For the past 3 years i have been trying to get a diagnosis for my breathing issue. It started harmlessly, i had this crackling or bubbling sensation coming from what i thought was my throat. After i realized it wouldnt go away after force coughing i got worried. Long story short, ive had many chest x rays, pft's, 1 ct scan, blood tests, ive been to multiple lung doctors, 2 cardiologists, and 1 stomach doctor, been on many medications and inhalers like trellegy ellipta which does not work like it did before, none can diagnose me. Recently, my doctor told me to take a Pulmonary stress test in order to see what we can do from here as my last ct taken 2 years ago showed nothing in my airways. I took the PST, i thought i did horribly as when i laid down i felt like i couldnt breathe and i was extremely anxious (i am very prone to anxiety especially when it comes to my health). According to the report, the PFT i took before the stress test showed that i scored in the upper hundreds, like a 113, above average. The report also said that there was a mild decrease in Cardio function along with a mild decrease in SP02. Other than that, all scores were fine. My lung doc said i should see a Cardiologist and so i did, did a thorough echo and ekg and it showed nothing. Cardiologist said my body is deconditioned and prescribed me propenerol, b12, and some injection to help my muscles. He said that i should be assured by my PFT as the number i produced were "text book numbers". I went back to the lung doctor and he said he doesnt know what more to do and said that while i do have trouble breathing, he said the issue does not seem to be pulmonary. According to him, my "lungs are very healthy". I asked for a Bronchoscopy or a Lavage, he said he would not do it as according to him which he bases off all these tests, there is nothing indicating that there is mucus or anything in my airways. This contradicts my symptoms however as when i force cough, i can feel my left lung vibrate, around the upper part (this started with my left lung and now it seems to be on my right side as well as of 10 months ago). Also, when i use hypertonic saline i can feel sometimes mucus moving inside my chest. Sometimes my chest feels tight and stiff when i take in a full breathe of air and sometimes it even hurts. The doc said i should now see an Endocronologist as i may have a hormone imbalance, however, i fail to see how this will make me feel better or how it relates at all. He said afterwards i should see my PCP for further guidance. I'm really at a loss here, im depressed, my quality of life has decreased so much, I quit my job as these exacerbations became too random to manage. I have trouble sleeping in any position as i feel like i cant breathe. I don't know where to go from here, i am at a loss for words and hope. I suspect i am still too early to be properly diagnosed with a pulmonary issue as it was very unusual that my Cardio function and SP02 declined at all, which depresses me even more. Also took a chest x ray yesterday as per my doctor's orders, you would think something would come up considering the severity of my symptoms but no, nothing abnormal.
Never been able to cough up anything, maybe had 2 instances where i coughed up this very sticky glue like mucus, but nothing crazy, no crazy coughing fits, but i can feel the mucus loosen when i use 2 vials of hypertonic saline. After use i can feel a bubbling sensation coming from my lungs when exhaling. I dont know what else to do. I dont know where else to go.
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Guy_001
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Your case sounds very complicated, but I would suggest that stress is exacerbating it. Remember none of us on this forum are medically qualified, so we cannot give an informed opinion. A lot of people find that anxiety makes lung trouble worse. Would it be a good idea to tackle the anxiety first?
I have copd and the bubbling sensation you talk about sounds like mine when I have a lot of mucus during a exacberation. When I finally cough it up it is whitish and very sticky. Maybe you would do well to get another opinion. Good luck!
Hi you say you are prone to "anxiety" - That can make breathing worse and even be a cause.
I get breathless and I don't know why, I mean different than a COPD flare up. Just find it hard to breath.
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You say you have a tight chest - I get that sometimes and think it's related to my "Dyspnea"
You say your Dr advised an "Endocronologist " - Yes that can affect in many ways,
In 2005 I have a very high thyroid and that causes anxiety and weight loss - Then after treatment my thyroid went low which can cause low mood - I have been stable on Thyroxine my TSH is normal as is my T4. But I can see on my records my T3 is low. I have put all this as endocrine problems can make one feel rotten.
It may have nothing to do with your breathing problems, but your doctor must think it possible.
You said you asked for a "Bronchoscopy" - Why on Earth would you want that if you have been told your lungs are healthy?
Your Echo was good so that is good news.
You are in a tangle and it's making to more anxious and I know to well, anxiety make us miserable,,
You may be good to write down your main worries, go to you doctor and tell him/her it's making you very anxious and ask him/her why they want you to see an "Endocronologist "
I went to my Endocronologist and they are good and will listen and if that is not the problem, they could point you in the right direction, they are very clever.
