For those with Mild Disease or symptoms seeking a diagnosis

[ck101]

This is a predicament I found myself in many years ago. A history of smoking and asthma with ongoing symptoms and a feeling all is not well or as well as before. I trawled the web looking for answers and spoke to many doctors and respiratory therapists. Nobody had answers.

This post also relates to a previous post of mine where I pointed out that doctors don't always give you the full story. (See "there's no use in diagnosing a serious anxiety provoking disorder in a young non-smoker who btw suffers from health anxieties and who they believe should not have any overt symptoms")

Last night I found a post on the COPD international site that I'm convinced is either written by an expert patient, an RRT or a medic. It's sums up the approach to dealing with those with mild disease and maybe helpful to those of you seeking answers. This was posted as a response to a young smoker in his thirties with all the hallmarks and symptoms of early COPD.

"Sounds like mild COPD to me. Spirometry alone often does not capture emphysema in the younger cohorts. This is because doctors are trained to make the diagnosis when the FEV1/FVC is bellow 70% however this measure decreases with age and therefore someone in their early 30's should really have a much higher value, like 80-85%. This is coupled with the fact that spirometry alone only measures airflow limitation, one part of pulmonary mechanics, which is largely a factor of airway function - not the alveolar damage and hyperinflation of emphysema.

The way to check for emphysema and early COPD is with a full PFT including lung volumes and diffusion capacity in addition to a chest CT. Doctors are also taught that COPD is a disease of middle to late life when in reality the disease begins the moment one starts smoking or encountering other risk factors. Some people are more sensitive to COPD symptoms than others and may be more coherent to mild emphysema once they become aware that there is some underlying problem. Others, mostly those who are very sedentary, won't notice COPD or emphysema till it's much more advanced. Of course this is all confounded by the fact that you had per-existing asthma and it is easy for a doctor to blame your symptoms on that alone when you could be presenting with a more complex COPD-asthma overlap syndrome.

Then there's anxiety which by itself can create a sensation of breathlessness so that's another possible explanation your doctors could be considering. Chest x-rays are not always sensitive to early COPD and even if there were some mild hyperinflation many radiologists don't mention this because they know it is a very subjective interpretation until the disease becomes much more advanced or they lack prior imaging studies to compare to.

Then if it is COPD, there's really not much that is done to treat it in the mild stage other than smoking cessation and since you've already done that perhaps your doctors figure that . there's no use in diagnosing a serious anxiety provoking disorder in a young non-smoker who btw suffers from health anxieties and who they believe should not have any overt symptoms. If you do get a full PFT, ask for a copy of the results and pay close attention to the FRC, FEV1/FVC, FEF25-75, ERV, DLCO, and DLCO/VA. You'll have to do some digging to find out how to interpret these results but it's not too hard - some values are better lower than normal, some higher, ideally to be unambiguous everything should be exactly 100% predicted, but there is a particular pattern COPD follows and the differences may be subtle in mild emphysema. If you can't get a CT or at least a full PFT maybe try for a Cardiopulmonary exercise test. Even the most subtle underlying lung or heart disease will be demonstrable on CPET and should then provoke further diagnostics to explain such.

If these results still don't explain things I would wonder about GERD or maybe an extrathoracic airway problem such as vocal cord dysfunction since you mention chest tightness and trouble breathing in, respectively.

COPD'ers have trouble breathing in but most of there trouble is breathing out due to decreased pulmonary elastic recoil and what's referred to as air stacking."

[beeperoni]

Good Morning CK,

That was an interesting, but true, post. I am stage II, but I feel as though I can't breath in, not out. But some have told me that this is because my lungs still have air in them. I was told there was no sign of emphysema on my CT's, but I also do not have much of a cough. Some, but minimal and not always productive. It would be nice if spirometry was a standard part of one's yearly physical, especially if they smoke. This I believe would make a huge difference and could potentially help save lives.

[freefaller in reply to beeperoni]

Yes, when we have other diseases like asthma it would be good to have regular checks with various tests wouldn't it? Peak flow and checking to see if you can take your inhalers correctly is not really enough in my opinion. Our surgery stopped it's asthma clinic years ago. for a few years I was encouraged to go every 6 months and was harried about attending and as I worked part time and the clinic was held on a Wednesday - my change over day work did not like it and then all of a sudden - cancelled. I realise funding has a lot to do with this too but maybe we should be offered something more .

