Please help. Im loosing my mind with insomnia - Thyroid UK

Thyroid UK

131,637 members154,010 posts

Please help. Im loosing my mind with insomnia

dayoff profile image
70 Replies

I feel like a broken record so I'll try not to make this long.

20 years of thyroid issues. 13 years of Levo. Usual story. Insomnia being biggest issue. Can't take anymore. Yes i've tried EVERYTHING from oils to baths, no tv or screens, supplements ........ - I know its my thyroid. It gets better when my results are good and worse when they are not. Only now, my results seem fine. Apart from Total T3 which im told means nothing. In other words - we won't help you with this.

All my test results are good. I posted them recently. Free T3 good but Total T3 below range. Doctor told me it was fine as Free T3 is the important one.

Taking all the supplements. Don't drink. Not because i'm well behaved but because one drink makes me ill!

The GP gave me HRT patches despite being 46 with regular periods in the hope it would help with insomnia because of course 'it's not my thyroid'! The HRT is making me so, so much worse. Especially the Estrogen only 2 weeks. Then I swap to Progesterone/estrogen patch. Not much better. On top of that I feel anxious. You all know that knawing anxiety in your stomach for no bloody reason. It's physical and all thyroid patients get it when things aren't right.

So my question is, has anyone had positive results from Desiccated Thyroid and if so where can I get it?

At this point Id take ketamine just to get some bloody sleep :(

70 Replies
Jaydee1507 profile image

Thing is I don't believe your last results were fine. See this reply on your last thread.

Your FT3 was 24% though range which is far too low and you were taking T3 at one point but have now stopped.

Low FT3 will cause anxiety.

What dietary things have you tried? Are you gluten & maybe even also dairy free?

Suggest you email for a list of Endo's and get back on some added T3. NDT prescribers are also on the list.

dayoff profile image
dayoff in reply to Jaydee1507

Hi, thanks for the reply Jaydee. I am not Gluten or dairy free. As my Mum & Gran is/was severely affected by osteoporosis i'd be very scared to go dairy free. I've done many a Gluten free diet. I try to keep it to a minimum and my weight is good as a result. It piles weight on me so it's a good incentive! I've been tested a few times for Celiac and all good. I know too much Bread/pasta or cereals make me (and most people) more tired so I rarely eat it. The lady I got T3 from gave me slow release. Nobody on here could believe I got slow release in this country. It made me feel slightly wired for a few hours. That was it. My results were the same after months of taking it so I just stopped. I'll look at the list of Endo's. Thank you

Jaydee1507 profile image
Jaydee1507Administrator in reply to dayoff

Might be worth trying 'normal' T3. I do believe noone in this group has thrived on slow release.

FancyPants54 profile image
FancyPants54 in reply to dayoff

I get terrible night time anxiety if my FT3 is low. An illness like a bad cold, recently caused this night after night and I started to fear going to bed. One night, at my worst, I thought let's take some T3. It's either going to help or I will feel even worse for a while until it wears off. So I took just 8th of a 20mcg T3 tablet. The anxiety melted away within 20mins- 1/2 hour and I was fast asleep till morning. I did that every night during the illness and now I'm better I am trialing a general higher dose of the NDT I am taking.

Can you get hold of proper T3? (not slow release). If so, see if a tiny bit will take the edge off for you. If it works you know the answer. It's a scary experiment when viewed from a place of anxiety and exhaustion. But it was well worth it for me.

SlowDragon profile image

TSH 1.3 (range 0.23-5.3

FT4 - 18 (range 9-23)

Free T3 - 4 (range 3.1-6.8)

Total T3 - 1.2 (range 1.3-3.1)

Vit D 53 (range 50-139)

Results are far from optimal

Vitamin D far too low

You need folate, ferritin and B12 tested

Or add latest results

Exactly what vitamin supplements are you currently taking

If gluten gives noticeable symptoms then you do need to be absolutely strictly gluten free

FT3 is far far too low

Plenty of room to increase Levothyroxine

How long since dose was increased to 100mcg

First step

Get all four vitamins at GOOD levels

Vitamin D at least around 100nmol

Strictly gluten free

Always same brand Levothyroxine

Retest again in another 6-8 weeks

Assuming Ft4 not at top of range….. then get next increase in Levothyroxine to 112.5mcg per day

Which brand of Levothyroxine are you currently taking

Do you always get same brand of Levothyroxine at each prescription

Approx how much do you weigh in kilo

dayoff profile image
dayoff in reply to SlowDragon

Sorry - also I went up to 100mg around October/November last yar and didn't get bloods until recently. I weigh 58kg

SlowDragon profile image

HRT frequently results in needing dose increase in Levothyroxine

Essential to retest 6-8 weeks after starting or stopping HRT

dayoff profile image
dayoff in reply to SlowDragon

Thanks SlowDragon

I take Osteoguard which has 10ug vit D (i'll take more) , 90ug vit K, calcium 500mg, magnesium 250mg. Ashwagandha supplement of 125mg

Lamberts Methyl B Complex.....

