I would appreciate hearing from anyone who understand this... some experience of it themselves or someone they know, or medical training but please do not get back to me to simply suggest going to the doctor or whatever!
I am a 62 year old woman who was quite healthy for a long time, then struggled a bit with a lack of energy on exertion, then some breathing problems which I was told were asthma, then regular infections in lungs and now very sticky mucus in throat, some wheezing, rasping, which I find can be helped if I use mucus thinners. I think it is now affecting my pancreas as it is not able to deal with cheese/fats. As far as I know none of my family ever had cystic fibrosis but is it possible I have it? I live in the UK where the odds are that even if I tell my doctor I think I may have it I will be told it is only asthma and only bronchietis, athough way those illnesses are managed with antibotics/inhalers etc seem to be identical anyway. Thank you for reading this.
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wiserlady
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It is possible - I believe an Irish lady of about 80 was dx’d with a rare genetic variant of CF last year - but highly unlikely. There are so many different lung conditions it could be. If you’ve ever smoked, the most common is COPD.
Some of us have non-cf bronchiectasis. Here’s a link to a leaflet which explains it.
But no one here can dx you. We’re not qualified. So I’m afraid you will have to see your GP
Neither has my DIL, but she has non CF Bronchjectasis. It's quite common to be DX with Asthma, but then later a CT scan proved non CF Bronchiectasis. That's what happened to me.
Thanks for response and many thanks for giving me some useful information. Hope things are better for you now.
It does sound like bronchiectasis which I have had all of my life. But you need to be willing to insist on having it diagnosed by ct scan and a bronch specialist. If it is bronch the management includes far more than just antibiotics and inhalers.
hello and thank you. can bronchiectasis explain the very thick mucus starting for the first time at the age of 60? and it seeming to affect the pancreas / digestion? I find that taking potassium helps, it gets rid of the thick mucus /breathlessness and cough.
Yes one of the symptoms of bronch is persistent mucus which thickens when an exacerbation ( growth if bacteria) is going on in the lungs. It requires rigorious daily physio to get it out of the lungs and at least 2 weeks of a suitable high dose antibiotic. If your chest is clwar your digestion should be better. Pancreas problems are not linked to bronch. You really need investigation by a bronch specialist.
Thank you, you actually answered the question, how refreshing. Ive had various lung infections and always been put on antibiotics for one week. But my doctor insists I just have asthma and maybe bronch, wont consider it being different/more. I am now taking potassium to think the mucus and stop the breathlessness/cough.
Potassium isn't going to get to the route of the problem. Go online and find a bronch specialist in your area. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral. Do not take no for an answer. GPs are woefully ignorant about bronch and general respiratory consultants are nearly as bad because they have very little training and hardly any experience of it. A bronch specialist will diagnose you properly and tell your GP which abs to give you and the strength and length of the course. Their physio will teach you how to get rid of the mucus and you really have to work at it.
This is your health that your doctor is messing about with. We have to be very pro active in our own interests and vociferous in sourcing the right treatment . Good luck. Pin their ears to the desk!
Hi, I understand what you are saying but have been through all of this route and when doctors refer me its always for asthma where all I get is inhalers. The same ones I can get off the doctor quickly with just a quick phone call. And I am supposed to travel 20 miles with no transport and wait six months to get it. I also cannot afford those journeys and time off of work. I can phone my doctor to get different inhalers and arrange for them to be delivered by chemist within days. And I am not in a position to travel to hospitals further away whatever the circumstances.
I am a very organised, resourceful and pushy person so its not through lack of trying, inaitiative, common sense or determination.
The way that bronch/ asthma and cf problems with lungs are treated seems similar to me anyway, all told that they cannot cure it only manage it and all in very much the same ways. In the past you would go to the doctor if you had another lung infection and be given a weeks course of antiobiotics and five days steroids. That is now a weeks worth of antibiotics and three days steroids.
You state your GP insists you ‘just’ have asthma and maybe bronch. Is she suggesting bronchitis or bronchiectasis. If s/he considers it could possibly be bronchiectasis then they should have referred you to a respiratory consultant with a special interest in bronchiectasis, who would undoubtedly get to the bottom of your diagnosis by a ct scan and would at the very least give you a sweat test.
My own consultant has had a 60 year old and an 80 year old test positive for cf. This is unusual but as Jenny has found, it is possible.
You suggest the treatment for asthma, bronchiectasis and cf ‘seem to be identical’. Whilst there are similarities, there are many more differences when it comes to treatment. If you GP thinks you have bronchiectasis for example 7 days antibiotics would generally not be considered long enough for this condition.