Sian

[1968]

Very interesting and some what accurate, I'm stage one very mild, no medication, fev1 of 79% in 2012 then in 2013 81%, been no change in my bullous emphysema since first diagnosed back in early 2010. Docts recon I was born with it, they have said no need to worry keep of the cigs and get a yearly flu jab. I've had numourse chest xrays andna very thorough ct scan, also seen a long specialist at the hospital.

[sbestwick in reply to 1968]

can you tell me what your first symptoms were ?

[freefaller]

Very interesting.

[beeperoni]

I wish I could say I was diagnosed as mild. To be diagnosed at moderate (64%) at only 41 scares me. Makes me wonder how long I've actually had it. If I'd a been tested at 30 (drs knowing I smoked) would it have made a difference...probably. I think if one smokes, spirometry should be included as part of annual exam (especially because it's quick, noninvasive and cheap).

[sbestwick in reply to beeperoni]

can you tell me what your first symptoms were - before you were diagnosed

[ck101]

Yes without doubt those 11 years would have made a huge difference but....

There's always a but;

You would have been tested, the test would most likely have showed minimal decline ( or something slight on the MEF 25-75 which is ignored by doctors), you would most likely have felt good and not feeling the ill effects of smoking, like me would have continued on smoking.

Sadly this is what happens. We only give up when we feel something is up, for some this happens early, others later.

[casper99]

This is what happened with me. I noticed slight breathlessness about 9 years ago. I had a spiro test, the results of which the nurse said were 'Not much lower than a none smokers' and an Xray. I was being treated for chronic depression and anxiety at the time.

My doctor just said I had to stop smoking because if I continued, the breathlessness would get worse and I could end up not being able to do anything for myself in the future. I asked about the xray and he said it hadn't returned but, they would not be repeating it.

I stopped smoking for 2 years and then started again.

The breathlessness got worse and I had another Xray because, they said, with my autoimmune disease, there were certain lung problems that could be quite serious. I didn't have what they were looking for but, I was advised to stop smoking.

When the breathlessness became much more noticeable, I had a CT scan in 2011 which confirmed emphysema.

I think your post fits my experience perfectly.

[pitbull]

How interesting, I am thinking I need to visit my doctor for some explanations.

My story started when I went to help my daughter change a wheel on her car and after I was gasping for brreath, my wife drove me to the docs who did some tests and diagnosed Asthma prescribing inhalers, that was 5 years ago.

2 years later I move home to a new county and am looked after by the nurse who referred to my condition as COPD, I took this as a slip on her part but in the last year I have twice had to get antibiotics to clear up a cold which resulted in a chest infection, the last time I went to a walk in centre and there the doc quized me about the symptoms because I called it asthma, she looked at the drugs I was taking and examined me and said it was more likely COPD.

So I have never been formally told I have COPD, I found out by a slip of the tongue, I had some lung function tests done at hospital, but was never given any indication as to whether the results were good bad or indifferent, I thought he tests were part of my sleep apnea treatment and referral to a new treating hospital. I also have CLL (Chronic Lymphocytic Leukaemia) which I put my chest infections down to.

To say I am confused is a bit of an understatement and I need some answers, I also need to be told what stage my COPD is and what the prognosis is.

I do sometimes find myself gasping for air when I sit down, especially when I first get into bed and put my CPAP mask on if I have not calmed my breathing down I find myself gasping quite baldly.

Rant over keep well all

Kirk

[katieoxo60]

Thank you for your post , that sums up how it is often. I went through tests myself due to suspected cancer, then realized as they cleared me of cancer there was no further investigations going to be done to establish a diagnosis, I was labelled as over anxious, it took a lot of complaining to get the final diagnosis of COPD and the treatment was very vague. As you say most doctors treat early stage with maybe ventolin and give up smoking. However it has been discovered that PR can work wonders if given in the early stages of the disease also. Many places in UK now have ongoing exercise programmes to maintain lung and heart health but they do often require GP referral . So we should recognize there have been changes in approach to airway diseases and encourage our doctors and nurses to accept this and offer as many options as possible. I agree with you figures on an average scale do not always depict an individuals state of health, my Gp said there was no way he would have referred me with the breathing results I had, but I do have COPD and realize there could be thousands out there in similar positions.