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Sleep Apnoea Forum Bringing Help + Support to the Patient

This is my first post and I am very grateful to have found this forum.

My husband was tested for sleep apnoea  using a home test on the NHS in Dec 17. At the interview afterwards they told him he had sleep  apnoea  but not bad enough to be given a CPAP. They offered no other treatment. Since then he continues to have disrupted sleep and in fact sleeps mostly in a chair downstairs as this is better for quality sleep. I would like to get a private test for him as he is getting more tired and forgetful over time. 

There seem to be a variety of tests. One test you can use for 2 nights. Another has something called PAT (peripheral arterial tone). Is there anything to choose between these methods?

Thanks Amanda 

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Welcome Amanda and sorry to hear of your husband's struggles.  It sounds like he either went to a clinic that don't treat people with an AHI of less than 15 from the sleep study results, or he could have had a pulse oximetry sleep 'study' which only measured it oxygen levels and therefore very often misses a diagnosis of sleep apnoea as not everyone has oxygen desaturations with every apnoea or hypopnea.

If your husband did show up mild sleep apnoea (AHI below 15) and is symptomatic, then he should be treated, so the first thing to try is to contact the sleep clinic to ask if he can have a CPAP trial due to his continuous struggles with the 'mild' sleep apnoea.  Having said that, there are still a lot of sleep clinics not being able to issue CPAP to new patients at the moment due to COVID and there are huge backlogs at the clinics that are operating.  It would be worth a phone call though to see what they say.

At the charity (who run this forum) we use the polygraphy sleep study equipment https://www.hope2sleep.co.uk/sleep-apnoea-home-screening-service.html which is what most of the hospitals use (to check the breathing as well as the oxygen levels).  The PAT is ok but we have had a few people not get diagnosed with that method.

Try to get in touch with the hospital and if you get nowhere then email me at support@hope2sleep.co.uk and we'll be able to offer more advice and support.

The best test is one you need help to get all connected up to, it can be done at home but is very expensive to hire the machine.  Best to do a study over two nights, though it costs to do this.  Kath I think does sleep studies, but then you already know he have Sleep Apnoea.  The only way is to go private or pester your doctor to say it is very badly affecting your husbands health.  I would go see your GP again and have a serious word with him and explain just how bad it is getting now.

My doctors first words to was "No body has died of Sleep Apnoea!"

This set the wife off and she went into full attack mode is such a way he had to do something!

She was nice about it but was so direct, she had done her homework and quoted cases where people had thought to have died driving.  Cases where people fell asleep at their desks every day and cases where people could function well enough to do their job properly!

The next thing the doctor said was "I didn't mean that we shouldn't do something about it, I just meant on one had died of it directly"  Nice get out, but she was having none of it.

So I had to drive all the way to Edinburgh via Aberdeen to get tested, so began loads of running up and down to Edinburgh from 25 miles west of Aberdeen.  This went on for months, but we got it sorted in the end.

If your doctor will do nothing and you can't get treatment from NHS than only way is private, but a retest might give him higher numbers.  Good luck in getting that done.  You could get a private test and bring the results to your GP, it might not mean a lot to him/her, but if you get a letter of a Recommended to treat this patient" can they ignore it?

Thanks Kath for your reply. My husband has agreed to contact the clinic which we hope to do on Monday. Everything takes a long time with us as we both have health issues and I have brain fog and memory problems due to thyroid issues. Thanks again for your support.

Kath Hope said:

Welcome Amanda and sorry to hear of your husband's struggles.  It sounds like he either went to a clinic that don't treat people with an AHI of less than 15 from the sleep study results, or he could have had a pulse oximetry sleep 'study' which only measured it oxygen levels and therefore very often misses a diagnosis of sleep apnoea as not everyone has oxygen desaturations with every apnoea or hypopnea.

If your husband did show up mild sleep apnoea (AHI below 15) and is symptomatic, then he should be treated, so the first thing to try is to contact the sleep clinic to ask if he can have a CPAP trial due to his continuous struggles with the 'mild' sleep apnoea.  Having said that, there are still a lot of sleep clinics not being able to issue CPAP to new patients at the moment due to COVID and there are huge backlogs at the clinics that are operating.  It would be worth a phone call though to see what they say.

