Struggling to get diagnosed

Hi there. I am looking for some advice please. I have asthma - at least I think I have it I have never had a spirometer test. I have been on and off inhalers for years but this past two years I have had to use them daily. I am on serotide 250 and ventolin. I have had peak flows - lately they have ranged from 150 to 250. Dr has increased serotide 250 to two puffs three times a day - doesnt do much good. Asthma nurse suggested alpha-1-antitrypsin test but in the next breath she said I was too old to be diagnosed with it ( I am 47). I have path worn to doctor. They said initially it was heart related so sent me to echo - normal, no action. Back again to asthma nurse - she didnt like peak flow so made appointment with dr to discuss. But by time appointment came, I thought I had chest infection but he said no, lungs needed steroids so on two weeks of them at 30mg per day for five days and then decreasing. Asked him about the Alpha 1 test - he said they couldn't do it at surgery - referred me to chest clinic . That was Tueday. Today breathing is worse and have pain when breathing so back to dr, saw different one who said pain was chest muscle due to coughing. Explained coughing isnt severe, its not being able to breath. She then said it was pleurisy and told me to go home and take ibuprofen. I am allergic to aspirin so she said give it a go and if it doesnt affect your breathing, keep taking it. Otherwise use paracetamol. I am beyond fed up. I don't smoke (did in my twenties) , had numerous chest infections as a kid including pneumonia etc. Mam died of breast cancer but no lung issues that I know of until cancer spread. Dad has COPD put down to smoking - he stopped twenty odd years ago. What should I do next? Insist on a spirometer? blood test? I am starting to feel like a hypochondriac. I am not wheezy but I get breathless if that makes any sense. Its like a big elephant is sitting on my chest and it becomes hard to breath. I am beyond tired but breathing is worse lying down. I wake up as if I am drowning - sorry that sounds so dramatic. They have already done normal blood tests which came back normal apart from vit d which is deficient. My ten year old son has asthma (again no tests other than peak flow) his recent blood tests showed raised levels of something in his liver and vit d def. Neither warranted a phone call from Doc. Receptionist said re test in six months and take vit d supplement. (sorry for long post!) Where do I go from here? thank you so much.

42 Replies

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  • Hi rach212, I am sorry to hear that you are having such a hard time off it at the moment, I am 47 as well i have had asthma since i was 4 years old but only got really bad after a severe cases oh pleurisy and pneumonia I was in hospital high dependency they didnt think I was going to get through it, how ever i did but have been in and out off hospital since and ended up with fibromyalgia so since I turned30 I went down hill from there im on the sane inhalers that you mentioned as wellas other medication for breathless and fibromyalgia, last year between April and October i was in hospital more than at home, on discharge from hospital i was given home oxygen 24/7 and i have my own nebulizer own wee mini hospital lol

    But back to you; have you had chest xrays or any other tests, I kniw how frightening it can be when you cant breath and like you described as if someone is sitting on your chest , sometimes I do have to increase my steroids as im on the daily but only 15mgs but when realky having problems with breathing the doctor increaes them to 40mg but I dont always need antibiotics, I have a pillow wedge which means I basically sit up when I go to bed as like you said when you lay down it gets worse, I got that from amazon,

    If your gp isnt listening to you then I would just go to hospital if you are struggling to breath at least there you will get a chest xray , there are tablets for asthma that you can get to normally blood tests show your unyphilline leave and if its low youcan get tablets to take along with your inhaler there is another one i take called singulair or montaluckus is another name for it,

    There are various treatments and inhalers maybe your preventer isnt working for you so maybe trying another one but if your gp isnt helpful then next time you are struggling go straight to hospital and hopefully they can get you on the right treatment if itvis asthma or copd .

    Good luck i really hope you get proper help as its not something that you can continue not being treated properly,

    Have you noticed anything that triggers it of , like the change in weather, pets ever just house dust can make it worse, im not saing that your house is dusty I mean it's in the air in everones house , air freshners can be bad for your breathing as well,

    Let us know how you get on, all the best, take care

    Loraine x

  • Doh I didnt realize I could reply direct until I finished the post below. Thank you so much Loraine, I hope things go better for you too. :-)

  • Great advice Loraine!

    Go to hospital for X-rays etc better to be on the right track. Maybe you have pneumonia.

    I have had problems for years and it can be very worrying and feeling alone when sick like this. Last year I took myself to the Hospital after a few Doctors visits to be found it was pneumonia.