No one here can even remotely tell you if you have Cystic fibrosis or any other lung disease. Like it or not, you would need professionals for that. All I know about c.f. is from people on my lung transplant support group. In general they had c.f. very much since they were little, despite having good appetites could never thrive and are extremely underweight, they cough persistently and bring up A LOT of phlegm, have a lot of difficulty with bowel movements, have lung infections very often including pneumonia or bronchitis, and cough and wheeze more or less all the time. I'd say most of them already had lung transplants by the time they were twenty and some in childhood. And many of the younger c.f. ers are in need of a second or third (very rare) transplant.
I sincerely hope you don't have C.F. When I was finally diagnosed with Bronchiolitis Obliterans, it was strange but I was actually thankful it was not C.F. because I have seen how it ravages the body far more savagely than in my mind, than B.O. or other conditions.
Thanks for the reply, but some people are found to have c f as adults, which is why I asked. Obviously one goes to the doctor, but in the UK they tend to naively assume it cant be simply because of your age. DESPITE there being many cases of it. Simply because they never came across such a case themselves!
Maybe so. If you are worried then, push for testing. C.F. is can awful disease to have and I would wish it on no one. I hope you can find the answers you seek. 🍀
I didnt ask anyone to give a diagnosis. The question was is it possible? I know very well that you need a proper diagnosis which might mean blood tests, scans etc to be sure. I am 62 and have not lived under a rock all of my life. I did say please do not reply simply to suggest I go to a doctor.
I received various replies from people who had read what I ASKED and answered it. What is the point of replying if you ignore the actual question? Pointless. Reminds me of when I was on amazon and asked other people if they would recommend a certain washing machine. 26 wrote back advising me whether or not they would recommend it - very helpful - one said sorry I have no idea!!
I wasnt actually wanting to hear anything specifically. Just an honest answer to a straight question, which some of them gave me. I cant see the point in replying otherwise.
Yes,I am okay Bev. Just having a few down days due to meds. But in will get back up on my feet and forge ahead. 😁 I hope by now your roof is fixed?? Please tell me it is?? xx
No chance as roofers are all very busy here. My handy neighbour in another of the flats here has said he will sort it temporally. He has agreed that if necessary we will use the insurance which is a relief.
If you see a bronch specialist they will test you for any of the cf genes. Every time they find a new one they test me for it. Unfortunately all negative so far. I would be only too happy to find a cf gene. Then I would get all of the drugs and services which I am denied with non cf bronchiectasis, although it is the same condition in the lungs and responds to the same antibiotics.
The fact that all of my children and 5 grandchildren, with the exception of the type 1 Granddaughter are disgustingly healthy with no chest infections leads me to think that gene is not going show up in me. A mixed blessing. xx
If you can get a referral to a specialist lung hospital like the Royal Brompton you’ll automatically be tested for CF whatever your age. They understand about genetic variants. They accept gp referrals
My doctor insists its asthma/bronch and at best would only refer me to an asthma specialist. This is pointless. Far too time consuming and expensive to do, been there and done that and all they do is give you inhalers, which I can easily get from doctor much quicker. The reason I asked the question was to get an idea of what is going on. Obviously it wont be guaranteed to be correct without tests and a proper doctor replying but it is something to go by.
Cas is quite a poorly member and didn't have to reply at all. You won't get very far on here by taking this attitude towards our lovely members. Admin are hot on here and won't allow it either.
thanks but have already done a lot of research into the different lung conditions. and how to deal with doctor, I already know and they will not consider it. here a respiratory consultant gives you inhalers for asthma and tests if your heart is fine. been there and done all that. all a waste of time and very expensive waste of time as I have to take a day off work each time.
I am UK also and have been there and done that many times, Sometimes we just have to change our GP although at this time when most medics focus is preserving the nation, probably only emergency situations are going to be dealt with.
Been with my doctors surgery for many years. And they have gone from terrible to much better in past few years, now at the top of the leader board for the area. You dont even get to speak to a doctor normally, but to a nurse. I considered changing my doctor before the improvement, even then it was better not to. Thats somethign I would have been quick to do if a good idea - years ago. Now this doctors is the best in the area.
I know from personal experience potassium hurt my stomach quite a bit but saved my vital organs: lungs& heart. And yes bronch can cause mucus. I also have asthma , PoPd and as of last week emphysema. And I can usually tell which kind of episode I’m having bcuz here in the state I live asthma is more dry. The bronch stuff is more wet/mucus. If your adamant about your diagnosis being incorrect maybe you need a new gp. I do hope I answered at least a portion of the actual question
Thanks for your reply. I simply wanted to know if what I was asking about was possible. Not how to deal with the doctors etc. Without spending ages on explaining it is not wise or possible to change my doctor and would have done so if it was.
