This post is as the heading, but first some context. It’s a bit of an essay.
I’m no doctor, so this is an account of my own experience – we each have to make our own decisions.
The take-away should you conclude it may be relevant is towards the bottom.
It’s perhaps old hat by now, I’m a bit out of touch – but better safe than sorry.
I posted quite a bit here up to around 2010 to communicate personal experiences with long undiagnosed (actually never diagnosed - despite clear symptoms and repeated communication to a sequence of docs of what the likely issues were) secondary hypothyroidism, auto immune thyroid disease, and a thyroid cancer.
Also with a long series of secondary conditions.
I also posted about mainstream medicine's (again from personal experience) minimal capability and enormous reluctance to engage holistically to diagnose never mind to treat metabolic conditions, and the associated repeated failure of so many of the stock tests for thyroid and auto immune function. (they cost me €1,000s)
Also on the importance of our taking pro-active responsibility for ourselves in how we co-operate with the medical system - of reading the research and other sources of information, of figuring stuff out, of maintaining a healthy scepticism, and of being led by our higher and bodily knowing and intuition.
Surgery and set piece treatments (eg scans, prescriptions) apart my breakthroughs were self-initiated.
The suspicions regarding the likely presence of thyroid and auto immune disease were proven correct after years of misery in 2005.
The pathology report which followed a thyroidectomy for a thyroid cancer (which only came to light as the initially incidental matter of a thyroid ‘nodule’ found during an extended hospital stay to search for the never definitively identified cause of dangerously high blood pressure) found after microscopic examination of my removed and much enlarged thyroid (it turned out to have grown down into my RH chest cavity) advanced auto immune thyroid disease and an encapsulated Hurthle cell cancer.
I also posted on some of the approaches (culled from reading, Thyroid UK was a big help, as were the other patient centred thyroid support sites) which following the crisis brought about a slow recovery - including the magic of T3, discovering the significance of high (and potentially low) cortisol levels in blood pressure, gut, fatigue and thyroid problems, the contribution of mercury and metals to thyroid and other problems, use of chelation therapy to remove dental mercury and other metals, how to blunt the effect of high night time cortisol using a phosphorylated serine supplement, the importance of continued elimination of problem foods, and of meditation and mind work.
Also that lifestyle changes are typically necessary - that responding to these conditions usually requires a bit more than just popping the pill and carrying on..
So much for background. The following takes up the story, and is to communicate the central role it turns out that the high night (or any other) time cortisol levels triggered by sleep apnoea may play in the various gut, thyroid auto immune and commonly related metabolic and secondary problems so many of us have run into - and the potentially highly beneficial effects of the CPAP treatment prescribed for obstructive sleep apnoea.
While my stamina never came back to anything like normal levels post 2005, it wasn't too bad.
Real fatigue and morning hangovers (symptoms, not in reality – it was taking an hour of headache and brain fog to properly wake up) unfortunately started to become an issue again during the past few years. More and more sleep seemed to be required to feel even half well.
A self requested referral for possible sleep apnoea resulted in a sleep study, and a diagnosis of severe obstructive sleep apnoea. (30/hr, down to about 80% blood oxygen at night)
Starting CPAP in recent weeks has (the positive effects were immediately evident) delivered something of a miracle. It’s inconvenient (requires a CPAP blower and face mask, and a bit of getting used to), but was immediately effective.
Results have included a massive improvement in energy, feeling rested during the day, memory coming back, no more multiple runs to the loo in the night, back to sleeping around 8rs (down from 10 - 12 hrs), stable gut, feeling great.
Preliminary signs suggest a significant reduction in blood pressure, although it’ll take time to confirm this.
An experienced sleep technologist I spoke to said that the reduction in blood cortisol levels is the key. That the newly stable gut, the improved energy, the well-being and the improvement in blood pressure are all pretty normal, and that it was possible that it could in time sort out my borderline glucose intolerance too.
Time will tell in respect of how much effect it truly has, and whether it changes how my thyroid replacement works.
The unanswered question of course is that of for how long the apnoea has been the driver of my tendencies to high night time cortisol. It's very likely that it recently worsened, but that it has been around for many years.
Despite my being a classic candidate not a single one of the many consultants and doctors seen over the years even mentioned sleep apnoea as a potential contributor to the high night time cortisol identified by a test I commissioned from a UK lab - never mind to the bigger picture.
The tendency was actually to dismiss the test – that it’s ‘normal’ for cortisol levels to be all over the place…
The point to be made here is that despite this practice sleep apnoea (even more so if combined with stressful life situations) has the potential to drive night time cortisol to levels that when sustained can cause serious problems.
The difficulty is perhaps to do with medicine's tendency to ignore variations in many markers like hormone levels unless they reach stratospheric levels. (this in turn is perhaps a reflection of a tendency to let illness fully develop rather than act preventively to nip it in the bud) The diagnosis of the classic high cortisol conditions caused by eg an adrenal disease like Cushing;s requires this – in part I gather because the levels of blood cortisol vary naturally so much anyway.
This implies that what the system has regarded as only normally raised levels of cortisol can become holistically/systemically hugely problematical when sustained in the medium to longer term - knocking on into gut, endocrine, auto immune, blood sugar level and other problems. Which ultimately have the potential to trigger a wide variety of serious illnesses.
We’re really only meant to trigger the fight or flight response when a lion jumps out from behind a bush, and we need to run away…
The good news is that the sleep apnoea world seems (in at least some cases) to be aware of the potential for high cortisol caused by sleep apnoea to cause havoc.
Anyway… Hopefully this will help a few.
