Have I been misdiagnosed?: Now, funny... - Lung Conditions C...

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Have I been misdiagnosed?

MoyB profile image
MoyB
83 Replies

Now, funny things have been happening at our surgery lately.

Following a recent blood test, I was told I needed to be seen by the Diabetes Nurse, so I turned up for my appointment and, to cut a rather long story short, it turns out I'm not diabetic at all and shouldn't have been there!

Yesterday, I turned up for my COPD review and was told I'd already had it! I explained that I had an asthma review and had asked for COPD to be done at the same time but was told categorically that it wasn't possible to do both together as I would have needed a double appointment for it and that had not been booked! Also, I was told that they are distinctly different reviews and so should be done seperately. I had quite a discussion with the nurse at the time who, by the time I had finished explaining all the interactions and similarities between COPD, asthma and Bronchiectasis and the fact that I have no idea which one is 'keeping me awake at night' or 'making me breathless' etc, agreed that she would have a good look at my notes in preparation for another meeting to review my COPD in a couple of months time. Meanwhile, I had a phone call from someone at the surgery who went through a very short tick list 'in preparation for my COPD review.'

So there I was, looking a the nurse (a different one I had not seen previously) who was completely flummoxed as my notes definitely said I'd had a COPD review! I explained that I'd phoned to say I didn't need one as I was having a review with my resp consultant (July 4th) but had been told I MUST book one in. I spoke to my GP last week and while on the phone I told her that I had this review booked but didn't think I needed it. She said I MUST keep the appointment!

The nurse was lovely. She decided to do a 'base line' review and check my PF and go through a fairly basic questionnaire which was scored on a points system. She also had a good look at the letter from my consultant with his report of my review in July.

She was delighted to tell me that my 'score' had reduced from 25/40 to 14/40 which is 'really good' and she also told me that the consultant had noted my spirometry test as being 'normal'. I told her that he had been pleased to tell me that my result was 25% better than previously.

So then, here it comes ... she said, 'Well, people with COPD can't improve their spirometry results. So I'm wondering if you have COPD at all. I think you may 'just' have asthma and bronchiectasis.'

What do all my 'expert' friends think of this?(I know you're not medically qualified - just would like your opinions.)

You see, I'm taking the highest dose of steroid inhaler for my COPD and, if I don't have the condition, I don't think I should need it.

Any views you may have on this will be gladly considered as they will help me to decide whether to go back to the consultant about it or not.

Is this just a nurse who thinks she has more knowledge than she really has, or does she, in fact, know more than the consultant. In my opinion, either one is a real possibility.

Can people with COPD have improved spirometry results as dramatic as mine?

Could the equipment have been up the shoot?

All opinions welcome - serious or humorous!

xx Moy

83 Replies
mylungshateme profile image
mylungshateme

Well no advice but my mum was diagnosed with COPD as well as asthma for years then all of A sudden was told she doesn't have COPD.... so nothing would surprise me to be honest! I think they know a lot more now in respiratory and realise things are complex for example asthma is not just puff of the blue when running etc. Also conditions aren't always textbook. But either way I would get a second opinion just so you know and have appropriate meds! X

MoyB profile image
MoyB in reply to mylungshateme

That's interesting that your Mum suddenly 'recovered' from her COPD as I appear to have done!

As you say, they gain more knowledge every year, so the complexities of asthma are more fully understood now.

I'm leaning towards contacting my consultant again, but don't want to bother him without a good reason.

xx Moy

mylungshateme profile image
mylungshateme in reply to MoyB

I think this is a good reason to make contact to be fair! Yes I never really understood that with mum it was while she was undergoing trials at a different hospital for biologics shock and confused was an understatement after having COPD for 15 years.... and 1 stage palliative but "bounced back" she's just a walking mystery I guess.. x

MoyB profile image
MoyB in reply to mylungshateme

How is your mum now? Is she really better than she was, or is she just 'better' on paper because they've changed how they assess her?

Being something of a cynic, I'm wondering if something may have changed in the way people are being assessed and put into boxes (metaphorically). They use all sorts of algorithms now and if there isn't a box to tick they seem to make something up!