At the charity (who run this forum) we use the polygraphy sleep study equipment https://www.hope2sleep.co.uk/sleep-apnoea-home-screening-service.html which is what most of the hospitals use (to check the breathing as well as the oxygen levels).  The PAT is ok but we have had a few people not get diagnosed with that method.

Try to get in touch with the hospital and if you get nowhere then email me at support@hope2sleep.co.uk and we'll be able to offer more advice and support.

Hi sleep to snore, thank you for your support. It really encouraging to hear of other people's  battles to get treatment. My  husband was offered the overnight test but we chose the home one which looking back might have been a mistake. Your wife sounds like a great person to have in your corner. 

Sleep2snore said:

The best test is one you need help to get all connected up to, it can be done at home but is very expensive to hire the machine.  Best to do a study over two nights, though it costs to do this.  Kath I think does sleep studies, but then you already know he have Sleep Apnoea.  The only way is to go private or pester your doctor to say it is very badly affecting your husbands health.  I would go see your GP again and have a serious word with him and explain just how bad it is getting now.

My doctors first words to was "No body has died of Sleep Apnoea!"

This set the wife off and she went into full attack mode is such a way he had to do something!

She was nice about it but was so direct, she had done her homework and quoted cases where people had thought to have died driving.  Cases where people fell asleep at their desks every day and cases where people could function well enough to do their job properly!

The next thing the doctor said was "I didn't mean that we shouldn't do something about it, I just meant on one had died of it directly"  Nice get out, but she was having none of it.

So I had to drive all the way to Edinburgh via Aberdeen to get tested, so began loads of running up and down to Edinburgh from 25 miles west of Aberdeen.  This went on for months, but we got it sorted in the end.

If your doctor will do nothing and you can't get treatment from NHS than only way is private, but a retest might give him higher numbers.  Good luck in getting that done.  You could get a private test and bring the results to your GP, it might not mean a lot to him/her, but if you get a letter of a Recommended to treat this patient" can they ignore it?

You're welcome Amanda and ask the sleep clinic what your husband's AHI was on the sleep study.  If people are symptomatic for sleep apnoea, even in the mild criteria which is an AHI of 5-15 then they should be given a CPAP trial.

Regarding yourself with your thyroid brain fog....it's worth checking in case you also suffer from sleep apnoea as the link with thyroid and sleep apnoea is huge.  There's lots of articles about this and here's one of them https://www.alaskasleep.com/blog/the-thyroid-sleep-connectiohttps://www.alaskasleep.com/blog/the-thyroid-sleep-connection

Go to our website to this link to check out for signs and symptoms https://www.hope2sleep.co.uk/sleep-apnoea-information.html  It's certainly not uncommon for husband and wife to both be sufferers (my husband is as well as me).

Amanda S said:

Thanks Kath for your reply. My husband has agreed to contact the clinic which we hope to do on Monday. Everything takes a long time with us as we both have health issues and I have brain fog and memory problems due to thyroid issues. Thanks again for your support.

Kath Hope said:

Welcome Amanda and sorry to hear of your husband's struggles.  It sounds like he either went to a clinic that don't treat people with an AHI of less than 15 from the sleep study results, or he could have had a pulse oximetry sleep 'study' which only measured it oxygen levels and therefore very often misses a diagnosis of sleep apnoea as not everyone has oxygen desaturations with every apnoea or hypopnea.

If your husband did show up mild sleep apnoea (AHI below 15) and is symptomatic, then he should be treated, so the first thing to try is to contact the sleep clinic to ask if he can have a CPAP trial due to his continuous struggles with the 'mild' sleep apnoea.  Having said that, there are still a lot of sleep clinics not being able to issue CPAP to new patients at the moment due to COVID and there are huge backlogs at the clinics that are operating.  It would be worth a phone call though to see what they say.

At the charity (who run this forum) we use the polygraphy sleep study equipment https://www.hope2sleep.co.uk/sleep-apnoea-home-screening-service.html which is what most of the hospitals use (to check the breathing as well as the oxygen levels).  The PAT is ok but we have had a few people not get diagnosed with that method.

