Hoping for diagnosis

Hello

I am new... And not yet diagnosed with COPD however I am on fostair and my second lot of steroids and antibiotics this winter due to flare up of my symptoms. I asked the Dr last time I went if she thought I had COPD and she said maybe? I am 99% sure I do but as I've never smoked the Dr seems reluctant to consider it plus I'm only 41. I have however had non Hodgkin's lymphoma 14 years ago in my lung area and therefore have lots of scar tissue/weakness there.

Basically I'm thinking I should push for diagnosis so that I can get the right treatment? Do people agree? I would like to do pulmonary rehab course and try to keep myself as well as possible as this is the second winter I've struggled with...I keep joking to my husband that I need to go and live in Spain for 3 months in the winter but actually judging by how much I'm struggling now it will be the case! Also I work in a primary school so that doesn't help catching colds from the kids knocks me for six..

Any advice on getting a diagnosis would be good.. Plus how long did it take for others to get diagnosed and do you get referred to a consultant?

Thanks x

20 Replies

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  • Hi and welcome. I'm no expert but in my case I've been having bronchitis every winter for years. Last year in Autumn it just wouldn't clear so was sent for a chest xray where they spotted some changes linked to copd. I then had a spirometry test which showed I had moderate copd.

    You are quite young to get copd but I've seen others on here around your age so it's not unheard of. I'm not sure what to advise you but if you are worried, go back to the doctor and ask for testing it may just put your mind at rest, if nothing else.

    A lot of people on here see a specialt but in my case it's managed by a respiratory nurse at my doctors surgery.

    Hope that helps a little, but others with far more knowledge than me will be along and they are brilliant at answering questions. You can also ring the helpline number where they can offer advice.

    Good luck x

  • Hi

    Thank you I've had a spirometry test last winter when I was given my inhaler but never given a diagnosis I saw a respiratory nurse who said it could be late onset asthma but never talked to me further as the fostair seemed to help. I'm going to go back to the dr at the end of my steroids and ask to be tested again and maybe for a scan?

    Thank you for your help

    I'll keep you posted x

  • I had been attending respiratory and was diagnosed with mild asthma 4 years ago. I didn't feel that this was the right diagnosis but hey. Doc is right isn't he Been worse since last October and my own doc suspected I have Bronchiectasis went back to respiratory and consultant agreed that I warranted a scan Thus showed up the scarring on my lungs I'm not feeling great at the no but at the same time am relieved that this has been pinpointed. Through time we all get to know how to handle our conditions

  • Hi nice to meet you. There is obviously some problem but maybe it's not copd. Around 85% of sufferers are smokers or ex smokers, a few are genetic, and a few others ones who have worked in certain industries such as the rag trade, construction etc.

    Ask your doctor for a spirometry test as this will show if you have copd or not. If you do then there is your diagnosis. If not then a CT scan should show anything wrong. Do you have any diagnosis at the moment? Asthma maybe?

    Just a thought - did your parents smoke? Sometimes it can be caused by second hand smoke. x

  • Hi

    Yes my parents did smoke which I mentioned to the Dr. I don't really have a diagnosis the nurse said she thought it could be late onset asthma triggered by some work we had done to our house (dust) but now on reading things on the Internet and the way my symptoms are they definitely point to something else if not COPD then not asthma..

    I'm going to ask for the testing and push for my results this time as I've had the tests last year but then I was given the inhaler and sent away to get on with it!

    Thanks for your help x

  • Hi and welcome,

    The only way to be sure of a COPD diagnosis is to have a spirometry test. This could be done at your GP surgery (or at least my initial one pre diagnosis was when I visited with sudden onset breathing difficulties) if you can persuade her.

    Not everyone with COPD has been a smoker, there are other triggers and you obviously need a better answer than the one you have been given to ease your concerns.

    As for consultant referral, that isn't necessarily automatic. I was referred after about 18 months when I wasn't responding well to treatment prescribed by my GP.

    I hope that you get some reassurance and answers to your questions soon.

  • Thank you.. I hope so too I just want to know so I can get the right treatment to manage the condition..I realise from reading posts on here I've been leaving it too late when I have a flare up before going to the Drs hoping it would calm down itself. I'm also going to ask for steroids and antibiotics to keep at home I think then maybe I can manage it before it gets too bad

    Thanks for your help..

    Wish I'd found this site last year!

