Hi, I’m at day 35 with covid19 and not doing great. I wondered ifhas anyone been investigated for hypercapnia (too much CO2 in the blood) caused by very shallow overnight breathing? Symptoms are normal or high pulse oximetry, feeling of dizziness, confusion and fatigue in the day. Day time sleepiness. Sometimes flushing red. Nightmares, morning headache and SOB. I think I have this, it’s tested for by a blood sample from a wrist artery so can only be done in hospital. It’s common in people with COPD. Any idea how I get a test as I tick all the boxes. Thanks
Mike
Ps I normally post on the thyroiduk site
43 Replies
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Hi Mike,
day 35 of covid19 recovery symptoms, that doesn't sound so good. Regarding your symptoms I think you should be speaking with the Hospital if you have been in hospital, if not your respiratory specialist or GP.
hypercapnia with COPD can result but also I've read with severe coronavirus infections.
Take good care, if you are in trouble with breathing do call 111 or emergency
Thank you A&E said they wouldn’t test unless I was critical And GP says just wait and see. I feel dreadful confused, hot, headache and bit agitated and anxious I suppose I just have to wait and hope I improve. Had these new symptoms for last five days.
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That's awful Mike, if they get any worse than they already are, definitely phone 111 again or your GP, take good care and I hope you feel better soon.
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Thanks Bkin, I’ve been in a similar situation before. Three years ago when I developed thyroiditis and thyrotoxicosis (basically the thyroid dumps a ton of hormone in one go and sends your whole metabolism into overdrive) I saw about five A&E doctors and a few gps over five months who all insisted I was anxious. I was given Valium and sertraline until Finally a chance test picked it up and I was put on the right meds. I am going to have to persist with this too. A friend said you know your body trust it.
When it first happened hospit at first thought it was bad chest infection and put me on oxygen until someone mentioned maybe retaining c02 they put a CPAP mask on and slept with mask on all day and night spent 4 days wearing night and day until they could get my levels back to normal. Plus the chest infection didnt help but after 10 days everything settled they arranged for me to take machine home with me and I find by the time I go to bed I need mask on. . I used to have panic attacks over my breathing at the beginning I'm slowly getting better. I went classes to help control my breathing levels and keep me calm it does help
Speak to respertory nurse she will be able to help you
Hi Spacecat1, no I’m still trying to get a referral rather than to be told wait and see. I looked up the local respiratory service online and will call tomorrow to see if they will take a referral during lockdown.
I retain co2 its awful my breathing so bad recent I had 2 ambulance one wanted me in asked 4 times I did not want to go because I cough a lot did not want to frighten normal people. The second said I had low blood sugar and try relax on my nebulizer also said I have tonslitus. They sat outside an hour trying to get through to my doctor and ordered antibiotic. They said I do not have covid19 because my cough was very productive. Covid19 is a dry cough. I have hypercapnia and very dry mouth. That's it I get antibiotic inhaler and left to get on. I have severe outflow oxygen doesn't work on me. Nebulizer helps.
Hi there hypercat54, only had these symptoms last five days, getting worse though. At night I have to sleep propped up and yes I do wake with a start not breathing.
Mike you said on your thyroid post you are having your bloods done on thursday.maybe whoever is doing the bloods can direct you towards a test for covid19 if you are concerned?and it you get the test and it proves negative then perhaps you can ask for a referal to a respiratory dept for further investigation?
Hi skischool, thanks for your advice i wish the NHS was as enlightened as you.I think I’m over the virus and I’ve been to the corvid clinic. They diagnose by symptoms but you only get a test if you are admitted and go on oxygen which seems unhelpful. I asked for a respiratory service referral but the GP said it was closed to outpatients due to lockdown. So feeling a bit stuck. Do you know if they can test for this privately?
But I’ll phone to see if they can test anything on Thursday that might be useful.
Unfortunately Mike a diagnosis by symptons alone is not a diagnosis.maybe as i said previously your thyroid nurse can escalate you up a level.private tests as far as i am aware are not available yet but home testing kits are promised for the future but as we all know government promices on tests are not particularly reliable at the moment.
