Why does my condition which ive had for over 10 years now just put down as copd. Ive had the spirometry test and put on inhalers. Ive had numerous xrays over the years which come back clear. Antibiotics and steroids are prescribed each time there is a flareup but never a referral to a chest clinic. Should I be getting referred? Any advice would be appreciated as sometimes I cant breathe and walk at the same time.

12 Replies

  • Hi copd is an umbrella term which includes emphysema and chronic bronchitis. The treatment is the same which is why they are lumped together.

    Whether or not you are referred depends on the stage you are at and whatever policy your surgery adopts towards referrals. Some do and some don't You have a right to a second opinion but you have to insist, sometimes forcibly to get anywhere.

    Have a look at the NICE guidelines on copd. x

  • Hi Dogwork123, quite a lot of people with COPD are managed by their GP practice . Agreed with others if you are concerned insist on a second opinion and advice. I would never have got my diagnosis if it wasn't for attending hospital for suspected cancer and insisting on a diagnosis after being cleared of cancer, as I had been through a bronchoscope procedure which should have obtained info to reach a proper diagnosis. In my experience inhalers do not always cure the symptoms just reduce the severity. Take care

  • Walking too far or walking uphill was giving my Husband breathlessness, feeling weak and tired.

    We later found Husband's breathlessness was down to deficient iron bloods.

    We had to do our own homework (Googling) and buy our own iron blood tests though, Doctor put breathlessness firstly down to Asthma then later Angina.

    Doubling his asthma inhaler dose then later prescribing Angina spray and a dangerous statin. He did not collect the angina spray or statin.

    Hubby was already taking a high safe of dose of vitamin D3 for many months.

    D3 is known to help Asthma, COPD and Empasema as it is anti inflammatory and helps the lungs.

    Hubby now is off both his inhalers, he feels he no longer has asthma, yet has been close to death several times with asthma and had asthma since a young boy.

    (Side effects of Hubby's Asthma inhaler was that it could actually worsen asthma ???) He now takes a good dose of iron pills and no longer gets breathless like he did before and can walk further and uphill far easier.

    Low iron = Low Oxygen = Breathlessness.

    *Just another angle you might want to look at Dogwork123. (Low Iron bloods)

  • Please could you tell me what a safe dose of Vitamin D is and also where can I find info regarding Iron testing kit. Many thanks

  • www.vitamindcouncil for safe up to date vitamin D3 doses.

    Hubby takes 5000iu daily.

    Mum's COPD has far improved by vit D3, she no longer makes her terrible breathing/gasping noises as she walks around her home.

    We used Blue Horizons home finger prick iron panel blood test.

    It is easy to do, but you must follow the instructions point by point very carefully and don't be in a rush to get the blood out of you finger/s

    Results quickly come back by email. I think it was around £80.

  • Thank you very much for your speedy response and info. Will give it all a go! Regards Jill

  • I had blood tests last October but dont know wether or not checked iron levels. I take accrete d3 for osteoporosis is this the same as the one your husband takes ?. I would love to have an alternative to ihalers if it helps. Thank you for your reply.

  • Hi dogwood123,

    Hubby takes 5000iu D3 + K2

    D3 has the added vitamin K2 in the same pill,

    (D3 and K2 go together)

    The K2 makes helps your calcium gets to where it should be in your body and gets rid of calcium settled in the wrong places.

    Maybe your prescribed pill accrete is made up of calcium too.

    What dose of D3 does your accrete have in iu's dogwood ?

    Prescribed D3 doses can be low, my prescribed D3 of 1000iu to cure my vitamin D deficiency was far too low.

    Go to www.vitamindcouncil for up to date safe doses.

    My young Grandson has asthma, he too takes D3 and when he didn't take his D3 for a couple of days his asthma got worse.

  • Hello, My husband has had COPD for well over 12 years and he has never been referred to the hospital or a consultant. About seven years ago a locom doctor prescribed him a drug in error and he ended up in hospital but later discharged with no referral to the chest clinic etc. After some of my own investigation I found that we had a specialist respiratory team in the area but we needed a referral. I rang the practise nurse and asked for a referral and found they have been very useful. The team run the pulmonary rehab courses at a nearby leisure centre (fantastic course - exercise and education gave my husband some control BUT again you need a referral from your Doctor certainly worth asking for it).

    If you seem to be coping OK - our doctors are happy to continue to treat you but the problem is they are not specialists and are not necessarily aware of the most up to date treatments.

    For your own peace of mind ask for a referral and explain to the Doctor that you are feeling worse and need some help. Look on the internet for a specialist respiratory team too - they could help, once referred to the team they can fast track you to a specialist.

    Good luck xxx

  • Ask your GP for a blood test to see if you've got low iron, they'll ask if there is a reason you think you've got low iron and it may be affecting your breathlessness. If you've got a reason (usually bleeding haemorrhoids/heavy periods) they'll do the test. And they may do the test just for your peace of mind... if they say 'NO' then you could buy the test kit.

    I wouldn't say you read it on t'internet tho'.. :)

    PS If you're found to be iron deficient anaemia, they should be looking to find the reason, which can be serious.

  • I'm not sure if anyone's mentioned have the right to a copy of you spirometry test.

    In a hospital you would be getting a full lung function test.

    You could also request to go on a pulmonary rehabilitation course, I think you'd find it very beneficial . P

  • Thank you for all the replies. Im going to ask to be offered the rehabilitation course to see if it helps.

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