out?
Yes. My heart is fine. The blood tests were also fine. I recently had an X-ray of my lungs, nothing to see, also fine. Although this is rather strange, considering that I was diagnosed with COPD during a hospital visit about 10 years ago, which also included an X-ray. But anyway, this whole medical journey since I started having these flare-ups has been rather strange.
Since the beginning of March (since my last terrible flare-up), I have been sitting behind my hydrogen machine for 8 hours a day and have now built up my daily walks to 5 hours. I sometimes train with my Breather and follow an extreme mineral/antioxidant/vitamin regimen. Gradually, things got better and better, and now I am doing quite well. So much so that I have also started using my new inhaler again. At first, it only made me feel more short of breath.
I have an appointment with a lung specialist in two months. We'll see what he/she says.That's great news! I hope you continue to see improvement and that those x-rays remain clear. Keep us posted, if you don't mind. - Lori (Team Member) 
I remember when you first bought the hydrogen machine. Glad to hear it's going so well! How long did it take to start feeling a change? Feel free to share more about it in the forums as you did before: www.copd.net/forums. Maybe after you see your specialist? All the best! -Melissa, team member
Sorry. Not a five-hour walk. Five kilometres.
