I've done a CAT scan, blood work, a spirometry test, and an endoscopy. But no on has diagnosed me yet. What should I do next? I'm confident Bronchiectasis is what I have.
What test should definitely confirm B... - Lung Conditions C...
What test should definitely confirm Bronchiectasis?
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Desperate4Diagnosis
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Damon1864Volunteer
Hi you need to be talking to your GP, you need a definite diagnosis. I would phone your doctor's and see if you can take to a GP. Good luck and let us know how it goes. Have a lovely day and take care 😊 Bernadette xx xx 🌈
When you say no one has diagnosed you yet, do you mean you are still waiting to be informed of the results? You sound to have all the initial tests required to establish a diagnosis. Damon is quite right, you might want to get in touch with your GP or the consultant’s secretary who ordered the tests.
Good luck
Cx
My results all came back normal.
In 2016 I had bronchitis, and in 2017 I had walking pneumonia and since summer 2017 I've had sputum to cough up on a daily basis-- particularly after eating, any type of exercise, lying down, sometimes even just laughing. It can sometimes have blood in it.
It can also make me breathless, wheezy/breathless with activity.
Everyone tells me I have acid reflux because I think that's the easier answer, but nothing for acid reflux has helped me condition.
The only thing that provides relief is when I'm able to find work the congestion up enough that I'm able to cough everything out.
This has completely altered my life and I need to know what I have so that I can start treating it in the most effective way possible.
Oh man! You sound just like me!! I've been undiagnosed since Xmas 2018 with all tests "normal" except I had an obstructive PFT at 68% with good fev1 at 93% and moderate reversibility. Told small airway disease but not which one. CT, x-rays, bloods, allergies- all normal.
Losing the will!
Also losing the will.
My life is miserable, how can all my tests the "normal?" Something is wrong and it's very taxing to keep searching for answers. I ebb and flow, where I shut down searching and then eventually return to looking for possibilities. I know I have to figure this out. If I ever get an answer, I'll be sure to post an update!
Sorry for what you're going through. Thanks fore taking the time to post a reply.
My consultant calls me a head scratch! I've even been booked in for a Methacholine Challenge test (for asthma), got an ENT referral, a echocardiogram for my heart and a cardiopulmonary exercise test up next. I don't think it's my heart, I run 10km regularly and but I think she's just trying to think outside the box, if anything, I can breath better when doing high intensity exercises. Casual moving makes me feel breathless.
I'm surprised there's someone else out there like me. Even the phlegmy after eating was a question I asked on here not so long ago. I just don't have any blood in my phlegm but bloody phlegm can be deceiving as it can come from sinuses, nasal cavity and even gums.
The closest I came to a diagnoses was bronchiectasis... But since that CT scan, my resp consultant and 2 other radiologists have disagreed with that and reported it as normal.
Please do keep us up to date.
in reply to Desperate4Diagnosis
Hello there
Please don't take this first sentence negatively it took my Consultants 3.5 years to confirm my diagnosis. Simi can imagine how you feel. I knew something was wrong I kept contracting pneumonia with no reason as to why. Lung function tests kept coming back as passable even though my oxygen kept dropping. Long story short what I am saying is it can be reallyf frustrating not knowing how or why but as I have learnt there are over not sure if it is 200 or 2000 different lung conditions that can mask one another. Hang on in there you will get a diagnosis i promise you.
All the best
Annie
Desperate4Diagnosis in reply to
Annie, thank you so very much. Are you in Iowa? If so, do you have a doctor you could recommend that finally helped you to figure out your diagnosis?
