Hi all well I have not been diagnosed with anything yet I have alot of problems right now it all started a few years ago when I started going up stairs and was getting out of breath so I saw the doctor and he said everything was alright after having bloodwork but I don't feel okay and have not done for years, I kept going to hospital having tachycardia events but when I was checked everything was okay.
Then I didn't feel well and my heart was pumping like crazy and they took me to hospital and they checked me and again I had a tachycardia event and they decided to do an x-ray on my lungs and a shadow was detected so I was put on anti biotics and sent home and I had a real bad few weeks.
After a few weeks I felt a little better but I had bluish lips and fingernails but the doctors and hospital told me that it was the beta blockers making them like that but I bought an pulse oximeter a nonin one and it stated my oxygen is between 90 and 95 but usually it is about 92 and I have checked 2 different oximeters and both give the same reading but anyone else in the room is about 96 to 98 on the same oximeter and I have checked lots of people and always the same and my blood oxygen is so low.
I have been to the doctors and had ecgs, I have had an echocardiogram, I have had a CT angiogram as I was having left side jaw discomfort and other things so they thought it was a heart problem but all tests came back normal, see the pulse oximeter is very low while I'm at home but if I get up and walk it goes up to about 96 upwards but if I sit down it drops back down to between 90 and 94, also when I am stressed and my heart is beating at 120bpm like in a stressful situation in the doctors surgery the reading is always high, probably because the body's reaction to stress is to increase heart rate and oxygen, so when the doctor checks me it's always about 97 then I go home and it goes back down to between 90 and 94, I have even videoed it to prove it to the doctors only to be told it's all in my head and I have been passed anti depressants and a number for a psychiatrist across the table, but this is a real problem I can hardly walk far anymore and I feel dizzy alot of the time outside, the bisoprolol is keeping my heart rate stable as I was having arrhythmias but they were never picked up as when the exg was done everything was okay.
I have argued with doctors and been told by the hospital to don't bother coming again unless something is really wrong and it is and it's put me off seeking any help they have treated me really badly to the point I have felt like taking my own life, u used to be fit but now something is happening to my body and I don't know what it is and don't get any help I don't know what to do.
Just for the note my bilirubin levels have been high for around 2 years now and my last surgery didn't even let me know, I also have pulmonary function tests and my results came back that I had the lungs of a 33 year old, but the nurse did say that you can still have emphysema as I asked about that, I am wondering if this could be to do with my liver hps or something.
Does anyone know what this could be or were I can get help, I fed up and now covid has come I'm terrified of getting any medical intervention so for months I'm just try to get through each day it's so horrible, can.anyone help me please.
The picture I have just taken to show you that it is a real problem of I'm in a room the readings are that for me and usually about 96 to 98 for everyone else.
Hi yes I used to be really fit but I smoked years ago but gave up.thank god, but I used to weight lift everyday, go boxing, cycling, and wash 33 wagons and 15 vans a week and work on building sites as a labourer, but I got a chest infection years ago and they gave me penicillin and I had a really bad reaction to the antibiotics and I have never felt right since, I itch alot and all my liver function tests were normal except for high bilirubin levels but they did not tell me for.over a year that my bilirubin levels were high, it's only because I moved and joined a new surgery and they did bloodwork and they told me that they were still high but had come down from the year before.
To be honest I think this has something to do.with my liver as they have me statins to and I had very dark urine while taking them and that's when I started itching, the doctors told me to.keep taking them.but I decided not to after that as I don't think I would be here now if I had of been still taking them
Thank you for your reply any help is appreciated greatly 🙏
Yeah my doctor said they could have an affect on me but he's worried about taking me off until I have a diagnosis as I came off before and my heart went mental same as before I took them, I know they can be bad on some people
Could you possibly go to another hospital, this sounds like it's making you really I'll, try talking to one of the administrators on here they will be able to advise you better than I can. Have a good night and take care and please keep us updated on how you are doing 😊 Bernadette xx xx 🌈
I will try thank you Bernadette I will also keep you all updated incase anyone else ever has similar symptoms👍😊
Marlon
So if you are in the UK - 111 service is the way to go, you can either do the on line form or telephone 111.nhs.uk/
If you are not the UK investigate a similar service in the country you reside. An arterial blood gas test will give more accurate information about your blood oxygen levels.
Blue in the lips and blood oxygen low is not a good thing whatever the cause, especially if this is happening every day, (Keep records)
Change your GP may be a good option.
No one here can diagnose you and any suggestion what might be wrong would be a guess, you need a professional medical diagnosis and treatment accordingly.
Good luck, look after yourself. Check out the 111 service for professional medical advice.
Best wishes
in reply to
Hi thank you for the reply I'm not going to call then.yet I have lived with this for 2 years and the medical community has given me no faith in them seriously 2 years this has been going on and I have got this far on low oxygen, if covid was not around I would but I know people who have gone into hospital for something and came out with covid and alot of people have not made it, my doctors surgery has confirmed this to me also, so for now I will wait, I have rang a local private hospital so I can see a pulmonologist as I'm going to pay myself but not taking new apartments until October, I will take the risk at the moment and stay away from covid, I mean if it got really bad then I will go but otherwise I've got this far nearly 2 years on.
I just came on here to see if anyone else had similar symptoms or if anyone could make sense of the symptoms.
But thank you for your reply
Marlon
Hi yes I have had spirometry test and it stated I had the lungs of a 33 year old, and I thought normal oxygen levels were between 95 and 100 percent as thats what is says everywhere I read unless you have COPD which can be lower like.you say, but I read that if you are atable around 92 percent then you should be evaluated for oxygen therapy.
I have asked my doctor and my old doctor for an arterial blood gas test and have been refused 3 times because my spirometry was okay even though I have videod my low oxygen saturation levels while testing but still no joy, i.was told not to bother going to a &e again unless it was about something serious, honestly I was as fit as a fiddle for years then I'm struck down with whatever this is and I am left like this for nearly 2 years all I get is a pack of anti depressants and a phone numbers munber pushed a cross the table oh and beta blockers which luckily I got from the doctor as it was my idea otherwise I would have been left and my heart would have burnt beating at 130 BPM
The reason they push the antidepressants and psychiatric number accross the table is because I had a very very bad childhood and I was eventually taken into care after a brutal murder of a family member, then instead of helping me were I had no mum and dad or any family and had been through absolutely traumatic events I was placed in l lockup for naughty kids at 13 years old near Liverpool the same place they put Jamie Bulger killer, I used the council a few years ago on my own without a solicitor and won my case without going to court as they admitted what they did to me was very wrong, so I had a few psychological problems over the years but I sorted them, I mean there's people in much worse conditions out there than I have lived but they think the answer to.egerything is a pack of antidepressants and see someone and that's if your lucky.