It’s always our own decision, but it’s perhaps wise if it’s a possibility to add sleep apnoea to the list of conditions with the potential to contribute to metabolic, endocrine, gut, auto immune and related problems – and to not be deflected from seeking a sleep study if eg a GP or endocrinologist poo poos the possibility…
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Interestingly I had Cushing's disease from a pituitary tumour causing high levels of cortisol in my body. I was tested just before i had my pituitary surgery & diagnosed just after it with severe sleep apnoea stopping breathing 72 times an hour. I was given a CPAP machine a month or so late. I believe my sleep apnoea started just as my Cushing's journey. Three years down the line I still have sleep apnoea although my cortisol levels are very low & I now need steroids to live.
Hi guys, glad it resonates for some. Again be aware that I'm not a doctor, this is just my reporting my experience and what I have read.
That's a very well written piece you linked SD, it fits very closely with my experience.
It seems like that's the story of my life - that what after years of struggle has proven to help in my story (through no act of mine) goes mainstream not too long afterwards. : )
There's lots of solid linkages described in it between sleep apnoea, auto immune/Hashimotos issues and thyroid problems too.
It talks of high cortisol triggering auto immune trouble via a specific inflammatory pathway.
The other description I've seen (which if true would suggest that the cortisol is a cause as much as an effect in these conditions) is that high cortisol causes a truncated form of digestion (to enhance fight or flight) - which ups the output of sugars, but sharply restricts absorbtion of minerals and nutrients required in the longer term.
By the thyroid among other functions.
The results being stuff like weight gain, glucose intolerance, tendency to diabetes, mineral deficiencies etc.
Longer term an inflamed gut which eventually leaks foodstuffs into the blood and destabilises and chronically agitates the immune system - leaving it likely to have a go at anything. eg the thyroid - which seems for some reason to frequently takes the hit.
The inflamed gut meanwhile reportedly predisposes to developing food allergies and conditions like Crohn's, irritable bowel and worse.
The problem I was taught Pauline is that once we become sensitised to anything (foodstuffs mostly here, but it can be almost anything) the immune system (in simple terms) tags it as a target. So we tend to suffer reactions longer term even though perhaps the inflammation that led to the original sensitisation has been removed.
It seems to be difficult to do much about this except to if possible avoid the foods in question - or to treat the consequences with steroids etc.
I wonder if it might be worth checking actual cortisol levels in numbers terms? When your doc says 'low' cortisol does that mean genuinely low, or just low by the standards of Cushings?
Another thought. It might sound daft, and i can't prove it - but T3 Paul who posted a lot here when I was last around put me on to using Piriton antihistamine tablets to quell the immune response/gluten intolerance like gut pain when I ate something that was problematical.
It's not reckoned to be good to take the stuff long term, and with pre-existing illness and other meds it'd need checking first - but I found it very effective when needed. Measured by the way it muted the rise in blood pressure (presumably caused by cortisol released in response to the immune reaction caused by the food) versus what I had seen before in similar circumstances.
It happens he said (he was put on to it by a consultant treating serious food allergies he suffered from) that the specific antihistamine in Piriton targets inflammation in the lining of the gut as well as in the nose. (hayfever)
I've also found low dose naltrexone (there's lots on the web on the topic, but again get advice if there's other meds involved) useful to reduce inflammatory responses which were restricting my nasal breathing. It possibly helps the gut too, although I couldn't tell for sure as the ffect is more gradual.
If you still have sleep apnoea might it still be causing high night time cortisol which day time testing is not picking up?
If so (especially if it's the obstructive type) then CPAP seems most of the time to be very effective in dealing with it - if it's set to the correct pressure and used. It's dropped mine to 1 or 2 apnoeas a night - which is the normal rate.
Central aponoea is more difficult to treat, but there are fancier varieties of machine which I think may help with that too.
Ref your pituitary surgery. I've had several previous surgeries with no comment (but one entailed an emergency caused by a drop in blood pressure), and have just had a back surgery (microdiscectomy/bulged disc) refused by the anaesthetist until I was tested for sleep apnoea, and if diagnosed that it was under control - most seem to reckon that it (especially the central variety which mine turned out not to be) brings a significant risk of highly unpredictable reactions to anaesthetics, pain killers and sedatives.
SD's piece mentioned that sleep apnoea has been shown to throw the HPA (hypothalmic/pituitary control axis) - which regulates thyroid, aderenal and other hormones), and that periods of high stress (= high cortisol) often tips off this whole interlocked set of adrenal/thyroid and auto immune problems.
My experience also was that while I was already struggling a bit with stress was that it was the trauma of involvement in a serious car accident involving deaths that probably kicked off the onset of heavy duty hypothyroidism and fatigue.
There's seemingly reason to think that the consequent reduction in thyroid output and/or hormone conversion (which reportedly entails the production of reverse T3) that the high cortisol from a single incident causes doesn't necessarily properly reverse itself - leading to chronic secondary hypothyroidism.
Another bit of information I've tripped over while reading research papers is that a stressed mother (running for whatever reason high cortisol, and consequently with reduced availability of the large quantities of thyroid hormone needed for proper development of the endocrine system of the foetus) during the third trimester and possibly consequent very premature birth (as was my case) can seemingly result in subtle developmental disorders affecting the endocrine (especially thyroid) system and some of its enyyme based control processes, and associated aspects HPA control system.
Leading it seems to an increased susceptibility to the sort of reduced ability to handle stress, high cortisol and thyroid problems we;re discussing...
Not sure if it's related, but my sleep cycle has always been very easily disturbed too. Working shifts years ago caused sleep problems it took years to resolve.
I'm guessing it's mostly us genetically or otherwise predisposed canaries that go down with these conditions... : )
Hi thanks for posting an interesting possible link between sleep apnea and thyroid issues. Sorry if you’ve already provided the information but how did you find out you had high nighttime cortisol levels?
