GP telling me it’s menopause when it’s sleep apnoea

[Polkadotdash]

I need help as I’m really down a hole with this.
Despite having no symptoms of menopause and regular periods my GP is ignoring my diagnosis of sleep apnoea and insisting that the menopause is the cause of my exhaustion.
I’m on a waiting list for a CPAP machine but it’s likely to be a year before I get one. I’m currently going through a really bad phase of nightmares and choking at night. I saw my GP this morning to ask what I can do. She diagnosed me with menopause (again) and said it was hormones and that I should try to tackle the insomnia. No matter what I said she wasn’t listening. I feel like I’ve been going around this loop for years and years and keep getting told it’s menopause. I thought that the sleep study results would change this but no. I stop breathing on average 52 times an hour during REM sleep. I have no memory of this, I don’t fully wake but obviously I’m not rested.
Im so exhausted. I can’t keep up with normal life and I fall asleep two or three times during the day. I’ve been on iron tablets, anti depressants and b12 injections for years to try to combat my exhaustion but obviously it’s not going to be fixed if I can’t get proper sleep. What can I do to get through to them that this isn’t the menopause, it’s something else?

I didn't know that @simbobs (waves). I know that being overweight is the biggest risk factor, and it was pretty obvious in the waiting room at the sleep clinic when I accompanied DH. He was the only skinny person there, and everyone else was hugely overweight.

@Polkadotdash 52 non breathing episodes an hour is a dangerously high number, and you shouldn't be driving if this is happening. DH had 50 episodes an hour, and the consultant told him it was the highest he had seen.

I would try your utmost to get hold of a CPAP machine by any means you can.

I am going through sleep studies atm. I wouldn't be happy that the GP isn't acknowledging your diagnosis.

It's fair enough for her to look at other things which could be causing issues alongside the sleep apnoea but she shouldn't be dismissing the diagnosis itself.

I didn't know CPAP machines can be rented but it sounds like that would be worth exploring for you whilst you wait. I'm appalled that you are having to wait so long for a CPAP machine after diagnosis, especially with your test results.

Can't you just see a different GP for another opinion?

Dear @Polkadotdash I do hope you can get a full refund from your medical degree!
ps. For what’s it’s worth, my ‘sleep apnoea/menopause’ was diabetes.

The same diabetes that my adult son, my mother, her siblings, my grandmother and her siblings all suffered from, but I guess a nice ‘daily Mail’ style symptom is so much better than actual facts.

I’m confused. You say your GP is ignoring your diagnosis and yet they must have thought sleep apnea was on the cards for them to refer you to the sleep clinic. You’re now on a wait list for a device to help you with the sleep disorder. So I’m not sure why you’ve returned to your GP. What are you hoping for them to do going forward? If you are in your mid 40s, you are most likely in perimenopause. Some of the symptoms you’re describing are symptoms of perimenopause. What do you think the problem is, and how would you like your GP to manage this?

You've been struggling with this for ages and didn't think to Google about CPAP machines 🤦‍♀️ come on OP, stop hassling your GP and see what you can do privately if you've got the resource. If you're falling asleep several times during the day you need to be proactive. The NHS is generally shit these days. Scrape funds together if you have to and get some private resolutions.

Confused what you expect the GP to do about it? If you’ve had the sleep study you’ve presumably already been referred to secondary care (by your GP!). They are the people who can treat you. The GP can’t give you a CPAP machine and they can’t hurry your wait time up. You’re just wasting an appointment really if all you want to do is talk to them about something they’ve already referred you for and can’t treat. Sounds like you need to look into renting a machine privately. The hospital outpatient clinic will also sometimes have short-notice cancellations if you are lucky and ring at the right time, but it is getting increasingly hard to get through to them.

