I’ve recently reduced my Levo dose because my T4 was 93% through the range and I was having palpitations. I was on 100mcg so now on 75mcg 4 times a week and 100mcg 3 times a week. Energy wise this is actually the best I’ve felt so far. Unfortunately the insomnia has worsened in the last few weeks where I’m waking up at 4am and can’t get back to sleep it’s very annoying and tiring. At first I thought it was maybe over supplementation of folate or B6 so I stopped them to see if it helped but it hasn’t so now I’m thinking it’s probably the Levo. I’m going to reduce to 75mcg a day see if that helps. Has anyone else suffered with this and found a solution. I’m taking nytol and melatonin intermittently to help me but I don’t want to do them long term.
Worsening insomnia can anyone help?: I’ve... - Thyroid UK
Worsening insomnia can anyone help?
ockerdoc, it might have been better to reduce by 12.5 mcgm only on a daily basis. What brand of medication are you taking? Do you always have the same brand?
Waking at 4am is a classic symptom of low cortisol so your body gives you a shot of adrenalin instead... if you have been Hypo for a long time which most of us have before diagnosis then the adrenals have been holding us up and get fatigued.
I'd suggest adding adrenal cocktails to your day to help feed them up 🤗
Thank you 🙏 I’ll have a look at some adrenal supplements.
Many of us use Adrenal Cortex rather than Whole Adrenal that may contain adrenalin as it includes the Medulla 🤗 watch out for things that contain Ashwagandha as this can raise or lower cortisol 😕
Can you recommend any? Is the Thorne one any good?
Thorne is quite expensive and a low dose, many use Adrenavive (contains Nucleotides) the-natural-choice.co.uk/do... or Klaire Labs
I do have some Pure Encapsulations Adrenal which I have no issue with but do contain both medulla and cortex
I'll try and find the dosing info... drmyhill.co.uk/wiki/Conduct...
That’s great thanks 🙏
This was the one I was looking for 🤗 you can see it becomes quite expensive as you need it for a while so I swapped to Hydrocortisone
I don't think this lot ship to the UK but it has a good explanation
Hi ockerdoc , I found Thorne ACE to be ideal for me. I used it for a couple of years and had no trouble coming off it.
Thank you did it help you sleep ?
Yes, it did ockerdoc . I don't seem to have many problems with sleep if I keep my FT3 in check at around 5.7 (3.1 - 6.8) for me.
TiggerMe & nightingale-56 , did you have to take adrenal supplements prior to getting your Ft3 in a good place (in order to tolerate the meds) or in your experience, can getting Ft3 to the needed levels bypass the need for additional adrenal support without too many issues for too long?
Similar to ockerdoc , I’ve long had issues with the doses of Levo that me feel better conversely also causing me insomnia (and, most often, also increased anxiety). I lived with good energy but poor sleep and anxiety for many years, and then dropped my t4 to add t3 and have since been on a (long and complex) journey to get both to the right levels again. I recently reached a tipping point again with liquid t4 where I got to a level that I felt great energy-wise but couldn’t sleep again (both falling asleep and waking early), so have dropped down a bit and am sleeping better now, and planned to shortly begin working on titrating up my FT3 with an increase of my T3 dose in hopes of getting more energy without the insomnia. I hope that will do the trick and precludes the need to wrap my head around adrenal issues (on the few occasions I have had exposure to exogenous cortisone in the past it’s made feel unwell), but if the ft3 doesn’t help or I have difficulty tolerating it (hope I’m not jinxing it by saying that 😬🫣😫) I’m thinking I may need to confront the adrenal aspect and give supplementing them at least a shot in case I can tolerate it.
Will create my own post to ask for more detailed help if that happens, but since this is such a similar discussion and I thought it might help Ockerdoc as well, thought I’d ask here about in what order/how you would recommend incorporating adrenal supplements into Levo/lio dosing? In your experience, once you add adrenals into the mix, does one need to wait a length of time to then attempt increases of thyroid hormone doses (and/or do adrenal supplements themselves have a direct impact on FT3/FT4 levels)? And how do you dose adrenals timing wise with split daily doses of t4/t3 meds? And, a very noob question, but how do you know if they’re helping/not helping (do you just feel better?)?
Thanks for any input!!
First thing I would say is have you tested you cortisol levels? If not grab one of these tests to see what is going on and then we'll go from there, low cortisol presents the same as high 😵 so you really need to check
regeneruslabs.com/products/...
