Quick recap...... I have seen several doctors over a period of at least 11 years complaining that I wake early every morning feeling very unwell. I have said that it feels as if I am recovering from something traumatic that happens during the night and have always wondered why no doctor ever suggested monitoring my sleep to find out what is going on.
A year ago, I saw a doctor who upset me a lot by just dismissing my concerns as stress and depression and only offering me counselling, in spite of my protests that I when these problems started I was not under any stress. I was so upset, I didn't even go near another doctor for several months.
This year I bought a little pulse oximeter and discovered that my heart rate was pretty low, so I told a new doctor and she referred me to a cardiologist. Although she put this through as urgent, I have discovered that the wait to be seen is estimated at 40 weeks!
Pondering over the prospect of this long wait, I was particularly unhappy as I cannot know for certain that the low heart rate is even the cause of me feeling so bad every morning for such a long time and I do not want to wait so long only to find that things still do not get better. So, pretty well immediately after I learned about the long wait, I purchased a pulse oximeter that you wear on your finger and which monitors your heart rate and oxygen levels throughout the night. I have been using this for three nights now and the results have been very interesting and quite surprising!
My heart rate stays fairly stable around 43 to 45. My oxygen levels however do get low during the night and at least twice a night they plummet a lot lower. I am wondering now if it could be sleep apnea.
I am thinking my current doctor should see one of these reports. She is only in twice a week though and hard to get appointments with. Do you think it would be acceptable to email the surgery a letter for her and attach one of the reports? Or should I wait ages to get an appointment to see her and then hand her a copy?
I keep changing my mind on this.... the (increasingly) angry part of me says send in the email with the report and tell her I am not happy. I am not however normally someone who likes to complain or make a fuss (although I am definitely thinking I would have fared much better here if I had been an entirely different character!).
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Channeal
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My mum has a severe case of sleep apnea. Her breathing stops around 30 times a night so she wouldn’t be able to manage safely in the night without her CPAP therapy. A sleep study can help rule out sleep apnea.
What are your symptoms that you are experiencing in the mornings when you wake up? Have you noticed whether you wake up suddenly in the night gasping for air? Any brain fog or confusion in the mornings?
I don’t see any harm in emailing your surgery with your findings and telling them how concerned you are stating that it is really affecting your health and whether your doctor can expedite the cardiology appointment.
I have never been aware of gasping for air, although I have often had a vague memory of having woken briefly several times in the night, probably for just a few seconds. I am generally so tired though that I would sleep through anything.
When I eventually wake up properly (usually because I need to go to the loo) I just feel the need to keep really still, with my head and shoulders raised a tiny bit. When I feel a little bit more human, these days I often pick up my tablet and play a game and that seems to help a little. I need to stay awake for at least an hour as if I try to go straight back to sleep I immediately feel unwell again. On days when I am extra tired I sometimes do find myself falling straight back to sleep but then I feel really unwell throughout my sleep.
This feeling of being "unwell" is where I have always come unstuck as I just have not been able to describe it for a doctor. It is just a general feeling of being just not right. Don't we all feel ill sometimes, without having specific symptoms you can put your finger on? I guess the only thing I can really say is that I feel a bit, I don't know, almost shell-shocked. As I mentioned in my post, I have often said it feels as though I have been through something traumatic, a big shock or something. I just have to keep very still until I recover. That really is all I can say!
Can you ask your doctor to refer you for a sleep study whilst you wait on your cardiology appointment? It might be worth ruling out both issues with the heart which your cardiologist will hopefully do anyway, and your respiratory system.
Hi, if this is causing you distress which it sounds like it is, I would book an appointment face to face and take your results. As Tos has said there is no harm in emailing the results. I guess it depends how long for a reply. I do hope you get sorted x
ask for asleep apnea test --i have heart failure and atrial fibrilation and after researcing found that these can be linked to sleep apnea so asked for a test --results were 20 apneas an hour so 120 a night with oxygen levels dropping to 80percent. My oxygen levels dropped to 80 percent with each apnea --i am now on Cpap
Hi Channeal I have recently been diagnosed with severe Heart Failure. Please read my profile. My beats were dropping as low as 29. I called my Gp she said go A and E they did the 24 Halter test which basically showed very mild issue so mild would not need medication. Fast forward 2 months the holter test gave false information basically. It might be worth going a and e to speed the process up.