But this is a physical problem, it's okay anyway I'm starting to sue the surgery with the incompetent doctor I saw as this is a physical problem and I have suffered for 2 years I'm honestly lucky to get about life is a struggle now I was always climbing hills and mountains and I was in the army cadets and the army as a kid and always been the outdoor type keeping fit, to he then left like this, put it this way they don't get my clap anytime, I know there is good nurses and doctors out there but it's finding one these days but they will learn when I sue them for negligence, I'm so fed up of living like this especially now covid has arrived it's made life so much worse and I know if I get it then it will probably be the end of me.
Anyway sorry for my rant just days are so bad for the last 2 years with no help what so ever from the so called caring medical profession.
Please could I ask the results of your spirometry? And what are your oxygen levels when you walk? Do they drop? What kind of shape are you in? Do you exercise regularly? I don't know that I can help but these bits of information are useful. Also, anxiety can play havoc with your heart and breathlessness. I know a lot about anxiety , unfortunately. xx 🙋
Hi Caspiana nice to hear from you I always read your replies as you have been through alot especially with the lung transplant and it's good to see you are doing well 👍😊
Well my spirometry results were I have the lungs of a 33 year old so they say lol but the spirometry nurse did say that it is possible to have good airflow results but still have emphysema,
My oxygen saturation levels at between 90. And 94 while resting and they go.up while i.walk about, to he honest I can't keep fit anymore although I used to be very fit but then saying that when I went running I was always out of breath quickly, i am.an.idiot who once smoked but I did stop thank God but anyway my nails have a bluish look.to.tjem.at times and I have a blueush linedown my bottom lio, when I get stressed my saturation goes up like when my heart is beating hard at 120 BPM and over and that's why the doctors have never seen my saturation lower than 97 whilst in office, but when I go home my saturation levels drop.to.between 90 and 94 they kind of keep fluctuating and if I breathe in and hold my breath for a few seconds and breathe out after a few times my saturation levels go up to between 95 and 97 but when stop doing that they drop back down to like low 90s, I would say mostly at rest they are Between 92 and 93 on oximeter.
I find It hard walking now outside As I start to feel like when you have blown up.a bloon to quickly that light headed feeling but I'm okay indoors and I think it's the difference in gas Exchange, I have asked for a blood gas analysis 3 times and been refused by 3 different doctors although I have had an echocardiogram and a CT angiogram both came back normal except for the angiogram that showed mild plaque buildup on some Small arteries on my heart but nothing to worry about, I am also itching and they have known my bilirubin levels are high but have not sent me for any tests to check liver condition by ultrasound ect, also my red blood cells were higher than the recommend results just over.
I am thinking my body is making more red blood cells to compensate for the lack of Oxygen and this is causing my liver to have to breakdown More red blood cells thus causing high bilirubin levels in my blood and causing the itching I have experienced now for nearly 2 years, I mean They did not even find out if my billirubin is conjunated or unconjugated the old surgery did not even tell me they were raised for over a year so it's like I have been labelled as having harmless Gilbert's syndrome but without even looking into it I'm at the end of my teather with it all Caspiana 😞
Does any of it make sense to you and thank you for trying to help sometimes you just feel so alone and I know people can't diagnose me on here but it's good when someone understands you and even having someone with similar problems makes you feel your not alone.
I have just been going through the same kind of thing. My heart rate is around 69 when resting then shooting up when up and walking around. Also had chest pain and have also had trouble breathing feeling tight chested ect. I’ve phoned my doctor today as I’ve been suffering from panic attacks this last week and high anxiety. I know I’m suffering health anxiety so have asked for help. I’ve also put the oxymetre away and all the other medical gadgets as I’m worrying myself to the point of being ill. I’m not saying you don’t have anything wrong because you might. Hope you get something sorted because I can understand how terrible you probably feel.
Hey thank you I hope you get sorted it may just be panic attacks your suffering and I hope.that is all of your worries, panic attacks can be very scary trust me I know, what your suffering is tachycardia probably due to increased cortisol being produced by your body due to stress, you need to try calming down and maybe eating healthy and some meditation, 69 for heart rate is okay it's when it's going over like 120 when your day doing nothing you need to worry, I mean your heart can go higher than that mine has gone up to.147 just sat there and I had ecgs years ago and everything was normal, the problems are when you have a heart condition and your heart starts to.act erratically.
But like I said hopefully it's just stress and you might think while.im not stressed but this could have been stress from months ago and your.body is trying to get rid of the excess cortisol which is a stress hormone that is made by little glands that sit on top of your kidneys.
I would suggest you go on YouTube and type in Dr Berg and stress and he will help you truly understand your body, most doctors will just throw tablets at you for.thia.and this can make matters much worse, but a good thing is relax, meditation, a good diet and make sure you are getting plenty of magnesium and potassium in your diet unless you have kidney issues then you need to see a doctor.
But I would see your doctor first and get them.to.do.mayge ECG and bloodworkbans check your electrolytes and if all is well watch Dr Berg videos on YouTube and start to.learn about your own body and the power of meditation, relaxation and nutrition.
Keep us posted as to.your diagnosis and try not to worry.
Watch this and the rest of his videos he is a man everybody should watch, someone who doesn't push pharmaceuticals across the table unless you really need them and also someone who devotes his time to.make people healthy and devotes his time to make you understand the body and the functions.
Still see your doctor and I hope all is well and it's just stress
Hi sorry you are struggling to but thank you for the advice it's good to know I'm still in acceptable levels l, but then I suppose it's what your carbon dioxide levels are to that counts it they have refused me blood gas analysis on 3 occasions , but hey thank you and I hope you have many happy years to come.
Sorry about the spelling mistakes to everyone, I can actually spell honestly but my fingers are big and the digits are very small on the keypad, makes it all rather annoying sorry lol 😂😂😂
I can’t understand why you’ve not been sent to pulmonary clinic your oxygen levels are way too low could be causing organ damage your pulse at resting way too high , I had a friend who had same symptoms as you and fobbed her off with anxiety after tests then did a scan of her heart and found it to be massively enlarged on one side , I’m mild copd fev 1 near 90 and fev65 oxygen levels always around 99 - 98 minimum resting heartbeat 60-70 tops it’s your life demand to see pulmonary specialist
Hi Martin thank you for the reply and I cannot understand it either to be honest but I think I am going to go private and see a pulmonologist myself they said it's about £150 so.im going to do that for sure, I mean I have had a really bad experience with the nhs, I have had doctors telling me that I can take as many beta blockers as I need as there harmless at the begining and then I have told another doctor what the last doctor said and he has gone mental and said you can't mess about with these pills, and after reading other people's experiences on here and other sites I can understand why.
