I was wondering if anyone had developed sleep apnea and could link it to anything to do with their thyroid condition?
I had my thyroid removed 7 years ago. In the last few months I’ve been waking myself up multiple times during the night with ‘snorts and gasps’ like snoring but literally just one time. From What I’ve read this could be sleep apnea. I wake up with an extremely dry mouth and my tongue feels enlarged and has ‘scalloped edges ‘ Just trying to establish if they are linked!
additionally. The don’t know if it’s linked but Ive been getting bad acid reflux at night. Every time I roll into my left hand side it happens and just exacerbates the broken sleep.
I believe sleep apnea and hypothyroidism are linked. Also bring hypo reduces stomach acids which goes hand in hand with reflux. Need to post all thyroid bloods with the ranges and hopefully someone will advice..
It sounds like you might be under replced, or havent yet optimised your vitamin levels so that your thyroid hormone can work as well as it should.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Do you do tests as per the protocol recommended here?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the 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.
I had a whole raft of blood tests about two weeks ago due to all these symptoms and generally feeling rubbish. From looking at them on the NHS app I can only see the TSH and Ferritin were tested that you have mentioned above
TSH 1.69 (0.38-5.3)
Ferritin 85 (11-307)
Ferritin isnt too bad. Optimal said to be around 90-100, BUT you can have good ferritin & poor serum iron. To check that you need an iron panel which either GP can do or you can buy a test privately.
Your TSH is well over 1 where most people feel well. NHS often dont test FT$ & FT3 as well which is what we need for the full picture of your thyroid health.
You could push GP for an increease on a 'trial' basis which often goes down better. Likely you still have hypo symptoms at that level.
For vitamin levels, if GP hasnt tested folate, B12 & D3 then suggest you ask them, if not then buy a private test. Start a new post when you have the results.
at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Next step to optimise both thyroid and vitamin levels.
Sounds like you need dose increase in Levo or vitamin levels are off
You need to get FULL thyroid and vitamin testing
Request GP test B12, folate and vitamin D
Enlarged tongue common when hypo and/or low B12
Just testing TSH totally inadequate
You need TSH, Ft4 and Ft3 tested together
Request GP do this
Or test privately
Which brand of levothyroxine are you taking
How much levothyroxine are you taking
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)
Testing options and includes money off codes for private testing
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/testing/priva...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Hello Trying - To - Juggle :
Just for reference a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 x more powerful than T4.
T4 - Levothyroxine is a pro-hormone and needs to be converted in your body into T3 the active hormone that runs the body and in order to utilise and convert well T4 into T3 we do need to maintain optimal levels of ferritin, folate, B12 and vitamin D.
Some people can get by on T4 only - Levothyroxine.
Others find that at some point in time T4 seems to stop working as well as it once did and that by adding in a little T3 - likely at a similar dose that their thyroid once supported them with - they feel better and their thyroidal hormone balance restored.
Others can't tolerate T4 and need to take T3 only as you can live without T4 but you can' live without T3.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into a powder, medically graded, and made up into tablets and or capsules, and the original treatment for hypothyroidism used successfully for over 100 years.
Currently your primary care doctor can only prescribe T4 and you will need a referral to an endocrinologist for any other thyroid hormone replacement and it has become something of a post code lottery due to ICB/CCG restraints with some hospitals facing financial constraint and endo's working to guidelines rather than patient medical need.
Obviously if you can go private all treatment options are available and Thyroid UK the charity who support this forum hold a Patient to Patient list of recommended thyroid specialists NHS & Private which you can assess by contacting admin @ thyroiduk.org requesting same.
So - in the first instance in order to know if these symptoms are related to your thyroid health and thyroid hormone replacement -
we need to see how well you are able to convert the T4 into T3 and so need a thyroid function test to include a TSH + Free T3 + Free T4 blood test result and range -
it should be an early morning by around 9.00 am fasting blood test and having left around a 24 hour window from your last dose of T4 - so we measure what your body is holding rather than that just ingested-
ideally if your doctor will run the vitamins and minerals as well, this completes the jigsaw and possibly it may just be a case of ' juggling in ' some vitamin or mineral supplements to improve your health and well being.
If taking any vitamins and minerals that you are testing - stop for around a week before the blood test so we measure what your body is working with and if taking anything containing biotin again stop the week before as biotin is known to ' mess ' with the assays used in some Laboratories.
A year ago you posted re high cholesterol - also indicating not on high enough dose Levo
You had very Low Ft3
thanks all for your comments and advice. I currently take 100mcg five days a week and 125 twice a week. I take in the morning on walking but am not always great at waiting to eat or drink so perhaps changing to bedtime may make a difference.