I hope your Mum IS doing well.

xx Moy

mylungshateme profile image
mylungshateme in reply to MoyB

To be honest she's the same as always has been has a p.a, constant cough, SOB, falls asleep when talking 😂🤣 sometimes daily living activities are a struggle some days more than others. Lots of triggers like weather, smoke, viruses, mould, pollen etc on regular nebs and 02 prn. However travelled to Jamaica for family wedding, It makes her almost chose what's worth being extra ill for if that makes sense. She's also been shielding since before official date except for wedding. She used to be in an out of hospital every few weeks but now we manage it at home as they don't really do anything when she's in except she picks up infections. So it works for her. I don't even think her meds changed like you say just the paper side... x

MoyB profile image
MoyB in reply to mylungshateme

Hmmm! It doesn't sound as though your Mum's 'All Clear' has helped her in any way. It's good that she has found ways of managing her condition herself, isn't it? It doesn't seem as though she's having a very easy life, but if she can stay free of infections that's a real positive. xx Moy

mylungshateme profile image
mylungshateme in reply to MoyB

That's what we aim for avoid any extra triggers/hazards! Literally contemplating seeing her today but we've said we'll all wear masks and stay in garden an no hugs. Xx

Damon1864 profile image
Damon1864Volunteer

I agree you need a second opinion T least you will get the medication you need . Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxxx 🌻🌻

MoyB profile image
MoyB in reply to Damon1864

Thank you. I think I will take this further, just to put my mind at rest. xx Moy

O2Trees profile image
O2Trees

Hi Moy - I cannot see why the asthma review and the copd review cannot be done at the same time - there are differences and overlaps and both show up in spirometry. This doesnt seem a very holistic attitude.

Ive always understood that one of the main distinctions between copd and asthma is that asthma is reversible, while copd isnt. I think there's a tendency for medics to ask if you've ever smokes, note that you are older (are you?), and then assume copd. So who knows?

Regarding your question about whether you need the steroid inhaler when you are so much improved, I would wonder if the improvement might be BECAUSE of the steroid inhaler, which reduces inflammation, and inflammation is heavily involved in the breathlessness in asthma.

I doubt the spirometer was damaged, so apart needing more information, which you clearly do, I would urge you to enjoy the improvement and see what they have to say.

O2Trees profile image
O2Trees in reply to O2Trees

You could try suggesting titrating your steroid inhaler dose (titrating being reducing it slowly until breathlessness kicks in, then just using slightly above the dose you have reached on reduction - sorry if you knew that!). I often find that if you use medical terms, the medical people tend to take you more seriously. Blagging basically!

I use symbicort's SMART system which is designed for asthma, not copd. This is basically adjusting the dose to what I need. My oxygen nurse introduced me to that. Doing the smart thing means I can use the lowest dose I can get away with, then if I do need more I take one or more doses and return later, or not, to the original level depending on need.

MoyB profile image
MoyB in reply to O2Trees

No one has ever mentioned Symbicort smart system to me. It sounds good and I might ask about it.

I had a chuckle over using the word 'titrating'. You're right about the medical profession taking you more seriously if you know the words. I once used the word 'uvula' (the dangly bit at the back of your throat) and my GP suddenly sat up and took notice of me. There was a dramatic change in his attitude. He said, 'Oh, are you a nurse?'. I told him I had trained as a Nursery Nurse, but was not actually a nurse. He slumped back in his chair, looking highly disappointed with me, and carried on as usual!

xx Moy

O2Trees profile image
O2Trees in reply to MoyB

🤣🤣🤣

mylungshateme profile image
mylungshateme in reply to MoyB

😆😂

Littlepom profile image
Littlepom

I simply love her use of the word JUST in relation to asthma and bronchiectasis. Yes you need to see your consultant, whom I hope is a bronch expert.You have a combination of complex issues and these nurses are simply not trained to deal with such a situation. They are only trained to do baseline tests for asthma and copd. They know nothing about bronch and certainly could not interpret its effects on the tests that they carry out. Good luck

MoyB profile image
MoyB in reply to Littlepom

It made me laugh too, Littlepom, and she did say to me then that she thought the asthma and bronchiectasis were quite enough for me to deal with!

I have decided that I will take this further. I think I may start with the Community RESP team as they are very good at getting through to the consultant and asking questions. I have great faith in my consultant and when I have my appointment he is wonderful, but outside of the appointment he seems reluctant to engage with me. I am thinking that if I go to him via the RESP team, they can ask the question for me during their weekly meeting with him and/or the other consultant at the hospital (they have done this for me previously over another issue). The thing is, it's not an urgent issue, but one I need to have an answer to to put my mind at rest. If I'm told I need to continue with the steroid inhaler, then so be it. No change. But it may encourage him to look again at my results and, if I DON'T have COPD, my notes will need to be changed. For one thing, if you are admitted to hospital with COPD, they use a lower 02 threshold whereas if you don't have it, they are more concerned about lower 02 levels.