I think there is a culture of if they do not know.what it is then they blame anxiety and stress for it or its a virus and unfortunately due to there incompetence people are dying all the time with miss diagnosis, sorry to all the good doctors who actually listen to there patients as I know.tuey do exist but I have not found that person yet but hopefully I will going private.
And my resting heart rate is not that high as I'm.on beta blackers my resting heart rate right now as I wear a heart monitor is usually about 54 BPM to 62 BPM but then don't forget I'm on beta blocker.
And sorry to.hear about your friend that's really bad they fobbed her off they have a tendency to do that.
Anyway thank you for your reply and have a good day and he safe.
Hi I think you need to stop going on google. A lot of websites give false information out, which can cause a lot of worry unnecessary. The only website you should use is NHS or on here. Try talking to your doctor again. It sounds like how my boyfriend gets when he goes outside, the doctor told him it's a panic attack. There are different types of panic attacks, so you maybe having different from before. Please ring your doctor again. Ask for a CT scan for lungs to determine whether it is emphysema or not. Good luck. 😀
Hi Jan thank you for the message but to be honest i would rather learn myself on Google than listen to what most doctors tell me I have had a very bad time with them and i.am.not a silly person anyway I am a very intelligent person I know what Is right and wrong, see I am a licensed radio ham operater and a computer technician so I am very technical and I also am a very experienced fish keeper so I understand chemistry and aquatic diseases, I keep alot of marine species of fish that are very hard to keep as water quality needs to be perfect, I study biology, science, technology, o can also repair motorbikes and cars and do vehicle diagnostics and I have been learning about the human body for years.
I learn from doctors who.dont constantly push Pharmaceuticals a cross the table as you see most doctors don't understand the power of nutrition for instance you.go in depressed and you end up.walking out of the surgery with prozac or setraline or similar which I'm sorry but me that is poison, doctors hardly learn about diet and nutrition, I mean for instance when you tell them you are depressed do they sit you down and say how's your diet, do they check your magnesium levels and all your electrolytes and see if there out of balance, these vitamins and minerals are extremely important to the human body it's like trying to run your car without fuel and if you don't get them things start.to not work correctly.
But no what they do is pass you a packet of poison a cross the.tableand that's what I call most of there pills, and do.you know.that.doctors are mainly.taught that pharmaceuticals cure disease and they get commission from big pharmaceutical company's to perscribe them to you, the truth is there is very big money in sick people how do.you think the pharmaceutical company's make so much money and that's by pushing drugs to you, I mean don't get me wrong there are some drugs that do miracoulos things and some are life saving but the majority are pushed over like smarties and come with lots of horrible nasty side effects to like increased risk of suicide, I mean who gives that to someone who is depressed and has been thinking of killing themselves, do you know I know 3 people who have killed themselves after being prescribed high doses of prozac and I know.it was the drug that finally killed them as when.you.know someone for years even through depression then there prescribed something and they ain't the same person anymore and have no empathy due to pharmaceuticals that they actually carry it out.
So to be honest I will forget the nhs and go private sorry i.habe had enough of there incompetence and yes some people do amazing jobs in the nhs but then there are plenty who.have not got a clue as well and my god i.could.name story after story on here regarding were they have messed people's lives up and poor souls have lost there lives to due to somebodys incompetence but I'm not going to or we would be here all day lol.
Anyway thank you.for input and my reply is no offence to you if things were to work as they supposed to.then.your advice would be.the beat option but truth is I have been down the nhs route to many times now only to feel worse and worse every time trying to get somewhere
hi ragnor you seem pretty clued up about a number of things, might i suggest a book you might find interesting,its called its all in your head. written by Suzanne O Sullivan a consultant neurologist
Hi there I just had a look at the book and sounds interesting but mine isn't in my head lol, I have very high bilirubin levels in my blood and everyone has seen my low sats when I'm sat in a room and everyone put the pulse oximeter on and mine is very low 90s
But one thing I would like to say regarding this even if it was in someones head then that is an illness in itself and these people who do actually believe something is wrong with them when there isn't are usually laughed at and told it's as the book says it's all in your head and that must be so horrible for the poor people with obviously this psychiatric condition, I bet the answer to it by most doctors to is to describe medication to these people to with very dangerous side effects to including increased risk of suicide as that's the normal in this world to feed the drug companies big pockets instead of looking at the patients lifestyle, diet etc.
People underestimate the power of food, vitamins and minerals, you can't run a car properly without good quality fuel and you can't run a human body with proper nutrients, most drugs are made from natural plants of some type but you can't patent something natural can you so you have to change it then you can push it and make money out of it.
If people really think big industry wants everybody healthy then you are a fool there is money in sick people, like do you think they will ever give you a car that will never rust or need repairing
It probably isn't in there head I mean do you know how many man made chemicals are in the air you breathe and the food you eat and what affects are they having on your health?
An old friend once said to me everything that man makes breaks and everything that God makes dies, remember that 😁
So sorry you are going through all this. And the medical profession hasn't been helpful. If only, before covid, you could have had the arterial bloody test to test the levels of oxygen in your blood, you would have had an answer. I was on beta blockers after I had severe respiratory failure and a tacko tsubo wee heart attack, bought on by stress (thats another story) but as a result, after being in ICU, then hospital ward then rehab then arterial test, I was put on oxygen for exertion. I am a co2 retainer, (a blue bloater!! is the name the medicos give for peeps like moi!). I was taken off the beta blockers after another echo cardiograph and all was looking a bit better.
Unlike you I have never had full fitness, due to many bouts of pneumonia, double staff, when I was young, then like a bloody fool I smoked on top of all of it! Those lung mukers were my coping strategy. Thankfully after the sobering hospital and rehab stay I have not smoked since, thank the heavens for that. My sats can be around 95 but can go down quickly also. I think your idea of going private is a good one. But I too would be fearful due to covid. As you say you have been living with this for 2 years. If you can maybe hang on and wait for covid to lessen a bit then bite the bullet. I wish you all the luck and hope you find the answers, which you may not like but at least you will know what the, is going on. Sorry I can't be more helpful. Keep exercising, keep up your fitness as much as possible, stay safe, stay covid free. wishing you and yours all the very best. Cheers
Hi Juliette firstly.thanl you for.taking your time to.reply.its greatly appreciated and i think whatever you have I am in a similar situation and I think that I to could be retaining co2 but obviously I have been refused a blood gas analysis 3 times so I cannot confirm anything yet, which I could test myself lol but going private will hopefully be my ticket to.getting somewhere but your condition sounds alot like mine, o.think the pnumonia I had originally on my lungs has damaged them and maybe damaged my air sacs and that's what's making my gas exchange not to be right, I have told the doctor this for nearly 2 years now but the trouble is when you have anxiety on your medical forms there is a tendancy for.the medical community to keep going down the road of that instead of actually listening to the patient, i mean god bless all these people who have died saying they have had something wrong and the doctors have said no you have not and then they.die of cancer or some other nasty disease I hear stories like that most days unfortunately.