You could go privately for the respiratory tests but i imagine it would be both incredibly expensive and the wait would be long as the private sector are currently contracted mostly to the nhs at the moment in containing the covid outbreak.
Thanks skischool, yes you are right, I think it was covid19 so did the doctor but it could have been anything without a test. I should be negative by now so I’ll have to wait for a reliable antibody test. Meantime a respiratory assessment is my priority.
Might be a long time. I had a respiratory follow up appointment next month, brought forward because I have had a lot of exacerbations with bronchiectasis. This appointment has just been cancelled and replaced with one for February 2021!!
I guess there is now such a backlog they will never catch up. I fully expect that appointment to be cancelled too nearer the time.
Hi Mike, yes I was was diagnosed with Type II Respiratory Failure April 2017 and immediately put on oxygen 24/7, I was also told I would probably have to use BiPAP for the rest of my life.
Whilst I was in hospital for eight days, I used BiPAP for about four days and CO2 retention improved on BiPAP, but when I was discharged they just sent me home on oxygen, I managed okay for a few months, but in the October when I was in bed my oxygen cannula came out when I was asleep, when I noticed I put it straight back in and did oxygen SATS and they were 75, the next day I contacted my respiratory nurse and they arranged a sleep study, I was told I would have to go into hospital to be set for BiPAP, but because it wasn’t classed as urgent I probably wouldn’t be admitted until the New Year, I was actually rushed in on New Year’s Day 2018 suffering CO2 from retention and pneumonia, I was in hospital for another ten days until I got my BiPAP sorted.
I have been using BiPAP ever since, and it has completely changed my life for the better, I now only use ambulatory oxygen for walking and exercising and BiPAP and oxygen at bedtime.
I had all the symptoms your mentioned, I also used to be falling asleep in the morning and had violent tremors.
Ian, that sounds awful, I’m glad you finally got the help you needed. I’ll keep pushing for an assessment. I hope I don’t deteriorate any further before I can get checked out.
Hi Mike, I was worried at the start, but once I started getting used to the BiPAP mask, I haven’t looked back since, I no longer fall asleep in the morning or get the tremors.
I should have been going to Gran Canaria last month, but unfortunately Covid-19 put an end to that, I’ve now been in lockdown for six weeks and classed as vulnerable, but when you see what other people are going through it doesn’t really seem so bad.
Thanks Ian, I think I picked up the corona on Gran Canaria, the island was under strict lockdown (got moved along by police for dawdling on the way to the shops!) when I left in March so you didn’t miss much. Good to hear you are doing well.
Don’t want to panic you but you must contact your hospital. I had exact symptoms together with oedema and resulted in emergency admission and long stay on respiratory ward. Discharged in December with oxygen at home and overnight non invasive ventilation (wear mask but no intubation ). I feel fine now except short breath when active. I got out of hospital just before Covid outbreak and have been shielding all year so used to it alread. Stay strong and think positively.
Thanks for that Turinhorse, I hope you are recovered, sounds bloody awful. Makes me determined to follow up today.
I have this problem and use a Cpap machine at night. I think you need to get the GP to refer you to respiratory medicine. I hope you start feeling better soon.
Hi Mike77, don't know if this will help but yearly I get my oxygen sats & co2 levels tested by o2 nurse (? more experienced/qualified ?). She checks my co2 by taking a drop of blood from my earlobe, much easier than trying to get from my wrist as I have horrendous veins. Have been on CPAP since 2007 - this is for sleep apnoea, you would need a BIPAP machine for co2 & must be done in hospital. I had all your symptoms before having my CPAP machine, it helps get a good night's sleep but unfortunately my o2 levels are usually just above 90 (I have severe brittle asthma) & now been told will remain permanently on it 24/7 for rest of life. Please ask the lady that is coming to do an (if possible) quick referral as it can be dangerous. Take care & try to get the ball rolling sooner rather than later. Chris
I have to wear a wristband that states CO2 retention, as I am on oxygen 24/7 for advanced intertestial pulmonary fibrosis. I get a lot of morning headaches, and gets worse during the day, the symptoms you describe are typical of the problem. I take morphine or paracetamol, it helps. Sorry I cannot give any advice on this, but you are not alone. Talk to your health care advisor. Take care of yourself and stay safe and well.
