Undiagnosed lung/bronchial condition ... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

5,756 members3,456 posts

Undiagnosed lung/bronchial condition after 3 months

Alex2210 profile image
6 Replies

Hi,

I am 41 and an ex smoker. I developed a dry cough, with shortness of breath and a pinch sensation of the left side of the chest that after a while became back and shoulder pain. All this has been going on for three months. In the last month, I had some morning episodes of blood-tinged sputum. I gave seen my GP, a lung specialist, had 2 chest xrays, 1 CT scan and a pulmonary angiogram CT: ALL clear!

I am still unwell, my blood tests show high IgE, high ferritin and altered liver enzymes...

Can someone help?

Written by
Alex2210 profile image
Alex2210
To view profiles and participate in discussions please or .
Read more about...
6 Replies
RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear Alex2210

Welcome to the forum and sorry you do not have an answer to your ongoing symptoms.

It is encouraging that both your x-ray and CT scan is clear, I take it they have tested a sample of your sputum.

Raised IgE levels can be indicative of an allergic immune response disorder including allergic asthma, e.g there is a condition called allergic bronchopulmonary aspergillosis and information on this can be found here: thoracic.org/patients/patie...

High ferritin levels is having too much iron in the body and can be an inflammatory response which can also impact on your liver function levels.

There are a few things you may wish to consider; ask for a referral to a Respiratory Consultant for reassessment and or go to a different GP for a second opinion.

As there are ongoing symptoms they may need further investigation or in a different direction e.g allergy clinic assessment. If nothing else you need peace of mind that all is well and you do not need any treatment.

You may wish to contact the British Lung Foundation, their helpline number is

03000 030 555 and their website is: blf.org.uk/

If there is anything you would like to discuss you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Alex2210 profile image
Alex2210 in reply to RoyCastleHelpline

Hello Team,

Thank you for your quick reply and support.

I have done a sputum cytology test, but it returned "insufficient sample" as my cough is pretty dry and I managed to collect a very small amount of blood-tinged sputum. They still performed a Papanicolaou staining which did not reveal any cellular atypia, despite pulmonary macrophages could not be seen (hence insufficient).

Today I have seen again the pulmunologist that is following my case and he is pretty confused...to the point he referred me to another respiratory physician...

He strongly believes that I don't have cancer as a CIS or other endobronchial lesions big enough to cause my symptoms would be visible after two separate CT scans conducted with a 2 months gap. I am not too sure this can be totally excluded, as the resolution of the CT scan also depends on where the lesion is (a central lesion would appear as a small bronchial thickening of a few millimeters) which would easily be overlooked by a radiologist. In addition, CIS don't grow as quickly, so may still be NOT visible after two months on an pulmonary angiography (where the resolution is less than HRCT). Anyhow, just a thought!

Whilst this is a bit encouraging, the frustration that I still have an undiagnosed condition is raising the level of frustration...(I wish Dr House from the TV series actually existed!)

I have also been tested for allergies using the RANT, serology for aspergillus, candida, klebsiella, pseudomonas, legionella, mycoplasma, influenza A and B and pertussis. Eosinophilia is not present, so ABPA is also unlikely!

Definitely, I am with nothing in my hands, only questions!

But the pain is there, the cough is there and blood in the mucus too! And it is not from the nose, sinuses or digestive system...(I do have a bit of medical knowledge). However, after 3 months a whole group of physicians and specialists have failed to find a diagnosis...

With this I am not blaming anyone...I am simply venting out of frustration...my apologies!

However, I would like to thank you for the support...you are great and it is really nice to know that there are support teams like you there to provide some advise.

Best, Alessandro

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle in reply to Alex2210

Dear Alessandro

Thank you for the post and you sound very knowledgeable ,which must be so frustrating for you that even the physicians are a bit confused, which does not help you of course.

Have they considered a PET scan or is it also worth contacting the British lung foundation on 03000 030 555

There are some rare lung conditions however most of these are picked up from CT scan. Do keep us posted how you get on and hope you do have some answers soon.