Anyway things will be okay in the end I think I may need a lung or a liver transplant as it's rather I have very bad emphysema or I have a condition called HPS which affects the.liver and causes low oxygen levels in the blood but only time will tell but yes I'm.staying out of the way with covid it's like.one of them zombie films and everyone may be infected lol like stay away ha ha, what had the world come to everyone 😊
But hey thank you.for.your reply and I hope you have many good years in front, eat healthy stay away from smoking and well done for that and avoid covid like the plague and I will try to keep fit and healthy until then.
Hi, I've had similar problems for a couple of years and I've now been diagnosed with inappropriate sinus tachycardia and I am also being referred to a POTS specialist. Have a look at POTS.uk.org.
Hi thank you for your information I will look into that and have a look.on there website, but does this make your oxygen drop into the low 90s
Thank you
Marlon 👍
I would disagree, hypercat. My understanding is 92 or above is acceptable in people with a known health condition that may impair oxygen sats, and is the general rule of thumb if admitted to hospital. In some individuals, that may be revised to 90% or even 88% or above depending on their issue and what’s normal for them. For the majority of people, normal sats are actually classed as 95 and above, and in hospital most would be given supplemental oxygen if their sats dropped below 92. I have no diagnosis that would support low sats, nor am I ill in hospital, and therefore my sats dropping below 95% is currently ‘of concern’ as it indicates there’s something going on that needs to be identified.
Hi....dont trust your oximetre.....my oxigen was showing 93 and when the ambulance arrived they took a reading of 97. Your oximetre can and will be out by two points.
Hi yeah no I have looked into that my doctor tested it with his to see if it was reading the same and it was, both my oximeters are very good makes to and the nonin one I have is very expensive and is what the doctors use so I know it's correct, and as you say it can be up 2 points out either way from an arterial blood gas analysis and that's the worrying thing for me is it 2 points higher I don't think so how I feel day to day could be 2 points lower which is worrying as that would mean my stats are 90 most of the time.
Thank you Marlon 👍
If you’re absolutely certain that the docs are wrong, have you considered a private ct scan? That would be the gold standard way to diagnose a lung issue in both nhs and private clinics.
I realise that you’re certain there’s a physical cause, but dysfunctional breathing may be worth looking into, which is where you habitually accessory breathe. My daughter was doing this resulting in severe, inexplicable breathlessness, particularly on exertion, but it was also causing her sats to drop into the 80s. She was literally restricting her oxygen intake purely by the way she was breathing and the cause was two fold: she has a respiratory disease that leaves her prone to chest infections and when you have a chest infection you quite often have to accessory breathe out of necessity. You also tend to accessory breathe during fight or flight, so not only had she fallen into the habit after a really prolonged spell of bad infections, her generalised anxiety was just exacerbating it. The fact that deep breathing can push your sats up is actually fairly positive, and would potentially support dysfunctional breathing as a possible factor in whatever’s going on, even if it’s not the sole issue.
In any event, hope you get some answers soon.
in reply to
Hi Charlie thank you for the reply and I guarantee you the doctors are wrong and yea I'm going to see a pulmonologist at a private hospital near me called Fitzwilliam in Peterborough so hopefully I will get to the end of this then in one respect, could be a new beginning in another chapter of my life but when come to that hurdle then.
I have tried all the breathing exercises and I don't shallow breathe honestly it's been nearly 2 years now and I have tried everything, I mean if they won't help then you have to arm yourself with all the knowledge you can and try everything at your disposal which I am doing.
Sorry to hear about your daughter that must be hard ☹️ but don't worry I am going to sort this soon hopefully anyway as long as I Dodge covid lol that's the worrying thing right now it's like Tom and Jerry with covid lol.
But hey thank you for your information Charlie and I will keep you all informed of the progress and any diagnosis I get in the end, as then if anyone else has similar problems it may help them in the future.
Cheers Charlie stay safe
Marlon 👍😊
in reply to
Shallow breathing is not the same as dysfunctional breathing. The only way to actually categorically confirm or rule out dysfunctional breathing as a cause of low saturations would be a CPET test: my daughter isn’t a mouth breather and from a professional standpoint there were no apparent indications of D.B. We didn’t actually know about the desats until we did the test, so that was a surprise outcome that helped us make sense of what’s going on. The treatment is to gradually try and retrain her brain, which involves breathing exercises, and it is helping, but I would hesitate to describe it as just ‘breathing exercises’. That would massively oversimplify the idea of rewriting neural pathways involved in respiratory effort.
Not wanting to seem pedantic, but I do feel the need to make sure you understand that 99% of consultants you see in private clinic actually work predominantly in the NHS. It’s exactly the same people, with the same views and experiences, the only real difference is that you get to see someone more quickly, and there tends to be more willingness to carry out additional tests and diagnostics because a patient foots the bill rather than the NHS. I mention this because reading through all of your replies, two things strike me: the first being that you have little to no faith and confidence in any NHS doctor you’ve seen, and that everyone you’ve ever met or even spoken to has been horrendously let down by the NHS. The second, that you seem convinced that the private appointment is going to find something when it’s entirely possible you may be no better off at the end of it. I’m not for a moment saying there’s nothing wrong with you, and I know first hand that doctors don’t always get things right, but you can’t in one breath say doctors don’t know what they’re doing or talking about, constantly prescribing poisons, yet be certain that exactly the same doctors you don’t trust are going to find something just because you’ve paid them to. With the utmost respect and politeness, many of the comments made to you on this thread has been responded to with polite but readily apparent dismissals as if the literal hundreds of years of lived experience of lung disease and complex respiratory issues to be found among the members here means nothing in the face of your time on google and researching online.
I have on several occasions now accurately diagnosed both myself and my daughter with rare and quite obscure things and had those diagnoses stand up after formal medical investigation. I have no medical training or experience, and prior to my daughter we didn’t even have eczema in the family, there was no chronic illness or lived experience medically at all, so I fully understand the need to read and research conditions, particularly when you feel something has been either missed completely or misdiagnosed. But I’ve also learnt that telling someone that went to medical school for 7+ years how to do their job rarely ends well or with them feeling compelled to go above and beyond for a patient. From what I’m seeing in this thread, I can’t help but in the nicest possible way wonder if some of what you’ve been experiencing is more about the how of what you’re saying to doctors, rather than the actual concerns you have. That doesn’t justify them dismissing you out of hand, but it might account for some of why they’re not taking the situation as seriously as you feel it is and what you’re describing would certainly suggest it is.