  • Hi there Knicho, I'm sorry that you are having such a hard time. As the others have said, you are young to have COPD. There is a condition called bronchiectasis which is caused by damage to the lungs from various causes. There are several of us on this site who have lived full lives with it since childhood. As you have lung damage from non hodgkins, there is a possibility that is what it is. GPs cannot diagnose it and unfortunately know very little about its management. It can only be diagnosed by ct scan. I suggest that you insist on a referral to a good chest consultant so that you can get a proper diagnosis, the consultant will tell your GP how to treat you and you can then learn how to manage your condition so that life is easier. Good luck. Don't take no for an answer.

  • Hi

    Thank you for your help I've not heard of that condition so it's definitely something I'll ask about thank you. I'm definitely going to ask for a ct scan or at least a referral to a chest specialist. The dr I was seeing was terrible she laughed when I said could it be asthma saying I was a bit too old for that! She also told me I didn't have a problem with my hearing though and I have since been fitted with a hearing aid so she is obviously not doing a fab job..

    I now insist on seeing someone else!

    Thanks again.. Will let you know what happens!

  • Yes, you definitely need to get a decent GP. Has that amateur never heard of late onset asthma? I do hope that you get a proper diagnosis because good management of whatever you have will make life so much easier.xx

  • Thanks I know she's awful..I avoid her now as she always makes you feel you are wasting her time! I ask to go to the other site if she's on duty. X

  • I have a doc like that. My female doc told me as soon as I felt anything starting I should get on to them and get meds. She was off and I went to male doc. He pompously said. Oh we don't want to give you anymore steroids and antibiotics they're not good for you Go to your chemist ( I work in one ) and just get a bottle. As a result I was in bed over the whole Christmas and New Year period. Not a happy bunny. His name is Dr Dickson. You can imagine what my daughter calls him. X

  • Hi Knicho, you may not have copd but you need a diagnosis to rule stuff out so ask for a spirometry test. Stats say that 15% of never-smokers get copd so you could remind your GP of that. There is so much stigma about smokers, it's ironic that your situation isn't being properly investigated because you have not been a smoker. Yes you would be young to have copd, but many are diagnosed around 50 at the moderate stage, when they would have had copd damage developing many years before. Also re your age, there is a blood test you could ask for to rule out a condition called A1A - alpha-one-antitripsin - which is an enzyme deficiency condition which causes copd in younger people. Probably its not that, but its another reason to push your doctor not to rule you out for tests due to your age.

    Be insistant with your doc - take a friend or family member with you to take notes and ask questions on your behalf if that would be useful and give you more confidence. :)

  • Hi

    Thank you I will ask for a blood test too I feel like I'm definitely going to the Dr more prepared now so hopefully they will listen and I can get somewhere!

    I'm reluctant to take friends and family as I'm kind of drip feeding in that it might be COPD and don't want them getting too worried in case it's not x

  • Very good replies SS and O2. x

  • Hi one thing I have learned on here is that you have to be proactive, even more so these days when the NHS is so stretched. I can't believe you could be left hanging like this without any diagnosis when there is obviously something wrong! To be given a preventer inhaler like Fostair and just sent off is ridiculous.

    Do you have a partner or a 'strong willed'' relation/friend who won't give it until you get an answer? It is very important you take someone like that with you. Your health is more important than not wanting to worry anyone. I agree your doctor is stupid - late onset asthma is quite common - I was diagnosed with asthma in my early 30's.

    You need to demand a diagnosis, and if the doctors refuse or can't give you one then they will have to refer you to a consultant. It is your right to seek a second opinion and they are not allowed to refuse you. Have a look at the NICE guidelines (google it). x

  • Hi

    Thank you I think you are right I need to go and keep pushing until I get somewhere! I think all that has happened is they are treating my immediate symptoms and then hoping I'll go away! I don't think until this last few weeks or so when I've started looking for answers myself that I've realised either how important it is that I get the right diagnosis I think with my history of non Hodgkin's and having scar tissue there I just thought it was something to do with that but now I think that has just been the catalyst to starting something else..

    I'm determined to get some answers next time I go...just waiting to finish the current steroids before going back x

  • Well wait a few days until the steroid lows are over and you feel a bit more positive! x

  • I agree with what others have said. You must push for an answer. Hard, I know, but your health is more important than ruffling a few doctors feathers.

    K

  • Thank you that is true!

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