I’ve had my cortisol tested which was low but reacted ‘normal’ to the short synacthen test so endo was not concerned for disease (they’re not necessarily into optimal levels!). I’m interested in this sleep apnea link as I’ve always been a light sleeper, getting up during the night for the bathroom and fidgeting/turning over regularly during the night. I don’t snore but do breathe lightly and wonder if this gets shallower during the night to the point my oxygen is low and my body needs to wake me up to reset my breathing. Weight wise my NHS BMI is top end healthy/nudging into overweight having lost 1.5stone after getting on T3 in February so I don’t think that’s the problem.
Did you have to take anything to improve your nighttime cortisol or did it purely resolve with using the machine and improving sleep/oxygen levels?
Thanks so much, it’s a shame we have to learn from each other rather than the doctors but at least we have that! 😊
Hi, I found your post very interesting. I have Hashis and although I dont think I had sleep apnea I did snore terribly. My husband suggested mouth taping at first I couldn't see how it would work as I have a displaced septum and had a constant blocked nose.
I gave it a go though as I am always willing to try anything to find a cure. I needn't have worried though as the taping cleared my nose, for the first time in years I had vivid dreams (thankfully they have settled a little) but now I am getting a great nights sleep and along with the NDT I feel great.
The piriton for gut inflanmation also raised an eyebrow as my hubby also suggested I do a three day (72hr) water fast to reset my immune system. It was a lot easier to do than I thought it would be I even managed to go to work! Again I'm glad I did it though as a 51yro woman who has suffered with chronic hayfever since 5yro with numerous allergies all hospital tested. I have just spent this summer outside enjoying the sun and playing with the neighbours cat without a single sneeze. Previously I could not even walk into a house if a cat was in it I would immediately become ill.
Could the fast have reduced the gut inflammation? I would love to hear if anyone else had tried a fast.
I did a 3 day water fast as well, but because I followed it with 54 days of the AIP “diet”, and prior to the fast I had quit gluten, soy, and dairy, I don’t know if all the improvements are just from the fasting, or the combination of all the changes in eating habits. But my sleep is better, I have 85% less brain fog, about 90% less joint pain, I no longer get itchy inside my ears, and I have recovered my speech thanks to an improvement in memory (still not all the way there). I’ve also weaned myself off the thyroid medication (I did this very slowly along 4 months, and paying close attention to symptoms returning). I feel great but I won’t really know the real scientific results until I test for thyroid and Hashimoto’s antibodies at the end of August. But I’m way past the half life of the medication and I’m more energetic and alert than when on it, I’m able to get off the couch and work, etc, which was not the case 3.5 years ago.
Hi mtcorr , I also did a three day mineral water fast at the request of my son's Peadiatrition. At the time I was not on any Levothyroxine. As I would like to try this again, could you tell me if you were on Levothyroxine at the time please. I did not realise this could reset your immune system, but I was doing it to eliminate Candida. Before I did this I also did an elimination diet for Wheat, and this greatly improved how I felt, so have now been gluten free for about 30 years.
At the time I did the fast I was gluten free, had worked hard on my vitamin levels, gut healrh and was taking NDT. I continued to take the NDT through the fast. The NDT had already worked wonders but inflammation and hayfever remained.
I would recomnend anyone to try it, its really not hard to do and I managed to work with everyone eating around me lol.
Thank you for your reply mtcorr . I felt exactly like you. On each of the 3 days I just improved more and more, and managed to cook without feeling hungry for my husband and son. It was the thought of not taking T4/T3 for a few days that bothered me. I know I can only go 2 days without. Since adding T3 3 years ago,my hayfever has not been bad enough to need to take anything for it.I'd hang onto your hubby he sounds a useful chap to have around. I shall now read that article. Thanks for posting.
I'm in the U.S. - originally used CPAP but after losing about 6 stone I was able to switch to a nighttime dental appliance. I remember vividly my first morning after CPAP use - no headache, no brain fog for the first time in years!
How can you tell if you have sleep apnea if you sleep alone?
If you wake yourself up in the middle of the night with a big grunt or snore. If you need to get up to pee a lot. If you have daytime tiredness and have difficulty keeping your eyes open when driving. When you yawn a lot despite thinking you had a good nights sleep. These issues and many more come with sleep apnoea.
If you think you might have a problem, you can have a portable test done in your own home. You will get a wee box to strap around your chest and you simply connect a nasal cannula and a pulse oximetry probe (detects oxygen levels when clipped to your finger). You simply go to sleep and remove it in the morning, return it to the clinic for analysis and if doctors are concerned they will bring you into the sleep clinic for one or two nights for a full assessment.
Thanks, that is helpful. I probably don't have sleep apnea in that case, or rarely.
A friend I stayed with told me I snored, but almost never waking up with a grunt or needing to get up to the toilet more than once in the night.
Sometimes I wake up quite chirpy, other times with a dry mouth and a fuzzy head, especially if having overslept or slept very heavily, and a headache that sometimes lasts all day and makes it difficult to get anything done. This seems likely to be the remnants of migraine, not sleep apnea. I used to have migraine badly before the menopause, but, thankfully, it has gradually decreased almost to nothing since.
Perhaps you could keep a sleep diary for a few weeks which includes how you feel when waking up. Some people have headaches or feel as though they haven’t slept well. So many people are undiagnosed, and for many, simple lifestyle changes or a small oral prosthesis will do the trick. Not everyone will need a mechanical ventilator to sleep.
I hope you don’t have sleep apnoea but at least you will be informed if you do.
It wouldn't be definitive, in that there's lots of other conditions that can cause it - but a low blood oxygen level measured immediately (literally immediately while still dozy, and before moving) upon waking from sleep during night is probably another good indicator of sleep apnoea.
It'd be low cost, and could be done DIY with a small electronic blood oxygen level monitor that clips on your finger very easily.
It's possibly to buy a small single reading one for about £20 these days on eg Amazon. Just I'd say be careful to get one receiving large numbers of good reviews, as some might not be as reliable or accurate as they could be.
