British Lung Foundation
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Undiagnosed

Hi. I am hoping for some advice. I am under a cardiovascular respiratory consultant for 2 years though I have never had a consultation with him. I meet technicians who take observation and tests and pass the info to the consultant for review. I have been fainting for 8years and 4 years ago ended up in hospital. My oxygenation was 82%. Since then I have had numerous tests and luckily my heart lungs and brain look good. But my oxygenation during the day never gets above 95%, ticks over at 90%, and at night or when I'm ill can go as low as 74%. I have Coeliac disease and Dermatitis Herpetiformis (autoimmune disease). I'm fed up with fainting and being exhausted all the time. My GP says he's surprised that the hospital haven't put me on supplementary oxygen, but the hospital say I am managing OK without and they can see no reason for my oxygenation to be so low. My question is, should I accept the position or should I insist on a second opinion? I'm am so fed up. Any thoughts and guidance would be appreciated.

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If I may a few questions. How good is the circulation to your hands and does your dermatitis affect readings of your saturations? The hospital uses far better equipment to both carry out and take more extensive tests. I would ask your GP to obtain the results from your lung function tests, blood gases etc so that he can get a full picture of your lung function. The only thing that would make sense to me is that your pulse oximeter is giving inaccurate readings. Have you calibrated your oximeter to the ones at the hospital?

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Hi, thank you for replying, it is much appreciated. My oxometer is calibrated and the oxygenation confirmed through arterial tests. My circulation is OK though when I faint my fingers are tingling. I lost consciousness during a TOE in December. The cardiologist performing the procedure said he'd never experienced a similar situation as my heart and lungs were working fine (I was wired up to all the monitoring equipment). but my sats fell suddenly to 64% and remained low at 80% so had to stay in overnight on oxygen. I had a Lung CT with dye recently and am waiting the results for that. It just seems so slow......

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Obviously no one can diagnose over the net. But as tests showed both your hear and lungs to be OK. I just wonder if there could be a problem with the carotid arteries in your neck. Your symptoms suggest a vascular problem. However they also match others. I would talk with your GP about alternate diagnoses if your lung tests are normal. Sadly medicine is a process of elimination when trying to get a diagnosis. I hope you get answers soon. Please keep us informed.

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Thank you x

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Hi Kernowflock, I suggest you call the BLF Helpline (03000 030 555 office hours) and ask for their advice. They may be able to advise you on what your next step could be in order to get answers to all your questions.

Best wishes, Annie

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Thank you, I will.

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"the hospital say I am managing OK without and they can see no reason for my oxygenation to be so low." That seems weird to me - whether or not the hospital knows the answer is not relevant - what IS relevant is the fact that this desaturation into the 70s is happening and could damage you. I would say, yes, do ask for a second opinion but as Annie suggests a chat with the BLF helpline nurse would be useful. Good luck.

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Thank you

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I was told that under the NHS you are entitled to a second opinion but not until you had a first opinion so until you are diagnosed you can't get another opinion

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That's seems to be the line of my GP. He wants me to continue with the hospital to see what they come up with. Thank you for your response, it does help to know others opinions.

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Hey there, my actual name is Mary. I don’t know why I landed on clicking YOUR bio. You must be a friend of the universe tonight and that’s way cool. I couldn’t help feeling your pain and frustration you’re having with all the health care professionals. Since becoming a professional patient at 25 an am now 52 I’ve found telling jokes will sometimes snap them out of their limbo type fog and make them pay closer attention to the words coming out of your mouth. Make friends, real friends, w/at least one of your doctors . Always know who’s in charge at whatever office you find yourself at and know exactly where their office is located and don’t be afraid to choose that door if you’re desperate. If you’re shy or real self reserved GET OVER IT-it’s your life and you’re entitled to live it w/out suffering mentally, physically or emotionally. When you mentioned going to consultations where you hadn’t met the actual consultant I’m sorry but I was seriously laughing out load cuz I’ve been there done it. And the above mentioned are a couple things I’ve learned along the way to get things accomplished. Really do your research before going on supplemental oxygen. It’s the immediate gratification thing we as humans gravitate towards but not such a good idea if you wanna stay here in this life for still a good amount of time. It breaks down a lot of healthy tissue we really need for bigger jobs in our body. Do you eat a gluten-free diet due your Celiac disease? O my I live in SanDiego,CA. and almost everybody you run into is either eating gluten free or vegan or their talking numbers as in points of foods on certain diets. Yes I come from the land of fruits and nuts ( and hypochondriac ‘s) but good luck to you- just breath🌬 I do know a few gluten-free dishes I could give you. Here the big one is corn tortillas but NOT flour! I’ll go read the rest of your bio cuz who knows I might be way off cuz I am super tired👋🤙

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