I have been experiencing breathing difficulties for a few years (which have recently worsened) yet still no formal diagnosis.
It began in 2005 with chest tightness on exertion and a feeling of not getting enough air into my lungs - after a while symptoms seemed to subside.
Then in 2011, I had a 'relapse' (along with other symptoms including joint pain, palpitations, fatigue, tinnitus, acid reflux, dry eyes - I experienced all these in 2005 too) - a chest X-ray revealed nothing and mild asthma was diagnosed and I was prescribed Salbutomol and Flixotide. All blood tests 'normal'.
Then again, in 2014, symptoms worsened and I started having left sided chest tightness and 'weakness' along with more palpitations, when walking uphill. I had a bunch of cardiology tests and these came back normal, apart from mild arterial calcification. Again, blood tests normal, apart from high ESR, which fluctuated over the years.
Last year, symptoms worsened again - left sided chest tightness, a feeling of not being able to get enough air into left lung, shoulder pain on taking a deep breathe - and I feel I have to constantly flare my nostrils to breathe 'properly'. Also had 2 mild chesty coughs in the past year - something which I never seemed to get in the past. I had another chest X-ray (again normal) and was referred to the respiratory team at Charring Cross hospital - I had Spirometry (normal) and Cardio Pulmonary Exercise Test - which revealed very low inflammation levels and ventricular bigemmini/ectopics. I was discharged and my GP has now referred me back to Cardiology for Echocardiogram and 24 Hour Holter.
I'm still really worried, as these symptoms feel very much pulmonary related and I feel something has been missed/not diagnosed. I still have all other symptoms like dry eyes, acid reflux, worsening joint stiffness. I feel like I'm at the end of my tether and am seeing my GP on Tuesday - any advice would be much appreciated!
Thanks
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ZM1980
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They are quick to discharge you at Charing Cross..I was there 4 years I think.. I can’t see a chest CT scan in your tests you mention xrays. I am saying that because they didn’t give me one there either.. and should have because it would have avoided me a lot of pain with lymphangioleiomatosis, which I was finally diagnosed with.
Ask to be referred to the Royal Brompton Hospital on Fulham road, that’s probably not far from you, if not I was sent to St Mary’s as well but that’s at the other end of town.
Hi Happylondon, thanks for your advice and sorry to hear you had a difficult time getting a diagnosis. I haven't heard of lymphangioleiomatosis before, is it lymph node related? I told my GP I'm worried about my pulmonary symptoms and would like a CT scan - she said I can be referred back to respiratory after the Cardiology tests (see what the outcome is), so I feel I'm getting somewhere.
No nodules just multiple cysts which block your airways. It is a woman only disease. If they do a CT scan they will soon see. I don’t have any cardio problems. It mainly affects the lung, kidneys and liver but not everyone has all 3 affected. It develops around 34..
Thank you. I'm due to have the Echocardiogram on Tuesday, so will see how that goes. I feel I have breathlessness, but mainly affecting the left lung - it's a strange sensation, as if the top left part of the lung is 'stuck together' or airway narrowed. Also have reflux/oesophageal/throat irritation which seems to be worse on that side. Do you mind if I ask what treatment you have for your condition?
Ok good luck with your tests on Tuesday. I have Omeprazole 40mg for reflux, mebeverin for the colon, Prednisone as steroids, 4 inhalers daily Serevent and Alvesco am and pm, Ventolin and Atrovent as needed, vitamin D, Omega 3, A complex of calcium, magnesium and zinc, sleeping tablets they gave me several I use bromazepam at the moment. And now more eye drops for the damage the steroids have caused..
I have a nebuliser with budesonide and ipratropium I use when I’m getting a chest infection. Fingers crossed I am ok on steroids.
There is no cure for LAM, the only med which they have found having an effect on cyst growth is an anti tumour drug called Sirolimus and I don’t use it because it is for very advanced cases as it has disastrous side effects. For younger women they suggest a double lung transplant. And oxygen as needed.
Thank you. I had the Echocardiogram on Tuesday - the Sonographer/Radiologist said that structurally, everything looks fine with the heart and the results will be sent to the consultant. Nothing urgent that needs looking into. So will see what the consultant says. Have ongoing cough at the moment and difficulty taking deep breaths :/
Do you find the Omeprazole to be effective? I have GORD (long-term - which is also why I'm worried about possible pulmonary manifestation). Gastro and GPs always prescribe Omeprazole/Lansoprazole, but neither seem to have desired effect.
It seems there's a lot of options with treatment/meds, although as you mention, benefits and risks need to be considered. How are you finding being on the steroids? I was on Prednisilone years ago for autoimmune uveitis (optical nerve swelling) - it did help a lot.