Thanks for the encouragement to hang in! I so appreciate it.
in reply to Lee2k182
My understanding is that small airways disease is an entity in its own right: the official name is chronic obstructive bronchiolitis (not to be confused with chronic bronchitis). Other conditions have small airway disease as an element of them, but you can have SAD in and of itself. When that’s the case, it’s usually due to exposure to pollutants, chemicals and/or passive tobacco smoke, although as a past smoker, if you have SAD, it’s more likely to be attributable to the actual smoking than anything else. Quite often small airway disease is simply labelled as COPD. Past infections can also trigger/contribute to SAD, which is a part of how it features in other respiratory conditions such as cf and bronchiectasis. If there’s no other underlying issue causing the small airways involvement, then your diagnosis is standalone small airway disease.
Lee2k182 in reply to
Hi Charlie, thanks for reply.
When my consultant 1st requested my HRCT scan she mentioned she wanted to rule out bronchiolitis. I had my scan on inspiration and expiration and was told no sign of air trapping and has since been reported as normal. No OB or BOOP, ILD or emphysema.
My consultant mentioned that asthma is a small airways disease, as is COPD. I've never smoked, done drugs or inhaled anything I shouldn't. I'm probably exposed to as much pollution as everybody else. I don't really know much about small airways disease to be fair. I don't feel like I have asthma as I'm still symptomatic with meds. But I dunno if I may have asthma as that is under control and my symptoms are coming from something else, hence why I'm having my heart reviewed. I'd love to do another spirometry just to see if I've improved or declined but my 1 year follow up isn't until October time.
You don't say who organised these tests you have had. Any tests results would be sent to the person who ordered them. If you are under a consultant's care you could phone his/her Secretary for advice.
Out of interest I have bronchiectasis and interested to know why you are so sure you have it.
I hope you manage to get the answers you need. Take care.
😊
primary physician, pulmonologist, & Gastro. doc.
Hope you get your results soon , I well recall the agonising wait for diagnosis. P
I know after I contracted pneumonia I coughed up discoloured mucus , sometimes blood streaked for years.
Has your mucus been tested to see if you have an ongoing infection.
Did the blood tests reveal an infection .
My lungs cleared of mucus in the end , although I still have throat mucus with cough.
It took multiple courses of antibiotics , some oral, some IV.
Also ate more fruit and veg, vitamins and garlic .
Garlic pills have some contraindications, so be aware .
Barely elevated MCH level is all my blood tests showed. Certain things cause excess mucus to build, one of which is food and activity. Certain food makes things worse, such as fruit.
Thanks for your reply!
It maybr worth trying antihistamine in case u have allergies? Pollens medium to v high past few months.do u have a bird or other pets? Just a thought
Have they considered asthma?have u considered it? Just a thought.maybe worth asking dr.i certainly hope u dont have bronchiectasis.its gd that results havent found anything.but doesnt give u answers.ru/have u smoked? Gd luck
Thanks for your response. I've been to both an allergist and a pulmonologist and they have not acknowledged asthma. : (
Def. thnk. that's the case tho!
Thanks for the thoughts! I do not have any pets.
I do take a daily allergy medication, as I've always had seasonal allergies and have a few other allergies as well-- ragweed, mold, dust mites, cats, peanuts, tree nuts. This was via a skin prick test in 2011.
I also did a food sensitivity test in March 2019 showing a few things with a positive IgG and lots of things with a Moderate IgG. This was ordered by by GP, though people I have seen since said not to trust this test.
I avoid all the foods on this list, but I have excess mucus buildup that needs to be coughed out after pretty much every food, not just those.
And again my issue isn't exclusive to food, but I can just lie down, talk to much, laugh, go for a walk and have the same buildup of of mucus that leaves me short of breath until I'm able to get it out.
Hi
I have a condition called laryngopharangeal reflux. It is not acid in nature like heartburn, it is also called silent reflux, because it may not be typical. A vapour containing pepsin rises to the throat and possibly sinuses, airways and ears in some.
Symptoms can include excess mucus, throat clearing, sore throat, globus, choking, coughing, difficulty swallowing, ear pain, post nasal drip, wheezing, breathing issues or asthma like symptoms, tight or heavy chest, palpitations, nausea, weight loss......People can have a wide range of symptoms. In the USA Dr Jonathan Aviv is a well known expert , he created the Acid watchers diet, which has helped many by reducing the ability for pepsin to do more damage.