It would be very unusual to develop pancreatic insufficiency as a result of cf at 60, primarily because people diagnosed very late in life usually have at least one gene that is considered ‘very mild’, and these genes are usually the ones that don’t cause PI: the genes causing PI are usually class 2 or 3 mutations, the ones generally associated with a more severe disease profile, and the vast majority will be PI from birth. Developing PI in your 60s isn’t impossible, but it would be extremely rare. In addition, pancreatic insufficiency would effect the digestion of all food containing fat, not just fatty foods or dairy, so unless you have permanent, foul smelling, visibly greasy and brightly coloured bowel movements with abdominal cramping, and you’re actively losing a lot of weight, what you’re experiencing isn’t likely to be PI. If that IS what you’re experiencing, then you need to get screened, although from LittlePom’s reply, that will happen as standard if you get yourself referred to a bronch specialist.
No it is not foul smelling and all the rest. And I WENT to bronch specialist for three years AND athey insisted its only asthma and would not test. I merely wanted opinions from people as to whether or not what I was thinking about was possible.
And that’s what I did as a primary carer for someone with cf. I did actually answer your question, so why are you responding to me as if I was rude or dismissive? To reiterate, yes it’s possible, but extremely unlikely, and if your bowel movements don’t meet all of those criteria, then it’s almost certainly not pancreatic insufficiency. PI is constant, and causes all of those symptoms constantly. If you’re particularly stressed about your medical situation, then from experience, it could just as easily be irritable bowel syndrome. The bottom line is that no one here can diagnose you with anything, so having had answers to your questions and advice from others that have bronch, if you’re not satisfied that the diagnoses you’ve been given are correct, and regardless of whether you’ve already been to see a consultant or not, you need to seek further advice. The NHS is great, but the doctors are only human: I’ve spent the last 10 years repeatedly going backwards and forwards being told I couldn’t possibly have arthritis because I was too young and my bloods were negative, when in actual fact I had psoriatic arthritis that left untreated has wrecked my knees to the point I’m struggling to drive, one hip, both wrists and both hands. If I’d given up pushing the medical establishment, another few years and I’d have probably have been crippled. I would also have died a few years back when they initially refused to accept I had a brain disorder, and/or when they insisted that my post op meningitis was just post operative pain 🤷♂️
If you cannot relate to what I ASKED and have no idea then don't reply. I did say that in the question. It is obvious I am already consulting doctors or cannot go further with it.
Really! If you’re as intemperate with your doctors as you are with people here they must be very fed up with you. And try showing a bit of respect and kindness to other sick people.
If you bother to read my original post I asked politely and I said dont bother to reply if it is changing subject/suggesting go to doctor etc. Nothing rude about that. To me its rude to ignore it. Those who actually answered the question were thanked and got a very polite response. Ive been with my doctor about 20 years and we get on very well. In fact she is a client of mine with my own work. I very much doubt she would have been choosing to consult me over and over again if I am normally intemperate. Nor would I have so many clients on a waiting list hoping to see me soon. And my secretary would have left, she would not put up with a boss who is intemperate for no good reason or regularly. I wonder why my lovely man recently asked me to marry him if I am always intemperate. I am "intemperate" as you call it here and there when there is cause. This is a bit like when a guy nags me to go out with him and I say no and he says OH YOU MUST BE A LESBIAN. OR A MAN HATER OR FRIGID. And tries to put the blame on me for him not liking what I say, pretending that every man would get the same reply. Nowadays in the UK when you want to contact your doctor you speak to a nurse usually. Not an actual doctor. VERY OFTEN it can be a different nurse each time. You have no choice over any of that. But as I said in original post that was not the question I asked about.
dear me perhaps you should research problems with pancreas and post on a forum regarding that aspect, possibly the answer you are seeking can be found that way.
Apologies for calling you intemperate. I see from your profile, the groups you’re in, you have a multitude of problems. I hope you find the answers you seek and wish you well.
I so much agree with you. Yet several here started to find fault with my nature. Please tell them to stick to the subject and stop trying to work out my personality and find fault and talk down to me or criticise me.
My story is very similar to yours. I started with similar symptoms at the age of 54. My doctor was convinced that I had acid reflux because of my constant cough and would only treat me for that. After several years I insisted on a ct scan, which showed bronchiectasis. Joining this group helped me become more assertive and I insisted on seeing a respiratory specialist...it wasn't easy. Several routine sputum tests showed a particular bacteria which is common in cf patients. My consultant was confident I didn't have cf but ordered a test anyway. I tested positive in February last year at the age of 60. It has been a battle to get the right tests and treatment but I'm finally there. My cf is fairly mild but my lungs are quite badly damaged. Looking back I can see that I have always had symptoms, I was a very sickly child but grew stronger as I got older. I am now looked after very well at the cf clinic but do not consider myself lucky because of the stress and worry this has caused to my family who have all had to be tested. So in answer to your question, yes it is possible that you have cystic fibrosis but the only way to find out for sure, is to have a genetic test.