Try to get in touch with the hospital and if you get nowhere then email me at support@hope2sleep.co.uk and we'll be able to offer more advice and support.

He really needs the attitude that if he is given a machine or a trial "This is going to work for came hell or high water!"  though it is not easy getting started or used to a CPAP machine.  Sometimes you just need to keep pushing.  It is not so bad now as it used to be, but in some areas you still have to push to get help.  You need to go along and explain just how bad things are and how much worse things are getting.  If he has Sleep Apnoea it will only get worse, loosing weight will help, but it is no guarantee that it will.  I lost weight and it got worse!  Make sense of that, didn't make sense to me, the sleep doctor, sleep nurse or anyone else!  But I am odd lol.

Hi Kath, not used to the way the posting works on this forum . It feels as if I am collecting to much text. Should I start new topic? Have rung the clinic in Oxford and they said D has to be referred through the GP. I have found his Diagnosis from Dec 17 and they say "his symptoms relate to insomnia and not to  these very infrequent episodes of apnoea". They do not give an AHI score but say" this extent of sleep apnoea would be seen in more than a quarter of men of his age without any consequence". I should also add that I realised after the apnoea test that D is a mouth breather and rarely breathes through his nose awake or asleep.

Kath Hope said:

You're welcome Amanda and ask the sleep clinic what your husband's AHI was on the sleep study.  If people are symptomatic for sleep apnoea, even in the mild criteria which is an AHI of 5-15 then they should be given a CPAP trial.

Regarding yourself with your thyroid brain fog....it's worth checking in case you also suffer from sleep apnoea as the link with thyroid and sleep apnoea is huge.  There's lots of articles about this and here's one of them https://www.alaskasleep.com/blog/the-thyroid-sleep-connectiohttps://www.alaskasleep.com/blog/the-thyroid-sleep-connection

Go to our website to this link to check out for signs and symptoms https://www.hope2sleep.co.uk/sleep-apnoea-information.html  It's certainly not uncommon for husband and wife to both be sufferers (my husband is as well as me).

Amanda S said:

Thanks Kath for your reply. My husband has agreed to contact the clinic which we hope to do on Monday. Everything takes a long time with us as we both have health issues and I have brain fog and memory problems due to thyroid issues. Thanks again for your support.

Kath Hope said:

Welcome Amanda and sorry to hear of your husband's struggles.  It sounds like he either went to a clinic that don't treat people with an AHI of less than 15 from the sleep study results, or he could have had a pulse oximetry sleep 'study' which only measured it oxygen levels and therefore very often misses a diagnosis of sleep apnoea as not everyone has oxygen desaturations with every apnoea or hypopnea.

If your husband did show up mild sleep apnoea (AHI below 15) and is symptomatic, then he should be treated, so the first thing to try is to contact the sleep clinic to ask if he can have a CPAP trial due to his continuous struggles with the 'mild' sleep apnoea.  Having said that, there are still a lot of sleep clinics not being able to issue CPAP to new patients at the moment due to COVID and there are huge backlogs at the clinics that are operating.  It would be worth a phone call though to see what they say.

At the charity (who run this forum) we use the polygraphy sleep study equipment https://www.hope2sleep.co.uk/sleep-apnoea-home-screening-service.html which is what most of the hospitals use (to check the breathing as well as the oxygen levels).  The PAT is ok but we have had a few people not get diagnosed with that method.

Try to get in touch with the hospital and if you get nowhere then email me at support@hope2sleep.co.uk and we'll be able to offer more advice and support.

Hi Amanda

You don't need to start a new discussion as we're following this one fine :)  It would be worth getting your GP to refer you to Oxford as the waiting list will no doubt be long due to this pandemic so at least he'll be in the queue.  In the meantime, you could always do our sleep screening which would give you evidence this does need further investigation https://www.hope2sleep.co.uk/sleep-apnoea-home-screening-service.html but we also have a backlog and our waiting list is around 2 months we think.