The books are available on amazon etc
But basically it involves avoiding caffeine, fatty or fried foods, chocolate, dairy, citrus, tomatoes, onions, spices, garlic, preservatives for at least 28 days to see if it helps.
Foods advised white fish, salmon, tuna, chicken breast, tofu, wholegrain rice, wholemeal pasta, most vegetables apart from peppers, tomatoes.
Avocado, banana, melon, papaya, Bosc pear are only fruits allowed.
Oats, wholegrain cereal like shredded wheat, dates , maple syrup, manuka honey.
I don’t know if you have looked into lpr already or SIBO, But may be worth considering.
The usual acid reflux treatment don’t often work for lpr in fact some can make it worse. Gaviscon advance liquid is the thing that seems to help many. As lpr is often caused by a loose lower esophageal sphincter, a hiatus hernia may contribute to it. The Upper sphincter fails and the vapour reaches the throat and airways.
Some people have experienced aspiration and developed pneumonia or infection as a result.
The body is complex and with systems being so close, it is sometimes hard to tell. I had symptoms of lpr before bronchiectasis. The respiratory doctors feel it certainly may have contributed.
I hope you get answers soon.
Best wishes.
I'm definitely going to look into this. Thank you for taking the time to mention it as a possibility.
This is going out on a limb, but I thought maybe I had something called candida overgrowth (which I know most doctor's don't buy into), but desperate for relief I decided to switch to a candida diet, which is basically no yeast, no sugar, no processed foods.
Since early May I've basically been eating cod, chicken, avocados, spinach, kale romaine, eggs, carrots, sunflower seed butter, virgin coconut oil, chia seeds. It may have helped a little, but I do continue to have the same ongoing issues. Occasionally I've tried to work in some watermelon, oatmeal or rice cakes (the ones approved on the candida diet) and my excess mucus issues seem to get worse.
So, I don't know to eat, but I know I can't live off a handful of things forever. : (
Thank you again for sharing your story and experience. Anything anyone has to contribute is very helpful to me.
If it doesn't show on your CT scan you likely have not got it. Ask for a copy of your CT scan to be sure.
I was really hoping Bronchiectasis was the answer. Everything on this website about it, I agree with as impacting me. I guess I'm back to scratch again. Thanks for the help.
I was diagnosed with Bronc in 2008.
Then in scans in 2012 no sign of Bronc but still had symptoms and as a throw in told I had asthma.
In 2013, I was Diagnosed with COPD / Emphysema /Bronchiectasis BUT no Asthma..
When I asked about this I got the reply from GP lung`s are not a science even with a CT scan we can still get it wrong
OK.... SO, What's wrong with me now and when is it likely to change to just wind?
Should have shut my mouth...Cause now I have a colostomy bag /Ileostomy and it's always full of wind.
So now I just nod my head.. Just in Case I lose my leg or summit else goes wrong!! 
Thanks for the reminder that people can get things wrong. I don't want to give up just yet, but its discouraging when tests show no signs of anything, but you still have symptoms.
Thanks for your time to reply. I"m sorry to hear about your situation and truly hope nothing else will go wrong for you.
in reply to Desperate4Diagnosis
Unfortunately, for all we talk about science, there’s still so much we don’t know or understand. When you look at medical genetics, any doctor worth their salt will tell you we have literally only scratched the surface. My daughter has a readily identifiable diagnosis, for which there are definitive tests. She’s under arguably one of the top 5 respiratory units anywhere in the world, renowned for their research and cutting edge tests/treatments. After 12 months of being under their care, including 10 weeks as an inpatient, they still can’t explain why her imagery and test results don’t fit the clinical presentation she has, or why she does things (medically) the way she does. No clue. She’s exhausted all the appropriate tests currently available, and therefore it’s come to a point where we’ve had to stop focusing on the why, and instead concentrate on the what to do to best manage her condition. It’s the same as a couple of other consultants she’s under agreeing that she almost certainly has an underlying syndrome that accounts for some of her other, non-respiratory issues, but no one being able to say for sure what the syndrome is, or if it’s one that’s even been diagnosed before. We think we know what it could be, but there are no definitive tests for that, and even then, it would explain a lot of the issues she has, but not all of them. At the moment, I just have a kid with the worst luck ever to have 14 separate diagnoses, including a life limiting respiratory one.