The B vits in this are B6 20mg, Folate 200ug, Vit B12 300ug, Biotin 250ug and other stuff like thiamin, Riboflavin, choline, inosatol

I take them all with my evening meal as I take my levo first thing an hour at least, before food.

A fish oil with 4500mg of various fish oils (omega 3's) I don't take this daily. Maybe twice a week. It makes me gag!

My Levo is weird. So I was on 75mg until last year. The 50mg tablet is always Almus and my 25 for years was always the same. Another main brand I forget. Then this last year or so my pharmacy was giving me all different 25mg tablets. I pointed out this might effect levels and they totally disagreed and said that's all they had. It's their supply issue. When the GP told me to try 10mg he just added more 25mg tablets so I now take 1x 50mg and 2x 25mg. The GP said he'll change the prescription to 100mg tablet next time. How do I take an extra 12.5mg? Half the tablet (the new ones are tiny)? Or 25mg every other day?

Eeyore100 profile image
Eeyore100 in reply to dayoff

I'm pretty sure they recommend B Vits are best taken in the morning as they can be stimulating...

When my Vit D was this low I took a loading dose of 10,000iu with K7 for a month (which would be 250ug) then dropped down to 4000iu (100ug) which did the trick, this and good levels of oestrogen are essential to aid bone health

Hedgeree profile image
Hedgeree in reply to Eeyore100

I'm in agreement with Eeyore, B vitamins best taken in the morning as they tend to energise you. So taking them late will very possibly be adding to your insomnia!

SlowDragon profile image
SlowDragonAdministrator in reply to dayoff

suggest you always get same brand 100mcg Levothyroxine

Try taking at bedtime

Might also try (as separate experiment) splitting as 50mcg at bedtime and 50mcg waking…..can feel smoother and might possibly increase TSH a little

Only try one change at a time

Waiting 6-8 week to assess

if eventually need to increase dose to 112.5mcg

Accord don’t make 25mcg tablets

Mercury Pharma do

Easy to cut 25mcg tablets in half with sharp craft scalpel or pill cutter

Or take 25mcg every other day

Some of us find it better to take same dose everyday, others don’t notice if alternate dose 100mcg and 125mcg

CatsofCatford profile image
CatsofCatford in reply to dayoff

Something to note, you shouldn’t take Ashwagandha if you have autoimmune disease as it’s an immune stimulant

CatsofCatford profile image
CatsofCatford in reply to CatsofCatford

I should add that this does seem to be a bit of a grey area but something perhaps to consider. For me personally though, I have to avoid it as it’s from the nightshade family which many of us with autoimmune disease are sensitive to.

Tintin0202 profile image
Tintin0202 in reply to dayoff

I found the 25 mcg tablets made me feel awful. There are far more fillers in them which did not agree with me. I now take liquid thyroxine and am now completely gluten and lactose free. Plus high dose vitamin D, B complex, Selenium and zinc, vitamin C and fish oil. At last I feel pretty well.

helvella profile image

When do you take your levothyroxine?

Have you tried it at the opposite end of the day?

Have you tried splitting your dose?

dayoff profile image
dayoff in reply to helvella

Hi Helvella. Always first thing at least an hour before food. Never changed it. How would I do it? If I took it tonight after taking it this morning would that not have a hyper effect? Or if I waited until tomorrow a hypo effect? Thanks

helvella profile image
helvellaAdministrator in reply to dayoff

I've always taken mine at bedtime!

Suggest you consider either just taking tomorrow's at bed-time - no other changes.

Or take half tomorrow morning, the other half tomorrow night.

The odd day I delay until the morning (due to a blood draw), it doesn't make much difference. Having said that, we are all different. Be prepared to reconsider if you need to.