Hope your treatment is helping with your symptoms. x
hi i have langerhans cell and I'm under the lam iv had it now for 7 years still plodding along i have most of what u have medication wise and on 16 hours oxigen two of my modules have turned. Cancerus but they are unable. To do biology or remove them due that if i have anicetic is to dangerous. For me only option. Is double lung transplant it is hard to deal with at but trying to keep my mind busy helps i hope everything. Goes well. For u both
Chest Ct scan would be the best thing to start with as an X Ray shows very little unless it's a nasty piece of infection or scarring. Make sure they give the lungs a really good check. And if you haven't already then a full lung function test including a manatory test too, it's performed over 2 days you don't stay in, first part takes about hour and 1/2 then you go back next day for another hour.
Also have you an ECG and heart scan? Just to check everything would be a good idea, I had a heart scan once it's just like when you have a baby scan but at the heart. Doesn't hurt and only takes ten minutes.
Also make sure someone's examines you which should involve checking your neck for any tiny lumps too.
Good luck x
Ps yes if it's NHS then the Brompton is definitely the best one. They've been very good with my mother in the past.
Hi Shancock thanks, interesting info about the lung test performed over 2 days - I wasn't aware of that. I had a general lung function test and Spirometry - both normal. I'm having an Echocardiogram (ultrasound) next week, as well as 24 hour holter. In 2015 I had a CT Coronary Angiogram - was normal, apart from mild artery calcification. GP said the lungs are visible on that type of CT scan too - (although I'm not convinced, think a separate one for the lungs would be best).
I've heard the Royal Brompton is a brilliant hospital - do you have to have a diagnosed lung condition to be referred, or can you be referred based on symptoms?
I have lung and heart conditions and both can make you breathless. Which is were it can sometimes be the fence some specialists will sit on (I say that from experience.) It can be the the heart is not pumping the oxygen around correctly or the lung is not processing the oxygen to the heart. My last known heart attack was because my heart caused the blood to vortex in the chamber and was starved of oxygen!
All my specialists have now got together and I am being referred to a specialist PH hospital in Sheffield for more in depth tests. Do not give up from asking for answers to your conditions You know how you feel and it is up to them to look outside the box for you! Hope you get it sorted soon.
Thanks Offcut, I'm having further tests next week, so looks like things are progressing - hoping to get further answers soon. Yes that makes a lot of sense that it can be difficult to determine if it's the heart or lungs, or both affecting each other. There is a strong genetic link with heart disease for me (many of my relatives had some type), so it's possible.
That's good all your specialists are communicating, I'd say that's one of the most important aspects of anyone's medical care. Best of luck with the tests.
I had a heart attack (aged 62) in 2009 which was followed by a triple bypass. After that I started to suffer with breathlessness particularly whilst walking up hills (unavoidable, I live on the Epsom Downs). Since I was also diagnosed after my heart op with heart failure (left ventricular dysfunction) it was was assumed that my breathlessness was down to my heart. I am also late onset type 1 diabetic and insulin dependent. I was also diagnosed with COPD by my GP. Later found that the Spiro test being done was not up to standard.
My GP sent me to Cardiac clinic which showed every was sound and she finally decided to send me to our local Respiratory clinic who gave me a lung function test and a CT scan. Result - Asbestosis (technically centrilobular emphysema) which is a restrictive disease.
Now given a new inhaler Umeclidinium Bromide and on a watchful waiting list. I have just been on a Pulmonary Rehab course and found this beneficial and now just bought an Exercise Bike to continue the good work. Last week went to the Nurses clinic which I will be going to half yearly.
I get great relief from my BPAP machine (for sleep apnea), each morning wake up with no pressure in my chest, for it come back after 30 minutes and stay till I get back on the machine (now a BPAP junkie).
I got in touch with the British Lung Foundation who were marvelous and advised me to go to an Asbestosis Charity and now making a claim to the MOD ( I was a soldier from 1961 to 1972). Now the MOD is on Watchful Waiting!
Hi Bumley, sorry to hear you had such a troublesome time with your diagnosis. You mention Asbestosis - my brother's partner was diagnosed with Mesothelioma about 8 years ago. There was a factory in Durham (where she is from), that used to deal with Asbestos - she used to pass the factory on the way to school, that's how it's thought she contracted it.
I'm glad you're finding the Pulmonary Rehab beneficial, as well as the BPAP. May I ask what symptoms you had before being diagnosed with COPD?
Before my heart attack I had been struggling getting up those hills and in the November of 2008 I gave up smoking (I had smoked from 15 years of age) only to have a heart attack in March of the following year (sods law). When I was in hospital and after stabilising my Diabetes I went to St Thomas's in London and I was given an angiogram which showed some 5 blockages was then put up for a triple bypass. During the op my left lung collapsed and I was kept under for another couple of days plus a raging inflamation of my chest wound (common complications of as Bypass)
After discharge from hospital and 3 months recovery I was given over to the COPD nurse who seemed particularly inept and was diagnosed with moderate level COPD and given inhalers of various descriptions which did not make a great deal of difference.
