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Really struggling for a diagnosis. Looking support and answers
Hi All,
Im desperate for some answers and support, my story is quite long and nobody seems to believe I have an illness. I’ve been to doctors, A&E and multiple forums as well as daily research for the last few months. Can anybody at all please point me in the direction of potential diagnosis.
Background:
30 year old Male
From UK
Suffer from Night Eating Syndrome for 2 years (wake up after 2 hours to eat)
Overweight but not obese
6ft 4 in height
No significant medical history. Family history of caeliac disease and underactive thyroid.
10 a day smoker for 10 years. Occasional marijuana smoker. (Trying to quit smoking and down to 3 a day)Symptoms:
– Hemoptysis since Nov 19. Small amounts from 2-3 times a day to once a month. Have been confirmed I have gingivitis but pretty sure the blood is coming from my respiratory tract somewhere.
– Shortness of breath on exertion (as in walking up a hill or more than 2 flights of stairs) which has got more noticeable over last 6 months (Have been less active as working from home during pandemic so maybe contributed)
– Intermittent MILD chest pain and mid left back pain. Comes and goes and never more than a 2/10.
– Adventitious Breathing Sounds – Late inspiratory squawk on deep inhale which comes and goes. Like a deep vibrating sound around my upper right chest (near trachea) which is less frequent but I notice a few times a week. Only noticed this last few months however for at least a year I have noticed wheezing when sleeping. Also noticed popping/crackling when lying in bed after smoking a joint. Since this I have not smoked joints and just the occasional bong.
– Noticeable wheezing on forced exhale.
– Spider Veins/Telangiectasia on side of my chest and under left breast. Very faint. Noticed around 2 months ago.
– Frequent throat clearing which usually produces sputum which is mostly clear. Sometimes clear with brown bits. Sometimes white. Sometimes more brown. Been noticing this for a couple of years.
– Have suffered from indigestion a bit over last 2 years and struggle to eat more than 1 course when out for a meal. Also feel I get quite gassy alot and burp/fart more than usual. When I burp I can smell my meals from 5 hours earlier on occasions.
– Noticed some black specks in stool but not noticed any for about a month now. Also noticed a yellow ball about 5x size of sweetcorn filled with a white powdery pus twice. As if it was a gallstone.
Medical Examinations so far:
– X-ray in Nov 19 which was clear
– X-ray in Jan 21 which was clear
– Blood clot test Jan 21 which was clear
– ECG Jan 21 which was clear (I did notice it said something about abnormal S wave though)
– Blood pressure taken Jan 21 which was in range
– Referred to ENT at my request. Only got telephone consultation and he said I was “fit and healthy”.
– Referred for pulmonary tests. Upon arrival was told to wait outside doctors lobby by NHS nurse. An hour later she advises I needed to do breathing tests first and due to their mistake I won’t get seeing doctor on that day. Did a full inhale which was “in range”. Did forced exhale which was “in range” but needed like 4 or 5 goes (apparently normal). Did some other controlled breathing test where it was a game which controlled like a hot air balloon and o had to keep it steady as it moved across with my breathing.
– After doing above tests I was unable to see doctor as they were done an hour later than they should have been. Was under impression of would be rearranged but got letter weeks later advising no other investigation required due to my test results.
– In all this time not one doctor has listened to my lungs. I’ve also only had one face to face conversation with a doctor who sent me to a&e in January
– Around March I kept pushing for a CT scan and nobody would give me one as I was “fit and healthy” and just “anxious”. One doctor finally agreed to it but I spoke to him days before it and he said he only booked it due to my anxiety. Then because it felt like all the experts thought I was fine and everyone saying I’m healthy I convinced myself it must be anxiety and didn’t go through with it as was worried it will make my anxiety worse in years to come.
– Went back to my doctor last week which took alot of courageous as I keep being dismissed. Reported the back pain which I’ve noticed recently, frequently changing stools (could well be anxiety) and intermittent foamy urine. Have had a complete blood count, liver and kidney and caeliac blood tests which I’m awaiting results of.My own research:
– Primary concern initially was lung cancer and this is why I initially pressed for tests. Doctors advised due to onset of first symptom as hemoptysis (which was most concerning) in Nov 19 that by 2021 my state should have progressed worse by now and I should have experienced coughing and weight loss if it was lung cancer as it is quite aggressive in the young.