Also my Sleep Apenia test showed yes but mild but due to heart the put me on Cpap. I don't understand how 5.7 episodes an hour is mild. But like the others said its worth getting investigated
I’m sorry to hear about what you’re going through right now, it sounds traumatic in itself!
I think you would be wise to send an email and maybe keep it neutral (in terms of expressing anger/disappointment with your treatment) at that point but making it clear that your results are greatly concerning you and that you’re worried about the impact of this additional stress for you.
I have mild heart failure (controlled with medication) but I think I’ve experienced something similar to the symptoms you’re trying to describe where for me it’s almost a heavy feeling on my body (particularly my chest) and I can’t move until the feeling passes or I start to feel unwell.
I really have so much empathy for you and I just want to say - keep going, don’t be afraid to advocate for yourself and how you’re feeling matters. If you’re truly concerned, keep pushing until you feel heard.
Wishing you the best of luck and I hope you’ll update us once you get some answers 🤞🏼
My husband has extreme sleep apnea. When tested at the sleep clinic they noted that he stops breathing 60 times an hour , a record for them. But he had no cardiac symptoms or change in heart rate or blood pressure whilst that happened. He has a CPAP machine and has improved somewhat because of it.Of course , what you need to discover is if your generally low heart rate is the cause of your low oxygen or the HR and oxygen levels are being affected by changes in your breathing.
I would suggest printing off a record of a week of these results and go to see the GP again. Point out that you aren't going to be seen by Cardiology for sometime and that you both can't be sure whether the problem is being caused by sleep apnea and changes in your night time breathing and request for them to send you to the Sleep Clinic explaining your low oxygen and heart rate problem. Point out , you would hope that you could be seen by them and assessed before going to the cardiologist so that sleep breathing issues could be ruled out or diagnosed before the Cardiologist makes there choices and so that you could hopefully get some treatment sooner rather than later.
You can ask your GP to refer you for any consultation or therapy that they don't suggest to you themselves if they appear to be suitable. They need to give you a medical reason if they refuse to make the referral, although I'd be highly surprised with your monitor evidence that they wouldn't think a sleep assessment was worthwhile.
Be prepared though you could also be waiting for 6 months+ for a sleep clinic appointment, such is the demand on the system at present.
Please let us know what happens and what results you get as you go along , I'm sure everyone would be interested in seeing how your diagnosis progresses , take care , Bee
Channel, you have had this for many years and now it seems to be coming to a head. The new Dr has referred you to a heart specialist, what more can she do? Being angry with her will almost certainly get you nowhere. I do think that an email to her thanking her for her concern, praise the fact that at last someone is taking notice, and then explain your findings and ask if these might change her initial assessment and perhaps the heart specialist could get a copy, or should you be referred to someone else? (As well). Kindness and gratitude often goes much further than anger, and you always have anger to fall back on if the email gets you nowhere.
I’m sorry to hear what’s going on with you, it sounds horrible and I know from experience, trying to get to the bottom of these things can be very frustrating indeed.
I used to wake in the mornings feeling awful and like I hadn’t slept all night, even though I had, or so I thought. Back then I had paroxysmal AFib and episodes would start at night. I purchased an O2 ring to try and find out why and saw I was getting regular oxygen drops into the low 80s during periods of REM sleep throughout the night and that was triggering the AF episodes. My GP arranged a referral to a sleep clinic for a home sleep study and that found I was getting 10 drops an hour on average. That’s still considered mild, although my ticker certainly didn’t agree! As I had AF I was given a CPAP machine and nighttime AF episodes became a thing of the past. (I then started getting them in the day instead but that’s another story🙄)
I would certainly do what others have said and send a report through to your GP with a request for a referral to a sleep clinic for a home study. If nothing else, it would rule out sleep apnoea, a known cause of heart problems, or get you on therapy if you do have it, before you see the cardiologist. I know it’s all very frustrating when you feel you are not being taken seriously but at least your new doctor is doing so and has referred you to cardiology. As Woodsie says, there’s not much else she can do on that front, really, If it were me, I would gather a couple of weeks worth of data from your ring, to check your results are happening consistently and then email them to her with a polite but firm request for a sleep clinic referral. You can always get the anger out if she dismisses your request but, given the strong link between sleep apnoea and heart problems, I don’t think she will.