I suspect from what you say that the previous sleep study showed up an AHI of over 5 but perhaps not over 15  (in the mild range) due to their comment "this extent of sleep apnoea would be seen in more than a quarter of men of his age without any consequence"  However, your hubby is having consequences of this or you wouldn't be here trying to get further help!  I would definitely keep pushing until your hubby has had a repeat sleep study, and in actual fact 70% of people with insomnia have some form of sleep disordered breathing (usually sleep apnoea).  



Amanda S said:

Hi Kath, not used to the way the posting works on this forum . It feels as if I am collecting to much text. Should I start new topic? Have rung the clinic in Oxford and they said D has to be referred through the GP. I have found his Diagnosis from Dec 17 and they say "his symptoms relate to insomnia and not to  these very infrequent episodes of apnoea". They do not give an AHI score but say" this extent of sleep apnoea would be seen in more than a quarter of men of his age without any consequence". I should also add that I realised after the apnoea test that D is a mouth breather and rarely breathes through his nose awake or asleep.

Kath Hope said:

You're welcome Amanda and ask the sleep clinic what your husband's AHI was on the sleep study.  If people are symptomatic for sleep apnoea, even in the mild criteria which is an AHI of 5-15 then they should be given a CPAP trial.

Regarding yourself with your thyroid brain fog....it's worth checking in case you also suffer from sleep apnoea as the link with thyroid and sleep apnoea is huge.  There's lots of articles about this and here's one of them https://www.alaskasleep.com/blog/the-thyroid-sleep-connectiohttps://www.alaskasleep.com/blog/the-thyroid-sleep-connection

Go to our website to this link to check out for signs and symptoms https://www.hope2sleep.co.uk/sleep-apnoea-information.html  It's certainly not uncommon for husband and wife to both be sufferers (my husband is as well as me).

Amanda S said:

Thanks Kath for your reply. My husband has agreed to contact the clinic which we hope to do on Monday. Everything takes a long time with us as we both have health issues and I have brain fog and memory problems due to thyroid issues. Thanks again for your support.

Kath Hope said:

Welcome Amanda and sorry to hear of your husband's struggles.  It sounds like he either went to a clinic that don't treat people with an AHI of less than 15 from the sleep study results, or he could have had a pulse oximetry sleep 'study' which only measured it oxygen levels and therefore very often misses a diagnosis of sleep apnoea as not everyone has oxygen desaturations with every apnoea or hypopnea.

If your husband did show up mild sleep apnoea (AHI below 15) and is symptomatic, then he should be treated, so the first thing to try is to contact the sleep clinic to ask if he can have a CPAP trial due to his continuous struggles with the 'mild' sleep apnoea.  Having said that, there are still a lot of sleep clinics not being able to issue CPAP to new patients at the moment due to COVID and there are huge backlogs at the clinics that are operating.  It would be worth a phone call though to see what they say.

At the charity (who run this forum) we use the polygraphy sleep study equipment https://www.hope2sleep.co.uk/sleep-apnoea-home-screening-service.html which is what most of the hospitals use (to check the breathing as well as the oxygen levels).  The PAT is ok but we have had a few people not get diagnosed with that method.

Try to get in touch with the hospital and if you get nowhere then email me at support@hope2sleep.co.uk and we'll be able to offer more advice and support.

Hi Kath,

Thanks for the advice. I now have the go ahead from my husband to do another test. I think it will take too long via the doctors and would like to do a test straight away. I am thinking of going for the sleep disorder clinic as they do pulse oximetry, respiratory effort, plethysmography, actigraphy and body position. You also use the equipment for  2 nights.  Do you think this would be reasonable?

Amanda 

Yes, that would be find Amanda and I know Joseph who runs the clinic and am sure he'll be very helpful too.

Amanda S said:

Hi Kath,

Thanks for the advice. I now have the go ahead from my husband to do another test. I think it will take too long via the doctors and would like to do a test straight away. I am thinking of going for the sleep disorder clinic as they do pulse oximetry, respiratory effort, plethysmography, actigraphy and body position. You also use the equipment for  2 nights.  Do you think this would be reasonable?

Amanda 

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