Hi all. I wonder if anyone could offer advice please? I'm a male who was diagnosed with Graves disease which caused hyperthyroidism. I had radio idoine treatment for this nearly 10 years ago which left me with hypothyroidism.
In recent years I have developed sleep aponea which seems to be getting worse. Could what's left of my thyroid gland be causing this as it ruining my life. I can't tolerate CPAP, have lost several stone in weight and prior to the sleep aponea and was a regular gym goer. My thyroid is apparently well controlled on dual therapy eltroxin and liothyronine. I'm exhausted all the time and often choke at night for periods.
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Shredder29
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You haven't posted in a while. What are your latest thyroid results, also key vitamins - ferritin, folate, B12 & D3?
OSA can be linked with low levels of Omega 3, so taking a high dose supplement containing good levels of EPA and DHA may be helpful. Can recommend Bare Biology liquid.
Thank you for taking time to respond. I don't know my thyroid levels but do feel fine on the dose I'm taking. I take an Omega supplement and eat plenty of foods rich in Omega 3. I have only ever tried one mask and the machine I was given alternates the pressures so that it is continually adjusting to demand. I just can't sleep with the mask on. My sleep clinic have tried to be helpful sort of. They didn't do any tests to see if I have enlarged tonsils or obstructions they just gave me a machine after the sleep tests. I just wondered if I could still have an enlarged thyroid gland despite RIA (excuse my ignorance) I'm not sure how this works as most info available on thyroid conditions is aimed at ladies.
There are a few causes of OSA and I've not heard of an enlarged thyroid gland as a cause. It can be a receding jaw, thick neck, weight, narrow airways, there are quite a few but usually they just treat with CPAP.
You're not alone at all in struggling to get used to CPAP. Many thousands of people say they can't use it to start with but with perseverance, maybe using it while you're watching TV late at night to start with, different masks, maybe a nasalmask instead of a full face, theres lots of things to try.
All those who initially majorly struggled with it eventually get used to it and then wouldnt be without it.
I used to have a swelling in my neck before RIA but no longer. I was a regular gym goer and my neck is around 16 1/2 inches to 17. It used to be slightly bigger but I have lost weight recently. Strangely my sleep aponea has become worse.
It doesn't sound like you have a neck swelling and I think you would know if you did.
I'd recommend getting your thyroid levels tested privately so it shows your FT3 level and do the test as per the recommended protocol. See what your numbers look like. 75mcgs Levo is a lowish dose in combination therapy.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with any autoimmune thyroid disease
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
I was on 20 liothyronine but I had awful insomnia so dropped to 15 and feel better for it tbh. I was doing exceptionally well a couple of years ago but I haven't changed anything but my sleep aponea is seemingly becoming worse.
I’m confused about the quote in this article, and I’m sure I’m not the only one. “In the non-elderly population, the progress of OSA may promote the increase in thyroid hormone (especially FT3) levels”. Is this saying that as OSA gets worse, thyroid hormones increase? Thanks
I do eat dairy. I am slightly overweight but OSA makes it extremely difficult to lose weight though I lost a lot of weight after an appendectomy recently
It's tough but resistance training (start with what you can do and build from there), more lean protein, and consider jamming yourself on your side or with head elevated when you sleep. Try eliminating dairy nnif it has a benefit stay off it.
apologies for wading in however, have you been tested for diabetes? Weight loss, exhaustion and sleep apnea can be a sign (although can be a lot of things) just with you already having one autoimmune … can end up more susceptible to others … lived with type 1 diabetic for ten years so it’s something that makes my ears prick up. Fingers crossed you get to the bottom of the issue very soon x
I've just looked back and seen that I wrote to you some 5 years ago when I was just starting out self medicating as I couldn't get any treatment options in my ' neck of the woods ' though you at least had more luck in Wales, at the time.
I think a full thyroid blood test alongside the core strength vitamins and minerals will help us understand better what's going on :
Just as an aside - I found NDT the better option after RAI thyroid ablation for Graves Disease.
Just a quickie Shredder29. I tried different masks. Major win. Then I got a machine which could help with dryness of nasal passages etc. Your machine is even more sophisticated re: adaptive pressure.
Odd things, like getting used to the mask with no intention of sleeping with it but just getting used to it, like Jaydee suggests, watching tv or reading.
My mask now just covers my nose. More freedom to sleep on my side if I wanted. Immediately felt the benefit due to greatly reduced claustrophobia and ‘air hunger’ type goings on.
hi shredder29 I’m similar to you ,I am hypothyroid under active and I also have sleep apnea which I’m trying to get used to the machine but it’s really hard to tolerate,the sleep clinic also told me it was a weight thing ,I was never told anything else and I haven’t slept properly in years ,apparently losing weight is supposed to help but I don’t think that is the case ,maybe for some people but not everyone .
The thing is I have lost weight and only put it on initially when my thyroid was badly managed. Sadly with sleep aponea it is virtually impossible to lose weight if you can't tolerate CPap
your definately right , I can’t tolerate the cpap machine ,I try but it’s impossible for me as well ,I don’t know much about sleep apnea I was diagnosed last year in September and I feel like I’m getting nowhere xx
Hi Shredder, I am hypo, overweight and have been diagnosed with sleep apnoea. I would suggest you go back to your sleep clinic and ask for a different mask, I have a full face mask and one mask which fits under the nose, which I much prefer. The guy at the clinic was really helpful and just gave me the different mask as I couldn't get on with the original which I have as a spare. Good luck with a resolution.
Hi Shredder29, check out IQoro (Swedish) its a small devise you use cpl mins before meals, I read its sometimes availible on NHS. Its not cheap but I its helped me, maybe worth a go? 🤞
Do everything you can to get used to CPAP. Proper mask, fit, and pressure are places to start. Go on Reddit, CPAP section - people will help you. I have a full face mask resmed F20 (people are raving about the new F40, not here in Canada yet). The nurse said they always start people out with the f20 as it has a good chance of compliance.
