Hypothyroid / sleep apnea

[CapnM]

HI all, been a user of this excellent resource for a few years and wanted to share my journey and recent success for others to review in future.

I was diagnosed hypothyroid 5 years ago and had immediate success with small dose of levo which lifted my brain fog, fatigue and made me feel whole again. However I started to wobble over time, believing it was my dosage I started to trial higher / lower doses, staying on brand, taking private tests, taking vitamins etc.

Whilst I had occasional myopathy which is thyroid related I had also periods of high physical fatigue, headaches and brain tiredness (not quite fog but similar) in which changing dose or stopping levo altogether seemed to remediate.

After a quite horrendous Q1/23 I remember mentioning to my original very brilliant GP who was a thyroid specialist that I thought I might have sleep apnoea and could it be causing thyroid issues, she said no likely the other way round your thyroid problems could be causing / exacerbating sleep apnoea.

In May I took a private sleep test and found I had severe sleep apnea (60 AHI per hour) so bought the CPAP/APAP machine and started therapy, the results were instant and felt much better. A month in on therapy the outcome is staggering – I have regained 10 years of decline that I though was part of growing just getting old but most importantly I have solved the riddle of thyroid management too.

I say solved…. I am not a professional…I have no evidence that my hypothyroidism / hormone replacement was exacerbating my sleep apnoea – there is limited study in this area and its not very substantive – but its probable that combination of older age and thyroid escalated things. I think its possible there is a link between the myopathy and OSA sleep apnoea as its related to muscles around the throat but again its a just theory.

Sad to say that I am still haven’t heard anything on my NHS sleep clinic referral (we all know that tune) and glad I had resources to go private as I was staring into the abyss by end March. Also the learning, patient empowerment and comfort I have got on sleep apnoea from you tube is phenomenal (site mentioned in reply below).

[SlowDragon Administrator]

Sleep apnea is more likely with hypothyroidism

palomahealth.com/learn/slee...

soundsleepmedical.com/blog/...

[CapnM in reply to SlowDragon]

thanks, i saw articles like these on my journey but they are all quite light content and do not add much to the topic. I can plug pretty much any two medical terms into google and find someone who explores a link and I spent some considerable hours reviewing many. There seems to be a low number of of actual studies and patient experiences on the correlation of these two which is why I wanted to write this.

[minus in reply to CapnM]

Wow love your post. I paid for private sleep study with intus Healthcare, and mine was borderline and it coincided with my thyroid going back high tsh 7. I've been hypothyroid 10 years now and when I was first diagnosed I was tsh 8 with antibodies high, and my sleep study then was 18 ahi episodes an hour moderate diagnosed. Now I'm heavier than I was then, and I'm 100kg I'm ashamed to report. Heavier than when I was pregnant 18 years ago. I havd struggled to lose any weight, took up exercise, sought dietician advice suggested by gp. My face is puffy looking and I have double chin, my hair is so dry and frizzy. I've been like this for all these years even when my tsh was deemed great at tsh 1.6 or 2.3 tsh. My libido has never returned even with HRT for perimenopause. So I have pushed now for cpap trial as that was the only way I could get my tsh under control and actually lose a couple of stone back when I was first on it. Stupid ly I stopped the cpap after I lost weight 10 years ago, as it was noted my ahi was within normal range. So yes I'm in agreement the cpap helps with the thyroid medication being absorbed, I was also taking selenium, b12, vit d, vit c, etc all the vits your recommend to take on here.

[CapnM in reply to minus]

Have a look at this you tube short by Vik Veers, he is an ENT consultant for Royal Hospotal London. No need to feel ashamed, it is almost impossible to lose weight if you have sleep apnea if your body has reacted in the way he describes in this video. There is a longer video where he explains more.

youtube.com/shorts/mmgRPFrySFM

3 months in I feel like I have had a total body transplant, beyond the obvious sleep benefits by body has changed shape, my face has got tighter, my high blood pressure is down, my energy and ability to exrcise has vastly improved. I feel like I am 30 again.

Once you are on CPAP it is usually for life, losing weight can help reduce the pressure you need on your machine but its rare to come off it especially if you have gone to moderate to severe levels and aged somewhat. good luck with renewed therapy.