    Make sure you take prescribed medications. Not ever forgetting the preventive. Sleep propped up with a couple of pillows.

    Take care😊

  • If you have asthma, you must be on singulare 10mg daily too. Avoid coloured drinks, milk& milk products. You are already on steroid & ventolin inhalers. That's ok. I would stress on clinical diagnosis rather than spirometery

  • thank you so much for commenting. They took me off the singulare as they said it wasnt doing anything - dad said it was a pity as that has been proven to be good for your brain!

    Yeah dont do the coloured drinks but I do drink milk in my tea and on breakfast. That's it - I dont drink glasses of it. But my son does.

  • Feel for you! I was diagnosed at doctors after being given a nebuliser as couldn't catch my breath.

    I'm in the same cycle of tests from over 12 years ago. No one seems to k ow what is wrong but having chest infections all year round approx every 4-6 weeks is wearing me down.

    I sympathise with the experience of pain in chest, l have pain all the time, always been told was due to coughing.

    Sometimes, l think like everything we are compartmentalised as is easier.

    Don't give up! Beat that path until someone says, yes, we know why.

    My issues are annoying as never smoked buy suffered from young.

    Hope things improve

  • I am so sorry to hear you are still having issues 12 years later. That is not right at all. I hope things improve for you as well. :-)

  • Thank you so much for all of your replies. I was worried I would come across as a real whinger. I shall take all your tips. Loraine121 - they tried symbotal (?) and gave me tablets but didnt make a difference. But yes I get worse with cats around or feather duvets but we dont have either of those. We have had some work done in the house so that could be an issue - why didnt I think of that? thank you :-) I havent had a chest xray for years.

  • You are certainly not too old to be tested for alpha 1 antitrypsin Rach, I was tested and diagnosed aged 59. It's a rare disease, but there are a lot of people walking around that are undiagnosed. I hope you get some answers!

  • thank you Croydonia. I feel a bit better now you guys have been so supportive. I have been reading the site and one thing none of the docs or nurses have done is check my sats with that yoke on your finger. One told me to go home and read the menopause matters site! I am sorry you have alpha1 and hope you are able to manage the symptoms very well. :-)

  • I don't understand why they won't test you, 47 is hardly old. I agree with the advice you have had about going to A&E with breathing problems and feelings of chest heaviness, they will probably do ecg, blood tests, and X-rays so you might get some answers. Good luck

  • thank you - I will :-) I have been avoiding A&E but.... ps I did feel old but not anymore. Given some of the stories on here, I am very lucky.

  • I think you need to see a lung doctor you also should find out if you have COPD. I am very lucky to have a lung doctor who listens to me.i tell him when I am getting an infection he calls it in meds you need someone who will listen sounds like that isn't happening.

  • Yes after reading this, I am going to push for that Roessner, thank you :-)

  • haven't you been referred to the chest clinic already?

  • I am always disturbed at how any people go for years with their GP surgery faffing with simple breathing tests, changing inhalors, refusing to refer for simple diagnostic blood tests when they obviously have symptoms of something which is being missed. PLEASE stop letting your surgery mess you about and insist on being referred to a respiratory specialist. Nothing can be properly diagnosed and treated without xrays, ct scans, complex spirometry and blood tests. The consultant can then tell your GP how to treat you.Don't take no for an answer.

    Why should you go on suffering like this. I'm afraid that many GPs are woefully ignorant about lung conditions and often too lazy or arrogant to ask for specialised help. You have a right to it though and I am speaking to everyone on here who has never had any diagnosis or treatment from anyone other than their GP.

  • Thanks Little Pom - I so hear what you are saying. I am starting to think if I had told the doctor I swallowed an elephant, she would have diagnosed me with that!

  • hee hee. Yes, the secret is in the description - general, not specialist, practitioner. I do hope that you get some answers so that you can start to feel better.

  • Hi Rach212, sorry to hear your asthma seems out of control. To keep it short you need clinical diagnosis by a respiratory specialist. It may not be asthma but obviously you have airway problems. Have you tried contacting Asthma UK for advice?, they can be found on line. Hope you soon get it sorted out.

  • good idea Katie, I will do that as well :-) Thank you

  • You are welcome

  • Have you had a scan to rule out Broncheichetis it sounds as though Drs are missing something, but only a Scan will show up if there are problems with widened areas where mucus and bacteria may be sitting in the lungs.

    At least you will be able to rule this out or get treated, but first you need to ask if possible to have a scan of lungs.