– The most unique symptom of mine which I have is the “inspiratory squawk” which I feel is a key clue in my diagnosis and why I’m frustrated nobody has listened to my lungs. There is not alot of literature on this but it mainly seems connected to (excuse spellings) various forms of IPF, pneumonia, HP, bronchialitis, bronchial Obliberations, CTDs (Rheumatoid Arthritis, Systematic Scleorosis, Sclerodoma),aspiration from GERD, bronchial cancer and a few other conditions. However it should be noted there isn’t much literature on this and maybe it is in other conditions and not reported. Have not read any literature connecting it to lung cancer.
– The shortness of breath is only noticeable on exertion where I go uphill. Doesn’t impact day to day life from what I’ve noticed. It could well be due to weight, inactivity and smoking. I’m trying to push myself to go out exercising more as of last few weeks.
– In terms of my weight I don’t have scales at home. Historically though my weight always goes on my abdomen and my limbs are relatively normal with not much fat. I still feel a similar weight and still wear same size in jeans and tee shirts. If anything maybe slightly larger tops than 2 years ago.
– Appetite is a weird one. Always have 2 good meals in lunch and dinner and finish them plus seconds sometimes lol. Always wake up for some form of midnight snack. Don’t eat much early morning or at all. Mostly eat in evening but not been snacking as much recently. Have been making a conscious effort to eat healthier though and been smoking alot less marijuana and less frequently which I believe contributes to this. Wouldn’t say I have any loss of appetite when thinking rationaley.Theories of mine:
– Could I possibly have GERD or Silent Reflux and be suffering from microaspiration when I night eat which is resulting in pulmonary symptoms.
– Could this possible be HP from cannabis as I’ve read a couple of articles with this connection and a squawk seems quite prevalent in HP. Plus as I’ve noticed the popping sound after a joint. However if this was the case shouldn’t my symptoms improve when I go a number of days away from the allergen. Don’t get me wrong I know it can be chronic but if I’m avoiding the allergen I should notice an improvement of some form? Plus I’ve smoked it on and off for 8 years so surely I’d notice a connection sooner.
– Could my issue be heart or liver related with pulmonary symptoms coming secondary. I say this mainly because I can’t see many articles related to pulmonary issues which mention telangiectasia.
– how can I get my GP to take me seriously. I’m so frustrated with the NHS right now (more so the conservative party to be honest) because despite me working since adulthood and paying my taxes and never bothering my gp with issues all my life. It feels that unless I’m 50+ they don’t give a shit and you’re just a drama queen. I’m still young with a full life ahead of me and an early diagnosis is essential to improve my prognosis and stop progression of whatever is wrong with me. Yet if I was an 80 year old called Doris im pretty sure I’d of had the full works of testing done by now.
– Can anybody relate with my symptoms and possibly point me in a direction of investigation.
– Are there any pulmonary doctors on here who know about adventitious breathing sounds and could list other possible diagnosis of the inspiratory squawk or even other lung sounds if may be incase I’m misdiagnosing myself.I’m so sorry to type so much but I just feel nobody is listening to me and I don’t know where to turn now. I’m terrified of whatever condition I may have wrong with me and maybe if is all in my head and I’m being a drama queen and by making lifestyle changes (which I’ve began to do) IL improve. I’m just worried about the thought of this being something really bad which could of been treated or prevented if I had thorough testing done. And I guess I just want to fight whatever is wrong with me too now.
One final note to say that my symptoms have felt slightly worse the past week however I did meet up with a thread who was very hoarse and coughing alot 10 days ago. So I may have caught some sort of infection from him which has enhanced my symptoms.
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9 Replies
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One other symptom I forgot to mention is that since Jan 21 I have experienced small red blisters on my right hand middle and wedding finger. These appear from the web of my finger right up to the knuckle before the nail and can last a few weeks at a time. They tend to be under the skin. I got some cream from a pharmacy I apply a few times a day when I get flare ups and this tends to get rid of them.
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Also one last comment.
