Confused messages from the Dr

[Hidin]

Hei All, I hope you all have a wonderfull day. If you don't mind I would like to share my story and frustration.

I'm a 35 year old man, started smoking at 23, (smoked at parties once in a while since 20) and gradually became a pack a day smoker. I quit smoking in september after i started having some chest pains that really scared me, about 3-4 weeks later i started having SOB that just wouldn't get away so i went to the Dr.

I wont bore you with the details, but now about 3 months later i have a clear X-Ray but obstructive spirometry (did 2 and they werent that different except more reversable on the second one, 4.23 to 4.77) - my fev1/fvc in both of them where around 60%.

Heres the thing, now i still have appointments coming up, but last time (after first spirometry) they said they werent sure what to do with my results (btw just peeked them on the monitor, i didnt get them handed out), they said i was not quite Asthma not quite COPD, they wanted to check for Pulm Hypertension, but the Dr said its a just in case thing, maybe because of some of the numbers, who knows.

However if i have 60% fev1/fvc can it be anything other than COPD?, I feel a bit lost here to be honest and the lack of feedback is starting to take over my life.

Appreciate any thoughts you guys might have and sorry for the rant.

Cheers

[Ern007]

Hi To answer you question a 60% fev1/fvc result could also be Asthma - You smoked for 12 years, I am not sure how that would affect you COPD wise being only 35.

You have an appointment "coming up" best if you sort it then - A link below to give you some idea.

mayoclinic.org/tests-proced....

[50shadesofgrey in reply to Ern007]

Hi sorry for jumping into this thread but I’ve had this test done and haven’t been told any % results was just told there wasn’t much improvement with use of inhaler!! Nurse said they can’t give how much loss of lungs I have.

[Ern007 in reply to 50shadesofgrey]

No wonder people are confused - used to be you would go to Asthma/COPD nurse and she would do a Spirometry test and a Peak Flow every time I went and I knew the results. Loss of lungs - Did she mean Lung Function? As that is what a Spirometry Test is for.

[Hidin in reply to Ern007]

Hei Ern007

Thanks for replying! I'm also hoping to get some clarity there, but i don't have to much hope based on previous experience.. Also it's just a meeting with a nurse so even if she want to order something, she can't, which means i would have to probably reschedule, etc - progress is pretty slow.

Could also be asthma since i think last time my fev1 increased about 12.7% (if my math is right), so just on the cutoff, however still obstructed after bronch, around 67% if i rem correctly

[Ern007 in reply to Hidin]

I think you need some answers, FEV1 at 67% is like the start of COPD - Even mild COPD can cause symptoms in some.

You can get mild breathlessness for example but now you have stopped smoking, things can only get better,

You smoked for I think 12 years - I smoked for decades before I was diagnosed with COPD, had another name then.

Your GP is probably just being cautious if he is having you tested for Pulmonary hypertension.

I hope you get all the correct info and maybe your GP will prescribe you with an inhaler like Ventolin to help with that cough. Good luck.

[teddyd in reply to Hidin]

I dont ask for figures etc from tests( that my choice)You said it was just a nurse and she could not order anything. I can only speak from my experience but I have had great advice and treatment from the respiratory nurse. She has the ability to prescribe and refer me me back to the consultant ,or xrays ECG etc. It does depends on what band they are on.

Maybe locality makes a difference to what they can do.

I hope you get the the support and advice needed.

[50shadesofgrey in reply to Hidin]

Hi what is fev?

[50shadesofgrey in reply to Ern007]

Hi ern, sorry didn’t realise you had replied, still getting used to the site. I’ve had a lung function test. The nurse who did it said she couldn’t say what percentage of lungs I have or lost. In fact no one has said anything to me, only the doctor from the hospital who discharged me and handed me over to gp. He was the one who suggested inhaler but said it was Upto me if I wanted to try it.

[Ern007 in reply to 50shadesofgrey]

Hi - Spirometry is the most used test for Lung Function - which is not the same as whatever percentage of lung a person has left.

Spirometry is a test to see how well or poor your lungs are functioning.