The meter would need to be left ready under your pillow or somewhere it can be got to while still half asleep, and without much movement.
There's cheaper ones even than that, but...
It's possible to buy a fancier one that clips on your finger, records and downlights a full overnight record to a PC for about £135.
My SPO2 as it's referred to as was getting down to (had a nadir of in med speak) 80% in the sleep study.
Normal seems to be somewhat variable depending on the individual depending possibly on fitness, lung function and so on - but for me is perhaps 98%.
A few day time measurements taken while up and about (not when excercising) would presumably give a baseline number for comparison purposes.
A diagnosis of sleep apnoea cannot be made by looking at oxygen saturation alone and it might cause panic or confusion to someone less aware of expected values. Saturation levels vary so frequently that they really need to be assessed over a longer period of time and an average saturation level worked out depending upon activity levels.
Of course, a pulse oximeter is a handy tool to have if you are suffering from a heart/lung condition or sleep apnoea, however, in my opinion this should be discussed with your doctor to avoid needless anxiety.
HI M. The point was speculative, I don't know how it might work out in practice, and I did say that spot SPO2 readings couldn't be definitive because it's potentially variable for so many reasons.
If however it repeatedly and (literally) immediately upon waking happened to show up very low numbers of the order of the 80% quoted by my sleep study report (it'd take some research to decide what were acceptable values mind you) it would be a pretty strong suggestion that something wasn't right.
Which in essence would only amount to a suggestion that it would be wise to see a doctor and go and get properly tested.
For sure it'd be somewhat experimental, and it could turn out to be impossible to get meaningful readings for some unknown (to me) reason...
The earlier post made clear that a sleep study is the only way I know of definitively diagnosing sleep apnoea.
The other difficulty I guess is that it might be too that spot readings taken with a simple unit like that could perhaps miss low readings, so it shouldn't be taken as an all clear.
The next problem that would follow would likely be that it'd be a struggle to get a doctor to take the readings seriously - which is why the next step would need to be proper testing.
The problem with sleep studies around here is that unless you have insurance and/or can pay to have it done privately the waiting lists are incredibly long.
So it'd certainly be of somewhat marginal benefit, but on the other hand it might serve as an incentive to do sometihing definite about a situation...
Sorry, I didn’t mean to sound argumentative, I merely wanted to point out that most doctors will want a collection of symptoms pointing in the direction of sleep apnoea before pursuing further investigation. Using oximetry without any related training could lead to further confusion and related anxiety.
There's no problem M, and that's abolutely true - if we're going to head down a road like that it's necessary to be able to handle the sort of situations we might walk ourselves into.
Otherwise better not to go there.
I've developed some thoughts on this topic a little more in reply to yours below.
One of the potential problems in engaging in a more co-operative approach is that the popular culture has traditionally implied that doctors should be treated as infallible, that we in dependent mode should place ourselves totally in their hands, and that we then scream blue murder if anything goes wrong.
This latter pattern of behaviour means that many doctors for good reason take absolutely no chances whatsoever in deciding how to engage with the patient.
I'm as below a strong believer that we can never drop responsibility for ourselves, but it's as below by no means a simple matter.
Despite this the conundrum and one of the basics my journey has taught me is that while self responsibility can be hugely important an enabler of progress, there does in most medical situations (and in fact in life situations too where a third party provides expert services of some sort) arrive a point where we just have to for whatever reason place our trust in somebody.
Ther rider is perhaps that given the choice it's usually best not to blindly do so...
I would totally agree with the importance of this.
My husband was always a snorer, and in recent years had high bp, very bad acid reflux waking him at night and weight gain, not to mention needing to power nap several times during the working day just to get through.
I told him to tell his gp I thought he had sleep apnoea- easy to diagnose when you’re not the one asleep!
His sleep apnoea was very severe, he actually only slept for 3 mins in every hour! But once on cpap, his bp has reduced to normal levels over a period of about two years, the acid reflux (for which he was medicated) stopped immediately as did the nighttime waking (either to be sick, or to toilet).
I hate to think the damage that is going on in people who are undiagnosed. Thanks for highlighting.
I have some acid reflux too, but have stopped taking Omeprazole since realising I was also slightly hypothyroid, and rely on the occasional Gaviscon tablet. Even the need for those has decreased from about 5 a day to a maximum of 2 or 3 since being on Levothyroxine. Everything is interconnected isn't it!
I've had lots of acid gut problems too Jnetti - despite my thyroid replacement and my diet being well under control.
The CPAP has been magical in eliminating it - which suggests that high cortisol/the curtailed digestion it can cause may also be a contributor.
Bicarbonate of soda (about 1/4 tsp) is pretty effective in settling stomach acidity I have found.
I've not studied it, but it's a field which is likely worth digging into. There's reason (judging by various reports about) to think that some of the chronic inflammatory tendencies which lead to auto immune troubles (and ultimately to cardio vascular and other immune based diseases that kill most of us) can be contributed to by eating foods which create acidity in the body.
The true fix is clearly to eliminate problem foods, and there''s books out there on these topics - but some say that a regular dose of bicarbonate is helpful too.
Best not to over do it though, it contains a fair amount of sodium which isn't good with certain (kidney?) conditions.
Be careful, many people with hypothyroidism suffer from too little stomach acid which can produce similar symptoms as too much acid. Sometimes doctors can be a bit quick to prescribe antacids or protonpump inhibitors.
Have you tried apple cider vinegar? If you put that in the search function you will find a whole different perspective.
I've not studied the area carefully M - but have had good results with apple cider vinegar.
One basic behind all of this may also be that of the nature of bodily responses - I suspect from personal observation that it applies in at least some cases of stomach acidity.
If the gut is too acid then taking an antacid will certainly in the short term neutralise that.