Can I just say that I have so much admiration and respect for every patient and caregiver on these forums which have been putting up a fight against pulmonary fibrosis for the last number of years.
In the UK there isn’t really much awareness of IPF and when it comes to lungs it always appears to be lung cancer which gets the focus.
Due to my own ongoing scare and the research which ive done on IPF, I feel I have a much better understanding of these group of illnesses and a new found appreciation and understanding for those affected by these often invisible illnesses. Honestly it’s so inspiring reading through some of the forums and seeing the community spirit and defiance by the members against these awful illnesses.
And lastly I would just like to apologise if the final comments on my original post appear ageist in any way. In the UK we are very lucky to have public health care which is a god send for so many people in this country including myself. Unfortunately the current right wing conservative government have been doing their best to under fund the NHS over the last decade which has resulted in people like myself not getting the support we need. And sometimes it just gets frustrating because it feels that the younger you are, the more dismissive they are and less diagnostics performed.
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I would guess that the eating thru the night is really bad. The cause of this lung disease we all have is probably linked to Gerd, sometimes silent. I would also guess the food is effecting your liver and the liver and lungs are close neighbor, next to each other. I would suggest trying to stay a little hungry and eat 3 hours before bed. I personally had my general practitioner say nothing wrong on the x-ray and went to the pulmonologist and he ordered a ct scan and the confirmed the pulmonary fibrosis. Good luck.
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I forgot, throw the cigarettes away. I use to smoke and quit 35 years ago.
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Hi Mark,
Where in the world are you?
You mention indigestion. This could be Acid Reflux and there is a possible link between Acid reflux and IPF.
There are lots of resource around and many kind souls on this forum will offer advice and reassurance.
I am 61, and have recently been diagnosed with IPF.
Kind regards
Jeff (Poole UK)
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Hey,
Thank you both for taking the time to respond, I’m very grateful and appreciative.
John – I think you’re spot on about GERD and it is something I’ve suspected for a while however I don’t tend to get noticeable reflux which makes me suspect I may have the LPR/silent reflux variety. This would also add up with when my indigestion and night eating syndrome symptoms began too. My biggest issue though is my dismissive GP and getting a diagnosis of this. It is possible to purchase ppi over the counter here however I wouldn’t want to go on medication for something I’m not certain I have and I know they can have long term side effects too. For now I think I’m best trying to tackle the night eating to begin with because this could be causing microaspiration and contributing. It’s easier said than down but for my long term health something I need to address.
In regards to cigarettes I know these can contribute to reflux too and I’ve actually taken action 3 days ago on this. I know it’s only a small thing but I’ve managed to get down to 3 a day for these last 3 days. Quitting would be better but at least this is a big improvement.
Not sure if I mentioned earlier but I also put alot of time into getting rid of any dust or mould in my house over the weekend too.
And then I’ve been making a point of going out on two walks a day, one at lunch and one after work. Again just small changes but I’m really trying to make the effort now to improve my health. Still encountering shortness of breath on uphill walking but going to continue persevering and im hoping with continuity IL begin to see improvements.
Regarding my liver this was another concern of mine as I know crrihosis can also cause pulmonary issues and alot of the time liver disease can go unnoticed, and rates are rising in the young. I got some blood tests last Thursday which I’ve still not been told the results of. I presume no news is good news as surely if there was something concerning my GP should of contacted me within a week. Also making an effort to try and eat healthier by incorporating more fruit/veg into my diet and replace snacks with stuff like yoghurt.
<p style=”text-align: left;”>Jeff – I’m from Northern Ireland myself so just across the water from you. I hope you’re keeping well and managing your IPF diagnosis. From reading around it sounds the treatment is much better these days with much better options.</p>
I guess for me my most concerning symptom which has sent me down this rabbit hole is my squawk. It’s such a unique sound. However I must say that while I still am experiencing it, the frequency and volume of it has reduced these last few days. But maybe this is just a placebo effect in my head. While im worried I’m also glad that I’m being thorough because hopefully at my age I can make changes like I am now to prevent the seriousness of any possible illness.