I had pneumonia and type 2 respiratory failure twice 2018/19.
I was getting very breathless, rapid shallow breathing. I couldn’t walk more than a few feet without resting, l was unsteady and fell a few times. I had no energy, unable to stay awake for more than a few minutes. Muscle twitches and spasms, some quite extreme. I forgot to eat and drink, even then l was unable to feed myself. From there l had hallucinations. It was strange, l knew what l wanted to say or do, but it took so long for the message to get to the rest of my body. Next came Cor pulmonale . Eventually l became unconscious .
Fortunately my daughter arrived and called an ambulance. Apparently l wasn’t expected to survive, as the acidosis was high.
l am considered unsuitable for intubation and so a DNR was put in place. However l am stubborn, using a Bipap , the co2 was reduced to a workable level. I was released , but about 5 days after returning home the symptoms recurred. After another couple weeks in hospital l received a Nippy ST+ Bipap for home .
Initially l was a bit sceptical of its effect and felt a bit down about having to use one of these for life. But it has made such a difference. I wouldn’t be without it now.
While in hospital l had ABG bloods taken at least once a day. That is the measure for co2 . From what l understand this can only be done in hospital, they use a particular machine that gives them a reading within a few minutes.
If you feel you are having such symptoms, do be persistent. I know this is not the best time to be going to hospital, but if you feel you are getting worse, please do call for help.
Hi Mike 77, i was in a similar situation to you , I'm now 42 days after my breathing difficulty started with suspected covid 19, I was taken into hospital twice with shortness of breath and fast shallow breathing and high resting heart rate. They said my oxygen levels were ok but the second time I went into hospital they did do a blood gas test and said it was fine, they didn't give me details of the results but they presumed I was still suffering from the after effects of the virus, I am also an asthmatic and at this point I was severely dehydrated, I had been taking steroids for 4 weeks and had been treated for pneumonia with 4 different antibiotics so they also put my slow recovery down to all of this. I also picked up another virus after returning home from the hospital and this then pushed my temperature up even higher I was flushed and hot most of the time had to take paracetamol every 4 hours. Its about 9 days ago since I last attended hospital and my symptoms like yours since have been very up and down during this time but I think that's due to the virus, the hospital are looking for certain markers and I scored low on these for being admitted. The ambulance man said people were only being admitted to hospital if they are at crisis point which personally I think is too late for alot people but that's just my opinion. However the good news is that although my recovery has been slow it is happening and I feel a bit stronger every day, I have alot of fatigue and muscle weakness I've lost over a stone in weight in 4 weeks and have developed steroid induced diabetes but I'm hoping this will resolve over time and I am currently tapering from the steroids, Obviously if you're breathing difficulty gets worse call 999 not 111 the ambulance guys also advised this. I was also given a few days off diazepan to calm my nerves and although I wouldn't recommend taking this medication this it did help to calm my nerves at points when I was panicking about being so ill at home, my GPs were a Godsend my husband and I spoke to them frequently during this difficult period it helped to think the advice was there when we needed it so I would use them as much as you need to. I think the receptionist now knows me by voice alone 😂.
I normally have this when I’m struggling with severe sob. It does settle with me when my breathing starts to ease but it can take a while. I tend to rest a lot so that I’m not increasing my demand for oxygen and that helps me. If you are really worried then you should contact a health professional or if you are not improving. You may need some additional medication to help you.
Hi Mike don’t hesitate to phone 111 if things worsen .
Unfortunately private hospitals are all under the NHS doing emergency ops only. You may be able to get a telephone appointment with a private respiratory physician though. ( thinking they may get you a test as phlebos are still working in private hospitals)
Outpatients are mostly closed in private hospitals but some consultants are still doing their telephone consultations there.
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