If however the underlying cause of the problem is that as a result of some imbalance the body is trying to run high stomach acidity the effect of artifically reducing it by means such as an antacid may actually stimulate increased efforts by whatever system to increase acidity in the longer term.
Sometimes (it'd need reading to start to understand what's going on) it's pershaps helpful to treat acidity with something a little acid - since this may longer term have the required effect.
This is really interesting for me. I have had poor and unrefreshing sleep for years. Brain fog daily etc.
Lately I have been feeling like I'm gasping when I suddenly awake which happens several times a night-my sleep is very restless. When I wake like this, I feel my pulse rate stronger than the weak one I normally have, and I always feel like I've woken straight from a dream.
My. husband says he hasn't noticed me gasping for breathe but that doesn't mean I'm not. Does this sound like apnoea? Lately I've been wondering if I have it. My brother suffers from it. My GP rolled her eyes when I mentioned it as I'm trying to get them to take my suspicions of central hypothyroidism seriously. Any suggestions as to what I should do?
Hello. Very interesting info. I'm having so much trouble merely trying to stay awake, and be able to function at all. It has been suspected for years that I have sleep apnea (I am both a snorer and a teeth grinder) but being the stubborn and hardheaded person that I am I felt most likely I probably do have it, but the odds of me wearing a CPAP was very unlikely, so I always refused to get tested.
Those thoughts changed when I was recently diagnosed with COPD and Asthma, put on inhalers one containing steroids and I took a huge nose dive from an already very tired body- (due to all my other medical issues and medications) to becoming a complete zombie because I'm so exhausted. I'm sleeping sometimes 14-16 hours a day, (never less than 12 hours a day), yet never feel rested, and often don't have enough physical energy to pull myself out of the bed. I actually have a home sleep study scheduled for this coming Tuesday which should confirm for sure whether I have sleep apnea or not. If I do have it hopefully the CPAP, along with some additional testing of levels suggested by another member will help turn this complete exhaustion around where I can at least function somewhat normally.
My hubby snores like crazy too and he has severe gut issues, but they've been unable to find the cause, so the link between the increasing cortisol levels, sleep apnea, and the inflammation of the gut will certainly be investigated in his case too. Thanks again for the info it was very informative.
my apnea came after severe thyroid disease set in. my skinny frame swelled 100lb in less than a year (tests saying didn't have a prob) and apnea set in. it went away as my iron levels rose and hashis was formally diagnosed & treated (my markers were 2000+). since then had 1 experience of it when a doc took me off ndt - was incredibly frightening. the first time i was in such a fog, was so sick!!! thought i was swallowing bugs in the night - even had house fumigated - but ta da - the miracle of the internet beat out idiot gp before i ended up in a coma/ dead
I wholeheartedly agree with you and mirror your experiences. I have primary hypothyroidism plus Hashimoto’s and never felt so well until mild sleep apnoea with significant sleep disordered breathing was diagnosed and I was prescribed CPAP. It has changed my life ... I am almost normal now!
Hi again all. Again bear in mind I’m only sharing thoughts from my own limited experience, reading and impressions. This isn’t necessarily accurate, and I’m most definitely am not a doctor.
That said its good to see the topic resonating for quite a few.
It's so important I think to approach these I suppose you could say 'syndromes' from a multi-system/multi response point of view.
So much interacts, and so many of these issues are mutually reinforcing. Targeting a single issue eg thyroid only often won't cut the mustard. Lifetsyle, stress, mindstate, autoimmune, high or low thyroid, adrenal, sleep apnoea and gut problems (in no particular order) are often simulataneously present.
One peculiarity as before is that hypo thyroidism seemingly (I've non experience) can produce symptoms quite hard to differentiate from hypothyroidism without blood testing.
We're discussing mostly the issues that can follow from running even moderately raised levels of cortisol longer term, and how sleep apnoea can cause this.
Low cortisol caused by adrenal exhaustion or disease conditions is just as much of a problem, in that it seems that we need to have some cortisol about to use thyroid hormone. It's also an important part of our response to physical and other challenges.
The whole quasi legal deal surrounding medicine is unfortunate. So many docs try to function as the archetypal oracle of infallibility – yet this is one field which definitely benefits from constructive patient/doctor/holistic co-operation.
The other issue is that most docs face a significant risk of problems with their professional bodies if they stray into more holistic and empirical approaches from the sometimes highly questionable dogma passed down from the top.
This is unfortunate, since while the alternative wing is something of a wild west it also seems to be the driver of progress in matters like thyroid and fatigue.
An unrelated example – it seems that the British Medical Journal (among many) is asking serious questions about the science that underpins the still pushed low fat high carb food pyramid. There’s many pointing to the skyrocketing rates of cardio vascular and auto immune disease that have paralleled its popularisation (and that of runaway numbers multiple vaccinations for very low risk reasons, processed foods and other potential causes), and muttering about what the driver of the thinking might have been.
What seems reasonably clear is that high carb and especially high wheat containing (sugar and milk aren't great either, nor are many of the additives and synthetic ingredients used in processed foods) diets can predispose to gut and blood sugar issues - on top of the effects of eg sleep apnoea or other causes of raised cortisol.
On hypothyroidism and sleep apnoea (and also auto immune issues) Jnetti – it seems unlikely that they are not at least mutually reinforcing.
It’s long been felt by progressive practitioners and the alternative side of the house that one likely progression as described above is that high cortisol (from whatever source – apnoea, stress, other) messes up especially gut function (also mind you other organs/bodily functions not required in the flight situation), leading to chronic over stimulation of the immune system, leading to attack on various organs but often the thyroid.
Leading potentially to if not brought under control by measures such a elimination of problem foods, lifestyle changes, treatment of causative disease conditions and effective thyroid replacement the more serious and not easily reversed auto immune based diseases.
My personal experiences seemed to originate with stress, gut troubles and probably some inherited/premature birth related tendencies, but hypothyroidism also messes with gut function – so there’s perhaps no reason why the reverse might not be the case.
