COPD and confused.

[blizzard2014]

I have two doctors fighting over whether or not I actually have COPD. I had a lung function test that showed an FEV1 of 49 a few months ago. My FEV1/FVC ratio was really elevated. My FVC was also as low as my FEV1. I have been perplexed about this for a while, so I requested another test from my PCP who also happens to be a Pulmonologist. The first test was a full on (in the booth) lung function test. The second test was done in the doctors office by his nurse on a hand held machine.

I blew an FEV1 of 75 on the second test. There were a few other tests at the other doctors office that were also hand held machines where I failed as well, and one I passed as completely normal. I failed the reversibility test for asthma and I had a really low DLCO of 46. I have other underlying lung problems from Pulmonary Embolisms, and I think I might have had more PE's at the time of the first test. But my PCP said that full on Pulmonary Embolisms would not cause low FEV1 and FVC.

I had an HRCT scan that showed normal lungs (but I hear that these scans can sometimes miss mild COPD/Emphysema). I have been a smoker for 15 years. About a pack a day on average. I quit three years ago after I started getting physically I'll from smoking. I will literally throw up and become sick and lethargic for 24 hours off one cigarette. I take it this is a good thing, as it has been a great motivator to stop. I have developed an aversion reaction from the last one I smoked 2 years ago.

All that said, my FEV1 still appears to be in the mild COPD range; but my PCP has dismissed my results as normal. My aunt died of COPD at the age of 56. My Grandmother who never smoked a cigarette in her life died at the age of 86 from COPD. I think it is genetic. My aunt probably died faster because she smoked 3 packs of cigarettes a day. She was also schizophrenic and did not stick to a treatment plan. She died in her sleep, merely a week after coming off a ventilator in the hospital. The ER doctor was surprised she even made it out of the emergency room.

My FEV1has gone up 25 points in 3 months. The only thing I have done is to begin to treat my low Vitamin D levels with 15000 IU's of Vitamin D per day (which I have read can cause FEV1 to rise higher) and I have been using 2.5 milligrams of Stiolto twice per day. The second doc wants me to repeat another full pulmonary function test. My PCP says I don't have COPD and to stop the meds because my lungs sound clear. I have not been having the same shortness of breath (or air hunger) that I had four months ago when I complained. My blood was thick though and I might have had clots. But since testing came too late, we will never know for sure what was going on.

I do notice that the inhalers help with my chronic chest pain and chest tightness. I sometimes choke at night when laying down, but I also have moderate/borderline severe sleep apnea. What do you guys think? I know an FEV1 of 75 is quite low for someone who is in their thirties. I am just glad that the first test was a compete fluke, or that the meds the doctor gave me to preserve lung function are actually working. Any advice would be greatly appreciated.

I also had mid asthma as a child. I had to go into a steamy bathroom in order to improve symptoms. But I never needed medications.

Thanks,

Blizzard

[LORBIC]

Hi Blizzard; From what you are describing are what we feel when we have COPD, the test in the booth is the most accurate test their is, the one in the office just lets the doctor know if you are getting worst or staying the same. If the medicine is working it will show an improvement. If you haven't been checked Alpha 1 then you need to do, with COPD in the family your breathing could be caused by this. You could also be having Angina which will cause the chest pain. I have COPD/Asthma, pulmonary hypertension and heart failure. I have had PE and now take Xarelto daily to prevent another one. I also have Angina caused by all my breathing issues and now have to keep Nitro-Stat on hand.

If these two doctors can't agree on your problem find another pulmonary doctor and get another opinion, it never hurts to have more then one. Take care and keep us posted on how your doing.

