Good Spirometry results, but still have symptoms!

Hello everyone,

I should probably set the scene first. I am a 26 year old ex-smoker with a pack year of about 1 year. I recently went to the doctors and told them that I was feeling worse after a chest infection. My doctor ordered blood tests, an X-ray, and a spirometry test.

The results of my blood test showed that I had a vitamin d deficiency, the results of my X-ray showed I had a mucus plug in my lungs (which apparently was there last year, although nobody thought it was worth mentioning to me!), and the results of my spirometry were good, much better than I expected. My FEV1/FVC was slightly higher than 92%, both of my FEV1 and my FVC were around 120%. My lung capacity was around 5.4L. (I'm just under 5ft 8.)

My problem is that all of my symptoms point to COPD, however I am being told by everyone that it can't be COPD! it's infuriating! I've been given Fostair and Montelukast for asthma, however these don't seem to have an effect on me. I personally doubt that it's asthma, as I've never had an attack, and all my symptoms started after I started smoking.

When I had my consultation with my doctor regarding my spirometry results I asked her if it could be emphysema, since apparently there isn't a ventilation problem with my lungs perhaps its a perfusion problem. She looked at me in disbelief and said "in her 25 years experience, I think it's highly unlikely to be COPD." I asked her for a referral to a pulmonologist or a CT scan but she said that she couldn't justify either with such spirometry results.

Anyway I'll give you my symptoms and ask what you think:

• Bringing up lots of bloody phlegm (the day I quit smoking, hasn’t happened since.)

•Having to stop for a break after walking for less than a mile. (This occurred straight after I quit smoking, things have approved since then.)

•X-ray saying I had “mild bronchitic changes in the base of the lungs.”

•An X-ray this year showing a mucus plug. (the exact name of the mucus plug began with ‘I’ but I can’t remember it.)

•A blood test taken 2 years ago saying I had borderline anaemia

•Sleep apnea (this occurred a few months after quitting, when I was 22. I recently bought an oximeter to measure my oxygen level during sleep, it’s been 95-99%.)

•Breathlessness, which occurs almost daily. Sometimes I feel like I can’t empty my lungs completely or get enough air in. Sometimes the feeling is prominent, other times it’s not as noticeable, however I don’t think it ever is completely gone.

•Sputum production which occurs every day. Sometimes it’s clear, sometimes it’s green or milky. I find myself clearing my throat a lot.

•Problems with nails. My big toe turned a yellowish colour and started to come away from the nail bed.

•CO2 retention? I’m not sure if I have this or not but I seem to be showing symptoms of retention, such has fatigue, headaches (sometimes in the morning or after exercise) muscle twitching. Tremor in hands, feet and fingers when I put them in certain positions.

•Frequent deep breaths, I take frequent deep breaths through the day. I feel like I can’t take little breaths, which makes me feel like I can’t talk properly.

•When I exercise strenuously I breathe out almost as if I am doing a peak flow test, I don’t know if this is a symptom or not.

•I’ve recently started to notice stitches in my side and heart palpitations.

•Sensitivity to air pollution, and warm air. I find it easier to breath in cold air.

I suppose my main concern is emphysema, but I know I can't tell if I have it without a CT scan.

So my questions are:

1.Could emphysema not show on a Spirometry?

2.Is it possible to have just chronic bronchitis?

3.Could it be bronchiectasis?

4.How quickly would mild COPD progress in a former smoker?

5.Should I keep worrying it’s COPD despite been told several times that it’s unlikely?

6.Could the fact that I am relatively young to have the disease offsetting my spirometry results somehow?

All this worry about having a killer disease so young is starting to affect my life. I don't think my wife can take much more of me talking about it.

Thanks for reading, I know it was a long post.

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20 Replies

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  • Hi Mr blue,

    I have read your post carefully. Your spirometry results are good, so is your oxygen level. The continuous mucus production and the mucus plug could point to mild bronchiectasis. This can only be diagnosed with a ct scan. Your GP cannot rule it in or out by xray alone. I suggest that you insist on a referral to a chest consultant who specialises in bronchiectasis. The consultant will then order a ct scan and tell your GP how to treat you if this is what shows up. They can also rule it out. Unfortunately, even if your GP alone sent you for a CT scan it is unlikely that they could see the bronchiectasis and very few know how to treat it.

    If you do have one of these conditions it is NOT the end of your busy and useful life. You will learn how to manage it and go on to have many more active years.