Think it may be worth me possibly changing to a different gp
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I feel badly for you, Mark. I am not a physician and cannot even suggest a diagnosis, but these are my thoughts. Have you been worked-up for auto-immune disorders (lupus, RA, etc)? Does the NHS cover genetic testing? As you know, you need to get the GERD under control. Elevate the head of your bed with a wedge or blocks under the bed’s legs. NO eating 3 hours before bed. Fomatidine and/or prescription proton pump inhibitor. Can you get a psych evaluation – that would demonstrate that you are not nuts? If you can afford it, I would get a complete work-up at the Mayo Clinic (Rochester MN). Assuming that is not an option, I would definitely change primary care providers. Congratulations on cutting down on cigarettes!! I hope that you find the help that you need. Judy
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@marks3724 Hey Mark, thanks for providing so much information for us to brainstorm and support you with. I don’t think we have many physicians in the forum, but our collective experience can be helpful to you even though it is subjective.
I think the others are spot on with their suggestions of GERD (silent, probably) and symptoms related to smoking, night-eating, and lower activity levels. There may be other stuff at play here, but those things are a good start, and working on improving your habits is where any doctor would likely ask you to start. It seems like you have a good awareness of your body and its changes, and you are already doing good work to get in better health. It sucks to have people say that what you feel in your body isn’t real, but you are certainly not alone in that fight. You aren’t crazy. Look for another GP if you can. Not sure what the health system is like where you live, but having a doctor who actually listens to you makes a huge difference.
It doesn’t sound to me (reminder, not a doctor) like PF is likely, but it’s good to have things on your radar. The squawk you describe could be asthma or related to some scarring or irritation in your throat from GERD, or even from smoking. Smokers often have rattles and wheezes in their lung sounds, as do asthmatics. Asthma can be brought on by environmental factors, but it sounds like you know that and have worked to get rid of mold and such in your home.
Keep us posted, and know we’re here to brainstorm and support you if you need it.
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@marks3724
Hi Mark
I wrote a long note but was unable to submit it. I’m sorry for all you are going through and I hear your fears and frustrations
I am a recently retired MD (eye surgeon) so I preface that I’m not a pulmonologist but have read abs learned a great deal since my IPF diagnosis 3 years ago at age 63
what you seem to be describing (squawk) may be consistent with what’s called STRIDOR which can suggest a narrowing of the trachea (windpipe) before air gets into the lungs. Any narrowing from the nasopharyngx to vocal cords to the trachea can cause this. I’ve had two patients that were older than you that had narrow tracheas fixed surgically. This would be diagnosed by a pulmonologist via bronchoscopy.
As a physician I’m saddened that nobody took a stethoscope and listened to your lungs. Abysmal and poor medicine. Many docs rely on scans etc and don’t touch/listen. The presence of crackles (rales) in a recent article is diagnostic of a fibrotic disease. As there are 200+ types of ILDs (interstitial lung disease)—the next step is for a pulmonologist to help determine this.
You are not in a typical age group for IPF but there are younger patients who get fibrosis especially if there is a family history. Did you have Covid? Testing for lupus, sarcoidosis and scleroderma and molds etc would be done but a good pulmonologist.
I totally agree with treatment for GERD. If you are overweight PLEASE get tested for sleep apnea (easy to do with hone study kits)The wheezing on exhaling is more typical in asthma but again can be many things. Having FEV and DLCO (diffusion) tested via PFTs is critical and also important in following this.
I also feel a HDCT (high definition Cat scan) is important as it will show fibrosis or honeycombing if you have fibrosis.
I ultimately pushed for a VATS lung biopsy to get a definitive diagnosis. It wasn’t too bad but some pain for sure.
In summary:1) See a good pulmonologist. He needs to hear the squawk and do a bronchoscopy
2) Get a good HDCT
3) Consider treating GERD
4) See what the PFTs are Get a diffusion capacity (DLCO)
5) Get checked for auto-immune stuff like scleroderma and lupus and sarcoid
6) PLEASE STOP smoking!!!!? Vaping is as bad or worse
7) As for the blisters—hard to know. Herpetic? Do you get lip sores when in the sun?
8) Consider a baseline cardiac echo with a cardiologist.
i hope this helps a little. Keep in touch
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