I’ve spent nearly a decade going to GPs about this problem. I go to a group practice so I never see the same GP each time. In May last year I managed to persuade one of Gps to refer me to the sleep clinic after she had tested my hormone levels to prove it wasn’t menopause. When they came back fine, she referred me. It took until Feb this year to get an overnight sleep study appointment. The results of that were posted to me in April. I was then contacted by the sleep clinic to say they would put me on the waiting list for a CPAP machine. I’m really not coping with the exhaustion so I went to see yet another different Gp at my practice today. She wasn’t interested in my sleep disorder diagnosis and kept telling me my problems are due to the menopause. Of which there is no evidence. I want to get through to them that I cannot hang on for another year in this state as I’m on my knees but all they want to talk to me about is menopause. It’s a bit like turning up with your arm hanging off and then saying ‘well, you know I think you should take some antihistamines, as it is hay fever season’. I’m asking what can I do to get through to them that I need help and editing a year isn’t an option.

I didn’t even know a CPAP machine was right for me until last month, let alone start googling to see what the price of one was. And given that neither the sleep clinic nor the Gp suggested it might be possible to rent one, this wasn’t in my radar until someone kindly mentioned it today. Even then you still need to know what type of machine meets your needs. It’s not like nipping to Boots and buying a plaster. But anyway

I'm all for more awareness of menopause but this thing about blaming everything on the menopause or peri menopause is worrying.

It used to be thought that women going to GP with classic menopause symptoms were fobbed off with diagnoses of depression etc.
It seems the pendulum has swung the other way now and I wonder what serious conditions might be missed as "you are aged 40 to 60 therefore it must be menopause"

Totally agree.

Exactly this. This is where I’m stuck. I cannot break through this wall of any ailment is the menopause.

I’m sorry it’s a years wait. That is shot. It sounds like you feel that no one is taking your problems seriously which must be so exhausting. However The GP presumably did listen to you about your sleep apnoea though and referred you for the sleep study? That is the end of their role. They don’t have any part in the issuing of CPAP machines. Maybe they are offering to treat the menopause because that is something they can do?

GPs getting the blame for hospitals being shit is a great annoyance of mine. A years wait is not acceptable but that’s got nothing to do with your GP. They probably agree with you that it’s not acceptable. Complain to the hospital via PALS. All a complaint to the GP will do is take up a GP appointment and demoralise the GP. After they have figured out that you are actually annoyed (very reasonably) about the wait for CPAP is to write back to you telling you to contact the hospital. They may offer to forward your complaint to PALS at the hospital- the exact same PALS you can complain to yourself. It will have no more weight as a complaint coming from your GP. The GP has no way beyond what you do to contact the hospital - they call the main phone number and ask to speak to the secretary of the consultant you are under and pass on a message -you can do this yourself (you are likely to be on hold for ages - complain also about this (which is why GPs try not to do this - if I call the hospital for a patient and am on hold for 60mins then that’s six patients appointments I haven’t offered) . You are right your care isn’t acceptable but the truth is to me that the GP is getting the blame here simply because they are actually MORE helpful than the hospital - it’s easier to get hold of the GP to complain about the hospital than get hold of the hospital itself and tell them their service is not fit for purpose

I have had a CPAP machine for about five years and it's a life changer. I belong to this FaceBook Group which is worth joining for lots of information:
https://www.facebook.com/groups/167904203589068

....or this one (there are several)
https://www.facebook.com/groups/cpapforbeginners

Thank you. I will take a look.

First change your Doctor. She's fucking ridiculous.

There really shouldn't be that long a wait for CPAP. We certainly didn't wait that long when DH first got his.

The difference was amazing btw. He went from constantly exhausted to having much more energy.

Can you try to do some phone pestering to get through the sleep clinic and get the name of someone there that could help? DH mainly deals with them, and his GP is only aware he has one.

Do persit, but change Doctors. I couldn't continue to see a Dr who can so blantely ignore a perfectly reason request to discuss something and fob me off with something else.

The GP won’t know anything about where to get a private CPAP machine from or what is best for you either.

when you are referred to a specialist it’s because the GP feels you need input beyond their knowledge. You have noticed issues consistent with sleep aponea, the GP has agreed that these are sleep apnoea sounding symptoms and knows for that you need a specialist assessment and maybe specialist treatment. That is the limit of a standard GPs involvement- anything else would be beyond their competence and they shouldn’t be doing it! They’re not generally trained or indemnified for specialist services.