    Good luck and keep rockin'

  • Hi Blue, follow your instinct and exhaust all available tests. Put the smoking aspect aside as multiple lung conditions can develop in people who have never smoked. Sometimes without a significant smoking history, people's lung symptoms are not taken as seriously as they should.

  • I feel as if my concerns are practically ignored because of my age. It's driving my mental! But at the same time I can understand where the doctor is coming from, she can't refer my to a specialist when the diagnostic test for COPD says that my results are fine.

  • Hi you have had some good advice. I am wondering why you think it is copd? Your lung function (FEV1) shows that it is in the normal range. Copd is rare, but not unheard of in someone so young. Copd is an umbrella term which covers emphysema and chronic bronchitis and smokers or ex-smokers who are diagnosed with it are usually over 40. This is why your doctor is so sceptical that you have this.

    I am not saying nothing is wrong but it is very unlikely to be copd. Stillstanding's advice is sound though so I agree that you need a CT scan which should show up any problems. x

  • I may be completely wrong about COPD, but whenever I research my symptoms that's what comes up. I know that it would be strange for someone as young as myself to develop symptoms without Alpha 1 (which I believe I tested negative for.) but I've just followed the symptoms to their logical conclusion and COPD seems the most likely.

  • Anything is possible I guess but was once told that COPD is highly unlikely in a person that smoked less that a pack a day for 10 years, at least when it is caused from smoking, and you are well below that. Of course there can be other causes of COPD as well.

    It is normal to produce a litre of mucus a day as that is the lungs way of clearing out pollutants and other irritants, but generally it is swallowed without one even realizing it but some people are more aware of mucus in their throat than others. Whether yours is excessive or unusual a doctor would have to determine.

    It is always good to have everything investigated to be sure if there is something going on it is discovered and treated and COPD is certainly not the only lung condition.

    Good luck

  • Mr.Blue, although I live "across the pond" in Los Angeles, California my thoughts on reading your comment are that you need to get thyself to a pulmonologist. I have both IPF (dx in 2008-no symptoms until January 2016). The mucus is a strong indicator of bronchiectasis. Or it may be the beginning of IPF. The gold standard is a HRCT. The CT scan should clear up the confusion. You are fortunate to be young and there are two meds here in the US that are supposed to stop the progression of a lung disease. Good luck to you. Leslie N.

  • what is IPF?

  • Idiopathic Pulmonarty Fibrosis

  • Hi Mr blue,

    I am 39 now and last year was diagnosed with bronchiectasis and asthma. I have a history of asthma tho.

    I too was convinced I had COPD as I used to smoke and smoked for about 10 years off and on but quit many years ago before having a persistant cough and lots of bouts of bronchitis/chest infections etc.

    Now with treatment I still get bronchitis occasionally(which makes.me have a hacking cough and short of breath) and frequent chest infections and colds.

    I don't have COPD tho although.my spirometry at the time was looking like borderline COPD. An x ray showed some changes and I was then referred to a chest Dr who diagnosed the bronchiectasis and asthma after CT scan.

    To be honest I doubt you have emphysema/COPD as you are young and wouldn't have smoked for very long but understand your concerns.

    If you have long term shortness of breath on exercise/walking and symptoms all of the time then I would ask for a referral to a chest Dr to rule out anything else such as bronchiectasis.

    Hope I've helped but if you have any more questions then just ask

    HC

  • Hi Mr Blue,

    Sorry to hear of your problems. I have faced similar scepticism from my doctors after having some symptoms similar to yours though the reason I went in the first place was after having a dna test (privately) that identified I had a rare(ish) genetic condition Alpha 1 antitrypsin deficiency, that can lead to lung and liver damage. Damage is accelerated in cigarette smokers and can cause symptoms well before 40. (I am 58) After getting this result I went to my GP. I explained about the Alpha 1 and told them that I had been experiencing increasing breathlessness, which I'd basically ignored. The GP arranged a blood test to check my levels of Alpha 1, which confirmed that I was severely deficient. I had spirometry - my results were better than yours - no airways obstruction. The doctor assumed that I was just being over anxious. Fortunately Alpha 1 patients are supposed to be offered the chance to be referred to an Alpha 1 clinic - so I couldn't be fobbed off. As a first step I was referred to a local respiratory consultant. In the meantime I bought an oximeter and discovered that my heart-rate shot into the 170s after a bit of hoovering and 150+ on walking upstairs. When I saw the consultant he was keen to point out how well I was (based on Spirometry) - until he saw the results of my gas diffusion rate - it was at 64% of expected - suggestive of emphysema, pulmonary embolism or a couple of other lung problems. As a consequence I've just had a CT scan and a 24 hr holter monitor for my heart. I await the results. My money is on emphysema. I KNOW emphysema without obstruction occurs in some patients with Alpha 1 because I've read the original research papers, available online, by experts in the field. In your position I would want to rule out Alpha 1 - it's a simple, cheap blood test to check your levels and takes a few days. I hope that this helps.