I get your frustration, but a ct is classed as definitive for bronchiectasis, so if the ct was defined as clear, and there was no mistake in the reading of it, then it may be that you need to focus on getting them to properly treat your symptoms, rather than fixating on the what. The reality is that medical science is actually relatively inexact.
Desperate4Diagnosis in reply to
I emailed Dr. Lisa Sanders who does diagnostic medicine. Your reply reminded me of her response. This is what she had to say:
Thank you for sharing your story with me. I can only imagine how difficult it must be to live with this kind of uncertainty.
However, medicine is not something that can be practiced over the internet. I only see patients from my area because persistent symptoms and chronic illness require a doctor close at hand to help you manage your illness over time. I recommend that you find an internist who can help you make sense of what is known about your illness and strategize with you to figure out next steps both in getting a diagnosis that makes sense to you and getting therapies that will help you get on with your life. It is terrible when an illness takes over your health; it is tragic when it takes over your life as well.
Medicine, at its best, is a close collaboration between doctor and patient – a doctor who is willing to help you interpret what experts are telling you and think creatively with you, the patient, to figure out next steps. The role of the internist is to make a diagnosis but when expert help is needed, the role then becomes to coordinate the information and advice. However, there are many symptoms in which the underlying illness or cause cannot be found. Medicine is still young. So much remains unknown. A diagnosis is not always possible. That’s why it is also the internist job to work with the patient to mitigate symptoms and help them move forward with their lives.
There’s a lot of talk about wholistic medicine and yet far too often patients look for or expect wholistic medicine from someone who specializes in parts. Or a doctor who lives and practices on the other side of the state, or the country, or the world. I can only suggest that you find a doctor you can trust and work with that doctor to make the only life we have as good as it can be.
Best wishes,
Lisa Sanders MD
CT scan
After 3 years of constant infections I asked for a ct scan,was told it wasn’t necessary ,however I insisted and it showed Bronchiectasis!Due to high Igg levels I was then referred to Wythenshaw hospital to rule out allergies especially aspergillosis.Thank goodness they came back clear !I now nebulise saline and take azithromycin 3 times a week which has been amazing.Good luck but don’t give up xx
Thanks for the support. Having people like you respond to my post is really encouraging and it is giving me the momentum to keep working on this.
I had multiple infections with common bronchi bugs and a scan/bronchoscopy. I don't have much mucus when well. That's how they decided I had bronchiectasis. I think there is bronchitis in there too . Sometimes they're will ve a mixed picture.
When I was diagnosed, which is more than fifteen years ago now, the consultant showed me the scan and pointed out the dark areas on both lungs. He was very informative.
My gp treated me for asthma for years, even though I told her the inhalers made me worse and i didnt think I had asthma. It wasnt until i went fora ct scan that I found out I had bronchiectasis. A ct scan should show if you have this x
Hi Desperate4Diagnosis, have you seen a consultant? If you have you need to speak with him/her again. 8 years ago I had had all the tests you mentioned and all came back negative. I was in and out of hospital with pnuemonia over and over again. I also had reflux problems. I too was desperate so I spoke to my consultant and asked if there was anything else they could test as I was losing weight and going down hill fast. He agreed that we begin all over again and we would start with a CT scan on the new machine they were expecting any time. I received a call a week later at 4.30pm asking could I go straight to the hospital as my consultant wanted me to be the first person to be scanned on the new machine. I went and the result was Bronchiectasis, I was put on Azithromycin three times per week and I also had immunology injections for 1 year to boost my immune system. I am well and really enjoying my life. I hope you can take heart from my story and I and everyone else on this site know you need to push sometimes for help. Good luck and take care, Maximonkey
Thanks, Maximonkey. Your post gave me goosebumps! It is so lovely to hear that you are well and enjoying life!!