  • No Inhaler1, I have never heard of that. Nobody mentioned it. I will ask. Thank you :-)

  • You've had some excellent advice, just wanted to say keep smiling and I hope the doctors can give you some answers soon. Nothing worse than not knowing! Have a nice weekend

    Brian :)

  • Thank you so much Brian. Its amazing how nice everyone has been. Thank you :-) Enjoy your weekend too.

  • Some really good advice here. Welcome to the forum. :)

  • Thank you Mrs mummy, what a great forum.

  • SO sorry to hear what you are going through. learned I have alpha 1 aged 57. My GP ordered a simple cheap blood test with the local hospital to check my alpha 1 levels. The results were back in 5 days. All GP practices can do this. If your level is low your blood will be phenotyped, which takes longer. Insist on the blood test - many alphas are misdiagnosed for years.

  • I will and thank you Zorro.

  • Good luck. By the way, alpha 1 deficiency can cause liver issues too, so your son should certainly be followed up.

  • It is him really that prompted me to investigate more. I need to get on top of this for his sake and my own. Thank you :-)

  • There are a couple of uk based Alpha 1 groups on the web and on Facebook. They can both send you information about Alpha 1 and provide advice and support. Search for alpha 1 support group uk and alpha 1 awareness uk and you should find them. All the best x

  • Sorry, haven't read all the replies but it seems to me you need to see a chest specialist. GP surgeries can be pretty hopeless at dealing with some lung conditions. I was also diagnosed with asthma until I saw the specialist who proved them wrong after a CT scan. I think you've suffered enough and taken needless drugs probably too on the way. Be insistent!

  • thank you Claudine. I have been referred to a chest clinic - the GP said yesterday it will take forever to be seen. But nobody has mentioned any scans. Do you mind me asking what you ended up being diagnosed with? I dont know about my asthma. I hear about people wheezing with asthma but I dont wheeze. But I can't get my breath and then I start coughing and it feels like I can't get any air in. Anyway I am going to be more insistent now :-)

  • Once the surgery realised I had a productive cough they revised the diagnosis to COPD, simply because I had smoked over 30 years ago. When I suffered an infection which wouldn't clear, then the GP said 'I think it's time for a specialist'. I have to say he knew I had PMI which may have influenced his decision! I was shown the CT scan taken which proved the diagnosis of Bronchiectasis. This is not COPD. Then the surgery had the cheek to raise their eyes to the ceiling when they realised the drugs he had prescribed for me! I despair at the NHS sometimes. They're always trying to save money but if the condition doesn't improve they end up wasting money with yet more drugs.

    Let's hope your appt. won't take as long to get in the summer time - you've timed it right hopefully! Let us know the outcome. We all learn from each other.

  • I used to have PMI. Sure wish I had it now. thank you so much and yes I will definitely come back and let you know how I get on. You have all been amazing, thank you

  • Hello and welcome x

  • Hello rach212 .

    You've got some really good advice from everyone so I don't really have anything to add. I hope you can see a pulmonologist very soon. It sounds as though proper research needs to be done.

    Welcome to this forum. Hoping to hear updates from you soon.

    Cas xx 🍀🌿🍀

  • Being Irish I love the shamrocks. thank you :-)

  • couldnt read all your post as it was making me short of breath.

    what would i do..id be sitting in the A&E waiting to be seen express.

    i would have told them that i have a very bad pain in my chest and i was short of breath..am sure that would get me at least an xray.

    the medicine your doctor put you on..2 puff 3 times a day on serotide 250 sounds like a lot to me. but as he has now put you to see a chest clinic on Tuesday they will no doubt be doing all the tests that is needed to give you a diagnosis. but if you feel you can wait until then, go to E&A.

  • thanks Keepers. He referred me to chest clinic last Tuesday when he put me on steroids but will take weeks. I have three young kids so will see how I go over the weekend and then A&E might be the answer. I am okay so long as I dont do a lot! This board is great. Thank you

  • sorry i miss read that bit of been referred.. i can fully understand how you are feeling as i to have very young children that relay on me. 4 of them.

    all the dreams and hopes that was there for us as a family seem to have gone, disappearing one by one untill just the one was left. i have to smile a bit when i say that was even before copd + asthma and +++.

    not to worry about all that now, breath in and when you breath out , do it at a speed that takes with it all your fears.

    ive got it down to just ten times a day now, and thats just only after 3 years ☺ xx

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