I think medics are learning more about bronchiectasis these days, but still have a way to go! They need to speak more to people like yourself who have lived with it for many years. I agree with what you often say, that GPs don't know enough about it! My own GP is good, but says I'm 'complicated' and other GPs in the practice have tried to fob me of with one week of antibiotics on a number of occasions. When I tell them I need two weeks, they check my notes and agree with me. In my opinion, they shouldn't need to check my notes to know that as it's standard practice with Bronchiectasis.

xx Moy

Littlepom profile image
Littlepom in reply to MoyB

Everything you say is so true. You do need to know exactly what combination of conditions you have because as you say, the drugs you have vary by condition. Having said that. I have fostair as one of my inhalers, which contains steroid. Even though I only have bronch. For me it helps to keep down inflammation in the airways. I hope that you get it sorted out. Unfortunately you will spend your life educating members of the medical profession about bronch. Oh WHY don't they read the guidelines?

sassy59 profile image
sassy59

Some great replies so far Moy so I hope things work out for the best. I wouldn’t take the word of a nurse good as they are so hope your consultant can shed some light. Xxx👍💕

MoyB profile image
MoyB in reply to sassy59

I won't be making any changes unless my consultant thinks they are necessary. I've decided to try and contact him via the RESP team as the nurses (or a desgnated nurse) meet with him weekly and have previously been better at getting information from him than I am myself. He is a lovely man and is great during my consultations, but he is difficult to engage with in between those appointments. The RESP nurses are brilliant and if they can't get the info directly from him, they run it past the other consultant who is equally good, but does not deal with me directly as I am not her patient.

I'll get it sorted!

Hope you're both well.

xx Moy

sassy59 profile image
sassy59 in reply to MoyB

I’m sure you will get things sorted out. Take care. All good here xxx👍💜

MoyB profile image
MoyB in reply to sassy59

👍❤️ xx Moy

peege profile image
peege

Well I dont know much about copd however I do recall members who improved their numbers with a change of lifestyle & exercise. I was presuming that was spirometry testing. I particularly remember member Lynn (who was very helpful to me years ago) who dropped a level from moderate to mild I think.

Jaybird19 profile image
Jaybird19 in reply to peege

doing pulmomary rehabilitation and mobility is improving as it has done before after doing a previous rehab session some years ago.

MoyB profile image
MoyB in reply to peege

I'm inclined to think I am better at the moment since my last lot of antibiotics seemed to zap all the bugs that were lurking. Also, I am not troubled so much by vertigo these days so am able to go out and about more (by foot) which has improved my general fitness.

I was diagnosed with Asthma about 20 yrs ago, then, about 10 yrs ago I was sent home from hospital, where I'd been an inpatient for a few days, with a discharge note that said I had COPD. My GP said, 'No you haven't.' then said, 'But we'd better do a spirometry test, I suppose.' This was done at the surgery and the nurse said that it clearly confirmed COPD. Since then I've had two CT scans. The first one was noted as 'borderline Bronchiectasis' and the second one showed the Bronchiectasis clearly. Since then there has been more emphasis on keeping the Bronch under control than either of the other two conditions.

The more I read and write on here, the more I realise I need proper clarification. I'll definitely be in contact with my consultant, one way or another.

xx Moy

tomc profile image
tomc

If I believed all of my diagnosis`s I should have wings by now!! I lost the plot and said I still have a life to live and running back and forward cause you canny make your minds up is wasting what preciouses breath I have left.OHHHHHH No he said you are running on 49% lung volume and you have a lot going on.

Well that means I can run a hundred yards then? mmmmmm, Maybe small yards was the reply. VERY WEL EDUCATED PERSON ME THINKS, notttttttttttt

MoyB profile image
MoyB in reply to tomc

Hmmm! I hope any treatment you're having is maintaining the lung function you have so you can get out and about and live a bit! (Don't want to see headlines on the news about you running amok, mind you! Lol!) xx Moy

tomc profile image
tomc in reply to MoyB

HAHA, Running amok? More like up to my arm pits in MUCK!!!!!

I said I was 49% , I WISH, It`s actually 40% but then he said "your last function tests showed you were at 41%, THEN The Western general said "your doing well, you are maintaining your lung volume at 40%, keep doing what your doing" I thought, O good I can get drunk 6 nights a week and rest on the 7th night. HALLELEUGHA>

😇

MoyB profile image
MoyB in reply to tomc

🤣🤣🤣 xx Moy

Superzob profile image
Superzob

I’ve certainly learnt over the years that diagnosis of lung conditions seems to be more of a black art than a science. I started off being told I had late onset asthma (the reversible bit) and fixed small airways obstruction, which was translated as COPD, but neither emphysema nor bronchitis because I had never smoked. Then, entirely coincidentally, I had a whole body scan for a gastroenterological complaint and the respiratory team picked this up and decided that, as my lung damage had not progressed, I probably had bronchiectasis and asthma (at least there was one constant!).

Whether it’s really made any difference to my treatment (I have been on Symbicort for years now, and don’t get on with Montelucast or Relvar for the mucous production) is a moot point, so I just stick to what appears to work. Hope you find the right level of treatment for you.