Still having breathing difficulties I went back to work but was finding manual work difficult and ended up flying a desk! Meantime I changed GP practice and the new COPD nurse did not take prisoners with her Spirometer test and the results showed I had normal Spirometer! The clue I think that was missed was that the test showed I had a restrictive pattern and this was indicative of fibrosis and asbestosis
It was always assumed after that that it was my heart that was the problem. Fast forward to 6 months ago and a cardiologist had withdrawn my furosemide tablet
s (40mg) and within a week I was calling 111 and was sent to A&E who were wonderful. As luck would have it there was a respiratory consultant on duty, who gave me furosemide and oxygen and a quick referral to his clinic and thence on to ct scan and bingo, Asbestosis. Given a new inhaler and regularly attending their clinic with" watchful waiting".
I am astonished at how many people have been affected with asbestosis. Teachers who used asbestosis mats over a bunsen burner in science lessons! And yet today a large number of our schools still have asbestos and teachers are falling prey to asbestosis. I have just signed a petition to get the damned stuff out of our schools.
Sorry to hear you went through such an ordeal before your diagnosis - glad to hear you're getting the help you need now. Inhalers don't seem to be that effective for me neither (I was prescribed Salbutomol and Flixotide) - although I think the Flixotide helps slightly.
The Spirometry test I had was 'normal' too - I'm don't think it should be used as a definitive diagnostic test, as there could be other factors (eg persons symptoms could vary from day to day and may be having a less symptoms on the day of the test) or as you say, the test not up to standard.
I see you also mention Thyroid issues (in another post) - I suspect I might have undiagnosed Hypothyroidism, as seem to have many of the symptoms (especially major brain fog at the moment!). This is something I've also been looking into.
It's so disturbing to know that asbestos is still being used widely in schools - I can't believe that's the case in this day and age. Do you have the link to the petition? I will sign it too.
One of the other maladys I was exploring was Under Active Thyroid mainly due to feeling constantly tired. Got a great deal of help on the Thyroid UK section of Healthunlocked. My GP (a particularly unhelpful soul) poo pooed my requests for Thyroid tests particularly because I was male. After blogging on here with Thyroid UK they suggested I could do a private test particularly asking for an Antibodies test and another bingo - I had thyroid antibodies and had a high TSH. Shoved the test result under said GPs nose and with bad grace had me do an NHS test which showed the same result - Hashimotos Underactive Thyroid! Since then I have sacked the GP, moved to a new practice and have been on Levothyroxine ever since. This is now looked after by my Endocrinologist who looks after my Diabetes.
Thanks for the petition link, will sign and forward it on.
I've noticed there seems to be a lot of difficulty around GPs diagnosing Thyroid problems - one of these being the patient having 'normal' results, but still experiencing all the typical symptoms of a Thyroid condition (but start to feel better when they have a trial of Levothyroxine).
I'm glad the Thyroid UK forum helped you with your diagnosis to get the treatment you needed - I found I got a lot of useful information too, which I'm still looking into. My next step may be to get a private blood test to look for T4, T3 levels and antibodies.
Do you find the Levothyroxine helps with a lot of your symptoms?
It did seem to at first but nothing significant since, my TSH is pretty stable and dose has remained constant and I am quite disciplined with my tablet/insulin.
One other point on CT Scans, I did have a scan done in 2014 at a lung clinic at another hospital. They sort of muttered that I might have fibrosis and tried me on a number of inhalers which for some reason I reacted badly with throat inflammations. they gave up finally and sent me back to my GP. I assume that the signs of Asbestosis were not clear then but only at the recent one in July last year. I mention it because Asbestosis I believe is similar to pulmonary fibrosis. I did ask my present consultant about this and he was quite vexed saying I think I can recognise asbestosis by now! Me - "Just checking!" to myself.
I have tried Prednisolone for a weeks trial which did nothing except hike my blood sugars to quite high levels. My respiratory consultant reckons that I belong a cohort of patients who do not take well to steroids (in other words, the awkward squad!)
I was asked a lot in hospital when I was in for a major infection if I had worked with asbestos but said no I then found I did work with brown asbestos and have restrictive lung disease and emphysema along with PH. But the last one blamed my smoking which I stopped in 1992 for my damage?
Sorry to hear that your problems are linked to Asbestos exposure - it seems some specialists/consultants are quick to blame lifestyle habits for health problems (in my experience too). As mentioned above, my brother's partner has Mesothelioma from exposure to Asbestos. She seems to be doing fairly well, as was diagnosed about 8 years ago and still managing to travel abroad, etc. Best of luck with your appointment in March.
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