Help, think my 'moderate COPD' diagnosis is wrong!

[Ladystark]

Sorry for the long post! Not really possible to explain in a few sentences.

Anyone ever been misdiagnosed with COPD? I think I may have been and would be very interested to hear anyone else's story if they were either wrongly diagnosed or told the wrong stage.

I have had a chest infection since March, had antibiotics and steroids which 90% cleared it but it's back. Because I was wheezing the docs wanted to do a breathing test when I was better, the appointment for breathing test was 3 days ago, I attended even though I felt awful incase I needed more meds. I told the nurse how I felt and she insisted on carrying out the spirometer test anyway. I questioned it as I knew you are supposed to be feeling 'well' when you do a spiro. Anyway she did the test, told me I have moderate COPD and sent me away with no support/information or advice (and a ventolin inhaler)

I was shocked to say the least, I am a smoker but have never had any symptoms before March this year when the doc told me I had a chest infection. I was very upset and made myself worse googling everything! The next day I called the docs again and got an appointment, the doctor prescribed antibiotics and steroids again (she said poorly controlled COPD or chest infection?) I feel 90% better again after 2 days on meds, I have a handheld spirometer at home, the day I was tested by the nurse I was blowing 200, now I'm blowing 400 (at my first docs app he said he'd expect me to blow 450 if I was healthy and 'normal'). Surely if I had moderate COPD this wouldn't be possible?

It might sound like I'm in denial, maybe I am. I could kind of understand a bit of lung damage, I actually thought I might have asthma as Iv'e started wheezing if I drink wine which I also mentioned at the docs. I felt like the nurse wasn't listening to me, she shot me down telling me this was her area of expertese and was very keen to tell me I had copd. I know if I did the test again now I would do better, and I'm not quite 100% yet. It's a possibility of course that she's right but if I do have it I'm sure it must be very mild as I'm usually symptom free. The nurse said she'd see me again in 3 months to check how I'm getting on with my inhaler, I asked if she'd repeat the spiro and she said no! Not for another year, so I have this hanging over me for 12 months.

Is it unreasonable to insist on another test when I feel better? Also when diagnosed with COPD don't they usually consider other factors not just the result of a spiro test?

Any input would be aprieciated, Iv'e been going mad with worry the last few days, maybe I'm wishful thinking but it's just come out of nowhere! Thanks in advance for any help and advice.

Edit,

Thanks to you all who read my post and replied. There have been some changes to my health since I posted this. I was feeling very bad again so back to the doctor who gave me more antibiotics and steroids. I seemed to improve for a while (I think its the steroids that help) but have been waking up wheezing and breathless quite regulary. Also had awful acid reflux recently which has worsened after each course of antibiotics. I was researching how to control acid reflux last week and discovered that it can actually trigger asthma, basically acid reflux at night can irritate the nerves in the esophagus causing the airways to tighten, also acid can actually be inhaled into the lungs again causing severe wheezing and breathlessness.

When I read this it was like a light switch being flipped on! Everything about my symptoms suggest that I have asthma, triggered by acid reflux/GERD.

On Friday I had a curry and two glasses of wine and within an hour I couldn't breathe. It was really severe and very scary but kind of confirmed to me about the reflux theory. The food and wine really irritated my stomach/esophagus and i reacted instantly.

The antibiotics have been making the reflux 10 times worse, which has made my breathing worse, which has lead to more antibiotics and so on. It's a vicious cycle which I can hopefully now break.

I have been to see my own doctor today who agrees with this theory and has put me on high dose omeprazole to stop stomach acid production which should mean nighttime wheezing etc should stop hopefully within a few days. He has referred me to a specialist so I think they will do some more tests to confirm.

It seems I could have been right about my diagnosis being wrong, although that's not certain yet. Unfortunatley it seems now I could have GERD, asthma and COPD! I still hope I haven't got COPD although GERD itself can be a very serious lifelong disease.

[Schmicter]

One factor that is always included in the diagnosis as well as the spiro test result is whether you smoke. It is possible to not have symptoms, but wheezing is one, as well as chest infection. Here in the states if you are a wheezy smoker with a chest infection, COPD is automatic diagnosis. There really is no way someone who smokes for years can blow anywhere close to what they consider is normal never smoker of your age and height.

[Ladystark in reply to Schmicter]

Thanks for your reply,

I'm relying on google for my info as the nurse who diagnosed me gave me no help at all. Iv'e read that your general health and other symptoms and possibly further tests should be used to diagnose, not just a one off spiro test.

I have only wheezed with the recent chest infection and since then have cut down smoking from 20 a day to 5 a day. Wheeze has almost gone. I'm just confused how one spiro result when feeling sick can be used to tell you you have moderate COPD. Obviously am hoping it's wrong! And as I said on my home spiro I'm getting 400 today, close to the 450 the doc said is normal for my age and height. I'm expecting it to increase again over the next couple of days. If it does get up to 'normal' I'm thinking I should be retested.

[Schmicter in reply to Ladystark]

I was diagnosed about 10 years ago moderate/severe emphysema and continued to smoke for a few more years. I was pretty much symptom-less...or thought so. I have now since quit (over 2 yrs) and now I know breathing was and is more compromised when you are a smoker. I am always surprised and somewhat amused by people that have smoked for years and are just"shocked" that they have been RX'd with lung disease.

[Ladystark in reply to Schmicter]

Well done for quitting, it's tough! As I said I could understand some slight damage but yes I am shocked that I could be diagnosed 'moderate' copd from one spiro test when I'm ill, and not considering any other factors such as general health/fitness/further tests. I don't really see why that's amusing to you.

