Hi all, since diagnosis 6 weeks ago with COPD and put on Spiriva I have felt worse shortness of breath and had high pulse rate with palpitations. New doctor in my gp surgery and took an appointment with him as he had a slot before my own gp. He still didn’t go into stages and said not very bad but muttered something about ‘moderate’ and numbers 61 and 63. He listened to chest for infection and said he heard no signs of COPD in chest and said he would not have put me on Spiriva so took me off it and gave prescription for Ventolin, as according to him that’s what I should be on. Said all symptoms are anxiety since diagnosis and told me to deep breathe getting air into lungs and think positively that lungs are fine as positive mental attitude is key to health. Now confused as my gp said I would be on Spiriva for life!!! Who do I trust?? Any input welcome please.
Doctor visit today - confused?? - Lung Conditions C...
Doctor visit today - confused??
Trust yourself Shazza and insist your GP’s get their act together. You need further investigation by a doctor who knows what they are doing. Xxxxx
Thank you Sassy, so new to this and half scared of answers but at the same time need to know. Surprised me that he went over my gps head and changed medication but he said doctors differ in how they treat things and he looked up guidelines and changed. Nice man as he tried to make me feel less anxious about it but now feel not sure whether to stop Spiriva. Will have to book another appointment and ask for referral. Thank you for your help. x
My understanding is that you need to have the input of a specialist not a GP, they generally have little knowledge of lung problems and COPD is not the same as asthma, maybe GP is treating it like that and they shouldn't be.
Where we live there is a larg health centre and within that there is a COPD clinic. Often referred to as respiratory clinics. That's the sort of place you need to go, they can smtimes be in large surgeries or hospitals. Please see the GP or even practice nurse and ask, if that's not available then ask to be referred to a respiratory specialist.
Thanks Shancock, I live in Dublin and have small gp practice with only 2 doctors, 1 remains the same, the 2nd changes a lot and the one I saw today was first day in our practice. Asked to be referred to respiratory consultant in the hospital but he said no need at the moment and just keep going as I am. Kind of stuck and don’t know what to do for best. Will have to book to see my gp again!!!
Yes thats correct/i was diagnosed at one years ago-its the first place to go really.
Great reply,exactly lung specialist's advice needed here
Since you are getting such contradictory input, ask for a referral to a pulmonary consultant. Many GPs are under the impression that giving information will be detrimental to our anxiety levels. But for many knowledge is power, or at least a way to control our anxiety. For me, nothing is worse than the unknown. And this kind of attitude is condescending and patronising to say the least.
Many in my generation were raised to be deferential to the doctor/medical profession, and not question what they say. But one of the things we do well here on the forum is to encourage each other to learn to be proactive on our own behalf. In your case you need to insist on being told your stage and anything else you want to know. Do call the BLF helpline, 03000 030 555, and ask their help as to how to communicate with your doctor(s). And don't be put off - quote this site if needs be and say that most members here know the information about their conditions and are helped by knowing it. That this is your body and you are entitled to know what is happening to it.
I would think that from your post, it sounds like you are bang in the middle of Stage 2, moderate which is fev1 80%-50%. There will be a NICE care pathway detailing the standard treatment for that stage of copd. But remember, different treatments, inhalers etc, suit different patients. For instanceI have never been able to take Spiriva, or any of the other medications in that class of drug (anti-muscarinic), as they dry me out so that Im not able to speak, and I feel quite unwell. (Im stage 3/4 btw.) Often the bigger treatment doesnt kick in til Severe Stage 3 (50%-30%). I'll see if I can find a link for the NICE treatment pathway for Stage 2, but these are not set in stone and a good GP or consultant will adapt from the wide range of inhalers out there, according to the needs of his/her patient.
Can you take someone with you for backup? You will probably get a better result, nothing like a witness for putting the doctor on the spot.
Thank you for the information O2, I live in Dublin and gp won’t refer me to Consultant. I agree that I must be in middle of moderate but he said I don’t look like I have COPD as wasn’t sitting there gasping!!!! My initial gp said Spiriva would be best for me with no Ventolin as not wheezing. Also this doctor said COPD always shows up on x Ray, which I know from reading this site is not true. He knows I have it from spirometry test but seemed very dismissive of it and just said not to worry about it and that I am taking diagnosis too seriously and getting anxious, which he can’t blame me for (very good of him, not!!!). Will have to go back again as just not getting anywhere and feel, as said at beginning, confused. Have read most of your posts and have got lots of tips and great advice, thank you so much, Sharon
Your GP sounds one of the most patronising, and ill-informed practitioners Ive ever come across. In my observation the people who do best with copd are the ones who find out as much as they can, and that starts with where they personally are at. The attitude he is taking is similar to what used to happen with cancer some years ago where doctors often tried not to tell the patient if they had it. Thankfully that has changed, but your GP seems to come from another era.
Having agency in our lives depends on having some control over them, even if this is only at the level of information. It's not for him to decide whether you are worrying too much about it, that's your decision. Print out my replies to you and take them with you if you want to. Or anyone else's that have been helpful. Tell him that he is making you anxious, not having information about your condition. Oh, my blood is boiling here 
And people react so differently with copd - your GP should know this, and he should be pleased for you that you are not gasping for air, not trying to make out you are some kind of hysteric for wanting to know about the condition. Sounds like he has a very fixed stereotype of the copd patient.