I will do a better job at pushing through.
I am underweight, but I contribute my weight loss to changing to a healthier diet in which I find it difficult to get enough calories.
I'm going to try a different doctor and maybe they'll be open to a new CT scan.
Thanks!!!
Hi, you are very welcome. You have not mentioned a consultant, do you not have one? GPs are great and mine was a life saver, however, without the greatest consultant I would not be alive now I was really that ill. Good luck, Maximonkey
I do have a GP, but some of the referrals they have given me to go see specialists have not been the most promising visits. Trying to find good doctors that really listen and will exhaustively work with you seems to be challenging. Good people are hard to find. Most days offices seems to be more like factories (at least in the US), where it is one patient in, one patient out. So sad.
Thanks again!
Hello
I’m in a similar situation. I have periods of very poor breathing and have FEV results which show mild obstruction. They thought it might be asthma, but metacholine challenge test said not. I had a ct scan which shows some scarring from chest infections/pneumonia/ atelacstasis. The consultant concluded that it’s problems from scarring which is a weird diagnosis.
They then sent me down the immunology route and diagnosed me with an immunodeficiency.
It’s confusing.
You seem to have had all the tests necessary. Usually it is the CT scan that confirms or denies.
You could ask for a second radiologist opinion from the NHS and if that is denied ask for a disc of the scan and any other results and take it to a bronchiectasis specialist consultant who takes private work at one of the leading pulmonology centres like Royal Brompton, Papworth, Queen Elizabeth Hospital Birmingham etc.
Post your location and members could maybe recommend the most local hospital thta has bronchX specialists
Thanks so much. I actually have a a disc of the scan, so that's good! I might try a different specialist and take the disc with me. Unfortunately I'm in U.S., so I'm not sure if what we have in terms of leaving pulmonology centers, but I'll do some checking.
Two hospitals specializing in bronchiectasis and other pulmonary illnesses are National Jewish Health in Denver, CO. And Mayo Clinic in Fl, and MN. I went to Mayo and am very pleased with my first visit and scheduled testing. I was also told that Nat’l Jewish Health is world renouned in diagnosing and treatment of pulmonary diseases if this is closer to where you live.
Thanks so much! This is really great information to have if I end up needing to travel elsewhere for an answer,
Do you know if it was a high resolution CT scan and did you have IV contrast? It may need an expert eye to look at your scan.
Yes, it was high resolution, but they did not do the IV contrast. Thanks so much for posting this. Everything helps!
I’m not sure if they need the contrast for a high resolution CT scan, to be honest. It’s good if your HR CT scan was clear. It probably means you’re unlikely to have significant lung disease. Something is going on though, and I hope you get to the bottom of it.
Thank you! Tired of feeling like I'm going to choke to death on my own mucus, so I hope I get to the bottom of this as well! I'm learning a lot of things on here and I can't thank everyone enough for the great responses. It's great to have an online community to turn to. I appreciate your time.
My diagnosis was following a CT scan.
Hi
Pretty good contributions from all the members and very good suggestions.
Especially the one asking to keep away from fixating on a diagnosis amd managing the life; and also the azitrhomycin treatment.
Try reverse engineering.
If GP agrees (for safety and contraindications) ask and try the medication (start with suspected Bronchiectasis) for the issues at hand, if that solves your issues then it gets your life back on line. Rather than banging head on the wall. If the medication for the specific condition doesn't help you, means the fixation was in the wrong direction in first place..
Good luck.
Hi D4D .... You may find something useful here at .... copdfoundation.org/COPD360s...
Thanks so much. Looking into this now!
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