I personally would do 1 of 2 things. I'd get someone to take me to A&e whilst I was having one of the incidents. They will probably do some tests. Or I'd check other surgeries in your area for the practice with the best reviews and change. Keep a note of all your readings they may be of use.
There is an excellent group on Facebook, Hope2Sleep Support Group, they are very knowledgable. They have a lot of information about sleep apneoa.If I were you I would write, or email, the surgery with a report, marking it FAO the doctor you want to see. You never know, she might arrange an earlier appointment. Although you must be feeling pretty angry about it try to say things like "I'm so sorry I haven't been able to explain how I feel, that's why I've done this to try to provide clearer information " . Remember, you catch more flies with honey than with vinegar. If they think it might be sleep apneoa they will ask you questions, this is known as the Epworth Sleepiness Score. You can be referred for a sleep study test. Mine was being issued with equipment to wear at night,which records data, and it has to be returned the next day.
It's important to rule this in or out, it can have a real impact on your life.
There seems to be a big variation in areas how quickly you can be seen. Good luck.
I would think it totally ok to send an email or contact the practice manager. However long waits are at surgeries, there is still a duty of care and you should be able to talk to a doctor about your concerns and findings and don't ever be worried about complaining if you feel your health needs attending to. I think we are all to easily fobbed off now though I have to say the surgery I attend is excellent and so well managed. I really hope you can get to see someone who will listen to your genuine concerns and that you get pointed in the right direction. Take care x
I suffer from sleep apnoea and have been referred to a sleep clinic at Worcester. That will be a 12 week wait. To answer your question I think it is reasonable to send a letter or email (I think a letter would be better) with the reports attached and a description of how you have recorded it. I have done things like that before for an arrhythmia issue and they were ok with it. I think it would be counter productive to express any anger at this point, just present the facts.
I hope the previous replies have helped and you get this issue sorted soon. In respect of the Cardiologist appointment have you considered a private appointment? This can usually be arranged locally without a GP referral. The NHS is on its knees and consultants appointments in all areas are typically 40 weeks plus, it’s shameful on the rabble leading the country. I was recently offered an urgent urology appointment in 7 months time! Same for an ENT appointment last year. If you can afford the initial appointment privately you can then be referred back into the NHS for any required follow up. Good luck.
I was recently admitted to hospital after being in A&E. Have had diagnosed AFib for 15 years plus and other heart issues. I was in during high afib episode and had fainted. They kept me in because wanted me to see a cardio before release.
When the cardio saw me and asked me to explain what happened I mentioned I had been very tired and he stopped me and got me to talk about the tiredness and my sleep issues. First time anyone has shown an interest despite me always saying about it to drs. He did a quick Epworth assessment and said that I had a sleep issue that could affect my heart perhaps sleep apnea or a REM disorder and he had put me on list for sleep study.
Having said that my heart rate at night can go as low as yours and they were not concerned about that as in medication it’s not unusual.
Hope you get some help soon. I am surprised that with a slow heart rate you have not had an E.C.G. I suddenly developed the same symptoms was sent for an egg immediately at the hospital and told straight away by a cardiologist that I needed a pacemaker. Brian
Thanks for responding to my message. I had an ECG before my hernia op in early 2019 and that Is when I discovered that the results were abnormal. I had an echo and later on - on the morning of my op - an angiogram. They did not find any major problems though and concluded that the abnormalities arose because of my high BP. More recently, when my doctor referred me to the cardiologist they would only accept the referral if I had another ECG. This was duly carried out, but I have no idea what the results were or if they were worse than in 2019.
I’m sorry for what you are going through, knowing what your issues are, even if bad news, is always better than not knowing.
I’m in complete agreement with the people suggesting to send the email with the oximeter report to your go and if he dismissed you in the past I’d suggest to send it to the attention of the practice manager.
I’ve emailed my gp in the past and been completely ignored and only once I resent the email in copy to the practice manager, my message was acknowledged and something was done about my problem. It is sad having to result to these kind of measures but lately I feel that only the ones who shout are listened to. 😔
Also, while you’re waiting to see the doctor, are you aware of sleeping apps that you can download on your smartphone? Some are excellent! You put it on when you go to sleep, you need to keep your phone near you, and the app will record every event happening while you’re sleeping. I’ve tried one called SleepWatch and it is great, you pay for it but you can get a free trial period, which should be sufficient for you to prove sleep apnea if you feel rubbish every single day.