MoyB profile image
MoyB in reply to Superzob

I have been quite happy with my treatment until now and don't intend to change anything without medical advice. However, if the nurse is correct and I DON'T have COPD, I will query why I need the high dose steroid inhaler. If I'm told I still need it, then so be it, but if the nurse has picked up something that has been overlooked (it can happen!) then I'd like my notes to be changed and my meds reviewed.

I'll get it sorted one way or another! The more I'm reading and writing on here, the more I realise I need to get it cleared up.

xx Moy

Charlie_G profile image
Charlie_G

With the caveat that I’m not medically qualified. I would say the nurse isn’t particularly well-versed. The primary distinction between asthma and copd is indeed that asthma is a reversible obstruction. But obstruction is measured using the fev1/fvc ratio, not your fev1. You can have otherwise normal fev1 and fvc and still have a non-reversing, obstructive lung disease such as copd. Even with a non-reversible obstruction, fev1 can be significantly improved with exercise, though, or even singing - this is why respiratory teams push the exercise for all patients. Twenty five percent is a significant jump, but my understanding is that fev1 could increase with stabilised, well managed copd, and we know it also increases with well managed asthma. The improvement could be a combination of both.

What would need to be looked at to say you don’t have copd is the ratio, not your fev1 increase. If your ratio is up within normal, that would be indicative of asthma being the primary culprit. However, as you have bronchiectasis as well, which is also a non-reversible obstruction, the odds of having a normal ratio are likely to be pretty low. So the only way to say for sure would therefore be a ct scan, which would demonstrate whether there were features of copd alongside the bronchiectasis, although my understanding is that this doesn’t always exclude having early chronic bronchitis.

Ergendl profile image
Ergendl in reply to Charlie_G

I think what you're describing is what's happened to me, Charlie_G. I was diagnosed in 2015 with COPD with an FEV1 of 68 which has improved to 82 following the suggestions of people on here. But I still have the obstructive curve on the chart, so although the reading is now in the normal range, I still have emphysema.

Charlie_G profile image
Charlie_G in reply to Ergendl

Exactly, Ergendl. The ratio determines reversibility in lung disease, not your fev1: you’ve improved your fev1 (well done, btw!), but you still have a non-reversing lung condition, so your ratio remains abnormal.

MoyB profile image
MoyB in reply to Ergendl

That's really interesting. xx Moy

MoyB profile image
MoyB in reply to Charlie_G

Hi Charlie! I knew I could count on you to come back with a response! You always put things so clearly and I value your opinion.

I have read and digested what you have written and this will help me to understand any response I get from the RESP team and/or consultant. Thank you so much for taking the trouble to explain it so well.

Hope you and Bod are doing ok.

xx Moy

Charlie_G profile image
Charlie_G in reply to MoyB

Oh, bless you. I’m always glad if I can help someone, Moy - I have to earn my keep somehow 😂

As I said, with having bronchiectasis as well, my understanding is that you wouldn’t expect your ratio to be normal, so the only definitive answer re. copd or no in your case is likely to be ct. Paeds operates differently to adults in several regards, but if you’re genuinely wondering about the need for the current dose of steroid inhaler, you could always ask about the possibility of reducing it and seeing what happens: you’d likely know within a few weeks if it was doing anything or not. The caveat there being that inhaled steroids do have a place in the management of asthma, so it may be you’re getting benefit even if there is no underlying copd. It’s a completely different situation, but Bod’s ratio is routinely below 0.6 (normal threshold in adults is 0.7, and 0.8 in kids), and she was on ever increasing doses of symbicort before being put on a really heavy duty steroid inhaler under the old, useless team. I said at the time I didn’t think it was necessary or making any difference, and within 8 months of the switch to London, having got to the root of the actual problem, she was off all inhaled steroids completely - they’d had her unnecessarily on steroid inhalers for about 8 years. There is a lot of educated guesswork in respiratory, and the law of averages alone means they will therefore be wrong some of the time.

Anyway, good luck, and aI hope you get some answers.

MoyB profile image
MoyB in reply to Charlie_G

Hi Charlie.I spoke to a Community RESP nurse yesterday. She confirmed what the nurse at the surgery had said as, looking through my notes, she found that my latest referral to their team noted 'restricted airways disease' and not COPD (although they are similar in presentation).

She explained that my asthma and bronchiectasis are my main issues and that I do need the high dose of steroid inhaler (Relvar) as this is to control my asthma, alongside the Spiriva. She did say that if I was on Incruse, she would be saying something different (I was on Incruse until last summer when a RESP nurse advised me to try Spiriva instead).