I delayed due to vanity & ego, had no interest in fulfilling my prescription. Now I would fight anyone off who tried to take my CPAP. I am absolutely bewildered every single day by the changes that I had no clue were due to sleep apnea. I am only a month or so in. I was lucky. I did not sleep at all the first night but the next night was used to it. Do check out CPAP Reddit, there are compassionate & educated people to help with compliance issues.
Also, could be a coincidence but my t3 was up on my last test out of the blue (no liothyronine) Might be yet another plus of CPAP for me, as Slow Dragon added.
How do you know this Petgirl2, about levothyroxine?
And you're on no thyroid hormones right now, despite Hashimoto's? Does that mean you think that no hormones mean that the apneas have ended & how would you know that? (Asking to make sure I am understanding properly & because I was not always conscious of the apneas).
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For those reading, and with Shredder, I am on a very high level of levothyroxine & had multinodular goitre (no longer - thyroidectomy). For me, I know 💯 that neither caused my sleep apnea. Why? I have strong indications that I have had undiagnosed sleep apnea for many decades. And in tandem was actually sent for a sleep study in my twenties, but the results got lost in the shuffle (if I have the time period correct - one of my GPs leaving and me moving) and being young I was like Whatever & didn't even know why I was sent there as I never complained about sleep.
don't know if this helps - I have enduring sleep apnoea from the damage done by my multinodular goitre which also grew below chest bones and impacted my lungs. Since removal I am slimmer but still need my CPAP. Initially hated it but grew to love it when I realised that it improved my sleep and then my health and also restored my libido (missing for a number of years) to amazing levels. It was worth the 3-4 years it took me to get used to it. I had nightmares, tore it off during sleep and felt shame and anger at first. Now, I listen to friends talking about the lack of good sleep and the impact on their health and mental health. I am lucky.
Best of luck with your journey - do remember that your life will be longer and healthier if you manage to persist. It will also positively impact your family and friends around you.
Great post. Multiple times a week I go Wait, that was sleep apnea? Because of the changes. It is unreal. And yes it impacts those around us.
I didn't have a temper and could be extremely skilled with emotions outside of a moment of confrontation. But what has changed is I am hugely less reactive in the moment. Last week I had something extremely frustrating happen to me. And I just handled it succinctly, without a boatload of emotions. Saved that person from an onslaught. And I looked at myself and went Huh? It has taken a few of these situations to realize what was not an actual personality trait, but sleep apnea.
As for sex drive. I had no clue that I even had any issues with that or responsiveness. The difference with CPAP has been wonderful.
Just last week I realized my just cut nails had grown long again. Continual Huhs?
I guess these are things that happen when a low oxygen saturation in sleep, 78% at its lowest, is helped.
I have both Hashimotos hypothyroidism and sleep apnea. I hate the mask, but don’t want to die in the middle of the night because I stopped breathing. I tried different mask types before finding the best one for me. I recommend you do the same. I still hate it but it’s the most tolerable for me.
Listen, you need to learn to deal with the CPAP. I’m sure you’ve done much harder things in your life, Suck-it-up buttercup, unless you want to play with death every night. And if you sleep with someone else you are doing them a disservice with your snoring and gasping all through the night.
There is one other possibility you may be able to try depending on a few items. I know one of the items is you can’t be overweight and another depends on how severe your sleep apnea is. I am actually doing a new sleep study tonight to see ifI qualify. I will try to keep you updated on any specifics.
The product is called Inspire. It’s a small medical device, installed under the skin of your chest on the right hand side. You use a small remote control to your right chest which sends a signal that causes your tongue to be pushed back up out of the way of your airway so you can breathe again.
Knowing I am willing to do this should show you how much I hate the CPAP machine. But guess what? I use it almost every night! Occasionally I pass out asleep before expected. I even take it on any trip that is more than just overnite.
So the bottom line is USE YOUR CPAP NIGHTLY until better alternatives become available for you.
Good Evening Shredder 29, I have had sleep apnea for nearly 8 years now and I have to say when I was told I had this condition and that I have to wear a mask I can’t tell you how I felt they gave me the machine and a really big mask to wear you know it took me over two years to get used to it I tried different mask I have to say I hated it but now I have a small mask and I use it every night yes I also have the under thyroid but you have to persevere I know it’s not easy but when you do get to use it it will help you you will feel so much better in the mornings you need to find that balance in the settings and what sort of mask you can wear.Also what I did has well when I watched TV I would put it on I did this for a month it really helped. Few weeks back I didn’t use it for a week because I had a cold and cough I really felt the effect of not using it because I stop breathing it might only be seconds but I know how I feel when I don’t use it. Plus I go to the gym 3 times in the week and do some walking I have started to lose weight and feeling so good. I know it is hard don’t give up you will get there. Take care.
Hello, I am a 50s male with Hashimotos and sleep apnea, I have posted on this subject in past posts though they are a bit messy as was in discovery mode. I have been treating Hashi for 5 years and sleep apnea for just two years and researched extensively on both subjects, might be something I can help with but reading your post wasnt sure what specific help you might be after. Feel free to reply of DM me.
context - I have a baseline sleep apnea mostly managed on CPAP but epsisodically (once ot twice a year) it is truly awful which I believe is auto immune flare ups which leads to myopathy which weakens my muscles including my throat (my pharyngeal muscle tone if pushed but I have no evidence). this causes sleep apnea or more a similar condition called UARS.
Adoption of CPAP can be difficult but I can maybe help here too.
I havent read all the other posts but am passionate about helping people with these two conditions so happy to see if can help.
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