Boiling even more now
I agree so much and will bring my husband with me next time as I am not a very forceful person, unless it is about someone else. Do not know why each time I asked he muttered and said not too bad. If get no joy at next visit will pay the 170 euro to go private as two gps in same practice should not be so conflicted about medication and surely should liaise before over-riding one another. Would also love to do pulmonary rehab and they don’t seem to think that would be beneficial to me yet!! Am going to push harder as have 3 young daughters and need to stay well for a long time yet. He is making me anxious, thought I would feel better after seeing doctor and maybe having things explained more but ended up more confused than ever. Thanks for support and for making me get annoyed enough to do battle 😡
I have mild copd with Asthma and have been put forward for pulmonary rehab. Assessment next Tuesday. You need someone to back you up.
I wish you well. I struggled with the diagnosis and an now on anti depressants which I didn't really want but I need sleep!
I also found it very hard to come to terms with diagnosis and have feel very anxious since which is making life miserable at the moment. I think the pulmonary rehab will do you the world of good mentally as well as physically and I envy you the chance to do it. I will push for it but would prob be put on waiting list. Good luck with it and look after yourself, Sharon
Haha, good!
Our respiratory physios like to get newly diagnosed people into PR pretty quickly - I think there's evidence that if people can maximise their functioning, this will stand them in good stead - and of course if you can keep well and functioning, then the progression is slowed. I don't want to get into this too much as it fires me up and I need to sleep 
Get your husband to take notes - always good so that they know they can be quoted later on. If you want to save your money, you could try having a tactful conversation with the practice manager and explain how what is happening is winding you up and making you anxious. And if you haven't, do call the BLF helpline - you'll find them excellent in helping you. Take care 
In the same place as you! I am so confused even to the point where I am being given the decision as to what inhaler I think I should try given the evidence from those I have tried..seriously thinking going private!
I think some doctors ate not trained in COPD- you need proper diagnosis with tests at the chest clinic, ask to be refered to the Hospital. The correct medication is important.
I hope you dont het fobbed off if you do try the practice manager thst will sort things!
Good luck-keep strong and remember its your body!
Janzo 👍💐
Thanks Janzo, unfortunately no practice manager just main gp. Will phone today and hope to get a referral although don’t hold much hope as have asked twice before and told not needed yet. As said before best option might be private. Have stayed on Spiriva as have read that it can help reduce exacerbations long term but all this needs to be decided.
Morning shazza59, I'm like you new to this but I know that it's more scary not knowing what's going on, when the doctor changes meds about, my mum passed away in January from COPD and I myself have FEV1 of 44% and FVC 39% yet no doctor will give me a straight answer of what stage emphysema I'm at, I'm a single mum with a 12 and 20 year old dd's, can anyone help because not knowing is just as bad, shazza59 go back to the doctors with a friend and keep on because sometimes you get so nervous that you forget to ask questions and your friend can back you up and write things down if you do forget good luck 😇
Very sorry to hear about your Mum patfreeman and that you have emphysema too, such a worrying disease. Like you my doctor doesn’t want to tell me stage and now not even sure whether should be on Spiriva or not!!! It’s hard when you have to be normal for family too, I have 3 daughters, 13, 12 and 10 so sympathise with you. I will return to doctor with someone in tow for back up. Take care of yourself.
Hi, Shazza59. I've got moderate COPD with no wheezing but some reactivity, and was promptly prescribed Seretide for maintenance and Ventolin for exacerbations - had a bad one on Sunday triggered by 6 scented candles lit around the Easter Garden in church, would have had to have left the church where I am organist if I hadn't had Ventolin to help me breathe and found a place in a far corner away from the fumes. I see a respiratory nurse every year and was referred to pulmonary rehab when I asked soon after diagnosis (after finding out about it on this site). My FEV1 has stayed pretty constant over time at 69%.
My GP practice is in a local hotspot for lung disease, particularly asbestosis because of the railway works where youngsters used to play in piles of asbestos and throw snowballs at each other made of the deadly stuff.
It sounds as if your surgery doesn't have that sort of case load so doesn't have the experience to support you properly. Do as the other people have posted, go back, pester, print my story to take with you too if you like.
Hi Ergendl, sounds like you are same stage as me and I have no wheezing either and have never had an exacerbation as of yet (touch wood!) just a couple of anxious moments. Sometimes though feel a little sickly with different strong smells. You are lucky that you seem to be getting good treatment although very sad about your area and youngsters that used to play with asbestos. Hoping to keep my results as stable as I can too but not as yet getting help with that!!! I will go back and pester as really worried now. Thank you for your advice and I will show Doctor your story. Take care, Sharon
I know roey, it just doesn’t make sense. If it is an area they are not too sure on a referral should be made immediately. I feel so annoyed to be in this position and made feel then that I am really pestering them by making appointment after appointment just to get a couple of answers and right medication.
Never give up. Try to get your GP to put you in touch with the local RESP team.Ring BLF advice team they are very helpful and give you a few pointers. There is also lots of advice on this site at BLF.A second opinion may be advantageous, but keep the GP on your side.
Dan
Lots of good advice here Shazza which I can only emulate. Get a (third?!) opinion, and insist to be referred to a respiratory specialist. Doesn’t matter whether you’re in Eire, the UK, or Timbuctoo quite frankly, a lot of GPs don’t have much of a clue about these kinds of issues. You really need to see a dedicated respiratory specialist. Only then will you know for sure what kind of medication you need.
Good luck x
Thank you Symes, was diagnosed with spirometry by nurse in gp surgery and brought straight into doctor who offered no advice except Spiriva prescription and to give up ecig. Went back and saw another doctor in gp surgery who took me off Spiriva and gave Ventolin and just said walk as normal and said chest sounded fine and not like COPD even though obstruction showed up on test. X Ray clear and he said COPD shows up on x Ray ! In other words I am getting anxious over nothing and anxiety leading to sob!! Moderate obstruction so how can be nothing !!! Anyway definitely need a specialist. Thanks for reply x
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