Help as waiting for diagnosis and confused?

Posted , 6 users are following.

I have a date for a ct scan of my chest and abdomen due to the following: unintentional weight loss, breathlessness when I walk and blue lips after walking or doing anything, clubbing of fingers and toes, oxygen levels normal (ie 95-99) and pulse 55 when resting in a chair but when out walking in the cold my oxygen level drop to around 77 and pulse rises to 180. (I have been using an oximeter to check). My peak flow meter measures 280 - 300 when it should be 430 at my age and height. So what could be going on? Any ideas would be appreciated x

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  • Posted

    my oxygen & pulse levels are also normal when sitting but change dramatically when even walking to kitchen. i was put on oxygen 24\7. i dont have to use it when sitting, but since i get up and down i just do. I had a ct scan that showed nothing but my Spirometry test showed i only had 49% lung capacity. strange thing is I'm never short of breath.

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    • Posted

      Emphysema. i smoked a lot of years, quit in 2004 but too late, got diagnoised with this in 2016. at home i have a large concentrator with a 50 ft cord, when i go out i have a small one about the size of a purse i carry on my shoulder. I'm in US, so if you're elsewhere i don't know what they give you.

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    • Posted

      A portable oxygen concentrator the size of a purse sounds great! I am in the UK and don't know what sizes they have here, though I have seen one person pulling a larger one than that in a shopping trolley. You take care x

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  • Posted

    TCup,

    Sorry to read of your distress. I can't recall where I've read about symptoms just like your experiencing. Not being an M.D. (and most here are not), the best that I can recommend is to keep contacting your medical professionals for help and advice. Ask about diet, physical activity, and any over the counter (publically available) medications that might be of aid to you. Keep them aware of your condition. Sometimes you have to speak up or no one else will do it for you.

    If you have some assistance, get foods that will help provide better vitamins/minerals such as fruits and vegetables.

    Next you spoke about your weight loss, is that a result of loss of appetite that could be linked to your symptoms.

    Forum members can and do offer a place to discover, learn, and find a sympathetic ear, but you must fight for your health by being aggressive with your medical providers if you expect to get the best care.

    Best of Luck

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    • Posted

      Thanks for the reply and your advice. RE my weight loss, I have continued to eat the same despite losing weight - that is why I am concerned, as is my GP.

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  • Posted

    Hi Tcup

    You say you are waiting for a diagnosis.

    You talk as if you already have a diagnosis, using the oxipulse, peak flow etc, oxygen levels, clubbing fingers etc.

    I would just suggest waiting to speak again with your doctor concerning your ct scan results and perhaps if you are not under a specialist already I would ask your doctor for a referral to a respiratory specialist, just explain what you have said here.

    Hope all goes well with your ct scan results.

    Keep us posted how you go on.

    Best wishes V

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    • Posted

      No, I don't have a diagnosis. The doc did the peak flow test at the surgery and he measured my pulse/oxygen levels there too. He aslo notice my fingers looked clubbed and when he checked my toes, he said they also looked clubbed. I purchased an oxipulse from Amazon to check my oxygen when out and about or doing physical activities around my home because that is when I feel most breathless.

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    • Posted

      Usually people already diagnosed with breathing difficulties or lung disease would even think about checking blood oxygen levels and even connect that to clubbed finger nails.

      As suggested previously (and if your oxygen levels are dropping frequently) as you have said, your GP should refer you to respiratory specialist, if you are not already under one ask your GP for a referral.

      Are you living in the USA,UK or Other?

      Good luck with your CT scan results.

      Things will become clearer once your results are known and anything untoward you will be referred to a specialist for ongoing checks and treatment.

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    • Posted

      If I was already diagnosed with a lung disease/problem, then why would I be asking on here? It was my GP who said to me that he wanted to check out my lungs after seeing the clubbing of my fingers and toes and then checking my oxygen level (which was normal at the time as I was sitting in his office) - which he said does not rule out lung or heart problems - and then checking my peak flow level.

      I know I struggle to breathe when moving around so I would not be surprised to find I have some problem that is causing me to feel the way I feel. And to add, I have never smoked in my life.

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    • Posted

      The most important thing is to find out what is causing your symptoms whether it be lungs, cardiac or something else. Its best not jump to any conclusions until the professional diagnosis is given after several tests.

      Your GP should be referring you to a respiratory specialist in my opinion for what it is worth, however I am not, nor are others here medical professionals so we can only speak from our own experiences, and what we have experienced with our own diagnosed lung problems may not at all be what is happening with you.

      Once referred to a specialist (if lung issues are suspected) both lungs and cardiac tests are actioned by the specialist to determine precisely the problem. Yours may not be COPD at all.

      Best wishes with your test results.

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  • Posted

    Hi Tcup. . Hope your ct scan goes ok. Would not recommend getting aggressive with your medical team as suggested on here. Might not and probably won't be necessary. Your symptoms warrant investigation and getting aggressive and stroppy with your Drs, who are after all only human and trying their best will probably just get their backs up. I'm sure we don't need to tell you this. All the best.!.

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    • Posted

      I am not an aggressive person - in fact, I'm probably too shy and often suffer in silence than visit the doctor! So I will just wait to see what my ct scans show and take it from there. I just hate waiting for results and investigations! Thanks again for your kind words.

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