Finally she advised me to contact my consultant's secretary and ask for further clarification. Although she had reassured me about the need to continue with the inhaler, she could also see my point about needing to know the definitive diagnosis so that I would not mislead anyone involved in my care in an emergency situation should one arise in the future. Given the number of trips I've had to A&E over the past few years, she agreed that I had a valid reason for getting this clarified.

I've written a first draft of a letter to my consultant which I will review and probably rejig a few times before sending. I was rather hoping that the RESP team would take on this bit as I know they have greater, regular access to the consultant than I do but I'll write and see how I get on.

I feel a bit as though I'm making a mountain out of a mole hill, but I think it's important to have the correct information recorded as these things can come back to bite you.

A funny example of this - I had a small cyst removed from my 'middle' finger joint. Some while later another cyst popped up on the opposite side of the joint and I was referred again to have that one removed. The consultant at the hospital refused to remove it as I had already had one done. She involved an OT who, she said, could provide me with 'little thimbles' to wear on my finger so that it wouldn't be painful when I had to dive into the overcrowded filing cabinet at work or my equally crowded handbag. When I told the consultant this was not likely to be helpful, she suggested I should retire from my job - I was still in my mid 50s!

Anyway, with the OTs full backing (she had no clue as to what was meant by 'little thimbles') I asked for a second opinion and was invited to have the cyst removed at another hospital. The surgeon seemed a little surprised when I presented my middle finger to him (politely, of course! Lol!) but he saw the cyst and went ahead with removal.

A year or two later, a cyst appeared on my 'little' finger so I trotted off to my GP to ask for a referral to have it removed. He told me I'd already had it done once so they wouldn't do it again! I told him that I'd had two removed from my 'middle' finger but had never had one removed from my 'little' finger. He was insistant that I had, as it was written on my records. I proffered my little finger and urged him to find the scar! He refused to look and continued to insist that I'd already had it done. I'm guessing that the post op report had been dictated and 'middle' finger was accidently written as 'little' finger. Fortunately, the cyst in question finally burst and went of its own accord, but not before I had lived with months of discomfort and pain in the joint.

So, given that the medics work appears to be directed by the written word, I think it's important to get it right. If it can cause refusal of a small cyst removal, who knows what else may be refused in the future on the basis of incorrect information in my file.

I will get this sorted one way or another, and thank you again for your very helpful posts.

xx Moy

watergazer profile image
watergazer

I would think a c t scan is required to diagnose your lung condition(s) so maybe reach out to your consultant xx

MoyB profile image
MoyB in reply to watergazer

Hi! My last CT scan was in October 21 (I think - or it was probably October 20, come to think of it) , so I think they should be able to see from that if my longstanding 'COPD' actually exists!

I am so aware that Doctors can sometimes miss things or no one checks to confirm a diagnosis made years previously.

For example, I've had a diagnosis of Menieres Disease since 1996, and only recently have I been checked again to see if anything else is going on, due to a change in symptoms. It does look likely that the first diagnosis is correct, but good to know that it's being checked as there have been a lot of advances in diagnoses and treatment since I was first diagnosed.

xx Moy

peege profile image
peege in reply to MoyB

Just to mention, in the late 90s I was diagnosed & treated for Labyrinthitis (with betahistine when it flared up). Fast forward years later to a new practice after a move it flared up just before driving to South France. On emergency appointment to request betahistine the doc then diagnosed menieres . My actual GP rang later explained he was the practice 'balance expert' & to go in straight away for his test. After he'd done the tests he told me I didn't have menieres or vertigo and that ihave right sided vestibular disease & gave me exercisesto do. When I told my back therapist she said "that sounds like the Epley Manoeuvre I'll show you" & it cleared up straight away. Nowadays if the dizziness occurs I do it myself from a youtube video. Worth a try in case you haven't really got menieres......anyway, just shows they don't always get it right. ×× P

Izb1 profile image
Izb1 in reply to peege

I did suffer from labryinthitis and the epley manouvre didnt work for me, although I had it for 4 years and spent the first 5 weeks in bed being sick. It damaged my hearing and eyesight in my right side and left me with a terrible balance problem. I take Serc ( betahistine) if any signs, if I am out and havent got anything then travel tablets will do, before going onto Stemetil if it progresses. It baffled the ent doctors for years. I had wobbly eyes for quite a long time too. Its a horrid problem x

MoyB profile image
MoyB in reply to peege

Unfortunately, the Epley procedure doesn't work for me as I don't have crystals in my ears. However, I know several people who HAVE benefited from having it done and one of them goes every year or so to have it repeated at the Drs surgery as he is trained in the procedure.

