Unexplained breathlessness

Hi,

 I've got breathlessness exacerbation now, tried to phone hospital for a few weeks for respiratory clinic  cancellations, there weren't any.

It all started about 6 years ago after a cold, had chronic cough for 4 years and then it was replaced with breathlessness  which I've had for 2 years or so - first I  felt as I couldn't take deep breaths and then I felt short of breath for most of the time - more after walking but at rest as well.

For the last 2 years I only can go to work , when breathlessness is not too bad, park next to the office and come back home.

I am on seretide 250 mg x 4 a day , tried montelukast, Spiriva, nothing seems to help Salbutamol doesn't help either. Never  smoked .Had various lung functions tests, laryngoscopy to check for hyperventilation, echocardiogram and pulmonary CT a while ago , they weren't too bad. My peak flow doesn't vary much either .The only thing they found - high blood eosinophils.

 

I heard about Unexplained breathlessness service in Royal Brompton but my GP is not willing to refer me there

My Gp always says that if the hospital cannot control my asthma, then he cannot either , so there is no point in going there .

 I  am not completely sure that I don't have other contributors to my breathlessness apart from asthma but the asthma consultant never advise, who else should I see and Gp is saying - if you already got an asthma diagnosis, why are you looking for anything else.

My asthma diagnosis was mainly established because I have high eosinophils .

I have been taking prednisolone from my emergency pack now for 4 days x 40 mg a day, it does not seem to help either!

7 Replies

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  • If you are in the UK can you ring the BLF helpline for advice...Asthma UK have a helpline too.

    Words fail me when I read what your GP has said to you ...I just hope someone on a helpline can advise you on the next step to take.

    I have brittle asthma , and I find my breathing is much better out of the house too.....have you had any allergy tests, I see you have high eosinophil levels. Have you tried another preventer inhaler apart from Seretide....I used Serevent once which is the bronchiodilator part of Seretide and that did not agree with me...I now take Clenil.

    I think if you breathing does not improve , and you are struggling I would go to A and E 

  • Sorry I can't give you any advice re your breathlessness, but if I were you, I'd give some thought to changing my doctor. 

  • Hi sorry nothing seem to be helping you at the moment. I have the same problem I have been told I have a low immune system and my consultant has referred me to see a immunologist. To find out why. 

  • Hi, have you also  got high blood eosinophils? What is your breathlessness pattern - I mainly feel as I cannot take deep breath and also have a heavy chest. How was your immune system tested? Which  hospital have you been referred to ?

  • Have you had a full pulmonary function test? That's more intense than spirometry. They get more details about the obstructive disease: where it is, (ie in the small, medium or large airways)  and how severe it is.  But more importantly it shows lung volumes, any airtrapping and gas exchange. It can feel bizarre, some versions you sit in an airtight box, and there is a lot of huffing and puffing in different ways.  

    You GP sounds like mine. Mine does not seem to understand how important a diagnosis is to patients, even if there is nothing to be done about it, (as is the case with my conditions.)  Sometimes wonder if he is in the wrong job. 

    Keep persisting. I had to and bit by bit, got diagnoses, flying in the face of six consultants....   Not easy, but worth it.

    Push for referral to RB for their special clinic on unexplained breathlessness. It looks good. Wish I lived in their catchment area.

    All the best

    K xx

  • Hi Katrinka,

    I had  pulmonary function tests a few times, they were not too bad, apart from metacholine challenge which was moderately reactive

    My main problem is inhaling, not exhaling and they mainly measure exhaled volume.

    Which specialists did you go to?

    I also went  to gastro , had a Bravo PH  test but it only measures gastric, not silent reflux

    Its almost impossible to get a referral from my GP surgery now as they recently  started coming out of their budget.

    Unfortunately I am not in the catchment area for RB either -- I live in North West

  • Hi, I can't add anything except to agree with Knitter that a call to the BLF helpline is a good idea. They have a very knowledgable team to speak to 03000 030555 UK office hours.

    I wish you all the best, it's so frustrating not to have a diagnosis. Please call that number.  Peege 

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