The ats journal paper Jnetti suggests that there’s almost no correlation between sleep apnoea and hypothyroidism. That may be the case, but I’d be cautious about that since it says that the finding was based on patient chart reviews.
The problem with that is perhaps that the stock T4/TSH blood tests may well in that case have been used to detect thyroid problems, and if so it isn’t all that likely to detect the secondary hypothyroidism (see below) that if my experience is typical often accompanies auto immune disturbances – which in turn seem often to be associated with for whatever reason (but sleep apnoea seems definitely to be one possibility) long term raised cortisol levels.
A few words on my limited understanding of secondary hypothyroidism. Getting thyroid hormone to where it’s used in the cells is it seems a multi-step process. The thyroid produces hormone (T4 and T3, most of the latter is reputedly directly routed to the brain) which is bound to proteins and goes into circulation in the blood.
This it seems is just a reservoir, or a buffer stock as measured by total T4 and total T3 tests – it’s seemingly inactive in this form. There then are enzyme reactions (not sure where) that act on this bound hormone to make what’s called free T3 and free T4. This circulates in the blood, but is an ‘activated’ (so to speak, not a scientific term) form that the cells can use.
Most (I think) of the T4 in circulation is eventually converted to (free?) T3 before use anyway by stripping off an iodine – another enzyme reaction.
The body seems to have lots of in the everyday practical sense fuzzily understood mechanisms for managing the quantity of activated (I think T3) hormone that reaches the cells – you would need to read this up. It can however it’s said de-active hormone when needed by converting it to reverse T3 for example – no idea how.
This reversal/de-activation process (used possibly when rapid reduction of the effect of thyroid hormone is required because of sudden changes in levels of other hormones with similar metabolic effects like cortisol, or I think the sex hormones) it’s suspected by some can become stuck on. (the controversial and somewhat risky but some say often effective Wilsons treatment using a high dose of T3 which has to be very quickly reduced as it takes effect is perhaps one approach to resetting this)
Presuming it's for real the problem with this sticking on of some of these control processes for whatever reason beyond the duration of the original need is that while we may well have lots of inactive hormone circulating, we are actually hypothyroid because it can’t be used.
Factors such as congenital and developmental disorders, fluoride, mercury and other toxins it seems also can mess with various aspects of these enzyme reactions.
The problem is that the stock T4/TSH test was designed to detect the situation where as a result of eg mineral deficiencies or other problems in the gland the thyroid is not making and putting into circulation in the blood enough hormone. It doesn’t so far as I know differentiate between bound/free/reverse hormone and the like.
So it’s possible to be hypothyroid (the cells are not getting the active hormone they need) when the T4/TSH test says you are fine. i.e. your thyroid may be producing the required amounts of hormone, but problems with the various enzyme and other processes downstream which free/activate/convert hormone mean it’s not possible for the cells to use it.
Some with effective conversion processes do fine on T4 alone, but my own experience after a thyroidectomy (I wasn't because I couldn't get diagnosed ever prescribed thyroid replacement before the thyroidectomy) was that I was heavily hypothyroid on T4 alone – seemingly because problems in the downstream processes meant my system wasn’t converting enough of it to the T3 needed for e.g. good brain and other organ functioning.
The eventual prescription of T3 in my case by a co-operative endocrinologist who knew that this possibility existed delivered results that were almost magic – an obvious lifting of the fog within hours, and a slow improvement in energy, gut function and well-being that took months to top out.
This in very broad outline is one take on secondary hypothyroidism. Mainstream medicine tends not to talk about it, my endo says because they don’t have reliable tests available to troubleshoot what is a fairly complex situation.
My own experience with secondary hypothyroidism before the thyroidectomy was that they kept on using the stock T4/TSH test and telling me that I wasn’t hypothyroid – even though I obviously had the whole gamut of hypothyroid symptoms. It's hard however to think other than that there’s some GPs about that don’t understand this possibility. My own actually got angry at my continued pressing that secondary hypothyroidism was likely my problem.
Prescribing T3 seems to fix some (quite a few?) secondary hypothyroidism cases because it leap frogs the requirement for compromised upstream enzyme reactions to convert T4 to T3 properly. The system doesn’t like to use it though because it’s an awkward test, is quite volatile in use (it’s easy to become overdosed and hypothyroid if it’s not handled precisely), and perhaps because it's short half life means that blood testing isn’t all that useful – and is more expensive.
My own experience suggests that in reality it’s not always necessary to have tests, and that testing for T3 levels may anyway still not identify the problem. I showed only occasionally low (total?) blood T3 levels pre-thyroidectomy, but yet was very hypothyroid.
It’s actually easy given a co-operative endo to trial a moderate dose of T3 to find out if it will help, it in my case anyway produced the immediate response above at quite a low dose. The trouble is that the system prefers to have test to determine need, possibly because it spreads the risk and is regarded as ‘scientific’.
Care is needed with T3, it takes effect in a matter of hours, and for example taking a double dose by accident has the potential to leave a person quite hyperthyroid with a raised pulse rate etc. (depending on the dose of course) This has the potential to create risk for a person with eg heart or other health problems for example.
There are situations which T3 won’t resolve. Heavy metal or other toxicities, or perhaps (?) developmental disorders and other conditions which interfere with thyroid metabolism are mentioned at times for example.
Treatments in cases of toxicity seems to focus on detoxing. I got some good benefit from chelation therapy to remove the high levels of mercury found by a hospital test – but that has its risks too.
Moving now to a new message as this is getting rather long.
Just a few more bits of personal input, after that I’m more or less out of thoughts.
The water fast to reset the immune system is an interesting option, I’ll follow that up. It’s not one that I tried. My gut has settled slowly over an extended period, with the CPAP delivering an enormous leap forward in the past month.