[Ladystark]

Thanks RedSox, I am definitely quitting smoking after this (on 1st August)! It's a wake up call either way. I usually feel well/normal, I ran 10k about 6 months ago. It might be denial on my part but it seems very a very sudden diagnosis by a nurse who didn't consider any other factors including me feeling crappy on the day she tested me. It's just so confusing! My usual doctor who treated me in March is away, I'm thinking I want to see him again when he's back, even if it is to confirm the diagnosis. It's scary.

[Ladystark]

Thought I should also mention in March the doc tested my blood for infection which came back positive for high white blood cells and high platelets which confirmed the infection.

[Fruitcake100]

In my GP practise they won’t do a spiro if you are not well in any way. When I had my first one I was diagnosed with low to moderate COPD, the last one I had improved and it was very low, and she said she was not even sure to diagnose it as COPD. I smoked untill I was 4o then gave up, I am now 73. Good luck, give up the smoking and do breathing exercises to keep the lungs flexible, push through excercise untill breathless for a few minutes every day, eg, walk fast up a hill, to expand the lungs. When you get colds take a pills to dry it up, the worst is getting post nasal drips particularly at night, it can then go on to your chest and cause infection.

[Ladystark in reply to Fruitcake100]

Thanks for taking the time to read my post and reply, I thought a spiro should not be done if you are unwell which is why I'm questioning the diagnosis. I am giving up smoking! Plus more excercise too, it's really given me a wake up call that i needed. I hope if I do have copd it's milder than the nurse has said.

[christina1947]

Hi lady stark it sounds to me your at a stage when u can come out on top do all u can to help yourself and I mean everything. In 12 months go back to that nurse for a spirometry and ask her to change your medical records accordingly JUST DO IT. And take care xxx

[cfarris412]

Listen to me, go have a CT Scan on your Lungs for this will tell you all you need to know with no second-guessing. My LFT was normal like you but my CT scan tells a different story. If you still smoke Cigs please stop and if you can't Vape instead of smoking. Eat foods that contain Vitamin A. I take Moringa powder, it's rich in Vitamin A and other great nutrients for lung health!

[Ladystark in reply to cfarris412]

Thanks for replying, I had a chest x ray which was normal but I know a CT is better. I'm surprised it isn't used as part of the diagnosis anyway. I will ask for a scan but I doubt the doctor will agree. I'm feeling better, down to 5 cigs a day and quitting altogether in 4 weeks! My home spiro is reading 410 (450 is normal/100% for me) but this is rising every day as I'm slowly feeling better. I know that the FVC is important too but I can't measure that at home. I did'nt know about vitamin A, so thats a great tip for me, I'll definitely be taking that as well as some other supplements. I have learned I need to take care of myself which I haven't been doing. Most importantly quit smoking! My immune system is shocking due to neglecting my health. It wont happen again, huge wake up call I just hope it's not too late!

[cfarris412]

Never too late to quit! Reg x Ray won't show it by the way at least that's what my pulmonologist told me.

[jackdup]

The 400 and 450 you mention, I assume that is your PEF? It is your FEV1 and FVC that is used to diagnose COPD. My PEF was close to normal as well and my FVC was also normal but FEV1 was lower than it should be. You should ask for a copy of your spirometry test results and if you post them here healthunlocked.com/blf/posts than someone can help you to interpret them. Ideally your doctor should go through the results with you as no one here can make a diagnosis but can only explain your spirometry numbers.

[Ladystark in reply to jackdup]

Hi Jackdup, the 450 is what my FEV1 (uk measurement, may be different) should be and as I said I was at around 410. The more I've thought about it the more unhappy I am about the nurse insisting on testing me while I was ill. There have been some changes to my health since my post which I will add to my post today.

Thanks for the link however I don't think my spiro results would be accurate anyway.

[jackdup in reply to Ladystark]

Where are you located? We have people here from all over the world so someone would know if it needs to be converted. All the ones I have seen posted are in litres and normal or predicted is based on your gender, age, height, and ethnicity. I am a male 71” (180 cms) tall Caucasian and my predicted is 3.51 litres so not sure what units yours might be in. My PEF predicted 516 litres per minute or 4.42 litres per second so that is why I assumed the 450 you mentioned were litres per minute.

If you have a copy of your results it should show the units it is being measured in. Your handheld device should also show the units be measured. Mine says L beside the FEV1 reading and L/min beside my PEF. What is the brand and model of you handheld device?

[pepapod in reply to Ladystark]

Hi 👋

I was diagnosed after a chest infection 3 years ago based on spirometry test done 2 weeks after my infectious fever had subsided. I did not feel well when I went for the spirometry. When it was over, they gave me a script for an inhaler, a moderate copd diagnosis and sent me on my merry way. Since they were so nonchalant, so was I. I kept on smoking, but I kept getting chest infections until I quit smoking 13 months ago. No infections since then. Breathing while exercising is harder now than 3 years ago. I’ve no doubt that I have emphysema, not sure what stage I am really at now, but when out with friends who are my age, I am always the slow slow slow one. The smokes have hammered my lungs for sure. Point being - please do quit smoking, regardless of the test. I’m glad you have set your quit date. Best wishes to you on your quit!! 😁

[Perrythomas]

Don’t let health professionals bully- my GP practice nurses always know more than me about how I feel! Research research research - good luck 💕

[Perrythomas]

Always best to do your own research- docs and nurses in GP surgeries are not best placed to be “experts” in everything and there are so many different things going on with COPD - good luck

[Kristicats]

Did you get a Re test? You could ask for your fev1 result on your spirometry test (as a percentage)which will estimate at which level of copd you have( if you have it)