Adjusting your T3&4 dosing to tie in with times when you cortisol is in a good place certainly makes a difference
Thanks Eeyore! Interesting about the symptoms being similar 🤔
Had morning cortisol tested several times in last several years (sometimes closer to / slightly after 10 am tho) and results have been in range between 12.8 -18.8 (range 6.1 - 19.4), most recent in February being 12.8 around ~10:30 am. A 24 hours total cortisol urine test a couple years ago came back normal. Are those sufficient tests and does it seem like I’m good?
FWIW, most of my life I’ve been a night owl and gotten a surge of energy and felt sharpest at night. After starting levo I’d have plenty of energy in the morning even if I didn’t sleep, but get uncontrollably sleepy in the afternoon. Since things have gone awry with thyroid stuff last several years, I’m often kind of in a daze during the day - though all daytime issues less problematic when I’m sleeping better. One of my adrenal glands i believe is atrophied.
The trouble with blood serum testing is that they just give you the Total cortisol, the saliva tests give you the Free which is what we really want to know.
When do you take your thyroid doses at the moment?
Oh I see, thanks. If things don’t go well with raising my T3 dose I’ll look into how to get saliva cortisol testing then (unfortunately I think expensive here in the states) and create a post for additional input.
Currently thyroid doses are a bit loosey goosey because I’ve had months of crazy sleep patterns, about 9 am first doses (50 t4, 5 t3) and 6 pm second dose (16.25 t4 [recently drop], 5 t3). Now that I’m starting to sleep better again with lower t4, hoping to start taking the doses 6 am and 4 pm, and will add 1.25 or 2.5 mcg t3 to morning dose in 2-3 weeks.
Sorry, I forget you are over there... might not be as expensive as you think as ours get sent over to you!! Labrix Illinois
Chances are, from what you say your cortisol level is good in the morning and at night, have you tried taking all of your dose in one go? Sounds crazy when you say you struggle to tolerate it but it could well be that your later dose is when you cortisol it low (hence you feeling sleepy, cortisol keeps you awake) T3 later in the day doesn't work for me as my cortisol is only good in the morning, before increasing your T3 I'd suggest gradually upping the morning one taking from the evening dose.
I always split my dosing and my energy bobbed up and down, then I changed to 1 morning dose and everything smoothed out and I actually needed less T3 than when splitting!
No more afternoon crashes.... experiment with timings before adding more
Some folk take it all at bed time and say it helps sleep so with you being a night owl that might be your thing? 🤗
Hmmmmmm, interesting ideas, thanks Eeyore! Lots to think about… (though a wee bit scary😅, big change)
You say you needed less t3 overall when taking all in one go — curious if the change affected your FT3 blood levels?
A couple years ago the highest T3 I could tolerate at one time was not much more than 5 some mcg (and later switched to Mayne brand T3 which is more crumbly so just stuck with full pills for each dose), but things have changed of course since then so hoping I will be able to now.
I will let this percolate in my half-brain and will likely experiment as you suggest. Recent seemingly benign experiments with t4 have been EXTREMELY difficult to get through so I’m a bit trepidatious now but with t3 being faster acting and not switching formulas or anything else, hopefully the impact of timing changes will be easier to manage (and change back if necessary). (Also just running out of time to get back on my feet so can’t absorb big risks anymore that could make things any worse and lengthen recovery.)
Thank you 💕
It all came about when we were discussing the importance of cortisol (not too much or too little) to allow the T3 to get to the cells... not much use in the blood
At the time I had been splitting up to 25mcg throughout the day, when I biased this to more in the morning I didn't need the later dose to pick me up, it made little difference to my levels 8-12 hours after dosing... I'm pretty settled on 100mcg T4 with an extra 50mcg twice a week and 15mcg of T3 all taken first thing... perhaps I'm a slow metabolizer? It's about finding your rhythm 💃 rather than adding more
Do you ever go to this website they have some really useful information.. below is a excerpt from this page... thyroidpatients.ca/2019/11/...
T3 Dose-splitting effects on FT3 / T3 levels
In the history of thyroid therapy, desiccated thyroid (NDT) has been routinely dosed at least 2 times a day, and T3 monotherapy about 3 times a day.
A person taking a very small dose, or a person who is a very slow metabolizer, could be fine with a 1x/day dose.
These graphs show why we split the dose in T3-based therapy: to avoid daily hypo / hyper rollercoasters that can cause daily discomfort to us, and to bring down the height of the Peak FT3, at which point T3 is triggering its own inactivation to T2 hormone secretly within our cells as we continue to resupply it by dosing.
Thanks Eeyore! So sorry for the delayed response -- hope you're enjoying the holidays! (And happy holidays to you as well ockerdoc ! Sincere apologies that this has gone on an individualized tangent now well away from your initial post, esp if you have no interest in T3 dosing!)