My impression about the immune system is that it can be in the background sense be persistently and chronically over stimulated, or can be triggered into producing a short term reaction to a short term challenge. eg eating or coming into contact with something our system is sensitised to.
I don’t know if the former occurs because it’s being driven by some continuously present factor.
Problem foods/diet is definitely a big factor, but there’s quite a bit of concern about to the effect that the adjuvants in the these days hugely frequently used (if people buy into the marketing) flu vaccines and the like.
I was amazed recently to see in a GP’s office a poster by a local health service recommending something pretty incredible of the order of 30 (?) vaccinations for babies in the first 18m of life.
There’s a lot of concern about that the enormous increase in rates of autism and similar developmental disorders (while it may have other causes) may be linked to the parallel increase in the rates of use of vaccines in the past 30 yrs or so.
It’s also possible that exposure to chemicals in the environment plays a part.
Increasingly at home as a result of use of synthetic materials which may outgas – a whole topic in its own right. The health implications of the use of rigid and spray on polyurethane foam insulation in homes etc is a topic worth reading up about.
My high night time cortisol LJG was found using the Genova adrenal profile salivary test mentioned before. The signs are that the CPAP has been very effective in lowering my night time cortisol levels, but this hasn’t been proven by a repeat test.
There doesn’t seem to be any very effective way of diagnosing sleep apnoea Jneffi except via a proper sleep study. Much like Pipricho I’d detected myself waking up gasping for breath and with a racing heart a few times (this was what made me suspect sleep apnoea), but was surprised to find that the sleep study recorded 30 apnoeas per hour.
Sleep apnoea was definitely causing brain fog in my case, but then so did thyroid when I was hypothyroid. It perhaps make sense, in that if the brain is deprived of thyroid hormone and/or oxygen it’s not going to function so well. The sleep study had my blood oxygen down as low as a bit over 80% which is incredibly low – no wonder it was producing a hangover-like effect.
Much like MTC I’m finding the CPAP is forcing me to breathe through my somewhat restricted nose. This is made possible by the positive air pressure, but it seems to be improving my nasal breathing too.
My nasal problems go back to a chronic sinus infection early on in my hypo/chronic fatigue days. The surgery to drain a sinus some how left me with slightly restricted nasal breathing. Either that or I coincidentally developed a degree of allergy driven nasal inflammation around about the same time.
I've found that the low dose naltrexone mentioned before improves this, presumably by reducing inflammation.
I don’t like to think too much about the potential damage done by what in my case could be years of sleep apnoea MM. : )
While I know it’s not so easy in the UK on the NHS, my personal experience tends to suggest that if a dogmatic GP or endo is encountered that it’s best to switch to another. Another again if needed.
Many docs follow the party line/dogma on thyroid and related. I’ve not had much luck with trying to persuade the reluctant to consider more progressive approaches by rationally explaining options. They seem to often to retreat further into the bunker.
My experience too CJ is that steroids (also beta blockers for blood pressure) can have pretty nasty effects if we are already hypothyroid. One of the scarier effects caused by what was likely auto immune attack on my brachial nerve (Parsonage Turner syndrome) was initially fierce pain, then a progressive paralysis of my RH shoulder and arm which lasted for a couple of months before sorting itself out again.
A neurologist dosed me heavily with steroids in an attempt to offset this when I was already heavily hypothyroid, I thought I was going to die. They may well have helped, but the side effects were so bad (a combination of low mood and loss of energy) that I almost immediately stopped taking them. (which may or may not have been a wise move)
Hypo or hyperthyroidism seem likely (and I think (?) were linked with sleep apnoea and vice versa in the pieces linked by Slow Dragon and Jnetti near the start) to cause sleep apnoea JD, in that it seems likely that anything which reduces the muscle tone in the soft tissue to the back of the jaw could precipitate it.
PS Typo in the 2nd post above. It should have read: 'One peculiarity as before is that hyperthyroidism (overproduction of thyroid hormone) seemingly (I've non experience) can produce symptoms quite hard to differentiate from hypothyroidism (under production) without blood testing.'
CPAP saved my life! I felt the immediate effect and continue to get better, so much that I almost feel normal again.
I am wondering whether or not CPAP would be beneficial to those not diagnosed with sleep apnoea but have thyroid issues.
In my case, obstructive sleep apnoea is only mild, I have significant sleep disordered breathing stemming from cardiac insufficiency. In effect, my brain does not tell my lungs to breathe. Perhaps in thyroid disease; which I gave as well, the signal pathways are interupted? Only a thought, what do you think?
It strikes me that it may be worth trying to explain in amateur terms (not a doctor - again) why high night time blood cortisol levels can be caused by sleep apnoea.
There's presumably more to it than this in detail, but the outline of what happens in the case of obstructive sleep apnoea seems to be roughly as follows.
When we become fully relaxed as in deep sleep, the soft tissue in the back of throat or whatever collapses to block our airway.
This stops our breathing, and sees our blood oxygen levels drop. Mine reached a nadir (lowest value) of 80% duing my sleep study - when my normal waking value is of the order of 98%.
This is sensed somewhere in the brain, the result is that a signal is sent to the adrenal glands to release a shot of cortisol. (and perhaps other adrenal hormones) This jolts us back to a state of arousal, the tension is restored to the tissues blocking breathing and we breathe again.
The results are at least twofold - we get a shot of cortisol into our blood, and we are awakened from the deep sleep we need to be properly rested and recovered.
This can happen many times per hour, the figure was x30 in my case and it can be much higher.
The result is that we end up feeling like death warmed up - and end up accumulating high levels of night time blood cortisol.
A cortisol measurement taken during the day is unlikely to detect this - partly because of the problem described a few posts above where medicine tends to ignore anything except very greatly raised levels of cortisol because the level varies so much during during normal day to day living.