Again, I hope your appointment gets you the answers you want, and I would genuinely be very interested in hearing the final outcome, but perhaps you could reflect a little on what I’ve said before you reply to people.
in reply to
As I stated previously as a child I had a very misfortunate life were I had no mum and dad and was put into care due to severe abuse and due to a very brutal family murder which I was 5 when it happened and I was taken into care, I had ADHD as a child but was only diagnosed by a professor 6 years ago who is in fact one of the best professor s in his line if work Anthony Made king's college, I was instead of being helped I was thrown into a lockup with bars on the windows at 13 years old in the same place they put one of the Jamie Bulger killers and I was not helped and I sued my local council for what happened without a legal team just myself and they apologized and settled out of court and stated that what they did was very wrong and apologised to me personally, now who would think that your child would watch one of you murdered and then because they had issues throw them in the same place as the Jamie Bulger killers is that what should happen, these were professional people to but that happened to me.
Now we're am I going with that obviously I have seen very bad things throughput my life I mean very bad and bad things have happened to me that I'm not going to go into on here and due to that I have series medical attention for problems in my mind and it has turned out that all you get is a pack of pills pushed a cross the table and once the label of depression is on your records then everything you suffer seems to be down to that when it is not so this is my problem, I mean this country has a stigma regarding mental health and yes them tablets are man made poison I don't care what you say there are ways of dealing with things in other ways people went through 2 world wars which was very bad and they survived and everyone helped each other they did not pop pills.
Sorry I havent read all the replies, but have you been tested for Alpha1 Antitrypsin Deficiency? It's what I've got & the primary cause of my COPD.
Hope you get some answers xx
in reply to
Hey Liz thank you for the reply it's funny you say that as they think I may have celiac disease but only way to confirm was with biopsy on the small intestine but me and my doctor years ago decided it's probably just beat to eat a gluten free diet which I do now anyway, as my old doctor said even if we do the biopsy then it won't make things any different for you and the outcome would be the same regarding treatment, meaning a gluten free diet so I agreed.
The thing is though I have read that if you are celiac then you are at higher risk for emphysema and that protein you mention you are at higher risk of having a deficiency being celiac, so I think I may tell the private hospital this when I get round to seeing them, I have been thinking of this for a while now see the problem is I went gluten free 4 years ago but I think I have been celiac all my life so what damage has a gluten diet done to me over the 40 years that's the question and could be the problem that's caused this.
But thank you I will ask about this and keep everyone informed on the outcome
Bisoprolol affected my father so much that I argued with the hospital doctor to immediately take him off them. He had normal to low blood pressure naturally and after a fall a hospital ward doctor prescribed them for him which lowered his blood pressure even more and he found breathing so difficult that his mouth had to be wide open to get any air. He told me he wanted to die if life was going on like this.
When I refused to let him take anymore of them the hospital doctor told me that if he dies then I will have his death on my hands! I was shocked but dad (aged 94 at the time), told her that both he and his daughter knew his medical history well and clearly she did not!
I got him out of hospital the following morning and I removed the Bisoprolol from his meds and within 24 hours he could breath through his nose (with mouth closed), once again. He regained his energy. He lived until he was 97 years old when he died of pneumonia.
Doctors do not know your body the same as you do. We are all different. Perhaps removing the Bisoprolol from your regimen for a while may help with your breathing problems.
Take care and I hope you can get the real help you need as it is a worrying time when we don’t have answers from those who are supposed to know.
Morning,hope you are feeling today. My days are anything from 90 to 95% and when exercising my pulse reaches about 120.
Have you been doing breathing exercises and relaxation as they can help you feel better. I think sometimes we all react in a way that makes us feel worse.
Relaxing and good breathing practises can help. Hope you can get the support you need.
Hi thank you for your reply and I'm okay thank you I'm as well as I can be 😊 I still try and smile and laugh that's the main thing, but checked my sats and they are 91 on both oximeters and yes I do breathing exercises and I bought a lung exerciser to and I use that, I know breathing exercises are good for you been doing it for a while now, and when I do.it my sats go up to 96 to 97 but then.drop again when I stop but least my organs are getting more oxygen for.a.l while
Thank you for the reply and I hope you are doing well also and stay safe
Marlon 👍😊
Hi Tempo57 thank you for your reply and sorry to hear about your father must have been hard for him saying he wanted to die if life was going to be like that and that is very sad 😔 but thank God you managed to save him from them and that he managed to have a few more happy years with you all, I mean what would have happened to your poor father if he had been left with the pill pushers.
I know bisoprolol can be a very horrible drug to take i have asked the doctor to change me to a calcium channel blocker instead, you see I really need this pill to keep my heart in rytham as I tried to come off before and I suffered badly and was having arrythmias so had to get back on asap otherwise god knows what would have happened, see when you have low blood oxygen you can go into dangerous arrythmias and they can actually kill you or damage your heart so my doctor said until we find out the cause then we need to keep taking them, but I will be honest I will he would just change my meds to calcium channel blockers as most people do better on them than nasty bisoprolol
And it's true what you say who knows you more than you, I read a story a while back were a lady in the UK had been complaining to the doctors age had a brain tumour and they said no you have not and kept sending her away over and over again, luckily her husband beloved her and he remortgaged the house for private tests and they got them the doctors said to her it's a good job you came now.as any longer would have been to late and they cut it out of her, I mean we're would the poor lady be now if she had listened to her doctor, but that just shows you trust yourself as you know you better than anyone else.
You take care to and thank you for your reply and thank god you saved your dad good to hear that.
Ragnar do you have any family history of COPD that you know of. I understand your anxiety that you feel your Sats shouldn’t be that low as you have no lung disease that you know of. The poster above has Sats in the low 90’s but that’s normal for someone with diagnosed COPD.
I would have thought that with lowish Sats and breathlessness on exertion/low exercise tolerance, and having had cardiac issues ruled out, that the GP should now refer you to a respiratory specialist. Try insisting?