[minus in reply to CapnM]

Thanks I will look at this.

[Lynneypin]

I didn’t realise you could take a private sleep test! That’s so interesting. Thanks for sharing.

[CapnM in reply to Lynneypin]

The companies that sell CPAP machines in UK will send you a what is called a PAT test watch, you wear it overnight and it records your beathing, oxygen desturations amongst others. I got a very detailed report but the conculsion was clear. You could just use the test to share with your GP but I chose to move forward and buy the kit too.

What was interesting is that it records your sleep position against the data so I could see my aponeas were halved when side sleeping to my left (as opposed to my right) and I used this to have better sleep whilst waited for the machine, it seems a well document phenomena something to do with gravity and internal body make up (cant remember exactly).

Once you have a report demonstrating sleep aponea the company can to sell you the machine, thats not for everyone, aside from the high expense (about £1k for test, machine and gear) some need detailed guidance but I used you tube to learn everthing i need to about managing my therapy.

[SlowDragon Administrator in reply to CapnM]

Thanks for the reminder….my husband due to get one of these PAT watch tests just before pandemic ……..I shall put that back at top of “to do” list

[arTistapple]

I, under great duress, was sent for the sleep apnoea test by my GP. I am afraid I pooh poohed it and the results incensed me. I was soooo against it. GlowCoach gave me a bit of a talking to on the forum ….. Upshot is I finally got around to using the CPAP machine properly (another story) and without changing my meds, over about the last four months, I have been using the machine and I too feel much improved. I discussed this with my CPAP doctor and guess what no light behind the eyes re: hypothyroidism being in anyway connected. My supplements hit the buffers too during this time and I have recently got back into the routine and I sense an additional improvement there too. I now change only one thing at a time so I know what’s helping after making a dogs dinner with my meds around November last year whilst in a big hurry to get well.

I wake (still early) relaxed (at no time in countless years has that happened) and without experiencing the feelings of ‘doom’, which also seem to be a fairly common hypothyroid symptom.

I am working towards taking on board adrenal stuff now and will test bloods again before attempting (in my case) T3 again.

[mazza999]

I was pleased to see your post CapnM.

About 18 months ago I nagged my doctor to send me to an Endocrinologist. When I attended I was most upset as I felt he wasn't listening to me, he asked if I snored and referred me to the NHS Sleep Clinic “job done” !

I nearly didn't have the sleep test but thought I wouldn't get any further with the endocrinologist if I didn't “prove him wrong” like arTistApple how wrong I was.

Jumping ahead my test showed moderate to high sleep occurrences and after a patchy start I now use the machine for an average of 7 hours a night and have never felt better. With the fantastic help of my local NHS sleep nurse I cracked it.

I didn't realise that I haven't, for many years, had a good nights sleep. I now have less fog and more energy but still work in progress for the other many symptoms.

My advice would be to not dismiss the idea of a CPAP and work at it until comfortable. I've just packed my mini for my holidays and wouldn't be without it.

[CapnM in reply to mazza999]

good to hear. its strange both SA and Hashi have this creeping symptoms which take on so slowly they become a new normal. its too easy to carry on thinking it is just age related. 7 horus is good, i am on 4 to 5, i made the mistake of taking the mask off after 5 hours yesterday but falling asleep again and had a headache when woke up.

[GlowCoach Administrator]

CPAP has helped me a lot, but just part of things that I have needed to do or change to be well. I'm still not there yet but I wouldn't be without my CPAP.

I've heard that since Covid struck there have been very long wait times to get diagnosed and sometimes long waits also to then get a machine. I used to get a phone review every year but my clinic have now stopped that as they dont have the time. They are there if I do need anything though and a while back had a face to face review and a few phone calls to adjust my pressure. Each year I will phone them for a new mask.

Hopefully you have bought a machine that your sleep clinic can monitor and adopt its care once you get to see them.

[CapnM in reply to GlowCoach]

thanks, it's journey for sure and expect more to come on both conditions but at least now i can seperate the two conditions.

