Diagnosed with COPD today

[honeybun1989]

I was mistakenly diagnosed with COPD around 5 years ago (I have never smoked) after 18 months of worry I was told they had made a mistake and I actually had silent reflux ..
3 years later after an x ray I went through the whole thing again (being told it was definitely COPD) I have now been assured it is definitely silent reflux ..

[dizzzy]

Thanks for all the replies, they've all helped. I phoned my doctors today and was told the first GP appointment available is for Wednesday so will have to wait to speak to a doctor. I also got a call from the surgery today saying they're not currently doing spirometry tests due to covid. This is the test they were using to work out if and what medication I need.

It's interesting that some of you have mentioned about silent reflux as this something my mum has and is currently trying different medications. She did say to me yesterday she wondered if this could be what I've got.

Another factor is I'm IGA deficient which makes me more prone to allergies, asthma and chest/throat infection. So I can't help but wonder if it's more likely to be asthma rather than COPD.

I'm not happy with how my GP practice has handled the situation and feel let down by them. I haven't been given any information by them about the condition and when I questioned the diagnosis was told that she doesn't know why I've got it but I have.

Anyway thanks for listening and replying it's all helped. I'll just have to wait and see what the doctor says next week. Hopefully at some point someone might see me face to face to assess me and potentially listen to my chest.

[YorkshireT]

Originally Posted by dizzzy

Thanks for all the replies, they've all helped. I phoned my doctors today and was told the first GP appointment available is for Wednesday so will have to wait to speak to a doctor. I also got a call from the surgery today saying they're not currently doing spirometry tests due to covid. This is the test they were using to work out if and what medication I need.

It's interesting that some of you have mentioned about silent reflux as this something my mum has and is currently trying different medications. She did say to me yesterday she wondered if this could be what I've got.

Another factor is I'm IGA deficient which makes me more prone to allergies, asthma and chest/throat infection. So I can't help but wonder if it's more likely to be asthma rather than COPD.

I'm not happy with how my GP practice has handled the situation and feel let down by them. I haven't been given any information by them about the condition and when I questioned the diagnosis was told that she doesn't know why I've got it but I have.

Anyway thanks for listening and replying it's all helped. I'll just have to wait and see what the doctor says next week. Hopefully at some point someone might see me face to face to assess me and potentially listen to my chest.

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Good luck, make sure you press them on the reflux point, we are not experts and haven’t examined you so it may be totally wrong but you should be asking them are you sure they don’t have this, and let us know how you get on.

[dizzzy]

Originally Posted by YorkshireT

Good luck, make sure you press them on the reflux point, we are not experts and haven’t examined you so it may be totally wrong but you should be asking them are you sure they don’t have this, and let us know how you get on.

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You’re right and I have to be aware that they could be right with their current diagnosis. I just want to be able to question it with it seeming so unlikely.

[Talland 2016]

Have you had any spirometry
or lung function testing?
That’s the gold standard for diagnosing COPD
In some cases there is a genetic cause of Alpha 1 antitrypsin deficiency which shows on a blood test
I’m a respiratory nurse and we would always do reversibility testing to diagnose COPD
With the Covid 19 precautions I’m not sure if this is able to be done at present

British Lung foundation website is a brilliant site have a read on how COPD should be diagnosed before contacting the surgery so you can clarify how the diagnosis was made. Our local COPD team will not accept patient referral without spirometry diagnosis
Hope you get on ok when you contact the surgery
Keep us posted

[dizzzy]

Originally Posted by Talland 2016

Have you had any spirometry
or lung function testing?
That’s the gold standard for diagnosing COPD
In some cases there is a genetic cause of Alpha 1 antitrypsin deficiency which shows on a blood test
I’m a respiratory nurse and we would always do reversibility testing to diagnose COPD
With the Covid 19 precautions I’m not sure if this is able to be done at present

British Lung foundation website is a brilliant site have a read on how COPD should be diagnosed before contacting the surgery so you can clarify how the diagnosis was made. Our local COPD team will not accept patient referral without spirometry diagnosis
Hope you get on ok when you contact the surgery
Keep us posted

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Thanks for this . I haven't had the spirometry test yet as they were booking me in but contacted me yesterday to say they're not being done at the moment due to covid risks which I can understand. The only downside is I now feel stuck in limbo whilst I wait.

Hopefully my gp surgery might do some blood tests and even possibly listen to my chest to see what they think. I just feel so fobbed off at the moment with constantly being told to use steam and nasal spray to clear my cough and when I had my chest infection kept getting told I didn't need antibiotics and if it wasn't for covid I would've been sent for an X-ray to check it out. After eventually having 2 lots of antibiotics my infection finally cleared. Apart from now they've said they think I could still have some infection in the bottom of my lung and have to have another X-ray in 5 weeks to check.

[olgaandcoda]

My son had sarcoidosis, which might be something you can ask about. He had to have a lung biopsy to diagnose it. It is self limiting and he was given the all clear in February. He had similar chest issues for a while before. Never smoked and early 30's.

[Bellasmummy]

Originally Posted by olgaandcoda

My son had sarcoidosis, which might be something you can ask about. He had to have a lung biopsy to diagnose it. It is self limiting and he was given the all clear in February. He had similar chest issues for a while before. Never smoked and early 30's.

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DH had this last year, I’d never heard of it before that, but now I’ve come across a few others that have had it. He was 38 when diagnosed and also never smoked. Still waiting for all clear and his final appointment was due in April but didn’t happen.

The consultant said it’s rarely diagnosed correctly initially.

[dizzzy]

Thought I'd do an update after speaking with my gp yesterday. He doesn't think I have copd and saw me today to listen to my chest. He can't hear anything and my blood oxogen levels are 98.

He hasn't ruled out copd completely but thinks it's highly unlikely. He wants me to have an X-ray in 5 weeks to see what that shows and will then decide the next steps. If the X-ray still shows the same in 5 weeks he will send me for a ct scan.

Thanks for all the replies over the last week as they really helped

[Guest]

Originally Posted by dizzzy

Thought I'd do an update after speaking with my gp yesterday. He doesn't think I have copd and saw me today to listen to my chest. He can't hear anything and my blood oxogen levels are 98.

He hasn't ruled out copd completely but thinks it's highly unlikely. He wants me to have an X-ray in 5 weeks to see what that shows and will then decide the next steps. If the X-ray still shows the same in 5 weeks he will send me for a ct scan.

Thanks for all the replies over the last week as they really helped

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Really pleased to read this update.