Hi Chris thank you for the reply but no I have no known family history of COPD that I know of, heart disease yes but not copd, and don't worry I'm going to pay to see a pulmonologist at a private hospital near me once they start taking appointments again, the doctors have just left me i mean the doctor I'm with now was worried it was to do with my heart and he got all the heart tests done as his concern was my heart and I appreciate he did for me so far but to.be honest it's been a long process nearly 2 years now like this and I kept telling them.it was my after they saw a shadow on my lungs 2 years ago and treated me for a lung infection and the shadow went away but I think maybe the infection damaged my lungs and I have said this over and over to no avail, felt like banging my head on a brick wall lol 😂
And this can happen i.read a story about a mountain runner who is classed as a super fit human who ran up and down mountains for fun in the USA and then he got a lung infection and he thought it would go and the bacteria damaged his heart so badly that he is now in an artificial heart machine waiting for.a heart transplant, so this can happen to anyone, a friend i know to had a lung infection and it ate through.his heart valves and luckily they saved him and now he has an artificial bovine heart valve, but I say this to my doctor that maybe it happened and damaged my organs somehow and they look at you like you are reading something out of willy wonka and the chocolate factory, like your stupid or something and that you don't know your own body having lived inside it for over forty years, but don't worry I am paying and going to see a pulmonologist and I am bringing a case against the hospital i.was told not to bother going back unless it was something serious and my surgery who kept giving me anti depressants and slips of paper with a psychiatrist phone number on, I am doing it for myself and others to as these people can.not get away with not listening to there patients and making people's lives misery and some dont even make it and I'm going to see that action is brought against these people, they are payed t .do a job and some only do a little of what they are supposed to do and this needs to stop
Anyway thank you for your message and taking your time to reply and i.will keep.you all updated and keep safe
Ok, well there are plenty of private specialists who are still consulting at the moment- you may just need to try more than one. Bupa consultant finder website is useful. Good luck
Hi Chris I have found were I'm going and it's a hospital in Peterborough called Fitzwilliam hospital and is supposed to.habe a good reputation but thank you for the info i will look and you take care to
Hi Marlon, when I had a chest infection my doctor sent me for an x-ray which showed up a shadow, because of this a CT scan was ordered. The CT scan I had with dye, this was when I was diagnosed with emphysema. Emphysema doesn't all was show up on an x-ray, which was why I said to talk to your doctor again about having a CT scan. But as you are going to go private hopefully the physiologist will do this. Please let us know how you get on.
Hi Jan ah see that's what I mean I have not had a scan on my lungs only had a CT angiogram on my heart and surrounding veins and arteries, also had a echocardiogram which both came back normal except for some mild plaque buildup on some arteries near my heart
But I definitely think this is what I have and that is emphysema and hopefully they will do this at the private hospital like you say and then I will get to the bottom of it once and for all.
Just a question how advanced is your emphysema and what are your sats like and what medication are you on for it please if you don't mind me asking
And don't worry about the spelling mistakes this phone I'm using is really bad lol I can actually spell but you would not think so reading some of my replies lol 😂
I was diagnosed with moderate emphysema, can't remember what my stats were lol. This was in 2017. Unfortunately I still haven't been able to give cigs lol I have Walked from twice daily and Ventolin as and when. I'm also on sertraline one of the poisons you mentioned earlier lol
Ah okay wel im glad your doing well and lol on the predicted text ha ha 😂😂
And setraline lol the poisons I mentioned earlier you know why I say that because there is always a real world cure, honestly you know that anti depressants are an SSRI don't you obviously and did you know that most of the seratonin is made in your gut actually about 90% and around 10 % is made in your brain, there is much more people don't know about there body like did you know that it is gut bacteria in your stomach that produce seratonin and that imbalances in your gut bacteria through eating meat that has come from cattle that has been treated with antibiotics is killing all these bacteria that produce these hormones and chemicals that your body needs, and these kind of things are making people sick and I don't think the answer is a pill from the doctor, the answer is eating healthy organic grass fed foods and a good mixed diet full of nutrients than man made poison in the form of a pill,band I don't mean to offend anyone that's just my take on it and I think that's the better option sorry lol 😂
Here's some text off a well known site that proves what I'm saying about man made poison, as the old Chinese proverb says something like the immune system is in the gut, look after that and it will look after you
Gut bacteria also produce hundreds of neurochemicals that the brain uses to regulate basic physiological processes as well as mental processes such as learning, memory and mood. For example, gut bacteria manufacture about 95 percent of the body's supply of serotonin, which influences both mood and GI activity.
Hello - I do understand the stress feel (first hand experience) but, first try not to overstress if your SATS are low for a short time or if you're sleeping. Before I knew about Sats I was nearly having heart attacks ever ytime my mum's level went down to 93 and 115 HR and I went to A&E as she had a previous lung condition and I didn't know what to do. They weren't happy I'd brought her as, like you, her rates became normal just before she saw the doctor but when they looked on her CT scan they saw she actually had Bronchiectasis - which I hadn't known about. The r GP then organized an appointment with a respiratory consultant and they prescribed pills, saline nebuliser and breathing exercises for her to do - which helps her and reduced my stress. I'm not saying you have this but it sounds like something is affecting your SATS so if you feel it's not just stress then keep pushing. I'm not a doctor so I have no idea what it might be and it might be something small but if they've given you heart exams etc then at least you can be happy that it's not that!
Good luck - hopefully it is just the medication you take but it sounds like you don't feel that that is right so just keep pushing politely (and take deep slow breaths for 7/8 seconds, hold for 4 , let out again for 7/8 to get your stress down - apparently that's called Diaphramatic breathing if you google it helps stress (and people with COPD according to Harvard health that I was first when I just googled health.harvard.edu/lung-hea...
Hi response sorry to hear about your mum but glad she is okay and yeah I was like that at first thought I was going to die but nearly 2 years have gone on now and it's been hard don't get me wrong but I'm still fighting like everybody else and hopefully I will meet the right doctor soon and I will be diagnosed with whatever it is and treated for it accordingly.
I am glad they got your mum sorted eventually and she is on the right medication for her condition, as I stated earlier I'm not totally against all medication and some is very important and ground breaking for certain conditions but I'm glad your mum has been sorted and hopefully I will get there soon and get the right treatment to help me through whatever this is.
And I will look at the link you have said I appreciate you taking your time to.send it and write to me here and I will definitely have a look, I have tried some breathing exercises and they definitely do help, I bought one of them lung exercisers to and that helps.
But honestly thank you and you have a good day and take care and I hope you and your mum havee plenty of good years to come together👍😊
Thank you for your kind words about my mum - I mentioned her only to give an similar example that you're not going mad by wanting an answer when the doctors say to go away. The blue nails etc would worry me - when it happens to my mum I do Active Cycle of Breathing excercises as they are needed for Bronchiectasis but they might be inappropriate for your situtation (and if done wrong can do lung damage - so just mentioning so you have information .)
I've been wondering since writing before - you mentioned your SATS go down when sitting - have no idea if this could be a cause but just wondered whether it's something internally is pressing on your lungs when sitting. I imagine Xrays etc would have shown this up and doctors would look for this but I thought I'd mention it as I know how hard it is when Drs tend to send us away - it feels like you're left to sort out worrying things yourself.
Once again - all the best and thanks for your kind thoughts on my mum!
