unsure about diagnosis.: I am 77 and... - Lung Conditions C...

Lung Conditions Community Forum

52,253 members63,086 posts

unsure about diagnosis.

Cruise1 profile image
25 Replies

I am 77 and just had spirometry test and been diagnosed with severe COPD. Chest X-ray normal, sputum normal, oxygen 99%., no crackles or wheezing. No breathlessness just morning and evening chesty cough a few times which sometimes means expelling clear phlegm but not always.

I have not been prescribed anything but told I will be reviewed in 3 months and if I get a chest infection to get antibiotics.

I am not convinced by the diagnosis as things improved a lot after starting to take antihistamines a few weeks ago ( my wife’s idea) after waiting so long for spirometry and consultant appointment.

I have recently been diagnosed with low haemoglobin and iron deficiency anaemia and wonder if this is related to the problem. Tried discussing it with consultant to no avail.

25 Replies
teenieleek profile image
teenieleek

With the caveat that no one here is medically trained it does seem a bit odd. Usually severe COPD would involve a degree of breathlessness. Breathlessness and cough are often why the patient consults a doctor in the first place. However day to day I’m not obviously breathless and don’t cough and I am allegedly in the severe category. (I do use a daily inhaler though which helps prevent breathlessness). When it manifests itself for me is on any kind of hill or incline and then I struggle. How are you on a hill or for example three flights of stairs? This is a strange disease in that it can affect people very differently who have the same level of results based on spirometry.

Cruise1 profile image
Cruise1 in reply to teenieleek

No hills near me and I live in a bungalow. Stairs not a problem nor exercise bike.

peege profile image
peege

Hi, Did you get full lung function tests at the hospital consultant's? Sorry I don't know much about copd although from being a patient member here for nearly 10 years I've learnt that spirometry is a good diagnostic tool for it. The majority of dodgy lung members agree that a healthy weight, healthy diet, appropriate exercise, avoiding dirty air/fumes (wear a good mask for diy), avoiding catching cold n caught, get your covid and flu jabs plus doing breathing exercises can slow down the progression of the disease.

Have you smoked in your life or worked in poor environments like mdf dust?

Important to get rid of that lung mucus daily & keep an eye on the colour, turning dark yellow or green indicates an infection which will definitely need antibiotics to clear to avoid lung damage.

0300 222 5800 is the number for the helpline. Use the search bar and Related Posts to the right to learn more. Lots of lung health videos on youtube.

I'm wondering that as your cough is morning and evening it's not as worrying as a constant cough - we're not medics here though however, others with experience of copd will be along soon. Good luck, P

Izb1 profile image
Izb1

I do sometimes wonder about the doctors diagnosis and I think I would want a second opinion . I would be concerned that they didnt discuss your low haemoglobin and iron deficiency anaemia, perhaps talk to your gp about this x

Cruise1 profile image
Cruise1 in reply to Izb1

Am taking iron tabs for anaemia and monthly blood tests. Haemoglobin has improved since initial test as has energy level. Only test done at hospital was 10 minute spirometry test ( waited 2 years and 3 cancelled appointments for it and eventually found an available appointment at a hospital 25 miles away otherwise local hospital appointment July 2023!) have had recent chest X-ray (normal) as well as normal sputum test. Consultant couldn’t find Xray on his system!

Izb1 profile image
Izb1 in reply to Cruise1

Good news that you are being treated for your anemia. I think the fact that you are not being treated for copd but have been diagnosed as being severe would really make me ask again. It sounds like you are fit and healthy and just have morning phlegm x

Response profile image
Response

Sorry to hear that. Perhaps the antihistamines reduced inflamation. I think you can get second opinions which could help you feel more confident with any diagnosis.

Alberta56 profile image
Alberta56

i agree that you need a second opinion.

pasquino profile image
pasquino

If you have anemia, your body does not get enough oxygen-rich blood. The lack of oxygen can make you feel tired or weak. You may also have shortness of breath, dizziness, headaches, or an irregular heartbeat.24 Mar 2022

Anemia is a condition in which you lack enough healthy red blood cells to carry adequate oxygen to your body's tissues.

my 5 cents

Cruise1 profile image
Cruise1 in reply to pasquino

My oxygen level was 99%. No dizziness, headaches or irregular heartbeat.

pasquino profile image
pasquino in reply to Cruise1

tell your doctor to check your red blood cells , they carry oxygen - if there are few your breathing will be affected .Normally happens to vegetarian , because a lack of complex of vitamin B.