Thank you so much. It is refreshing to see someone actually answer the question I asked instead of changing the subject or telling me the sort of thing I already know. I am sorry that you have gone through this experience. It must be very difficult for you and your loved ones. I dont know what country you are in, here in the UK a respiratory specialist bangs on about asthma. I went there for THREE years to a respiratory specialist and had this each time. I almost went bankrupt financially because of all the days I had to take off of work to go there. None of it of any use to me. Just continually doing the spiro test - all pointless - or giving me inhalers. Travelling 20 miles to be given inhalers that I can get off my doctor - much quicker - with a simple phone call. I have VENTOLIN inhalers I have to use them a lot but if I use them now I get awful diarrhea. I was not a sickly child. I was well until a mature adult. The thing is that I am a very assertive person. I dont need advice on how to speak to doctors or whether to take this further etc. I merely wanted to know if this was a possibility.
with some people. but it woudl not make sense that a woman of 62 suddenly cannot tolerate dairy because it changes her mucus. it is far more likely to stomach is now producing a lot more THICK mucus and this is why when I take potassium it thins it.
The potassium was the only thing that made it possible for me to get rid of the wheezing, coughing and breathless, so I need it. No matter what others say. I need to be able to breath and move about and function.
I live in the UK too and like you, found it difficult to get my doctor to open his mind to other diagnostic possibilities. Unlike you though, I have had a chest infection nearly every winter of my life and have been known as having 'a weak chest'. I also lose weight very quickly if I don't keep an eye on it and have to keep my calorie intake high and I've also always suffered from sinus infections, so the signs of mild cf have always been there.
Finding this group has really helped me and although I don't post often, I respect the knowledge and caring attitude of everyone who contributes to this forum.
Best wishes and I hope you get to the bottom of your symptoms.
Thank you Jenny, I hope things are improving for you. I was sent to a lung expert for three years. Total waste of time. He kept saying it was only asthma or recurring bronchitis, which often becomes a lung infection with antibiotics, and each time I went it was 20 miles, my partner and I both had to take a day off of work unpaid to go, and wait six months for an appointment, and none of it any more beneficial than talking to the nurse at my doctors over the phone instantly. Just giving me inhalers I could have got much quicker from local nurse.
Did you mean bronchiectasis or bronchitis? I was diagnosed with the former at 55yrs old after repeated chest infection, a constant wheeze picked up by stethoscope & a very bad bout of strep pneumonia. I needed a CT scan for it to be confirmed. Hope that helps. 💕
Sounds similar. Here you dont get to see a doctor usually, you end up talking to a nurse who tends to deal with symptoms rather than diagnosis. Hope your chest is better now. When I have had to take antbioatics for yet another chest infection I take a lot of biotics after to try to heal the damage they do at least a bit.
Sorry... I see you are specifically asking about CF now having read the replies. I can only say that my pancreas is OK but my liver enzymes are often out of kilter. Hope you get some answers soon. 🤞😊
Thanks, no need to say sorry, I hate to think of anyone suffering, worrying or being sad. Lets hope your liver enzymes are back in kilter and stay that way soon.
Maybe you should have read the other posts and my replies to them. Some were very helpful and polite so they got a very polite response. And, I WAS referred to a lung specialist, no problem with that. But it did not help. I can get referred back there too, easily, but for many reasons it is pointless. You should have read the other posts, all of that information was there.
I was told I had asthma for years and then after developing breast cancer and various other issues was referred to a respiratory specialist whom I later discovered knew nothing about Bronchiectasis and it took ages to be given CT scans and treatment - which because he missed out ordering a scan one year for me in spite of the fact I wrote him a letter reminding him about it - we then discovered that the breast cancer had spread to the lung which should have been discovered one year earlier. This respiratory consultant was useless and MANY of them know very little about the rather more serious issues that can affect one - THE SAME APPLIES TO GPs!! I gave up milk products years ago which has helped reduce mucus and the only thing I use now is an acapella - no puffers - nothing - also have stand by antibiotics which have to be taken for 2 weeks minimum!! However if I get ill I get very ill and recently spent a week in hospital, thankfully before this new virus hit us.
Please don't bother to write that none of this is relevant to you - the people on this site are extremely caring and will always try to offer any information that they hope might be of benefit no matter how unreceptive the recipient.
Have also been on lots of antibiotics and in and out of hospital with lung problem, and very much same memories of so called expert consultants. Hope you feel better now and thanks for responding.
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Hi can anyone please advise possible Bronchiectasis
VISIT TO ASTHMA NURSE
is this good