As always our contact email is lungcancerhelp@roycastle.org or our freephone nurse led helpline number is 0800 358 7200

All the best

The Roy Castle Support Team

JanetteR57 profile image
JanetteR57

It can be so frustrating when we feel unwell yet tests show nothing really. Have you done a sputum test for analysis? I was diagnosed in Jan 2011 with lung cancer and since 2015 have had a number of severe infections including pneumonia, pseudomonas and RSV that have all had similar symptoms and given my history, medics investigated in case of cancer recurrence. Thankfully none were but they were seriously debilitating with cough, shortness of breath and shoulder pain. All those can be symptoms of things relating to lung damage from other causes. My CT scans also show a liver cyst but this has been steady since Nov 2010 and surgery to remove half my left lung in Dec 2010. When I develop nasty infections I tend to go to the GP or walk in clinic (near the hospital) who send me for a chest x-ray, given steroids and antibiotics or referral to respiratory consultant. I've had allergy tests (I had childhood/early adult asthma/hay fever) but nothing new - in fact some former allergies have now reduced. I've never smoked but it's good that you've quit. When you say you've seen a lung specialist - do you know their title? were they a respiratory consultant or pulmonologist? You can always ask to be referred to a different centre if you're not happy.... your results should reassure you that it's not 'sinister' but nonetheless you need to prescribed some treatment for whatever is causing your problems.... I'd suggest starting with a trip to your GP if you're no longer under the 'lung specialist'. Did they discharge you from their services or are you 'under observation?' Worth following up.... I often have blood tinged sputum with a chest infection and have been told this can be the result of severe coughing bouts that can burst blood vessels... hope you can get some answers soon.

Alex2210 profile image
Alex2210 in reply to JanetteR57

Hi Janette,

Thank you for your support.

What is annoying out of all this situation is that I have never been actually "sick", in the canonical terms.

3 months ago, whilst working from home I started developing a mild dry cough, which soon was accompanied by a sense of chest tightness and a pinch in the left side of the chest, which I obviously ignored. Within two weeks the cough got worse and the discomfort on the chest was still there. I went for a short run but after 1km I had to stop as the discomfort became pain and strong cough.

That night I had chills, which lasted for two days. After that, cough never left me and the chest pain started irradiating to the back/ left shoulder. After a month, morning cough with some streaks of blood in sputum.

3 months later, still at the starting point but with the same symptoms...no diagnosis, no treatment and physicians giving up. The specialist is a senior pulmonologist with a specialty in lung cancer. I have been recommended by a colleague at the university I work for.

I have been referred to another pulmonologist now.....will see!

Thank you so much for your kind words and your support with this...I wish you all the best and hope I will have your same strength if I will be diagnosed and had to fight the "monster" as you are doing...

You have my utmost respect.

All the best, Alessandro

JanetteR57 profile image
JanetteR57 in reply to Alex2210

hopefully you may be reassured that you're being referred to another pulmonologist - a fresh pair of eyes may help. I was diagnosed last year with dysfunctional breathing/VCD after a lot of tests revealed I'm breathing incorrectly leading to my tiredness - possibly caused by bronchoscopies or surgery although I doubt the latter as I recovered well from the initial major surgery. However the specialist is one of only a handful of people who specialise in this area in the Uk. Sometimes it takes a while to find out the exact problem and your mucus/blood issue does sound like some sort of infection to me but I'm not a medic so hope the investigations reveal something that can be treated soon. good luck.

You may also like...

So scared after CT scan showed shadow on lung

for a chest CT scan by my endocrinologist (I have Graves Disease) following a really bad cough...

Hi. A 7cm mas was found in my right lung on an xray 3 weeks ago today (9th July).

I have since had blood tests a CT scan with contrast and a bronchoscopy with biopsies. They could...

Good news from scan after being on Osmertinib for 3 months...

After two negative biopsies doctors still believe is lung cancer.

active guy, but about two weeks ago he started coughing blood.. he hadn't had any pain or anything...

Stage 3 Lung Cancer

diagnosed last month with stage 3 lung cancer. It’s one tumour on the right side of his lung and...