New here..looking for help/advice/understanding etc!

Hi.. I've just found this site. I've been struggling with SOB for well over 2 years now. I've had various tests performed while living in Southern Ireland up to and including a lung ct scan with the diagnostic report of possible Hypersensitivity pneumonitis to something Obliterans.

Upon returning to England to live I took my ct results to my new GP who has sent me to a consultant at the county Ive basically realised they are starting from the beginning again...and as frustrating as this is (they are basically saying I have asthma, which the Irish Drs never once thought I had) i am getting concerned about my 02 oxygen levels... I purchased an oxymeter to check my stats and am at 90 first thing in the morning, down to 88 mid afternoon and down to 80 to 82 in the evening. I keep reading that with stats this low I should' be one supplemental oxygen, but....considering that neither my GP or Consultant has checked my oxygen levels I feel that if I go to my GP and ask about oxygen he will basically tell me no.

I do not have a job and this is probably a good thing as I would not be able to work...a friend of mine visited me last night and today I am abslolutely exhausted....does this sound like asthma? I've never had an actual attack...just short of breath when I walk...I used to walk 7 miles a day, now I don't want to leave my house for fear of not having any energy.

If anyone does take the time to read this rambling I thank you!

19 Replies

  • Sounds similar to my story, 15 years being treated for Asthma.... only real symptoms constantly tired and shortness of breath when walking; now it's COPD .... go figure!

    Give the BLF nurses a call, and chat with them over your concerns, they'll be able to give you the proper advice. I keep seeing that number, and as quickly forgetting it, if it's not 03000 030 555, I'm sure someone will advice accordingly.

    In the interim, welcome to the site and you'll meet a lot of fellow sufferers on here, the most of whom like to keep the spirits up and smiling ;)

  • oops, me an my spelling eh? *advise :)

  • The whole feeling exhausted thing sounds like me, always seem to be.

    welcome to the site im sure you will make many new friends :)

  • welcome lillytan, your experience sounds quite typical and ramble on as that often helps to relieve the frustration of trying to get a proper diagnosis and treatment for lung ailments. Your oxygen levels do seem below norm and your symptoms do not sound like Asthma. So time to look for some advice and answers. Ring BLF then you will have the info to question your doctor. From experience it takes persistance to get answers so good look with it and hopefully you will be back on the site to chat again.

  • Hi Lillytan, I think you should be communicating your o2 saturation figures to the doctors and perhaps get your oxymeter tested against theirs to be sure both are reading the same. If this is the case I can't see them ignoring that and will likely have your arterial blood gas tested to confirm. As suggested chat with the helpline for further advice.

    Take good care and rest when you need to especially when sats drop below 90.

    Do you know of diaphragm breathing, this can help bring 02 saturation levels up.

    This video demonstrates it sitting up but if you've never done it before you might find it easier lying down.

  • Hiya Lillytan

    Welcome to the site. You can pick up all sorts of information on here. When I went for my Pulmonary Rehabilitation (It's a sort of excercise and breathing training thingee) assessment my SATS were 92 before exercise and 86 afterwards. I was put on 2 litres of oxygen per minute when exercising. A SAT of 82 sounds very low so I would get it checked out if you can. Best regards


  • Sounds Complex ... But Think Starting Over Might Be Best Thing ... Have You Been Coughing A Lot ... And Any Blood If You Have Not Thats Probly Why Starting Over

    All The Best

  • Thanks for all of your responses...I just really don't know what to do or where to go from here...I lived in NYC for 18 years and had great health care there, I knew where to go and what to do when I needed a certain Dr I just made an appointment and went...over here it's always "let's wait and see, shall we?" I'm just so tired of waiting and seeing as time is going by and I am getting worse and worse! I do have a dry cough, and I know I have asthmatic reactions to cats or dogs, but I don't have any pets here in England, so this even though its getting worse is not due to the dog I used to care for in Ireland.

    Last night a friend came to visit and I had a lovely evening, but all day today I've felt like death warmed up, just so weak and no energy to do anything. I have lost approx 40 lbs in just over a year as I have no appetite to eat much...and hey,'s not that I didn't need to lose the weight, so I'm not complaining....but I know it's because there's something wrong with me, as this wasn't through sensible eating and exercise, in fact I've gone from 6/7 miles 5 times a week to nothing !

  • Think Its Part Of Your Condition .... Have To Take Things In Moderation From Now On ... I Asked My Doc About Feeling Shit And He Said Best Get Use To It

    Might Be Worth Seeing Doc Make Sure You Not Getting Chest Infection

    Cheers All The Best

  • Hi and welcome Lillytan. Your sats are low so tell your doctor to do a test. In fact the consultant should have given you proper test. I have found that sometimes you have to be proactive to get things done.

  • Hi this must be really stressful for you. Please ring the blf helpline who will be able to advise you. Good luck and in the meantime look after yourself. Take care TAD xx

  • You definitely need some good advice Lillytan. Let us know how you get on.

    Lib x

  • Welcome, you will be among friends on this site. I joined fairly recently and the people here have been very kind and helpful. Do ring the BLF helpline, the nurse I spoke to was very helpful and suggested questions I should ask my GP. I do wish you all the best of luck in your quest to find the answer to your symptoms. Take care.


  • take time to look at lots of the blogs on here - search key words and you will find a mine of information and tips. BLF has a great pack they can send you. and yes, do ring them - they are always a help. xxx

  • That does sound more like COPD rather than asthma when I went for Pulmonary rehab during excercise my sats drop to 75 but recover very quickly afterwards back to around 97 all within about 5 minutes. The course is so good I'm being referred back to it.

  • Loss of appetite and weight can be associated with emphysema. It's also possible to have both asthma and COPD (Chronic Bronchitis or Emphysema).

  • Do not want to worry you unduly but I was putting up with shortness of breath, feeling tired, exhausted all the time, unexplained weight loss, unable to concentrate for any length of time, and a general feeling of unease (I knew that there was something wrong with me but not what it was) When I also got very bad water retention legs, ankles and feet swelled eventually went to the doctor who treated me for that and, as I had a history of chronic bronchitis was also arranging for a lung x ray. Anyway, to cut a long story short went back to get some results for a blood test when she tested my oxygen level which was 81 she sent me straight to hospital where I was put straight on oxygen and admitted and where I remained for 17 days. Now diagnosed stage 3 emphysema and have oxygen unit at home. So my advice see doctor immediately but that only my advice - as everyone here says phone helpline and take their advice good luck and good healthx (and by the way have since read the weight loss was due to using so much energy just trying to breath and mental confusion or rambling also a symptom of low oxygen so do not worry once you are diagnosed properly things will get better - love my oxygen machine and feel so much better now xx

  • Hi Lillytan. Can't add to whats been said just wanted to say welcome to the site. There are a great bunch of people here.

    Bev x

  • Thank you all for your kindness, taking the time to respond to my really helps me to know that I am not going totally crazy thing though...the mention of emphysema has come up a few times and I wonder, would that not show up on a lung ct scan, and if it did, what would that look like? Ie my scan showed possible hypersensitivity pneumonitis, and something Obliterans along with bronchiolitis (I think) but no mention of asthma, copd or emphysema! My problem being the Drs here in England are starting all over and I am getting worse all the time!

    Undine, would you mine telling me what tests etc you had done and were u admitted to hospital because of your low pulse oxymeter test? This scares me as no one seems to even think about checking mine...It was suggested to me by someone who has lung problems and so I bought myself one.

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