I still can’t believe e how everything is so linked. I’ve not had my cholesterol tested since that previous post when I went to the GP and had ‘proper tests’ done much they said were ok and not as high as the finger prick test had indicated.
This sleep stuff is fairly new and concerning me. The noises I make that I take me up scare me and my tongue just feels three sizes too big for my mouth!!!
I’ll try and get an appointment at GP and push for those tests or look into a private one but not a fan or doing a finger test myself. !!
my tongue just feels three sizes too big for my mouth
Ah, the other thing you might want to check out then is what your B12 levels are like (and folate too).
Being undermedicated for not having a thyroid can lead to gut absorption issues, including not absorbing enough vitamins and minerals from your food, no matter how healthy your diet.
And B12 deficiency can sometimes result in having that feeling that your tongue is too big.
Hi Now that is strange because I have Sleep Apnoe also now. Never had before. I am on 75mcg.
~ I consulted Sleep Specialist when my previous Dr did not take me seriously. Told Dr I had a feeling I stopped breathing at night and had done this off and on for year's but I thought it was connected to a genetic heart defect I have.
Transpired I stopped breathing 19 times per hour so well worth you going to a Sleep Spec. to rule this out.
I have hypothyroidism but not diagnosed at that time - was told that it can be inherited as I did not portray typical characteristics of someone with sleep apnea (not overweight/nondrinker) so there are many facets here to ponder.
Best wishes~
I have had an underactive thyroid for 30+ years. My husband started to complain about my snoring over 15 years ago. Being busy and because he also snored I didn't worry about it. Then about 8 years ago I had a tonic colonic sizure while asleep. Due to this I was tested for sleep apnea although the neurologist said it would not normally be the cause of a sizure. I was tested by the sleep clinic and told I had sleep apnea and had to use a cpap machine. I had a further nighttime sizure while using my cpap machine. So, I am now on epilepsy medication for life.
The noise you describe sounds very much like sleep apnea. I think you should ask for a sleep test. Some people think sleep apnea is just snoring but my sleep results showed that I didn't get any restorative sleep.
Hi, just wanted to share that I had Thyroid removed and also developed Sleep Apnoea. I was given a CPAP machine and it is the best thing to have happened to me - apart from the help I received here. If you need one too - the tests are really easy - it will improve your life immeasurably. It does take some getting used to though and is worth sticking to it. Looking back I was in an awful state but hadn't realised. Sleep deprivation can really change you, and impact your physical and mental health. Interestingly after two weeks on the machine, my libido returned and various aches and pains receded, and I was able to exercise more and do more with my young son. Do fight to get the right level of levo to support you - the admin's on here really helped me. My stomach acid was low and I had reflux too. All gone and managed now. Some of the best help was how to talk to the Dr and how to make the most of the appt! Also, if you're on HRT and can take it stay on it. There is enormous benefit there. Best of luck with your journey.
Thank you so so much. Feel I could have written some of what you’ve said. I feel so rubbish all of the time and it’s impacting on my relationship with my husband and kids and my work. I have no libido at all and am 45 so guessing I probably need to look at HRT too. Combining this with an ongoing painful back issue that I’m awaiting surgery for and then just feel broken and useless most of the time
I’m going to do one of the Thriva tests I think and then go armed with this to the GP to have discussion about referral to sleep specialist and HRT too. Might need to ask for a longer appointment!!!
