Confused and bewildered

I am a68 year old male and developed breathing problems 12 years ago. My GP's prescribed loads of inhalers etc but it never seemd to get any better. I get 3-4 really bad flair ups a year which really lay me low. About 6 years ago my GP said a definately had COPD and would treat me as such even giving me a card so i could get meds from the pharmacy without a precription.Last November my nurse practioner referred me to the resp clinic. I had basic spirometry and saw a locum consultant who immediately said well you defo don't have COPD , dont know what you do have but i'll get a HRCT scan done. Scan done November heard nothing and had to phone to find out. Was told I would get a letter which arrived 4 weeks later. This was from anothe locum consutant stating I had a deep seated infection in lower left lung with severe scarring and it was called Bronchiectasis. Then had to go for advanced spirometry and was called to see another locum consultant. He started by saying why are you here there is nothing wrong with you but very, very mild asthma. When I tried to question him he put his hand up told me to be quiet and that the results on computer showed I was "normal" I just left. Then had another letter for another HRCTscan in August to which I still have not had any information about. However I had to contact Gp few weeks ago and they told me consultant had written to say if I have flare up I have to have 2 weeks doxycycline and 7 days prednisilone and that I should keep going on my meds regime. I currently am prescribed Spiriva respimat-2 puffs, Fostair 100 -4 puffs , Montelukast and of course Salbutamol. If I only have very mild asthma why all the meda. Sorry about the rant but i'm still a bit angry.

[madonbrew]

Oh my goodness...sounds like you’ve been treated appallingly....especially by that very rude consultant! Did you put in a complaint? I feel like I would have wanted to! It’s not ok to be treated like that!!! No wonder you feel so angry.

It does seem a mystery being on so many inhalers if they’re saying very mild asthma, but it seems nobody is making a clear diagnosis for you. I don’t know what to advise other than talking to your GP and asking them to explain everything from what you’ve written.

Hope you manage to get some answers and treated properly!!

[Itswonderful in reply to madonbrew]

I was add that you should book a double appointment with your GP or else you will not have time to ask all the questions you need to ask and get some kind of explanation

[Adrienne123]

Hello David. It’s so confusing when doctors tell you different outcomes. Well I have a specialist asthma nurse who I have been seeing for 6 years. I have persistent severe asthma, always slightly wheezy. I am on exactly the same meds as you except the salbutamol. I asked for a spirometer copd test last winter but the results said asthma.I hope this helps. I think half the time you have to figure things out for yourself! Keep hydrated and walk walk walk. I got myself a rescue dog to make me walk and I haven’t felt this good for years xx

[Hidden]

Hi David,

Firstly, apologies if you are already doing what I am going to mention below.

I don’t feel I can comment about your own situation of is it COPD, mild or not so mild Asthma, but hopefully my suggestion will help.

I would think many of us here, have over the years experienced receiving contradictory opinions and thoughts about our own respiratory system.

Asthma as you are probably painfully aware is so varied and sometimes complex to determine the what and how of it all.

I am not sure if when you were first diagnosed they ask you to keep a diary of your condition, flare ups, general health and log of your peak flow etc.

I have found this invaluable in being able to understand more how I am affected by and respond to treatments of my Asthma.

Importantly it will help your GP and other clinical staff have better insight.

Asthma needs self management and analysis to understand it. In essence it is so varied and by arming yourself with clearly logged information on how your condition affects you and how you respond to meds and will go a long way to stopping a consultant just brushing you aside as you mentioned.

Most GP’s will welcome having patient insight and gathered information from their Asthma patients to tailor the treatment more effectively and give clarity to what type of Asthma or the respiratory condition you actually have.

Good luck and I hope this helps.

[Hidden]

clearly someone somewhere thinks you have bronchiectasis and that's why you should have doxycycline for two weeks for a flare-up. you may or may not have asthma and or some degree of copd as well. the management of this does not sound good. is there any chance of getting a referral to a bronchiectasis specialist?you should always have the two week course of doxycycline with you at home.

[Itswonderful in reply to Hidden]

Can you explain bronchiectasis and the importance of doxycycline please? Many thanks 🙏

[Hidden in reply to Itswonderful]

blf.org.uk/support-for-you/... will tell you everything you need to know

[Poobah]

Hello Hidden. I suspect your experiences can be shared by many patients, unfortunately. The piecemeal way tests and results are viewed can lead to the contradictory diagnosis and a confused patient. Overall, putting all your test results together you've had a long term lower tract infection for some time, untreated this can lead to damage (scarring) which means that that part of the lung isn't working fully effectively. The result will be a reduced lung capacity. Other tests show there's little or no obstruction disease. Remember that your GP had diagnosed COPD without tests and it probably reflects your difficult respiratory health that you were presenting at that time. As for the locum saying that you're normal, that was just a one day snapshot rather than a review of your previous flare ups etc. I would treat that as a red herring but also an indication that you can enjoy good respiratory health on some days.

But you also describe flare ups and a consultant has stated you should be treated with doxycycline and prednisolone for these, as well as keeping to your established meds regime. Do your daily meds work for you, flare ups aside? Treating the flare ups quickly and effectively will prevent further lung damage so that can maintain your current lung health. I get the feeling that you expect your daily meds to prevent flare ups but it appears that may be the current cycle of your respiratory health.

It maybe worth seeing your asthma nurse when lockdown is eased in order to discuss your daily meds regime - you need to be happy that you're on the right track. Get your blood pressure checked and if it's raised, get your potassium levels checked - some inhalers can deplete potassium and this can lead to high blood pressure. Check your VitD levels as inadequate levels can result in a vulnerability to viral and bacterial infections. The UK is not a great location when it comes to getting the right amount of good sun exposure all the year round, hence the high probability of low VitD levels. Regular gentle exercise is also good at keeping our respiratory system on its toes. The aim being to have more good days than bad days and to get on top of flare ups quickly and decisively.

All the best.

[SteveLondon]

All of the above written by Poobah, it is a bit of asthma minefield out there, everyone trying to get through it unscathed and so many different routes including a few dead ends. I have just had 8 days in hospital , been thrown a few inhalers now and again, last 12 months steroids a few times by surgery pharmacist. ( I have learned so much more from this group and Asthma UK site in last fortnight than GP in last 15 years ) The hospital consultant and Asthma nurse great , local surgery not great. It's 5am just gone and awake as shallow breathing ,my peak flow down turned Tues eve, used blue inhaler 7 times Wed to Fri. My Mrs insisted I submitted another e consult ( Breathing problems ) which somewhat did reluctantly Thurs 1310, email received advising they would be in touch before 1830 Friday...............nothing. 🤔

I have to try make decision whether I go to work next week or what they advise?

I think it's a case of keep banging on the door , louder and more frequently it seems ?