I bought the APAP machine on the day of the results and used you tube to learn to analyse the data so now access the clinicians menu to change the settings according to what I need.

I slot the machine SD card into my PC and use Oscar which is sleep aponea freeware to analyse the data look at my AHI, pressure and leakage rates.

There is a site run by an Australian called "CPAP reviews" who is blazing a trail in patient empowerment and how healthcare services should be delivered in this century.

[GlowCoach Administrator in reply to CapnM]

When you get to the NHS clinic I wouldn't admit to changing your settings. I did have a conversation with my sleep doc around this and I was told that anyone doing that would be taken off their list.

[CapnM in reply to GlowCoach]

good to point this out, i was aware they wouldn't like it.

I have reasoned to blow the NHS off for 10 years, once I am retired the NHS can pay if I still need it... I see a London hospital (guys & StT) has just inserted the 1st implant which claimes to control sleep aponea. (a bit like a pacemaker I think)

thks

[Imaaan]

Your post couldn't come at a better time. I was crying earlier from the fatigue I have due to sleep apnea and your post is a source of inspiration. I'll continue my prayers to God and striving to get on the right treatment. I'm happy for you.

Are you on the full mask or nasal?

[CapnM in reply to Imaaan]

I went with full both based off the sleep report but also may as well start with the most comprehensive therapy, you need to make the initial trial work to get the benefits to see it through. Plenty of time to tweek therapy from advantage point of being whole again. I took to the mask pretty quickly but I can see its a bit of trial and error and 2 steps forward 1 back. Good luck with your progress,

[jade_s]

When I first started cpap, even prior to diagnosis when i was still suspecting it, the cpaptalk forum cpaptalk.com/CPAP-Sleep-Apn... was *immensely* helpful. They helped me troubleshoot every aspect of it, such as mouth breathing, getting a data capable machine, etc.

Just wanted to mention them. They're more US-based but they're a really great group, just like here.

Imaaan

[Imaaan in reply to jade_s]

Thank you for being kind enough to share a link.

[HeartWoman]

Youtubes The Lanky Lefty27 and CPAP Review offer lots of information. The website/forum CPAPtalk.com also is good with people willing to help. I am in the U.S. and have no one to help me out, so been on mu own and using the OSCAR software. I am still so tired, so not sure if it is all thyroid or need help with my CPAP therapy as well.

Jason of Lanky Lefty actually has sleep apnea and Hashis. In one video he talks briefly about the connection between hypothyroidism and sleep apnea, basically we lose muscle tone even when medicated. He dies do CPAP consulting as part of his business, so I think I probably should seek out his service. I am sure it would be more beneficial than seeing a "sleep doctor". He had years and years experience conducting sleep studies and understands the data.

[Megams]

~Thank you for sharing your journey thus far - interesting to learn that thyroid's implicated in sleep apnea.

The sleep Specialist I consulted 7 or so years ago told me it is hereditary. Came as complete surprise to me - my late Father whilst 6ft 2in + solidly built but not overweight snored loudly but always thought that was normal - obviously it wasn't.

So pleased your machine continues to give you better q.o.l

[Lynneypin]

I have a Fitbit which monitors sleep patterns. I was shocked at how little deep sleep I get, and how many times I wake through the night.

[TiggerMe Ambassador in reply to Lynneypin]

They are a mixed blessing but very useful data if looking to approach your GP for help

[CapnM]

Actually as a little post script to my original post whilst I undoubtedly have some underlying sleep apnea it appears after 8 months on CPAP that episodic myopathies (muscle weakness) probably caused by being hypothyroid were causing 'severe' sleep apnea on top.

I connected this as

- the severest symptoms are episodic (e.g. twice a year) and I get them with a low apnea score suggesting no obstruction but high respiratory effort causing night sweats and all day headaches. Also it comes on with other muscle weakness symptoms.

If you made it here and interested my amateur's self analysis is that my sporadic muscle weakness causes pharyngeal muscle tone weakness which causes the upper airway to collapse though not obstruct (i.e. concentrically like breathing through a straw ) . This is known as UARS and comes from many RERAs through the night. I stress this is my analysis from reviewing my CPAP data. all the best