Hi Response hope you are well today and ah that is not a problem I feel for anybody going through pain or discomfort of any kind, my partner has got hiv she has had it for over 5 years and it's been really hard for her, she has to keep it from her children to as of the stigma that goes with it but I managed to tell the children and everyone is happy now, I met my partner and she told me what she had and the t did not bother me as I am an educated human being and I know what it is and the risks, but I also know it was not her fault how she got it as her ex partner slept around behind her back and then left her and then she found out she has it, not her fault but she has been through hell but I tell you one thing she had never had a day off work in 5 years due to it and she just keeps going, luckily she is undetectable and thanks to medication she can live a normal life, see everyone I'm not totally against medication some is so important it keeps a person alive. But luckily she caught it now not back in the 80s when all this poor souls died 😓
I suppose life has changed me I went through a brutal family murder as a child and my days coming home from primary school was walking through the door to my gran sat on a chair with her head stuck in a tin of old photos of her daughter crying as her daughter was brutally murdered in from of the children, I saw a women go from being the best person I knew in the world to an empty shell was horrible that but it taught me alot about pain and suffering I guess, I am actually writing a book about it now and I am hoping to write a beat seller, hopefully my spelling and gramma are not as bad as in these posts as it's like the daily mail.for spelling mistakes lol 😂😂
But hey don't worry I will mention that to.the.doctor I find it weird why my oxygen sats go up when I walk to when I'm sat down to I have mentioned this to everyone, I thought the usually go down with physical activity, can anyone on here confirm that ?
But thanks for your replies and you have a good weekend hopefully it's not like they say hotter than Mexico this weekend I can't deal with the heat lol, and keep away from covid and take care
I know you don’t want to hear this but I do think a psychiatrist and anti depressants may be the way forward. I was convinced I was seriously ill and could hardly walk, had all the hospital tests and came back ok. I had a busy life and could not understand what was happening to me, I just felt so ill. Eventually I was persuaded to see a psychiatrist and was hospitalized. Long story short after 4 weeks in hospital and course of antidepressants things started to get better, it worked for me and it may work for you, good luck.
Max
Hi Max thank you for.the reply but I don't need antidepressants sorry I'm happy you are doing well on them and I know they work for some but I am not depressed I laugh everyday and smile 😊 and me and my partner are very happy and under the circumstances I always keep going.
I have physical symptoms and my new doctor saw them told me I don't need anti depressants anymore as he knows it's a physical problem.
My lips are bluish and so are my nails, my liver bilirubin levels are very high and I am itchy and depression doesn't do that to you.
My problem is low blood oxygen and it's rather a lung issue or a liver issue, there is a liver disease that causes low blood oxygen levels and it's called HPS and the only way from that is a liver transplantation, the reason I say this is I have spoke to a chiropractor recently and she has told me that high bilirubin levels are a sign that something is going on with my liver but then my old doctor thinks I am celiac but I only realised a few years ago and that can wreck your liver over the years and cause cirrhosis amongst other things, I have switched to a gluten free diet now so although damage could.be done already it might help me for a while and maybe my liver can repair a little bit if that's the case.
But hey I'm glad you are happier on your tablets and that they are working for you, alot of people I know they have not helped them.ans they never helped me but then I have met a few who swear by them.
Marlon, I have read your post and most of the replies and I do not have any further advice to offer you but I just wanted to say that I’m sorry for your traumatic childhood and the lack of care shown to you by those who should have protected you. You clearly haven’t become a victim of your circumstances and your mother and grandma would be very proud to see the person you have become. I’m glad you and your partner are happy together and I hope you find some answers to your health problems by seeing a private consultant. Take care and let us know how you get on.
Hey Corin you thank you for your kind message but don't be sorry its not your fault just sometimes some people get the end of the stick that's all, my life was very bad but I had very good times to so it all wasn't totally bad 😁 when I was going through bad times I always s thought you know what there is someone out of the window in the world that is going through something alot worse than you and that's what really kept me going and then I am a fighter and no matter what this is I will keep fighting until my very last breathe.
I come from a family of fighters to he honest my great ancestor was called Edward Rushton and he was from Liverpool and back in the 1700 he was one of the first people to fight against slavery, he worked on a ship as a young boy with slave cargo and the slaves had a disease that made them go blind and they were locked in the hatch and all the ship refuses to feed them and he went down to sneak food and water to them and he learned a slave to read think he was called Quamina or something like that, and the ship hit a storm and everyone had to get off the ship and my ancestor Edward couldn't swim and Quamina pushed him the barrel that was keeping him afloat and he disappeared and Quamina went under and was never seen again.
My ancestor always talked about him, anyway after he was saved from the sea he got home and he went nearly blind as he lost his sight for feeding the slaves so he could no longer woro on the shops no.more so he used to pay children to read stories to him, and he fought the government here and in the USA about how wrong slaving people was, he lived in Liverpool back then and because of his blindness he decided to get other people involved and he built the second blind school in the world in Liverpool and the 1st one was in Paris, the building still stands today, later on a surgeon worked on his eyes and he was able to see a little again and he saw his wife and his children who he had never seen in his life so he was happy although some of his children had died and he never got to see them which must have been horrible.
But no I am proud to come from a man like him and the moral of the story is God works in mysterious ways, he was the one who helped the slaves and he went blind but the others died on the doomed ship, he was then able to really live in a blind persons world as having being able to see and then have your sight taken away only to be able to see again and really feel the experience 1st hand is what made him build the blind school to help those people, while at that time nobody was interested in disabled people but he was and not only that he was against taking anybody's freedom away.
Anyway I suppose everything happens for a reason, I will be honest with you my partner is the nicest person anyone could ever meet, when I was young I would have been scared to death of someone with HIV, see it's the unknown that people are scared of, but why should people no matter what there illness have to hide away from society and remember whatever disease or disability you have at the end of the day you are still you and don't let anybody change you.
Thank you for your kind words about my gran she is at piece now and her and her daughter are buries together again in the same grave so they are together and I am happy about that she was a nice lady who would do anything for anyone of she could, she grew up in the war and that generation were different than most today the all shared the same thing and that's to help eachother and to he thank full for what you have and to help thy neighbour, it's such a shame things are not like that today.
And dont worry I will keep everyone updated on my progress, I suppose most of us are battling one thing or another or someone close to them is and that's why we're all here on this site, but I will keep you all updated so if anyone else is having similar symptoms then maybe we can help them.
Thank you Corin you take care
Marlon 👍😊
in reply to
Also if anyone wants to read about Edward Rushton he is called the forgotten hero he is in Liverpool museum and allover the internet then read this it's a good read if you like stories like that.
Hi, I have had a similar experience to you, I have often the feeling of air hunger and like trying to get a deep breath, it comes and goes. I can feel fine one day or for part of the day then it can happen and will feel like I am having trouble breathing.
I had many tests for my heart, echocardiogram, had beta blockers Bisoprolol for tachycardia they said it was not a problem and I didn’t need to take them but I took them for two years as they made me feel less anxious about the breathing. Then they put me on asthma sprays which made me worse, especially ventolin I had to come off it as it made it harder to breathe not better. Then I was off all medication for a year then they put me on another asthma spray even though I had a feno test for lung function which said my lungs were as if I didn’t have asthma. My chest x rays were fine too,
My blood oxygen levels go down low as well and then go up to 96-98. My peak flow is good even when I get the feeling I can’t get enough oxygen.