Please don’t be silent, it is your life that could be potentially in danger, do all you can to be heard and listened to.
I’d wait for a report of one of these apps to send the email so you can send just one email with crashing evidence that something is wrong.
Thank you for responding to my message. As far as the Sleepwatch app is concerned, I think it is an Apple app and I do not have an Apple phone, but an Android one.
As far as I can see, the report I get from my O2 ring is pretty thorough and hopefully it will give my doctor enough information to convince her that there is a big problem during my sleep every night.
I believe that sleeping apps are available on the iPhone store as well as on Google for androids but as you said, hopefully you’ll be able to convince your gp to investigate further your issues with the data available to you already 🤞🏼
The app called Sleep Watch is definitely not available on the Google Play store. I searched for it there and also saw a review of it which confirmed that you cannot get an Android version. Having said that, there are other sleep trackers available for Android which may well be pretty similar.
It doesn't matter anyway as I am at present very happy with the app associated with my O2 ring. Adding another one would probably just confuse me.
My HR go’s low at night, lowest 48 - bradycardia. I’m pretty sure meds exacerbate it. I do not feel right, I get told ‘it’s ok, nothing to worry about’ BUT I DO NOT FEEL RIGHT, how hard is it for these drs to hear me? I don’t feel as bad as yourself. I can wake at 4-5 and not get back to sleep, lot of thoughts don’t help. I know I’m generally fit and from previous monitoring of some years ago I have always had good level of fitness which can mean lower hr’s.
I’ve a top iwatch and apps that record hr etc. I do send reports to my Consultant cardiologist so he sees a picture, I see him privately. The fee is now around £225.
I would DEFINITELY share your records with your GP to back up your thoughts.
Ps I have a
N Omron BP machine that takes BP’s for AF, oxymeter and a Kardia. I have been a Complementary Therapist for 26 yrs and would use the BP meter for patients
We discussed in one of your earlier posts that you needed a medication review because you appear to be overmedicated. Did you ever have that review?
When I'm prescribed more than one drug at the same time I tell the doctor that I will take one of them for a month to check for side effects before starting the second. That way, if I experience unwanted side effects I know which drug is responsible.
You could suggest the reverse procedure to your GP: stop taking one the drugs for a month to see if your problems reduce.
For example, have you ever stopped or changed the statin that you take? Could you try stopping the PPI and aspirin?
Your heart rate is lower than normal, so could you stop the Bisoprolol and see where your heart rate settles?
Thyroid issues commonly cause a wide range of problems. You say that your thyroid levels are frequently checked, but do they test fT3, fT4 and TSH or only TSH? If it's only TSH you should insist on having a full Thyroid test, including thyroid antibodies. TSH in isolation does not provide any direct information about the state of your thyroid, it simply shows what your pituitary gland is asking your thyroid to do. It doesn't show what your thyroid is doing in response to the TSH and that's what you actually need to know.
Hello again Engineer 46 and thank you for your continued interest.
I did mention to my doctor that I had been told by people that I am on rather a lot of tablets and she agreed. I think I even mentioned that I thought I needed a review of my medication. All that really happened though was that she cut the bisoprolol dose in half. She was talking about then reducing it completely, but seemingly then changed her mind and decided to refer me to the cardiologist. We never got as far as talking about the PPI (time is always very short and if I have one complaint about her it is that I always feel a bit rushed).
As far as the aspirin and statin are concerned, the letter from the doctor who did my angiogram back in early 2019 (on the morning of my hernia op) stated that I was to continue with both of these. Not 100% sure about the bisoprolol, but think they wanted me to continue with that too.
It is interesting what you say regarding the thyroid levels. I looked at my records online and as far as I can tell, they have only tested the TSH. I will try to remember to ask for the full tests when I get an opportunity.