I can't tell you your problem I am not a doctor but I suggest you get something for your anxiety and to make sure you get sleep. If your doctor wants your to see an "Endocronologist " Then I suggest you do, reason is at least you will feel like SOMETHING is being done.
I asked because i do not feel like my lungs are "healthy". How can they be, this has been transpiring for 3 years now. I have tried on numerous times to live a normal life, however, these exacerbations are too random and uncontrollable, even when i dont have anxiety.
Ok but problems with your adrenal gland can cause breathing problems and panic attacks. Probably that is why your doctor suggested you saw an "Endocronologist " .
They will do checks and if you tell them you think it's your lungs, they will listen. Ask you Dr why he would like you to see an "Endocronologist " - It would be a start,
I can't say they could help but it's possible. and being your Dr wants you to be seen by an "Endocronologist " it would be a very good idea to do just that - I did and they helped me.
I had High Thyroid and main problem was Panic attacks, anxiety -but they sorted it,
I really suggest you ask your doctor why he wants to refer you and if he suspects an Endocrine problem, you would IMO be wise to go an "Endocronologist " - They are the ones to deal with it.
Might be a good idea to ask your doctor for help with you anxiety - Whatever the reason it will make you miserable.
Every thing I have typed is in response to what you have said, I am not advising you accept, to see your doctor to help with your anxiety and go see "Endocronologist " .id your doctor thinks that's a possible cause,
Anxiety itself plays havoc with breathing and airways.do u smoke at all or vape?is the hypertronic saline prescribed by a dr? It is 7% which is v sting and 2 should not be used together.
It took a couple of years before my bronchiectasis was correctly diagnosed, and it gave symptoms similar to those you describe although I had a more persistent cough and the diagnosis was confirmedaffter x-ray and MRI scans. I now have regular respiratory physio, and a breathing exercise regime which has eliminated the symptoms. You might want to consult a pulmonary physiotherapist, who may be able to reduce the worrying symptoms if not provide a diagnosis.
I noticed that one of the doctors you saw said your respiratory muscles are deconditioned. This means they have not built up any strength. Try singing exercises to improve them, especially diaphragm exercises. Also consider gentle yoga and/or Tai Chi. These will stretch your body and help to improve your fitness without risking over-exertion. Wishing you all the best.
Hi chook, not sure what your situation is but do you have the means to go private? If you are actually hearing crackling in your chest then there's something there. Bloody doctors do my head in. What they don't seem to realise is everyone knows their own body to an extent and should bloody listen more. There has to be other avenues they can go down and not just fob you off. If you are depressed about all this then they should be pulling all the stops out to help you. All I can advise is keep pushing them. I know it's a slow slog. You can but try
I think perhaps you would be better having some exercise, it would help to shift any mucus that you have and recondition your lungs, start slowly. Do you smoke ? You say that you have had exacerbations, have you been given the correct antibiotic and for a long enough period, did you have a sputum test. You have been through so many tests I am sure that if something wasn't right it would have shown up and wonder if your anxiety is causing these problems for you , sort of panic attacks. Perhaps speak with your doctor regarding this. I do hope you can get something sorted out x
nothing to lose seeing an endocrinologist. My long term steroid use for asthma/COPD crossover had caused adrenal insufficiency and an endocrinologist sorted me out. I’m also a big believer in complementary therapies. Reflexology works wonders for relaxation and reducing anxiety and calming my breathing. Lots of excellent advice above. Hope things soon improve for you.
The tests available to diagnose a lung/ heart condition have all been completed and the Drs have given you a clean bill of health. Some symptoms are driven by anxiety, breathlessness being one of them. I’m sure your Drs have already prescribed medication to treat your depression/anxiety but have you explored other therapies such as counselling. Have you thought of Yoga, it will not only teach you breathing techniques to help calm and relax you but also address the issue with your muscles. It’s very sad to hear you say that your quality of life is so poor when you’ve had what should be reassuring news about your health. Please try to be positive and set some goals to look at some options. Good Luck
Hello Guy_001...
Like others are suggesting, anxiety can cause problems with our breathing, the doctors can find nothing obvious that suggests any disease or condition that is common to them which I am guessing is making you even more anxious.
Have you thought about diet, try looking at what you eat because everything that we put into our body has some kind of effect on us, usually it's a good effect but some foods are known to cause mucus and breathing issues, such as dairy, it's worth thinking about.
