Hello, I posted about a month ago as I was told by respiratory consultant that I did not have COPD but did have asthma. The diagnosis was made as my FEV1 was 88% and showed a positive reversibility following Salbutamol of 250 ml. However, during a follow-up appointment with a respiratory nurse, the nurse insisted I did have COPD (emphysema), as well as asthma, as my TLCO was 4.81 (68% predicted) and should have had a ct scan. I'm very confused, again!, as I don't understand the numbers very well. Does anyone know what TLCO actually is? I have another appointment with nurse in November but am unsure what to do about getting the ct scan she said I should have. I know you lovely people on this forum aren't medical but any comments would be welcome. Thanks for taking the time to read.
Confusion over diagnosis: Hello, I... - Lung Conditions C...
Confusion over diagnosis
Hello doddsie, could you possibly phone your consultants secretary and ask about having a CT scan? It should be done so worth a ogives call. Let us know how you get on. Xxxx
Thank you, good idea. Just at the moment if feel as though I'm caught up in an argument between the nurse and the consultant as to what needs to be done??? Could ring secretary though as you suggested. Thanks for reply and hope all is well with you.
Had a look at your previous post, high eosinophils and a increase in pft post bronchodilator points to Asthma. Your DLCO / TLCO doesn’t seem to be too far off normal. Anemia and other things can cause this to be low. A CT will offer confirmation either way if that’s the route you decide to take.
Those with a normal FEV1 aren’t offered a CT where I live even more so if there’s significant reversibility.
One thing is clear however from your experience is the Nurse and the Consultant need to align on the diagnosis, the way this has played out for you is nothing short of disgraceful.
Is it typical in the UK for nurses to offer a diagnosis that contradicts Pulmonologists? I hope not.
Thanks for the information ck101, much appreciated. This is the first time I have been caught up in a medical conflict and I hope it's not normal to be in this situation. I am going to contact my GP practice and ask if they can arrange a CT scan. Thanks again, take care.
Yes I think you need to tackle it at the GP end as it was the nurse there who said you needed a CT scan. Your GP can arrange one from your end.
I am amazed you got as far as a consultant as my FEV1 is around the 70's and over the 11 years since diagnosis have been turned down for referral a number of times. How did you do it? My surgeries attitude is that
A) They only refer if they can no longer handle my care. B) My doctors say 'We haven't got time to deal with any issues so you need to make an appointment to see the respiratory nurse'. I did ask how as they are even busier than the doctors and this is virtually impossible, but this was met with silence.
The end result is my lovely pharmacist will get questions from me or I tweak my meds myself and hope I am right. .
Good luck
That's awful hypercat54, I think you should be referred to a consultant. My referral came from my GP practice nurse. Like you, GP's would tell me to make appointment with practice nurse. Following 3 spells in Jan/Feb/March this year of needing Prednisone and antibiotics I did see the nurse. The GP's didn't really want to know, they would speak to me on phone but wouldn't see me to listen to my chest or arrange blood tests (even though PCR covid tests were negative) they just kept telling me copd getting worse. They wouldn't listen when I tried to explain the problem was sudden and nothing like previous experiences. The practice nurse did see me face to face, did bloods etc which came back with high esophenils, she did actually listen to me and it was her that arranged referral to respiratory consultant. Can you not ask your practice nurse if she could arrange a referral to consultant?
Take care and I hope you manage to get a referral.
TLCO relates to the exchange of gases in your lungs but I don't know enough about the values to say what your results indicate. I would, however, tend to go with what your consultant has said rather than your nurse. Either way you shouldn't be caught between the two. Are you being seen again by he consultant? If so you could raise the subject of a CT scan then and explain what your nurse has said.
Sadly, I don't have any more appointments with consultant as they felt, as my problem was asthma related, I didn't need their care. Hence, I was passed over to the ARAS nursing team. Have appointment with them in November but think I may try and involve my GP for more clarity/CT scan. Thanks for your reply, much appreciated. Take care.
Your consultant is the lead in both your diagnosis and the treatments offered,a respiratory nurse is ill advised to make such comments,especially given your obvious diagnosis towards asthma.TLCO and or DCLO they are both the same:
DLCO – The diffusing capacity for carbon monoxide (DLCO) is also known as the transfer factor for carbon monoxide or TLCO. It is a measure of the conductance of gas transfer from inspired gas to the red blood cells.
Yours are more or less normal and can fluctuate so your consultant has decided they are not a significant factor in your condition therfore he is happy to proceed without the need for a CT scan and had he been unsure he would have ordered a scan.
Best wishes Ski's and Scruff's
🙃😻
Thank you skischool for taking the time to reply, you sound very knowledgeable!!! I'm still at the 'learning' stage - helped greatly by reading posts on this site by all you lovely people.
Best wishes to you too,
I have had to do a lot of research into my own condition but i am by no means qualified to give you an answer to your question and always if you are unsure about a diagnosis it does no harm to ask but i am convinced that your GP will defer to your consultants diagnosis and probably not refer to for a CT scan.Out of interest may i ask was the respiratory nurse a member of your GP's surgery or one based in a respirtory clinic in the hospital?sometimes GP's nurses who do spirometry are not very well trained and can make assumptions on very limited knowledge?
The nurse who gave diagnosis is a specialist respiratory nurse based in the hospital with respiratory team which is why I listened seriously to her opinion. I think you may be correct re GP response but will try anyway. Take care x
That would give a little more weight to her opinion and you are always entitled under the Nhs to seek a second opinion or if you where really alarmed pay privately for a scan and a radiologists report but personaly i would follow your consultants decision as lifestyle changes and healthy living with the addition of supplementary medicines like inhalers are the main stay of keeping progression of your condition to a minimum. Good luck with whatever you decide to do. X
I'm afraid you need to speak to your doctor again. This is very confusing for you, the patient. I don't know why nurses are giving diagnosis to patients. I respect and admire nurses very much, but I think it's a case of too many cooks.... I have never, ever had a nurse give me a diagnosis, but it seems to be a regular occurrence in the UK? 😐You need a clear diagnosis. And not be messed about by several opinions.
Take care doddsie . xx 🙋
Good luck in getting a definitive answer.
Hello doddsie, wish people would not use shorthand for medical records like TLCO most patients don't know what this is. You can have Asthma and COPD together. But most lung damage cannot be detected and diagnosed by anything other than a CT or Bronchoscope preferably done by a consultant request. Spirometers are usually only done at hospital now or special chest clinics. Hope you can get this sorted out as confused diagnosis or incorrect diagnosis can be very stressful to yourself and others dealing with your health.
Thank you katieoxo60, will try asking my GP for advice. Take care.
CT scan says I have bullious lung disease 
Withholding of Consultants diagnosis from patients by GP!
Copd with asthma treatment 
Change of inhaler 