Like you, over covid, had difficulty trying to get diagnosis as no 1:1 or phone appointments etc offered, so did a private sleep apnoea test via Hope2Sleep charity…they send you all the equipment, which you return and then you get back a detailed dr.’s report. Mine was mild, so my peace of mind was improved (tho still having post viral problems), and I knew long before getting to see NHS dr. that I’d get no treatment for it. Judging from other waiting lists I am on it is probably even longer to get a sleep apnoea test done in NHS, so going down private route may be of help to you too.
43 to 45bpm during sleep is fairly standard so I wouldent worry about that. There are private clinics that do in home sleep studies for not too much money £200 or less and thats the road I would persue if you can afford it. At least its official and if anything found it will be acted upon swiftly. I would not wait and worry for months for the whim of the NHS on this.
Wow! Thanks to each and every one of you for the amazing response to this post. I will try to gradually respond individually to each message, but am a bit tired at the moment as had a rare outing today. We met our son in a cafe. It is great to get out, but getting from A to B is always an effort and always tires me out.
I decided late last night to get an email off to my doctor's. It was short and I was very nice and didn't complain - although I did stress that this has been going on for a very long time. I was never really intending to complain to be honest, as I believe in always being polite and understanding. In any case, the only person I really feel truly angry with is the doctor I saw last year whose whole attitude was arrogant. She came across as thinking that she is the only one who knows anything and once she has spoken her view is the only one!
I wanted to get the email sent last night as the only days the doctor I am currently seeing is in the surgery I go to are Tuesday and Wednesday, so I wanted my email to be there waiting for them when they opened this morning. I received an acknowledgement from them around midday saying they had passed my email onto the doctor, so am hoping I will hear from her some time soon.
One thing I have noted is the fact that my oxygen levels do start to go down a bit as soon as I lie down. This reminds me that in in the 2 or 3 months leading up to January 2019 when I had my hernia operation, I ended up in A&E a couple of times when it was causing me big problems. On one occasion, the nurse was surprised that my oxygen levels were low, but they returned to normal as soon as I sat up. Later on, in the two or three days following my operation, the levels were again a bit low and I told the nurse about the problems I had experienced in A&E and that we had concluded that it was a postural issue. Subsequently, this nurse told me that she had been watching me when I hobbled off to the toilet and that it did not appear to her that I was having a problem with oxygen levels, so she concurred that it was indeed a postural problem.
(As far as the problem being detected now with my oxygen levels dropping really very low is concerned, I do not believe this was a problem for me while in hospital after my hernia repair for the simple reason that I am a very light sleeper and with all the noise constantly going on, I just did not ever sleep for long enough for the lowest dips to occur!)
My pulse rate drops low and my oxygen too through the night. I feel terrible when l wake up in the morning , sort of sick and faint and a feeling of not being able to breathe properly. When l get properly woken up and moving, l feel a bit better. I hope you get seen soon to find out the cause of your trouble.
"I am not however normally someone who likes to complain or make a fuss (although I am definitely thinking I would have fared much better here if I had been an entirely different character!)'. Maybe you SHOULD be that person! I would indeed email the GP-you are lucky you have an email address to contact! If you can print off several night's/days of results and say you have been doing this because you are concerned, she can hardly ignore you! Good luck!
I read too that you are on several meds-these can often cause issues in themselves-i take a cocktail too, and the trouble is, each specialist only looks at their 'bit' of the body! No-one looks at the person as a whole, so meds for one issue can have knockoff effects on another!
The receptionist from my doctor's surgery phoned me. In response to my email attaching the report from my O2 ring, they are offering me a telephone conversation with my doctor on the 29th November. She could only offer me a morning appointment - although as I don't get up very early because of my bad nights, I could well be asleep!
Well, you may well need to have an alarm and have a sleep later. This is how it is. I prefer face to face because you get a definite appointment rather than telephone because you’ve no idea when you’ll be called.
You make it sound easy! For one thing, this is a household with many big stresses! Also I feel so bad when I wake up in the morning that it takes me ages to recover and therefore I would not be at my best mentally, however early the alarm was set for.
I agree with you that I prefer face to face. I have never liked talking on the phone tbh because you cannot see the other person's facial expressions. I am tempted to phone and ask to switch to face to face even if it means having to wait a bit longer. Maybe I should insist I do it my way for a change!😊 My only hesitation is because of all the winter bugs that are around, as my husband's myeloma means that he is immunocompromised and we usually avoid crowded waiting rooms as much as possible.
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