Also there are issues such as sensitivity to certain scents, odours etc, such as the scent in a shampoo or laundry detergent, deodorants, there are so many things that can have a negative affect on our own little eco systems, I hope you get some kind of answer to your problem soon ..
Hi Guy-001, thought this might help , I spent three years going to hospital for tests for suspected cancer, which was never cleared by the tests. I have been taking inhalers for years my symptoms are still similar but nothing shows on Xray . My lung capacity is very low , breathing impaired, and permanent cough that flares up . Ongoing diagnosis is mild obstructive airway disease most likely COPD. I had two Bronchoscopes for diagnostic purpose also, all it did was illiminate any lung cancer. So sometimes tests don't give a diagnosis they just show no major health issue. Fortunately you are getting all the tests as I did , so like me I hope your symptoms remain level. I take an inhaler for the cough as do many people who have panic attacks but I also have two other inhalers to prevent major flares and open the airways so I can breath better. How about trying things to releive the cough warm drinks , sucking boiled sweets or things like herbal tablets. Best wishes for a solution ASAP
I am not knowledgeable enough to suggest anything medical , but I know that yoga breathing works wonders for lung capacity - and very simple stretches to open up your chest - just stretching g arms out to your sides first thing in the morning - massive info on line with breathing exercises.
The more oxygen you get pumping round to your organs the better - great for the brain - helps with reducing anxiety, organ function and general fitness.
Take a look at Patrick Mc Keown ‘s videos on you tube ….and his emphasis on gentle gentle breathing with closed mouth .
Sometimes a disordered breathing pattern can occur …..breathing with tight upper chest , or over breathing …no big breaths . Low and slow …..and gentle , gentle breathing …relaxed.
Has your breathing pattern been observed by a health professional ….how many breaths per minute , what part of lungs used , relaxed diaphragm , nose breathing …..what happens with stressful thoughts , does pattern change .
Meditation has helped me calm , gentle yoga ….no deep breaths ….gentle, gentle relaxed . Or alternate nostril breathing .
Progressive exercise programme ….The previous breathing site had a selection of suitable exercises . NHS too.
Hello Guy, I can feel for all your frustration with the doctors. I am on my second pulmonologist (the first one shrugged his shoulders and said I don't know what's wrong with you. Come back in a year.) The one I have now did prescribe oxygen at night for me as I was down in the 80's during the night, but I still don't have a diagnosis from her. I had 2 CT Scans and an x-ray that all showed scarring in my lung bases and some at the top of the right lobe. I went to my primary care a couple of weeks ago, he read the latest CT Scan report and said I had pulmonary fibrosis and ILD. He then listened to my lungs and heard crackles which I don't know if my last pulmonologist did. She didn't mention crackles to me if she did. My PFT's are normal, but dropped in my last one a little bit. I'm thinking perhaps the lung doctors don't tell me a diagnosis because they (a.) don't want to worry me, or (b.) don't want to be wrong. And this is what's so frustrating to me. I'm a grown up (73 years) and know I have to die of something eventually so TELL ME Please! My next step is to go to a Lung Center of Excellence. I really, really understand your frustration and all I can tell you is be persistent and keep digging. One more thing when I lay in bed at night I hear and feel the bubbling of air coming up my throat, but with the gerd I've had for 49 years I know it's my acid reflux even though I'm on medication for it. Try turning on your left side, raising the head of your bed on blocks and see a gastro. Good luck Guy!!
A specialist lung centre is a good idea if you can get there. I was referred by my local respiratory consultant to the Royal Brompton in London. I only had to go once thankfully as it’s quite a haul from where I live. But it was worth it for me. They did a bronchoscopy CR scan, took endless blood samples.
They agreed with my local consultant’s diagnosis of familial hypersensitivity pneumonitis. It’s taken a year but finally I am on Nintedanib anti fibrotic. My understanding this is only available through the specialist lung centres. My local consultant confirmed this in December that he isn’t allowed to prescribe but it is a constantly changing situation. All controlled by NICE. It’s a very expensive drug.
You know more than I did! I never even knew about the specialist centres. They work jointly with my local hospital but are definitely the lead partner.
They had to get a sign off from my cardiologist first but the appointment for an echogram came through pretty quickly and theDr at the Brompton was able to access the result via the NHS system the very next day.
There are a few useful videos on YouTube that feature leading staffat the Brompton talking about the results of Nintedanib which are quite illuminating.
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