  • I think I had an Alpha 1 deficiancy test recently. As far as I am aware I don't have it, but I'm not 100% sure.

  • If you want to be sure you could ask your GP what your blood level is. Normal levels of Alpha 1 fall between 1.1 grammes / litre and 2.1 grammes / litre of blood. My level is 0.13 g/l, which is severely deficient.

  • Where do I get an alpha one test in LA? Also your stats are scary. O2 levels very low and pulse way too high. Please let me know of your HRCT results. Have you looked into Interstitial lung disease or Idiopathic Pulmonary Fibrosis? It's genetic in my family but whatever gene it is no one knows? Take care, laddieday

  • Hi Laddieday,

    Your Doctor should be able to arrange a simple blood test to check your level of Alpha 1 and if necessary follow up with pheno/genotyping. If you don't want to go that route the Alpha 1 Foundation can send you a free finger prick test kit if you agree to their research terms (completion of questionnaires) . Lots of useful info on their site, whatever you decide.

    alpha1.org/Newly-Diagnosed/...

    As for me, my heart rate on exertion is worrying. It's much lower at rest - currently 62 ! The 64% isn't my oxygen saturation - that's well into the 90s - it's a measure of the diffusing capacity of the lung per unit volume. I expect the CT scan to show emphysema, which is a feature of Alpha 1 and is consistent with a reduced diffusing capacity. I will let you know how that pans out.

    There are some truly horrible lung diseases out there. I do hope you haven't inherited any of them. Take care, and good luck with the test.

  • Hi mr blue I'm a 67 year old woman relatively healthy but as you said had constant phlegm. I work in a small chemist and have over the years tried every cough bottle and otc tablets available. I was sent to respiratory at hospital and diagnosed with mild asthma. Like you in have never agreed with that diagnosis. Last year my coughing was getting worse ( not a smoker ) and doc sent me back to respiratory saying she thought I had bronchiectasis Consultant agreed that I needed a scan. Had a CT scan in October and was diagnosed with bronchiectasis I am on a trial of a prophylactic antibiotic which doesn't seem to be helping. I've had two more chest infections in the last 2 months. More steroids and antibiotics needed. Hope this helps as you'll at least be able to know my symptoms and compare yours Hospital respiratory are the experts

  • I would believe the asthma diagnosis if they gave me a methacholine challenge. So far every time I've had a spirometry the nurse has said "Your results are good, so it must be asthma." I'm sorry but if it's asthma why aren't my meds helping me? why do I have borderline anaemia? or sleep apnea? I'm quite simply not convinced by their diagnosis and until I see some concrete evidence to back up their claims I don't see any reason for me not to be sceptical.

  • Two FDA approved drugs are Esbriet and ofav. Esbriet made me violently ill gastrointestinal issues. Other drugs used forever are prednisone a steroid not good for long periods and a plethora of stuff. Ask any doctor and the answer will be as of now you will die from pulmonary fibrosis and we can't stop it. Sad sad sad.

  • What are the 2 drugs here in the states? I have IPF and was recently put on Celcept and prednisone down to 20mg, was 50

  • Hi Mrblue - sorry to hear you are suffering at such a young age. But as you realise that is why a CT scan is hard to justify at your age. Having read your symptoms - a very long list - I am wondering if the cause is something else in your environment. Some of the symptoms could be allergic responses, a couple could be carbon monoxide in your environment. If CO is at a low level it can lead to continuous symptoms that fail to suggest any single cause.

    You could look into home and work environments as well as anything in your diet. And check out your parents and their backgrounds - you might just have something genetic that is being missed.

    I doubt smoking is relevant at your age - I amd 74, diagnosed with COPD (emphysemia and bronchiectasis) 7 years ago. I gave up smoking, heavily, in 1993.

    Anyway, best of luck, Merry Christmas and I hope your new year is a good one.

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