If you can't get a longer appt, then prioritise what would be important to you to address first. Ideally the Dr should treat you holistically and want to know all about you but this is impossible in a 10 min appt. This may help. Things I have learnt on my journey with guidance from here: FIRST - for any Dr visit, if you can, take a typed record of your symptoms, how you feel and what you are currently doing to help yourself - inc medication, supplements, diet etc. I found I always forgot things as not well and functioning properly, or sometimes their questions or understanding weren't relevant. You can hand this to the Dr too and they can use it for their notes (hence typewritten). 1) If you do not have a Thyroid, the NHS should be testing both T4 and TSH in blood tests (Phlebotomy nurse told me this). Raise that if they refuse. 2) Look at the Nice guidelines for Hypothyroidism and treatment - it clearly states that the Dr should listen to patient and their symptoms. TSH is a guide and is not accurate for all people. (it is not in my case and I have no thyroid like you). Raise this if you feel you are not listened to. 3) I was constantly offered statins for high cholesterol - I did not need them, what I needed was the correct dose of HRT and Levothyroxine to support my liver to manage cholesterol. Mine is fine now and I didn't change diet or habits to get it that way. (I did this before I lost weight or exercised) 4) Weight is difficult if undermedicated - esp for me also as I have v curved lower spine and it is always painful (different to you but probably similarly impacts ability to exercise and move). I followed advice on here and gave up both gluten and heavy carbs (starches). I dropped 10k over 8 months - interestingly much easier once I had my levo increased (and looked at appropriate supplements for me VitD, B12, Folate (all initially sublingual due to low stomach acid - results were startling). I took up swimming as I reduced in size and that has helped enormously (just moving/exercising in water (inc treading water) sometimes rather than swimming lengths). I am now (1 year on) much fitter and have muscles! and also now do Aqua Aerobics once a week. Just renewed my membership - money well spent. I work part-time and care for family members and know that time for yourself is really important - boosting wellbeing. Swimming and the community I have found there has really helped - before that, this community, really helped too. Feeling understood, not alone and part of something. Finally, do think about HRT - for people like us bone health is extremely important, you can request a DEXA scan but the best thing you can do is ensure diet is good and absorbed, levo dose is correct and HRT is supplementing your natural oestrogen loss. You're welcome to stay in touch if you think our journeys are similar. I'll also help with the info I took to the DR - she took me seriously after that. Again, best of luck. Sarah
This has similarities to me 20-25 years ago….i was fairly newly diagnosed as hypothyroid and on 150 levo.but still feeling awful, and went to a private endo. who thought symptoms might be sleep apnoea …tested ‘no’, but what he ignored was FT3 was 3%. Tested again a few years ago as Long Covid giving me low oxygen levels, but again not the culprit as ‘mild not treatable’. How’s your FT3, can even link to poor creation and maintenance of collagen/ tendons etc ( which was my major health problem since my late 20s, now much better but get spinal manipulation by gently McTimoney chiropractor every 6-8 weeks)?
I have had Hashimoto since 2006 and still have my thyroid. I really feel like the Hashimoto's wrecks havoc on my whole body. I've been having trouble with falling asleep, staying asleep and fragmented sleep. I have an appointment to have a inpatient sleep study on Wednesday. Hoping I can get some answers and get a better night's sleep. What I have read is that Hashimoto’s thyroiditis increases the risk of sleep apnea due to muscle weakness, airway swelling, and impaired neuromuscular control from low thyroid hormone levels. Sounds like you could possibly have sleep apnea. I would try to get your primary care provider to refer you to a Sleep Clinic for further assessment. It's very important to get a good night's sleep and it increases the risk other health problems if your oxygen is dipping too low.
how’s your BMI? My husband has had a non functioning thyroid and takes meds for it. He had terrible sleep apnea ( sounded much like yours and terrified me!” His BMI wasn’t bad. He’s tall and slim and easily hides weight.
However 4 years ago I began a KETO eating plan to deal with inflammation and colitis and he ate along with me. He lost 15 lbs, and his sleep apnea disappeared, after many years and a drawer full of masks!
He recently dumped all his masks and doesn’t even see the pulmonologist anymore. I never recall him sleeping without very noticeable snoring. I now poke him periodically, to make sure he’s alive. 😉🙂. (After sixty years together, that’s allowed). And yes my colitis is also gone as well as arthritis pain…no longer take meds for either. Not pushing any diet…just saying… food for thought.
and yes, I dropped 20 lbs, and went from BMI of 25 to 21. On my own…doctor didn’t advise losing but now says..whatever is working is working.
My BMI is 25. I’m quite petite so even a few pounds makes a difference I think. I’ll look into Keto. Thank you.
good luck with keto. There are many good ( and no so good) on utube. check out Dr. Eric Westman, specializing in Internal Medicine and Obesity at Duke University. He’s been teaching Keto and running their weight clinic for over 20 years. His plan is the no garbage deal. And you need not buy anything besides a basic book or list of foods on line. Choose the foods that you enjoy . Let us know how it goes. Sure works for a lot of people.
I was diagnosed with sleep apnea after my thyroidectomy.
But I believe, from a few changes from CPAP, that I have actually had it my entire life. And would add that one does not know what lowered oxygen saturation, from sleep apnea, could be doing on any of our organs over years. I would say that was more of the connection, undiagnosed sleep apnea.
CPAP has changed my life and I will continue to talk about it on this section because we can not always assume everything is thyroid related. There are many overlapping symptoms. And many talk about how they wake up to go to the washroom anyway so they take their thyroid meds in the night. There is a connection between urination at night, frequency/urgency & sometimes even bedwetting when apnea becomes serious, and sleep apnea. It is a brain/bladder connection - just not waking up due to the apnea.
Also, some do not get tested because they sleep fine. Some people with sleep apnea can sleep a long time no problem but they never feel rested. So it is not always a waking up phenomenon.
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And as jazz has already mentioned, b12 deficiency can be the source of your tongue issue. Had that, with about thirty-one other symptoms - most that went poof with b12 shots
All the best.
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