[rubyred777]

Welcome to the site blizzard. Lorbic has given you excellent advice. The test in the booth is the most accurate. What was your fev1 on that one? How's your oxygen level when they put the oximeter on your finger? Ruby🌹

[blizzard2014 in reply to rubyred777]

My FEV1 in the booth was 49. My oxygen is good while resting. It is always in the high nineties. It was good when I had the blood clots too. But at night it goes down into the low eighties. Mostly because of my sleep apnea. I also worry about the low DLCO at 46. I don't see how DLCO can be low and lungs look normal on HRCT scan. It could be vascular issues in the lungs. My test also show some hyperinflation and gas trapping, but this was not picked up on the CT either. What doesn't make sense if that my FEV1/FVC ratio is really high. I think it is 80, which is considered to be too high for me to have an obstructive disease. I think the FEV1/FVC ratio needs to be 70 and under. Perhaps some sort of restrictive disease if pushing up my numbers. If not, then the testing equipment could have been wrong.

[blizzard2014 in reply to rubyred777]

My oxygen saturation is completely normal during the day time. It only goes low at night. But I have a moderate case of sleep apnea. My oxygen level was completely normal even when my lungs were full of blood clots. The test that showed the FEV1 of 46 was the one inside the booth. The other test from my GP was just a handheld device hooked up to a printer. It showed an FEV1 of 75, but it did not measure FVC. The lung doctor thinks it is a combination of restrictive and obstructive because my FEV1/FVC ration is high at 90. Obese patients can have a restrictive lung pattern from being heavy and having decreased breathing muscled. Then the normal lower TLC that should be present in a restrictive disease might be masked by hyperinflation with a high TLC of 105 percent. It's all confusing. I might get one last test and then forget about it. It drives me crazy trying to figure it all out. Thanks for the support.

[Muustangman]

Well I would have the test done but somewhere new with a different if possible Dr, there not all the same , if your tests were that bad I think your sob would be much worst and very noticeable , gagging from my own disease , I get them every three months in office type that is I have only had one done in the booth as I remember I'm on oxygen 24/7 @ 6 lpm and I did get really bad because of not following the treatments when I was just a little sick , which ended up putting me in the hospital for three months vented and induced coma for six weeks it can happen fast get a oxygen saturation tester from the drug store and keep and eye on it low oxygen will cause high carbon and will give u and idea if something is going on there not but about twenty bucks , this way u know because I was in the sixties when it happened to me but it was showing signs I didn't pay attention to and ended up with light blue skin and lips everyone would say u look blue and I just would make fun of it , but it's away for u to know if your getting worst I smoked probably fourty years one pack a day but worked in places like GE, and other professions that were dusty and that makes it worst my fev1 was 62 and was 42 when I was sick last month but about 70 is normal for me my oxygen is in the 90s at rest but go's down quick when exerting so I turn it up when I exserise I'm stuck in house most the time at this stage I'm 63 and this sucks it's really a horrible disease and depressing so make sure I do what ever u can to prolong the progressive action of it stay away from sick people and watch out for those sick kids , it seems when u get sick it's twice as bad , well good luck I know I can help to much but try and stay health ,

[arianne1234]

I've been copd and asthma moderate found out a month ago and got depressed and start having a catching up breath for a week but I think just because of my depression I've been active running workout6 days a week . But i stopped all that after I find out I have asthma and copd and I called my doctor and she said as long you doing exercise and stop smoking it will stay in moderate and I feel relieved.. Now I'll back in running and lift weights . And never feel short of breath since all I can say sometimes it just in our mind and when you felt depressed just stay positive and I'm thinking to get another test make sure I really have copd

[blizzard2014]

Thanks for the advice Mustangman. I have other diseases that might take me out before the COPD. I'm just upset for getting two extra CT scans because of the failed lung function tests. I feel like I got the radiation for nothing. I have shortness of breath, but it could be from anxiety or from my blood clotting disorder. If it was just COPD, I would not panic as much. Every time I get a pain in my chest, I automatically think it's another blood clot. It is very taxing on my mental health. I hope you're feeling better. Working in a factory can also cause respiratory problems. My grandmother never smoked a day in her life, but she died from COPD from working in a rubber factory. My aunt also died at a very young age from COPD. She smoked though. I wonder if it runs in the family. I do have some dependent scarring on one of my CT scans, but the latest one does not show it. So it could have been from the blood clots.