Dear All

I have Hashis which is reasonably well controlled most of the time (88.5 x T4 every night). Am unable to tolerate T3 or NDT. I would be grateful for any insights on my sleep trouble - I get to bed usually around 10.30. I take my T4, get my head down, and then...after maybe an hour or so, I feel wide awake (wired and tired I suppose). This used to happen to me in the past when I took the Levo first thing, so I don't think I can blame that!

Is this a typical Hashimotos symptom ? Or could it be adrenaline/cortisol related. I am happy to research this problem but would appreciate any pointers or shared experiences.

Many thanks

21 Replies

  • If you have sleep apnoea, there'll be a stress response to force you into taking a breath. This usually repeats through the night, leaving the sufferer feeling constantly tired. It may be that you've caught it at an early stage, or you have a more extreme response, sufficient to fully wake you.

    Sleep apnoea doesn't necessarily imply snoring (there's a loss of respiratory drive in central sleep apnoea), so it may be difficult to record what's happening if you don't have a partner to observe you. I'd suggest you ask for a sleep study, which usually involves wearing some sensors overnight, in your own home.

  • Thats interesting too - my father suffered from sleep apnoea and I have noticed often, when I am just dropping off to sleep, that I do an enormous breath and wake myself up. Like my heart has done a big lunge! Also I am up numerous times in the night ostensibly to visit the loo, and my sleep pattern is mostly light and broken. Thank you so much, I will sort out a sleep study.

    Do you suffer from sleep apnoea ?

    Many thanks

  • Having to go to the bathroom twice or more per night is as likely a predictor of sleep apnoea as snoring. A hormone responsible for urine production is released every time there's an obstructive event.

    Yes, I have sleep apnoea, and use a CPAP machine supplied by the NHS. I first became aware of a problem when I was started on a beta blocker, in hospital. It had been a very tiring experience, with overworked and irritable staff (not allowed breaks) and a shortage of beds, so I was "thrown out" into a waiting area, where I had to stay for several hours, awaiting paperwork. Dropping off and waking many times, I caught myself lacking respiratory drive. After my sleep study the doctor was adamant that I don't have CSA, but I've obtained the software for my machine and it does still occur occasionally (no longer taking the beta blocker), with the more usual OSA being in the majority. I don't snore, and the sleep doctor was happy about my airways, yet my main problem seems to be in my nostrils. I no longer need to get up in the middle of the night, but I think it helped with reducing leg oedema.

  • Oh my goodness, what an experience for you in hospital! Can I just ask, how did you get the NHS machine ? And how did you get referred to the sleep doctor ?

    I have found a testing machine for SA which I can hire to use at home for 2-3 nights(very expensive) but I think I might splash out on that to speed things up.

    The info about the urine production hormone is most interesting - I have wondered why I keep having to 'go' when I haven't been drinking. Also, I am always tired - very rarely get a good nights sleep.

    So glad you no longer have to get up in the night - what a relief!

  • I'd already come across a mention for sleep apnoea in a Wikipedia article with suggestions for additional causes of tiredness when optimally (are we ever?) medicated for hypothyroidism. I'd been left on an antihypertensive which contributed to daytime sleepiness (NICE guidelines say I shouldn't have been on it!) and once mentioned narcolepsy to a hospital doctor, to no effect.

    Having escaped the oh-so-tiring hospital stay, at the follow-up GP's appointment I mentioned my new CSA problem and an appointment was arranged the same day, which was several weeks later.

    The test gear needed returning promptly, which could've been a problem had I not had the sleep study just before a holiday weekend. There's a list of sleep clinics at:

    I know two other users locally, and I don't think they would push for a test, so having an aware GP would help. Going armed with your Epworth Sleepiness Score can only help:

    There's a US-based forum for users, some of whom treat it as a hobby and go to great expense trying different masks etc. The NHS machines are good but if you need a humidifier you'd probably have to go without for perhaps the first year, when your progress is checked.

  • It could be thyroid or adrenal. Do you know if you're optimally medicated (tsh low, t3/t4 high in range)? Do you keep an eye on your pulse, temp and gut? If you're sensitive to thyroid meds it could be a matter of needing a tiny bit more or less levo.