SlowDragon profile image

Levo is a storage hormone

You could take dose in morning and next dose that evening it wouldn’t be a problem

Or slowly move morning dose backwards over couple days

Eg tomorrow take at 5am

Next night at 2am

Next night- bedtime

B vitamins best in mornings

Magnesium best afternoon or evening (at least 4 hours away from Levothyroxine)

Remember to stop vitamin B complex 5-7 days before any blood test

dayoff profile image
dayoff in reply to SlowDragon

Ah, I thought everything had to be taken at least 4 hours away from Levo. I'll take the B vits in the morning now, thanks. SlowDragon I thought with Levo it had a 7 day cycle so it would be in my system at bedtime even if I took it in the morning. Or I've just misunderstood what that actually means as I wasn't really sure. Do you think taking it at bedtime would make any difference to sleep? Willing to try anything but I have been careful to take it on an empty stomach and well away from caffeine, supplements and anything else that could interfere.

SlowDragon profile image
SlowDragonAdministrator in reply to dayoff

Many people find taking at bedtime gives better abstraction


Remember magnesium at least 4 hours away from Levothyroxine - so late afternoon or early evening

If taking Levothyroxine in morning

Vitamin B complex at least 2 hours away

Personally I now split my levothyroxine - half dose 6.30am and half dose at bedtime (as I take T3 as well)

But for years when just on Levothyroxine I took at bedtime on advice of my endocrinologist and found it noticeable improvement compared to taking in morning

Also stops evening snacking!

Separate magnesium brilliant for improving sleep and decent level of vitamin D

Aurealis profile image

Magnesium is amazing for improving sleep

dayoff profile image
dayoff in reply to Aurealis

Thanks Aurealis, Ill add some extra magnesium into my diet or with supplements.

Imaaan profile image

I combine magnesium glycinate with valerian root to help with sleep

NIKEGIRL profile image

hi. I use melatonin for sleep 12mg. I buy it from piping rock USA. I find it helps.

saritadelmar profile image
saritadelmar in reply to NIKEGIRL

I've heard that melatonin should not be taken regularly as a sleep aid.

NIKEGIRL profile image
NIKEGIRL in reply to saritadelmar


saritadelmar profile image
saritadelmar in reply to NIKEGIRL

It's been awhile since I read about it, but what I can recall is that it is a hormone that regulates sleep according to light and dark, day and night. It should be used mainly when traveling when the circadian rhythm is thrown off. Otherwise, there can be a dependency on the hormone and there have not been enough studies to know the negative effects of long-term use.

Watch on YouTube: The World’s No.1 Sleep Expert: The 6 Sleep Hacks You NEED! - Matthew Walker

NIKEGIRL profile image
NIKEGIRL in reply to saritadelmar

I would say it depends then on what you want.

Muffy profile image

I find liothyronine helps in split doses with one of them when i awake at night. .

dayoff profile image
dayoff in reply to Muffy

How did you get Lio Muffy? You'd think my low T3 would warrant this but apparently not

Muffy profile image
Muffy in reply to dayoff

My Gp prescribes my T3. My, late, Consultant wrote to my Gp to ask him to prescribe it.

Gcart profile image

My experience only I know it won’t help as you have explained your circumstances at present .

I find the more tired I am the less well I sleep . For me it’s about doing less , being less tired throughout the day . This for me seems to allow a better night ! 5/6 is a blessing .

This is against my personality but I am having to practise it to remain sane !

dayoff profile image
dayoff in reply to Gcart

I know what you mean. On Wednesday I done a 12 hour shift on my feet all day at work and had the worst sleep ever

Alanna012 profile image
Alanna012 in reply to dayoff

That's because you're running on adrenaline by then. Have you considered taking a cortisol glandular in the morning to help regulate your cortisol rhythm a bit?

I find taking one or two pills of adrenavive 2 (I don't take every day, although I think you can take up to four or 6 a day) in the morning sometimes improves early night sleep the hours between bed time and say 2-4am in the morning.

I wake up almost every night, but am glad to get a least a few decent hours.

Fruitandnutcase profile image
Fruitandnutcase in reply to Gcart

I’ve found (after an awful lot of hard work on my sleep) that the earlier I go to bed, the better I sleep. If I got to bed around 10.00-10.30 I get a really decent sleep. If I leave it until later I get much less sleep. I also do all the usual things recommended - totally blacked out bedroom, only read paper books at bedtime - no kindle or iPad etc etc but for me it’s getting to bed at a decent time. I now stop watching the tv at 9.00 because anything that starts then will finish to late for me, so I watch a lot of tv on catch-up- sounds boring but I’d rather sleep well.

