newly diagnosed and confused - British Lung Foun...

British Lung Foundation

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newly diagnosed and confused


Just been diagnosed with emphysema. am 58. female smoked for twenty years. so my own fault. had issues with lungs on and off for years. ten years ago was told had this. then three years ago on routine lung function test was told lungs great I had X ray and told no emphysema. now been told have it. doc said I don't need a lung function test. He can't tell me what stage am at and just fave me inhalers. si how can I get more info on my diagnosis. ie stage am at help to stop smoking. Help with lung exercise. etc I work full time but this knocked me so bad I had to take time off work

10 Replies

Hi I am sorry to hear of your diagnosis and I emphasise with your shock. I don't know how your doctor can diagnose you with emphysema if your x-ray is normal and s/he won't do any tests, Maybe you need to see a different one?

The definitive test for a copd diagnosis is a spirometry where you blow into a machine several times. This will give your a firm diagnosis and your lung function (FEV1). If you are under 90% then you might have emphysema. You need to tell your doctor that you want this test.

Once you know your lung function you will know what stage you are at. To be honest if you do have it from the sound of it you will only be mild. With care and a healthy lifestyle you can slow down the progression for many years yet and old age will probably get you well before your illness does.

If you were diagnosed ten years ago then your COPD could have been mild. You can have a normal x-ray and still have emphysema. People with mild emphysema can have normal spirometry tests due to the fact that the obstructive element is not severe enough to show on the test. You need a CT scan as this is far more diagnostic than spirometry. I think your GP is basing his actions on your diagnosis 10 years ago. Emphysema does not go away and I think what's happened is due to having normal spirometry you were told you do not have COPD because at that point you did not have obstruction. However the emphysema was still present but not severe enough to show on spirometry.

Stop smoking please I am now on oxygen please please don't do this to yourself good luck


Go back to your doctor and ask him what he's talking about. i mean explain to you why he says you have emphysema when all you tests say theres nothing wrong with you.

you havent said why are you having all those tests for?

My last x-ray was normal, it showed no hyperinflation or damage etc. However my CT scan did show quite severe damage. Emphysema does not always show up on x-ray. Due to the fact that the lungs have a certain amount of over capacity they can be damaged but you can still have normal spirometry. Did you have a CT scan ten years ago? As this is the only definitive way of diagnosing emphysema. Spirometry cannot on its own diagnose emphysema. It can show you have a lung problem and if you have obstructive element when breathing but cannot give a definitive diagnosis of the cause. Spirometry can be affected by so many factors that it is very easy to jump up from mild to normal and vice versa.

Hidden in reply to Badbessie

first hospital: blood test..xray.. spirometery = copd + asthma.

second hospital: just xray = copd.

and number 3 hospital: full lung function test = copd + asthma .

i asked to have a ct scan at two of the hospitals but was told there was no need for that as the tests i had done are 100% correct.

all the hospitals are private and as most people say private hospitals would be happy for you to pay have to think about it🤔

Badbessie in reply to Hidden

Lung function tests and spirometry can diagnose Asthma and Copd. However they cannot specifically what as caused your Copd as a number of diseases fall into that diagnosis. My last x-ray was normal however CT scan showed damage caused by emphysema. What disease under the Copd blanket have you got and how was it diagnosed? Depending on where the damage is also dictates what treatment options you can have. In some cases surgery can be an option. Your hospital as given you a blanket diagnosis without giving you the cause.

lizaspo in reply to Badbessie

I had xray that is all he said emphysema gave me steroid inhalers no lung funct

Hidden in reply to Badbessie

as i said it was 3 independent hospitals and 3 independent specialist that diagnosed me with copd.. chronic bronchitis and emphysema +asthma.

they couldn't tell me what caused it... but as i was a smoker...that had to be it🤔🙄😏

i dont think a ct scan can tell you what the cause was for copd...this is the frist i have heard of that.

all the treatments used are ..try this one and see how you get on. i think we know some work for some and not others.

Emphysema does not always show on x-ray. As I have already said my last x-ray was totally normal. But CT scan showed emphysema and some bronchitis. I perhaps should have said that that CT shows more clearly the level of damage and which areas are affected. I have been told that my level of damage in places is severe. I asked why my x-ray was normal and my consultant stated that damage from emphysema does not always show due to the limitations of x-ray. I am stage 2 moderate 57%. I can only assume that your damage in an area that showed on x-ray IE hyperinflation and dark spots and your specialist was happy to give a diagnosis from that. Your Copd is caused by your emphysema and related diseases. Due to the CT scan I know there are surgical procedures that can help me. Going on just my x-ray result I would still be in the dark about my options.

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