I had allergy tests and a nasal endoscopy which was fine too.
Now I am being given omeprazole for reflux which I don’t have but they said sometimes you can have it and not realise and that can affect your breathing that has helped me a lot and have felt better on it except it had side effects of making me feel sick. So they have changed the dose.
I also am taking an antihistamine lately as they were not sure if it was, pollen related or not or asthma or reflux. I’m puzzled at how long I have spent not knowing what is wrong and have been told it may be anxiety but as a child I had allergies and mild asthma so I’m not sure.
It’s so difficult with not being able to even see a doctor now as I feel like I’m just having to try out all these medications without them really establishing what’s happening.
Are you taking the beta blockers still? I felt the best I had felt on them wished I hadn’t come off them as they seemed to help. Have you had a feno test? Do you get breathless on and off and have trouble with deep breaths or feel short of breath when walking?
Hey hazyeyes
Firstly thank you for the message and.well you seem to be like.me unfortunantly in the having lots of problems but not having a clue what is actually going on right now and I really feel for you as I'm in the same boat having this test and that test and still nothing and it's very disheartening isn't it.
I'm still on bisoprolol and I'm glad as it keeps my heart in rytham and I know what you mean about being more able to.breathe properly on them, before I took them I was short of breathe just going up.the stairs even though.i.was fit as a fiddle before but them I did smoke years ago which knowing what i know now was a stupid thing to do.and I would never put a ciggy near my lips ever again but like.the saying goes you live and learn, well some do some dont lol, but yes short of breathe.going up.stairs was my.first complaint, then came the.tachycardia episodes and i ended up in hospital a few times by ambulance but again they put it down to stress, see if they don't understand it then it is stress related well so they say, you see the.human.body is a very smart machine and if you cut yourself your body.doesnt.let all your blood spill out it actually repairs the damage itself it is an amazing thing and although they know lots about the human body they do.not know everything, and things happen in the body that takes time.
For instance your.not normal one day then wake up in the morning and your a diabetic it's a gradual process and you will feel lots.of changes maybe hormones and chemical imbalances that the medical community.cannot describe and only.you know something is not the.same anymore and I don't feel like i used to and you get worse and worse until your diagnosed with diabetes or something else.
If I was you I would get some.more tests I know it's hard right now with covid but if your not severe I would wait it out as long as you can until covid comes down a little and hopefully we don't get the second wave they keep going on about, but stay away for now unless you become bad, then whilst your waiting take vitamin d with k2 everyday, it is a proven fact that low vitamin d levels affect the lungs and your more prone to chest infections with low levels , it's proven I take it everyday and I get less problems with my lungs trust me and if you go on YouTube type in Dr Berg and watch his videos or even Dr John Cambell and he will tell you how important vitamin d is for.lung issues but make sure you combine it with k2 to get the full affect,
There is also alot of talk saying low vitamin d levels in people's body are making recovery from covid 19 much worse from study's that have been carried out around the world as vitamin d is very important I will post a video for.you below to watch see low vitamin d levels can cause a condition called cykotine storm.in your body.and its actually your bodys immune system that goes into overdrive and kills you, yes your own body can kill you not.covid 19 while.it tries so hard to fight it off other than that try to eat healthy maybe nuts and seeds and olive oil and lots.of green vegetables and pulses and try getting some healthy.exersise maybe a nice walk somewhere green and relax somewhere listening to nature it helps honestly.
I have not had the feno feno.test but I am going to look into it
Hi Ragnar1606, I understand your frustration with not getting a clear diagnosis. Like you, while waiting for a diagnosis I read up as much as possible about my condition and found this forum very helpful. I initially joined this site, along with a liver forum when I was being tested for hepatopulmonay syndrome. Prior to that I had several lung function tests and heart scans etc to eliminate other causes to explain my low blood oxygen levels.
It took approximately 18 months before I was finally advised that I didn't have HPS. My GP says it's likely that my low/fluctuating sats are caused by a small hole they found while doing heart scans. I have a right-left shunt which basically means there's times when some of my blood supply leaks through the (tiny) hole and flows in the wrong direction, by-passing my lungs, not picking up oxygen.
The cardiologist doesn't think the hole is significant enough to cause my condition, their department say its probably my liver. The liver department say go back to cardiology! It is disappointing to not know for sure but I do feel slightly better as I now know my limitations and don't try to do everything that I could do before. My Pulmonary Consultant called it exercise induced fatigue, which in my case could be lifting/carrying something heavy or even bending during basic household chores!
I hope you do eventually get answers, it should be quicker going down the private route. I was with the NHS and there was a lot of waiting to get tests, then waiting months to see the consultant again. Like you, I saw a very negative GP a couple of times, he did make me feel like I was making a fuss over nothing. Apart from him, all other NHS staff were brilliant... 💗🌈
Hey there thank you for your message and sorry I have not been on the site for a while now but thank you for taking your time out to reply to me i really appreciate it.
And yes I thought mine might be HPS and hopefully I will find out soon but I think it is going to be a diagnosis of HPS or severe emphysema but only time will tell I guess.
And its not nice being passed about but sometimes it takes that to find out what's wrong but its how long each appointment takes thats the thing, and yes i have had some very bad experiences with some medical professionals but then there have been some good times to, I just think its like there working very hard and so many people need diagnosing and there's not the man power and money and this is the problem, to much to do so little time unfortunately 😞.
Anyway I will keep you updated on my outcome and you stay well and stay away from covid and again thank you for taking your time to reply to me.
Take care
Marlon 🙂
Update on my situation my I am now suffering congestive heart failure 💔 my blood pressure was going sky high up and down and my heart rate shot up and I was in fight or flight mode, didn't sleep for 3 nights as was wired and palpitations kept coming and going and pupils were dilated was horrible.
Now my medication 💊 has been increased though I am starting to feel a little better and last night managed to get some 💤 😴 which was great, going to be assessed this week so hopefully they will sort me out more.
Before it happened I had a few bad few weeks and my partner said I was breathing heavy in my sleep so looks like that was the start of it all, I think my heart has been failing for quite some time and my body was compensating for it but its now got worse.
Anyway thought I would just update the site with this you all stay well and safe 🙂
Thanks for the update. It’s good that you’ve been diagnosed, at least you can start getting the proper treatments. Wishing you all the best, and good luck with your assessment.
I'm sorry to hear this Ragnar. How awful for you. On the other hand at least you now know what is going on and can get it treated. Keep your chin up, there is so much that can be done nowadays. Take good care and please keep us updated.
Best wishes,
Cas xx 🙋🐕
Thank you hopefully I.will get through this its all a bit worrying to me has anyone else got this on here to im kind of scared now
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