    For me disturbed sleep (light and broken) is a hypO symptom but tired/wired and trouble shutting off at night are hypER symptoms.

  • Thats so helpful especially as my sleep is light and broken (4 trips to loo most nights) and my fitness monitor details mainly light and very broken sleep I am very sensitive to medication so willl increase my Levo slightly - cant take T3 unfortunately, have tried synthetic and NDT.

    Yes could also be adrenals - I forgot about them. I am taking kefir for my gut which seems to be helping, but I will start checking my temps first thing and get back to the salt etc. for adrenals.

    Thank you so much for your advice

  • You may also want to try limiting fluids before bed. :-)

    If you're v sensitive you can try a tiny dose increase (quarter of a tab every other day or similar) and see how you go. If you're super-sensitive I believe you can dissolve a tab in a measured amount of water. For instance if you want to increase by 10mcg every day (hard to do in tablet form) you can dissolve a 50mcg tab in 50ml of water and measure out 10ml of the solution every day (easy using a syringe). That also gets around the issue of the hormone content of the tablets not being evenly distributed throughout the filler. I should add this is not necessary for maybe 95% of us, but worth knowing if you really have issues changing dose.

  • Gosh what a good idea, dissolving the tablet in water...I'm afraid I am that sensitive to increases, but that should help a lot. I can get the small, gentle doses that way.Thank you so much, I am really grateful for your help

  • Shake well before drawing up the dose. :-)

  • I had a similar problem for years. I could wake up after 30mins convinced it was time to get up. Sleep improved when I was correctly medicated.

  • Thank you for reply. General consensus of opinion seems to be medication level related as you also suggest. I will try increasing my T4 a shade.

  • I wish I had answers but I am the same. I have real problems getting to sleep but when I do I always wake and I mean I am wide awake at 4am or before this it drives me nuts. I don't even come out of the sleep slowly it is literally open eyes and wide awake. Someone else was saying cortisol levels can be linked to this so I am thinking of getting mine checked out.

  • Yes I think I will do the saliva test again. Did it a couple of years ago, before I really understood this thyroid business (!) and Dr was totally dismissive of it which was annoying. Now, with the help of this forum its great to get so much informed help and guidance. Good luck with yours too

  • I don't take T4, but if I take T3 or NDT any time after lunch, I'm wired all night.

    For years, I was wide awake from 3-5am. This stopped when I started THs, so perhaps your T4 dose is insufficient, & it's making your cortisol overactive.

  • Thank you. Thats a very good suggestion as I have been feeling like I am slightly undermedicated . Will try a small increase. Am very sorry to say I can't tolerate any T3 but wish I could

  • You're welcome!

    Have you tried different brands of NDT & T3, & tiny doses?

    If I'm undermedicated, I crash at 4pm, & I'm wide awake 12 hours later.

  • not for a couple of years -tried T3 only which made me really ill -lost 2 stone in no time and terrible palps etc. So I got scared of it. maybe I should try again -do you think 2.5 mcg would be too small to start with ? I tried Perrigo T3, Cytomel from Mexico, naturethroid and Erfa..

    do you have an opinion on which might be gentlest ?


  • Sorry, I've only taken uniPharma, which is weak compared to WP Thyroid. I take either 75mcg of T3, 2 grains of NDT, currently 37.5-50mcg of T3 & 1 grain of NDT.

    2.5mcg seems a very low dose, even if it's stronger than UniPharma. It's only about 7.5mcg of T4.

  • Hi, This won't be much help but I have Hashimoto's and I have similar problems with sleep. Sometimes it catches up with me and I go for a lie down really early maybe around 6 or 7pm and apart from getting up to go to the loo I end up staying in bed all night!

    Sometimes I just lie there thinking well it's best to at least be lying down and resting. Other times I come down and make a cup of tea if not too tired then lie down on the settee or fall asleep in the chair.

  • Thank you. It is reassuring tp hear other people have similar troubles even if we can't do much about it!

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