Read this.

advantage.ok.gov/CHCC/Publi...

[jillygirl]

Hi Hidin, sometimes these tests and numbers can be very confusing . I would ask for an explanation next time you go.

It sounds to me it could be a borderline case of copd. however I am no expert.

May I ask if you are still smoking. If you need any help in quitting I am an administrator on another community Quit Support, which is a brilliant forum and helped me quit 11 years ago. healthunlocked.com/quitsupport

I hope you get an explanation soon. 😊✖

[Hidin in reply to jillygirl]

Thank you so much jily :)! yes i quit in september!

Got a health scare with some chest pains and anxiety so came pretty easy for me, though the withdrawal hunted me for months. (except coughing funny enough) - part of me hope its just the gunk in my lungs obstructing since ive been congested and not able to cough much up since i quit, but i feel like that's probably wishfull thinking.

[jillygirl in reply to Hidin]

Ask if you can have some carbociesteine to help you clear your chest. x

[Hidin in reply to jillygirl]

Will do Jilly! Thanks for the recommendation

[peege]

You can always ask for a copy of your spirometry tests, also you might find results on the NHS app if you've signed up for it.Nice to 'meet you'. P

[Hidin in reply to peege]

I will try to ask them next time, honestly dont know why they don't just give them to you, thanks for the suggestion about the App, but since im Danish i doubt it will have it haha

Nice to "meet you" aswell :P!

[peege in reply to Hidin]

Hej !

[jackdup]

Do you know what your FEV1% of predicted is pre and post bronchodilator?

[Hidin in reply to jackdup]

Hei Jack! i think my fev1 was 80% before and 90% after

[jackdup in reply to Hidin]

I’m sure no expert but with that kind of reversibility I would think it points more towards asthma that COPD but I’m sure your doctors will come up with a definitive diagnosis.

[Hidin in reply to jackdup]

Thanks Jack, I'm also hoping more of that direction that the others. Time will tell, but the limbo is a trial for the soul for sure

[Mellywelly]

Rant away chook, the one thing that bugs anyone especially concerning their health is not having answers. It could be anything, and obviously something as you get short of breath. I would get back on to your gp you saw about it as they should know what to do about your results. What a cop out saying that to you. Let us know how you get on 😉

[Hidin in reply to Mellywelly]

Aww thanks mellywelly, i'm also dissapointed by the lack of effort from them (they just sent me home with pantoprazol and said see you in 6 weeks), i will def update once i know something!

[Mellywelly in reply to Hidin]

👍

[pasquino]

Could be the case of pulmunary hypertension , insist with your GP to have at least a scan to eliminate that possibility .

If, as usual ,is going to take MONTHS do yourself a favour and do it privately ; is not going to cost you a fortune , shop around and you will sort it out in a matter of days.

Best luck,

Mario

[Hidin in reply to pasquino]

Yea im thinking about it, the finances are not the greatest though atm so hopefully i can get atleast a referal so i can use my insurance - im def going to push them!

[Kate124]

hello. I used to get shortness of breath and for years they used to say spirometry test was fine. Then couple of years later they said I had mild COPD. Then few years later they added asthma. Turns out following tests after heart attack I have pulmonary hypertension. Because it’s been left for years the treatments don’t work on me. If PAH as been mentioned to you please ask them to test. It’s a life limiting disease that most doctors know nothing about. If caught early enough treatments will help. Fingers crossed that you don’t have it. I just wish I’d have been more insistent at finding out what was wrong and not let them fob me off.

[Hidin in reply to Kate124]

Hi Kate,

I am so sorry to hear that, hope your doing allright now atleast. I will def push for en investigation! it's a very scary disease..

[Biker88]

COPD is a name given to cover a range of respiratory conditions, primarily emphysema and chronic bronchitis, there are a lot of conditions that will result in low spirometry readings. I have four, pulmonary aspergillosis, emphysema, lung scarring and a leaky heart valve, all required x-ray, CT scan and broncoscopy to diagnose. A lung function test won’t tell what the cause is only that there is something wrong. It’s all to easy to tell someone that they have COPD just because of a poor spirometry reading.