They have referred to the sleep apnoea service who have carried out a specialist assessment (the sleep study) and made a diagnosis of Sleep apnoea. They have recommend a specialist treatment - CPAP. The hospital need to sort it.

I fully agree you’re getting shit care here. But it’s not the GP who is providing it. Get on to the sleep clinic and tell them you need help. If they are obstructive complain to the HOSPITAL.

I wasn’t wasting the GPS time or blaming them. I went to them with a reasonable request of how can I manage my exhaustion whilst I’m waiting? Are there any other routes to getting a CPAP? Or is there any short term meds I. Can take just to get me through.? My questions were along those lines. I’m concerned that I’m going to have some kind of psychotic breakdown if I’m trying to keep going without proper REM sleep for much longer.
But she defaulted to ‘how old are you? This is probably menopause.’ She actually even said ‘well it must be something else as other people cope with sleep apnea without a CPAP.’
which I suppose it better than what another GP said to me once when I said I often fall asleep two or three times during the day ‘well you have to get out of your lazy habits’

@Qazwsxefv You aren't wrong, but none of that stopped her GP from advisng her of that, rather than just telling her it's the menopause.

How about answering her question, even if it's just, sorry nothing I can do, you need to pester the sleep clinic.

There are lifestyle measures you can take in the interim (especially if you’re looking at a year for a machine).
And don’t forget to inform the DVLA

You went asking if there is anything else that can help while you wait for CPAP. She said maybe treating the menopause would help. Maybe it will. Maybe it won’t. It sounds like you feel she didn’t acknowledge the sleep aponea diagnosis - had she received the clinics letter yet? These can take months. Do you have electronic access to your notes? You can check the letter from the sleep clinic has arrived and that the diagnosis of sleep aponea has been added to your notes. If you were my patient I would have said something like:

”I see you have sleep aponea, you’re waiting for CPAP, clearly that’s making your sleep terrible. Please call the hospital and let them know how unbearable things are for you so they can advise you on what to do. If they are unhelpful please complain. The menopause can worsen sleep aponea and make sleep worse on its own - shall we try treating that - it might help, but the key is going to be getting the hospital to sort your CPAP”

It is a reasonable question as to what you should do to cope while you wait for CPAP but it’s a question for the sleep clinic. Ask them what on Earth they want you to do while you wait and what else they can recommend - there the sleep aponea specialists. Let them know it’s not acceptable for you to go on like this. The GP cannot treat your sleep aponea. If GPs had a pill to treat sleep aponea they wouldn’t have needed to send you to a sleep clinic.

so many GPs appointments are taken up by patients already under specialist care about their specialist problem. The GP a can do nothing.

Thanks Qazwsxefv

but I think you misunderstand. Why would I be looking to get menopause treatment WHEN I’M NOT MENOPAUSAL?

maybe I should have asked for some prostate cancer treatment and a cast on my unbroken leg whilst I was there as well. You know so that I didn’t waste their time.

What are they? I don’t smoke or drink, I’m not overweight, I’ve tried every type of pillow under the sun. Is there anything else?

Hi OP! Saw someone telling you not to bother your GP and, to be frank, they are a bloody idiot as this condition can be life threatening. You deserve to receive treatment so I’m so sorry you’re having to wait. To my understanding, the wait for a CPAP is likely so long at the moment because Philips did a worldwide recall of their Dreamstation machine. I got my first machine within days of being diagnosed in August 2020. My AHI was 59 and they were keen to get me on one ASAP so I would imagine they should be similarly concerned with an AHI of 52! However, when the recall happened it caused huge workloads and issues for sleep clinics everywhere, and put additional strain on other brands who saw a huge increase in demand for their machines too. With regards to buying/renting one, this is of course possible however it may be difficult for you to use it well when you don’t know your prescribed air pressure. Saying that, I’m sure any pressure is better than none! You are doing the right thing in chasing things up so keep at it - I promise that once you get your machine and get your mask and pressure right you will see a huge positive change! One last thing: I was advised not to inform the DVLA until they’d confirmed treatment was working so just make sure you follow the sleep clinic’s advice in that regard.