Yes! Have read several of Tania Smith's blog posts over the years and actually largely based my dosing on one with much of the same info!😄 thyroidpatients.ca/2020/07/...
Someone pointed out that in the charts of healthy thyroids, the daily variation in the T3 circadian rhythm is relatively small compared to overall T3 levels which remain mostly steady through the day, so that's kind of what I've kept in mind with typically trying to have a slightly higher dose in the morn and keeping the doses as evenly spaced as possible without getting too late in the eve (never really liked T3 at bedtime - seems to mess with my sleep quality - tho may try again in future). BUT completely agree with you that it's trial and error and figuring out what works best for one's own individual body and complicated individual factors! Very clear by the fact that there are many on here feel they do best with a daily single dose of T3 even on T3 monotherapy.
FWIW I seem to have a fast metabolism overall and am VERY sensitive to both T3 and T4. Took 2+ years of slowly raising T3 -- with highest tolerable single dose maxing out at 5.63 & needing at least 7 hours between doses-- to get to 10 mcg! And until switching to Tirosint a year ago, doses of t4 that raised blood levels beyond bottom of range have given me insomnia (now on Tirosint, am maxing out at probably ~35% thru range). As a result, have been consistently undermedicated with a long list of hypothyroid symptoms, and have acquired a solidly effed-up circadian rhythm from long-term sleep issues on 8 yrs of higher dose T4 monotherapy previously (and from several trials of slightly increased T4 in past few years). So as you can see most likely multiple factors are contributing to my ongoing afternoon slump & sleep difficulties -- tho certainly possible that my T3 dosing is one of them!
Worth experimenting, at least, so after our exchange decided to go ahead and just try my luck with the more significantly biasing T3 towards the morn in case things have changed and I can tolerate it now. Changed from a 5 / 5 to to ~7 / ~3 split a few days ago. Would have preferred to try 6.25/3.75 but impossible to split Mayne T3 with any accuracy and cannot find anyway to get anywhere close to an accurate quarter pill, so large half/small half seemed to be the most consistent way to go. Unfortunately, been having lasting heart palps after the morning dose. Also no immediate benefit in afternoon or night from the change. Well aware such a short trial is barely worth it and it takes a good 4-6 weeks to settle on any dosing changes of T3, but don't want to get into too much dose timing experimentation at the moment as my priority is to raise my T3 after my recent reduction in T4-- would like to keep things relatively steady overall, being already undermedicated.
So, thinking I'll take a couple days to transition back to my 5/5 split for now and, per your point of not taking T3 too late in the day, will try taking my doses earlier, perhaps 5 am & 2/3 pm. After I add in the 1.25 mcg of less crumbly Teva T3 to my morning dose (don't want to experiment with switching entirely to Teva atm as Mayne has been working relatively well), if I can tolerate that, at that point will consider experimenting with additional ways of biasing more towards morning if necessary -- perhaps splitting into 3 doses, or switching entirely to Teva to allow for more flexibility in splitting pills, etc etc.
Thank you again for your thoughts Eeyore🤗 Will create my own post for more help later if needed 🙂
Once I was on Levothyroxine in 1997 within 3 months I felt much better and my FT3 was then at 5.7, so I have tried to keep it at that level since. It went very much lower in 2010 when Goldshield Eltroxin went off the market and I was put on Mercury Pharma. My FT3 went to 4.9 and it caused skin problems. Am now on NDT and back to feeling much better. My Cortisol fell also when this happened and I ended up in A&E. They did not want to know, nor did my NHS Endo. This was just before lockdown and that is when I started taking Thorne ACE. Within 2 years I felt good again and just forgot to take it for a few days. I did not feel anyworse, and have not taken it since.
Thanks for sharing your story nightingale. Scary you ended up in A&E. What were your symptoms that landed you there? It sounds like your thyroid hormones dropping took your cortisol down with them. I know TiggerMe has talked previously about low Ft3 bringing other hormones down. Mine had likely been bottom of range for a decade while on t4 only; perhaps part of the reason it’s taking so ridiculously long to get better :/
Glad to hear you’re doing well now
My symptoms were an awful stomach pain and a feeling as if I was about to faint. I also had sharp pains in the region of the adrenals. Thorne ACE worked wonders for me and I then worked on getting my FT3 in a good place. Hope something works for you.
Oh gosh. Those are not the kinds of symptoms I was expecting to hear! So glad you found the solution and have gotten to a good place. Thank you for the well wishes nightingale 🤗 -- hope so too
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