It seems that genuine practical problems do arise in trying to separate what might be an abnormal level of cortisol from a natural response to stimulus when using spot testing.
Also because we (no idea how long it takes) seem fairly quickly to metabolise the stuff - to clear it from our systems.
The bit that seems to do the harm (as is becoming clear in so many illnesses caused by imbalances in body functions now) is that a 'moderately' (in traditional acute medical terms) level of cortisol which is relatively harmless and quite normal in the short term can cause the sort of problems already described when maintained longer term. eg right through the night, and night after night.
One variation on this scenario may be non-obstructive or central sleep apnoea which entails a compromised breathing reflex.
No idea exactly what happens then, but it might be reasonable to surmise that even lower blood oxygen levels are possible, but perhaps without/with less severely raised levels of blood cortisol IF (and this is just a surmise) in fact the compromised breathing reflex means that cortisol is not released in response to these low levels of blood oxygen as normal...
Obviously, more research in this fiel is needed and people like us who are willing to be realistic about our experiences are essential to the accumulation of knowledge.
Finding the funding and researcher willing to take on this task is another thing.
As i see it it's so important in territory like this that we take as much responsibility for our selves as we can - in co-operation with a like minded and capable practitioner.
It's I suppose ultimately a part of the awakening that's currently so urgently required of humanity - that we drop the tunnel vision that sees us untinkingly hand all of our power to power in the hope it will in return for blind compliance look after us.
It's not the easiest, in that if we get carried away and let fear or other aspects of ego take over, or for that matter jump to mistaken conclusions in absence of either good information or reasonably accurate perceptions then we risk walking ourselves into serious trouble.
The old saying of 'walking between the raindrops' seems to apply. In matters medical if we wish to head down that road (and many prefer to assume almost no responsibility themseleves whatsover) it requires the ability to handle ourselves in the face of what are scary potentials, to seek out practitioners capable of and ready to share information and work co-operatively, and to then ourselves do the same.
It's so important to recognise too that practitioners operate in a difficult professional environment where it's very easy as outlined before for them to fall foul of fitness to practice committees or other issues if they are seen not to closely follow the sometimes questionable dogma that gets called best practice.
There's limits to what it's reasonable to ask, and if we seek responsibility we also have to accept our share of responsibility for outcomes.
Like any other relationship given the right potentials trust builds with successive positive exchanges, but all it takes is a wrong move and it can be gone in an instant - both parties back into their bunkers and cautiously eyeing each other up.
I have to say that after many years of running into the defensive and conservative style of medic that my current endo is very good in this regard.
Just to add another thought on the subject of this time normal sleep, also from non medical, broad brush and personal experience point of view. ie read up the topic and make your own decisions and consult your doctor before trying anything.
it's very important to get good sleep, but even without sleep apnoea it's possible to suffer significant sleep disruption.
This as a result of disturbance of our natural sleep cycle.
We may on a routine basis simply go to bed too late, the effect of this is to bounce our sleep cycle to this new timing. With the result that if we go to bed at our normal earlier time after a few nights of this we'll struggle to sleep, and probably won't get our normal hours.
Sleep is triggered naturally by a period of perhaps 1 1/2 hours spent in declining light, the brain in collaboration with the body clock somehow signals to cause the release of melatonin - a naturally occuring somewhat unusual variety of hormone which causes us to feel drowsy.
Push determinedly past this point, and it seems likely (from how it feels - the classic 'wired' feeling) that the body releases cortisol or a similar hormone to maintain the required level of arousal.
This with the fact that the release of melationin has already occured and been overridden can for obvious reasons mess with our quality of sleep.
These days not only do we tend to stay up late, we also have very high levels of night time light in our houses - which by delaying the triggering of the release of melatonin tends to push our sleep cycle later even if we down tools at our normal bedtime and go to bed.
The bluish light from LED lighting and computer screens is even more effective in this regard.
We're also likely to get sucked into compulsively staring at a computer late at night. This in addition to the above effect adds the requirement to run the brain at a high level of arousal - LED screens (unlike say a book) being dot or pixel based seem to be tiring/to demand lots of brain power to process the incoming visual data.
Likely more cortisol, more disturbnce of sleep...
I'm not quite sure why, but it seems it's as in my case not unheard of for those with likely some inherited tendency to metabolic conditions to also suffer from an easily disturbed sleep cycle - so the above is especially effective in messing it up.
Shift work is really piling challenge upon challenges in this regard. While some on the face of it do OK on shift (think it's been proven by research not to be healthy however) my experence was that working rotating shifts reduced me in a few months to an almost total inability to sleep - which took over a year to sort out.
It's prescription in the UK (?), and the subject needs reading up to understand what's going on and what may be wise - so that anybody considering using the stuff can make their own informed decision.
I've however found taking melatonin in tablet form helpful for re-setting the body clock in the event of sleep disturbances. It's non-prescription in the US, and for this reason is popular there among those that travel a lot between times zones.
There are also claims about to suggest that taking a little may (?) be beneficial as we get older anyway - but that's again going to be down to personal choice/experience and a doctor's opinion.
What does seem clear (again from experience) is that most of the mealtonin pills produced are rather larger than is needed.
Reading suggests we naturally release perhaps 0.3mg to trigger sleep, but there's tablets sold in sizes of up to at least 8mg.
It's again just personal experience, but taking perhaps 1mg about 1/2 hour before sleepy time works quite well. Repeated for a few nights until the body clock resets.
Perhaps 3mg if things are very messed up - but increasing the dose can lead to a slightly groggy feeling for an hour or two after waking for a few days.
It's also regarded as triggering dreaming, perhaps beacause it permits better sleep?
Anyway - it seemed worthwhile to put sleep on the table for consideration as an important factor in staying healthy by those of us with auto immune/thyroid/fatigue type issues too...
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Second GP visit following private Thyroid Panel
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