I saw a consultant a few times in 2020 and one day she got very excited and said she thought she could cure me. She was so enthusiastic I let her carry on and she introduced me to a physio who was trained in the Epley manoever. We all paraded to the room next door ie the consultant, a nurse, the physio, my husband and me, and the physio did some preliminary tests to see if I would benefit from the full procedure. He soon announced that I was not a candidate for it. The consultant was SO disappointed! I wasn't as I knew it wasn't going to work but she was so insistant that I would be cured that I let them go ahead and try.

Unfortunately, that particular consultant was work with elderly patients who had falls and she was not ENT trained.

I'm pleased the procedure worked for you, though, as vertigo is horrible and can be very limiting. It's always so good to hear that someone has found something that helps.

xx Moy

watergazer profile image
watergazer in reply to MoyB

Sometimes it’s the radiologist who knows best

Piperava profile image
Piperava

I would agree with watergazer and request a CT scan. My late husband was told he had COPD and 3 years later after a CT scan due to having 1 too many chest infections was diagnosed with IPF and not COPD. Good luck.

MoyB profile image
MoyB in reply to Piperava

I had a CT scan in October 2020, but was only told that it confirmed Bronchiectasis in both lungs. No mention then of COPD although all my previous dealings with my consultant have been on the basis of having COPD, asthma and bronchiectasis. He seemed at that time to treat the Bronch as something new and sent me loads of written info and referred me to the community RESP team for help with chest clearance. At that time I thought, 'Bless him! The COVID situation is playing havoc with everything and he's forgotten that I'm already being treated for Bronch.' I didn't take it up with him as the situation at the hospital was pretty dire at the time (he was clearly exhausted when I eventually saw him face to face) and I didn't wish to rock the boat and cause him or his team further stress. I was, perhaps, being too nice for my own good!

Anyway, I'm onto it now - have spoken to the community RESP nurse and, with her backing, am writing to my consultant for clarification.

Thanks for your post. I hope your husband is getting the help and support he needs now.

xx Moy

Suzie42 profile image
Suzie42

Lung function test is the best indicator I think

MoyB profile image
MoyB in reply to Suzie42

I have to be guided by the experts, but sometimes I think they can get a bit muddled when there are so many factors involved so I just need to get some clarification and establish a new 'starting point' if my diagnosis has changed.xx Moy

Suzie42 profile image
Suzie42 in reply to MoyB

You certainly want clarification. Good luck with it all xxx Jill

Otto11 profile image
Otto11

Your GP’s sound a bit like ours recently. Left hand right hand!I’ve had Asthma since childhood & about 8 years ago at my annual review at GP’s was told by the nurse I had COPD. Well that was a shock. I thing changed other than diagnosis. The following year at my annual review by a different nurse she said your notes say you have COPD but I can only see you have Asthma! So I was undiagnosed however that will still be on my record & really must try again to have it removed. I hope you get it sorted out. X

MoyB profile image
MoyB in reply to Otto11

It does make me wonder just what we might find in our notes if we were able to read them all! TBH, I'm quite tempted to request mine but don't think I'd ever find time to read them! My file is very thick and has become more so in the past ten years or so.

I find the casual way we're told these things is very irritating. To me, it's very important to know what I'm dealing with and to have a change in diagnosis without being told or being given an explanation is somewhat unnerving. I find myself wishing I could have a total medical overhaul and start my records again from scratch, throwing out all the old stuff!

If I could throw all my ailments away at the same time it would be even better! Lol!

xx Moy

Izb1 profile image
Izb1

I sometimes wonder if its guesswork with lung problems , not enough doctors or even consultants seem to know enough about it. After being treated for asthma for years and finding I dont have asthma but bronchiectasis , i find it hard to trust them at all. If you can I would get a ct scan at least that will tell them the condition of your lungs x

MoyB profile image
MoyB in reply to Izb1

I sometimes think we expect more of our consultants than they are able to do! At least, I do.

I have to remind myself that they are human beings and can't possibly hold on to all the information about each of us, so they read through the notes before they see us and work from there. That, in my opinion, is why it's SO important that the notes are correct / accurate.

I was once told by a university professor to remember that "an expert is someone who knows 5% more than you do." I think that's probably true much of the time.

I'm hoping my consultant may have another look at the CT scan that was done in October 2020. As you say, that would give the clearest indication of what my diagnosis should be.

I'm quite happy to NOT have COPD, as long as it's correct and hasn't just been missed off or changed for no good reason.

When I asked my consultant what stage my COPD was at (when he and I still agreed I'd got it!) he said that under the previous grading system I was classed as 'mild' but under the latest grading system I was then classed as 'moderate'. He said my condition hadn't deteriorated but the change in classification made it sound as though it had. At least, that's what he told me if my memory serves me correctly.