A simple blood test might sort the problem.

Cruise1 profile image
Cruise1 in reply to pasquino

I have had full blood tests six weeks ago when low haemoglobin level was noted and given iron tablets. Two weeks ago blood test check showed level had risen.

PaulineHM profile image
PaulineHM

Hi Cruise1, I am sorry to read that you have been diagnosed with severe COPD. Although you say you have had some tests, you haven’t said if this diagnosis included a CAT scan which is normally conclusive in a COPD diagnosis. Your 02 sats are remarkable too, I would love my 02 sats to be that high! So when you were offered the diagnosis -

Did they offer you a care plan ?

Did they speak to you about Pulmonary Rehabilitation?

Did they speak to you about a plan for when to use any rescue medication ?

Did they give you your MRC Dyspnoea scale ?

Did they speak to you about managing exacerbations ?

Have you looked at the Asthma + Lung U.K. website for a self management. care plan to download? It is many pages long!

Yes I use antihistamines sometimes too, which really help with my chronic cough and the asthma component I have, however I can’t use them for many days in a row because they prevent me from expelling the mucous which usually leads to a chest infection.

I wish you well.

Cruise1 profile image
Cruise1 in reply to PaulineHM

No to all questions except to get antibiotics if I get a chest infection. Nothing else offered except another appointment in 3 months. Don’t think I need a care plan. Walk a friends dog regularly and use exercise bike and do a lot of gardening including mowing a neighbours lawn as well as my own. Also have a nagging wife if I spend too much time sitting down😀

PaulineHM profile image
PaulineHM in reply to Cruise1

Ok, well the usual course of treatment for exacerbations is a short course of steroids and antibiotics only if really required. Primary care are pretty hot on avoiding anti microbial resistance these days. Good to know that you will be seen again pretty quickly by the consultant!

Keep well.

Cruise1 profile image
Cruise1 in reply to PaulineHM

I probably won’t bother but ask GP to be referred to someone else if condition gets worse. I have had several misdiagnoses in my life -2 of which were life threatening.

Cruise1 profile image
Cruise1 in reply to PaulineHM

No CAT scan just 10 minute spirometry test. Consultant didn’t seem to confident when asked if this was a definite diagnosis.

PaulineHM profile image
PaulineHM in reply to Cruise1

Hmmmmm, that is a pretty concerning that the consultant didn’t seem too confident when asked if he/she was giving you a definitive diagnosis.

Cruise1 profile image
Cruise1 in reply to PaulineHM

My wife was with me at the time and tried to get a definite answer from him. She also questioned my lack of some of the symptoms in particular not being breathless nor having been breathless.

Patk1 profile image
Patk1 in reply to Cruise1

Im wondering if it was a dr new to wards( uni influx is usually august!).U would expect more from an experienced dr

Cruise1 profile image
Cruise1 in reply to Patk1

It was the actual consultant I saw!

pasquino profile image
pasquino in reply to PaulineHM

remedy tried for cough ...it works..

ncbi.nlm.nih.gov/pmc/articl...

amazon.co.uk/gp/product/B08...

PaulineHM profile image
PaulineHM in reply to pasquino

Thanks for that, I have tried everything Saline based and otherwise. The antihistamine works well for me.

Cruise1 profile image
Cruise1

The test was done in the hospital and immediately afterwards I was seen by the hospital consultant in the Respiratory Dept. My voice now sounds like Imhave a permanent cold but with non of the symptoms of a cold.

Cruise1 profile image
Cruise1

Doctors in the UK are still not doing spirometry tests in their practices blaming Covid precautions. I waited almost 2 years to get a hospital appointment for spirometry as these clinics only resumed when all Covid restrictions were finally removed and there is a backlog of patients waiting testing. My voice is not hoarse. It sounds nasal like when you have a cold, which I haven’t, nor a stuffed up nose.

You may also like...