Diagnosis of IPF

Hi all, Can anyone tell me how the consultants officially diagnose IPF? do they have to do biopsies or look into the lungs to get a proper diagnoses? or do they diagnose on the strength of scans, breathing tests ect? I have had all the latter tests as asked for by my respiratory cons, who has not given me a diagnoses, but my rheumy cons has given me a diagnosis of fibrosis. Both these consultants do not work together in the management of health problems. Thank you.

P.S Does anyone know the opening times of the BLF helpline? Thanks.

8 Replies

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  • 10 am blf open clik on red ballon,bernicex

  • Thanks carrotts

  • Hi Caz

    Some of these tests can take a while especially if they might be looking for other things. IPF as I understand it is an unknown thing that happens to the lungs which casues fibrosis. I think, and the BLF will hopefully confirm that fibrosis is something to describe what has happened to your lungs if they have been affected by certain illnesses/disease. They may take biopsys, they may not. I woudl try and speak to your respiratory consultant again.

    marie

  • ipf can be seen on ct scans mine was seen as far back as five years ago im now severe stage of disease olong with copd all severe

  • Last week BLF ran an Online surgery on IPF in which a Consultant explained the investigation process to produce a diagnosis of IPF and then discussed possible treatments and outcomes. She then answered questions sent in by BLF sufferers of the disease or their carers. It can be viewed on Youtube.

    However as, the programme points out there are a range of illnesses which have pulmonary fibrosis. As you have a rheumatologist it sounds as if your fibrosis is not idiopathic (unknown cause) but likely to be caused/related to an auto-immune disease. In this case the treatment is rather different to that for IPF.

    Maggie

  • You may find this helpful ,

    publications.nice.org.uk/id...

    The BLF site will also be very useful to you as will the pulmonary fibrosis site,

    pulmonaryfibrosis.org.uk/

    Hope that helps. :-)

  • Thanks for info everyone very helpful. x

  • Hi Caz59

    IPF can certainly be diagnosed from CT scans and breathing tests but to really pinpoint the diagnosis they like to do a biopsy. My IPF was diagnosed in May (2011) but was so rapidly deteriorating that it was too late for a biopsy and I had a bronchoscopy instead. So sorry to hear that you probably have this awful disease. Best of luck with it.