So perhaps, my apparent change in diagnosis is simply to do with new terminology within the respiratory fraternity. Perhaps they have started to differentiate more, instead of having everything under one umbrella term. Who knows?!

I will get to the bottom of it, but. like you, I'm finding it hard to trust the people in charge of my medical care. Which one do I believe?

Sometimes I just think, 'Sod the lot of it!' and feel like re-branding myself as a fit and active person with no previous health record whatsoever, stop all the medication and see what happens. Then I come to my senses!

xx Moy

Izb1 profile image
Izb1 in reply to MoyB

Ha! that sounds so familiar, stop taking all meds and see how I get on. It sounds daft but I think covid has done us lunggies a favour. I dont think there was enough time /money spent investigating lung disease and was put down to smoking. I think now that people are suffering lung problems because of covid there will be more money spent trying to cure it, so will benefit us in the long run x

MoyB profile image
MoyB in reply to Izb1

Good point! We can but hope! xx Moy

Tryphena134 profile image
Tryphena134

My local respiratory consultant says its probable I have some bronchiectasis as a result of childhood illnesses , a little asthma maybe, no significant allergies, no COPD despite locum GP diagnosing this a few years back off a radiologist’s report ( never even looked at the X ray). But following CT scan 3 years ago my local respiratory consultant decided main issue is hypersensitivity pneumonitis and been treating me for this since. . He called me in early this year following a particularly poor LFT and said could he refer me to the Royal Brompton in Kensington who seem to be the UK leading research and treatment hospital in the UK. They did a bronchoscopy last month and came back within 2 days with the results and a treatment programme. I realise the Brompton is probably not accessible or possible for many people due to distance and travel costs plus it’s quite draining. They do have 30 lung consultants though! And they are able to prescribe medications that aren’t available everywhere due to NICE restrictions. It’s a bit of a last resort and it sounds as if you’re not at that level thankfully but if you really want an answer it might be worth exploring at some stage.But I was told at the Brompton of their frustration sometimes with patients not being referred on to them early enough. You can go privately for consultation there but I think the tests are horribly expensive and you’d soon run up big costs but they do seem to have back doors to getting people onto NHS side sometimes. I’m told there is a good specialist lung unit in Oxford JR and one of the Manchester hospitals too. Hope this info helps.

MoyB profile image
MoyB in reply to Tryphena134

Thank you! I'll bear all that in mind and see how I feel about things once I have my diagnosis confirmed.

xx Moy

Morrison10 profile image
Morrison10

Good to have RESP nurses who can liaise with your consultant, hope you can get it all sorted soon, before winter weather, not good for our lungs. I was diagnosed with bronchiectasis 65 years ago, have one lung partly collapsed on other, no suggestion of doing anything about it, too old now I expect! I Nebulise twice daily, each session takes nearly an hour. Was given Nebuliser immediately saw current consultant, previous one no real help. Good luck, Jean x

MoyB profile image
MoyB in reply to Morrison10

When I was first diagnosed with bronchiectasis in 2016, I was full of phlegm (usually green!) and I asked the consultant about having a nebuliser. He warned me off using one as he said there was evidence that showed they could do more harm than good if not properly cleaned and sterilised. He said I didn't really need one so to leave well alone.

There are times, however, when I think one might really help. The thing is, I don't want to start using one unless it's considered really necessary, although I must say, when I've had to use one in hospital it has brought such relief!

I don't envy you having to spend so much time on it each day, but if it's beneficial it can only be a good thing to do. After all those years of Bronch management, you must know what your body needs you to do and, like LittlePom, I expect you could write the book about it!

xx Moy

Digger0 profile image
Digger0

I was "diagnose" with asthma after a short visit to a Respiratory Consultant due to a cough. He said - take they strong inhaler for 1 month, if it gets better, you are asthmatic and can reduce the inhaler !!!! 20+ years later after numerous chest infections every year (with a cough) but no shortage pf breath etc, and taking inhalers, I got covid in 2020 and the CT scan showed I had bronchiectasis. I'm now off my inhalers, on AB's three times a week and no cough!!

MoyB profile image
MoyB in reply to Digger0

I suspect that some of us gain diagnoses as we go along life's way and no one queries them until something significant occurs, like your COVID. I think there may be more proffesional interest in Bronchiectasis these days - it almost seems to be the 'new kid on the block' although it's clearly been around for many years! Perhaps it's because they only now have the CT scanners efficient enough to show it up clearly.

I'm really glad to hear about your ABs and no cough! I'm hoping to go onto Azithromycin three times a week after November (as long as the Cardiology team are ok with me having it - it can cause irregular heartbeats and I've just had a cathater ablation to try and stop mine happening). If I could live my life without coughing I would be very happy indeed! Sometimes it's just apalling - really loud and 'fruity'. It sounds awful and, of course, everyone tells me I have an awful cough (as if I didn't know) and I should go to the doctor!

xx Moy

Digger0 profile image
Digger0 in reply to MoyB

Fruity coughs - I remember them well! Good luck, my Azithromycin seems to keep mine in check! I have just had 2 devices fitted to mend a congenital hole in my heart!

MoyB profile image
MoyB in reply to Digger0

I'm curious to know how they mend a hole in the heart and what devices they use.xx Moy

Digger0 profile image
Digger0 in reply to MoyB

As the pressures were ok in both sides of my heart, they used hand woven titanium "umbrellas" for a better name. They went up through the Femoral veins in my groins and pushed the device out through the end of the catheter and tightened it up basically. As my hole had strings across it they used 2 devices - one 19mm in diameter and one 10mm in diameter :) The red lines show the smaller, bottom one in place. See youtube.com/watch?v=ZOtk_FS...

Echo of my heart showing one of the devices
MoyB profile image
MoyB in reply to Digger0

Blimey! It's absolutely amazing what they can do now, isn't it? Thank you for telling me all about it - I would never have thought it possible!xx Moy

Digger0 profile image
Digger0 in reply to MoyB

Totally agree with you - i was only in overnight as I live 2hrs away from the hospital!

MoyB profile image
MoyB in reply to Digger0

Fabulous! Xx Moy

Karenanne61 profile image
Karenanne61

I can only tell you that my fev1 was higher at Harefield compared to my usual results, as were my sats! I don't know if it's differently calibrated equipment, more skilled nurses and technicians, us patients improving our technique or what! It's a mystery!

MoyB profile image
MoyB in reply to Karenanne61

Well, I did wonder if perhaps the equipment was telling fibs when mine was done, but it did match with how much better I was feeling so I think it was probably right.xx Moy

Karenanne61 profile image
Karenanne61 in reply to MoyB

I hope you soon get clarification and the appropriate treatment.

MoyB profile image
MoyB in reply to Karenanne61

👍❤️xx Moy

slram profile image
slram

Hi MoyB-All I did was a search on Google and the botto line is COPD cannot be reversed.

MoyB profile image
MoyB in reply to slram

Yes, I know, thanks. That's why I want to find out what's going on as I've been diagnosed with COPD for well over 12 yrs and now, suddenly, I don't have it!

I know I should jump for joy really, and I will, if it proves to be correct!

xx Moy

slram profile image
slram in reply to slram

That is crazy!! Ii wonder if these docators and nurses have a clue as to what they are doing any more, I swear. I am very skeptical of their knowledge and ability and more. Good news tho!!! What kind of symptoms are you having?

MoyB profile image
MoyB in reply to slram

My current symptoms are quite mild. I cough everyday, sometimes productive, sometimes dry. I find it difficult to walk far or fast! My husband is 80 and I can't keep up with him when we go out, although I'm only 71. I can't walk and talk at the same time, even though I'm walking really slowly. I get at least three infections a year.

When I have an infection, I have mucky coloured phlegm, often green. I find it difficult to walk to my local shop and have to stop once or twice on the way to get my breath. I wheeze a lot. I feel permanently exhausted. Some days I can't walk 17 steps on the flat from our bedroom to the kitchen without becoming severely breathless. I have 'do nothing' days when I don't bother to shower (or even wash, sometimes), and I spend the day dozing on and off in my chair. We have to have Wiltshire dinners on those days, unless my husband feels like rustling something up.

xx Moy

slram profile image
slram in reply to MoyB

Wow. How long has that been going on? What would it be if it isn't COPD? I had viral pneumonia last November and haven't been right since, but not that bad. I hope you can get to the bottom of this.

Sgt_Pepper profile image
Sgt_Pepper

Good to know that Dr Google is so infallible!

MoyB profile image
MoyB in reply to Sgt_Pepper

🤣🤣🤣 xx Moy

slram profile image
slram in reply to Sgt_Pepper

Just helpful sometimes, that's all. Medical Journal Daily and Web MD more reliable.

Alberta56 profile image
Alberta56

Best wishes - hope you can get this sorted soon. The various answers are very enlightening. It looks as if you could sometimes get as good a diagnosis by sticking a pin in a list.

MoyB profile image
MoyB in reply to Alberta56

👍🤣🤣🤣 xx Moy

CDPO16 profile image
CDPO16

Nothing to add Moy other than to wish you well and hope that you get some clarification xx

MoyB profile image
MoyB in reply to CDPO16

Thank you! I will get to the bottom of it and let you all know.xx Moy

CDPO16 profile image
CDPO16 in reply to MoyB

I admire your resolve Moy, good luck xx

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