Litatamon profile image

'Lamberts Methyl B Complex..'

Over on the Pernicious Anemia section (PAS) there are a good few of us that can not handle the methyl form of b12 or any methyl forms for that matter. Some of us in the most minute amounts.

For me it makes me wired & agitated.

One time when I had a methylcobalamin shot instead of normal cyanocobalamin shot, I did not sleep for two straight nights. It was insane.


Also, I do not want to repeat myself but did I tell you about one nostril breathing (not yogic alternating breathing)?

dayoff profile image
dayoff in reply to Litatamon

That is very interesting Litatamon. I got this complex after reading on here that we need to avoid B Vits with folic acid and look for Folate instead, so I found this Methyl B complex. Which one do you take? I do all kinds of yoga and nostril breathing featured a lot in kundalini. I do try yogic breathing when I can't sleep but i'll try nostril breathing. Thanks

Litatamon profile image
Litatamon in reply to dayoff

I don't take any, but I probably should.

But I stay away from methyl forms, specially methylcobalamin (b12 form). I am so sensitive to it that once I bought a hydroxocobalamin b12 spray to add in between my shots and felt very wired & had insomnia. I went Huh? I turned the bottle over and it really was a hydroxocobalamin & methylcobalamin combination but not marketed that way.

I would set aside your methyl combination for a month or so and see. And maybe try taking b vitamin supplements a couple of times a week, instead of daily even if that one shows to be not an issue. Or half the amount. Or like others add saying take it earlier in the day.

The one nostril breathing is said to balance the brain for sleep. It is unlike yogic breathing because you choose one nostril and do not switch sides. Do it ten times. You might try fake yawns as well.

All the best to you. It must be so frustrating.

Litatamon profile image
Litatamon in reply to Litatamon

Also, my sleep was off when I was deficient in vitamin d & vitamin b12.

Alanna012 profile image
Alanna012 in reply to Litatamon

This has slowly started dawning on me. I find my hives get worse on days I take the methylated form and my body seems to become hyped up (the only way I can describe it) am now going for a normal B complex. Honestly it's like going forward to go backwards in this health journey sometimes!🙄

dayoff profile image
dayoff in reply to Alanna012

Hyped up! That's how I feel Alanna. Especially at 2am! I'm starting to question did my insomnia get worse when I started the Lamberts methylated B Vits. Not sure but it's getting ditched. I know what you mean about backwards and forwards too. Im trying to scribble down all the advice on here. Just went over my old posts too and getting some books ordered. I've known nothing for too many years.

Alanna012 profile image
Alanna012 in reply to dayoff

I know! I need to sit and systematically do the reading too. I get tips from all the forums but I still don't actually know enough in a thorough way! We could start a thyroid bookclub!

I recently discovered this lady here who has a really helpful straight forward, down to earth easy to digest podcast on hashimotos etc. I intend to go through them one by one.

dayoff profile image
dayoff in reply to Alanna012

I just listened to her first one. Interesting link to estrogens and progesterone. I got my life and vitality back for nearly 3 years with BHRT progesterone cream in my early 40's. Then I stopped drinking alcohol (loved a glass of wine or two 3-4 times a week) and suddenly my constant sore breasts (estrogen dominance) disappeared along with the lovely feeling progesterone gave me. I became breathless, had a fast heart rate and felt twitchy and had to come off it. It's all linked as she say's. Just wish I could work out how to get the balance now and feel the way I did. I've had 20 years of not being me and for 3 sweet years I felt incredible. Can't work it out.

Cheeseboard profile image

recently saw thyroid specialist who tested by cortisol level with 4 saliva tests and mine was raised at night causing insomnia

I started taking something called aswaghanda 2 at night and after z3 weeks it is starting to help.

Maybe the same test needs to be done for you?I

dayoff profile image
dayoff in reply to Cheeseboard

I've had this test twice in the last year Cheeseboard. My cortisol was fine. A bit high late afternoon on one of the tests then returned to normal in the evenings. I reckon this is when my 3 kids get home from school and argue over everything! I take Aswaghanda in the late afternoon but i'll switch to evenings thanks

Spangle15 profile image

Your body could just have got in the habit of not sleeping. The only thing that worked for me was doing a sleep course, there is one available on the NHS and also some private ones. It is basically sleep deprivation, which sounds horrible, and to be honest, it is really hard but it resets your body. If you feel as if everything else is optimal then it might be worth a try.

Alanna012 profile image
Alanna012 in reply to Spangle15

Lots of respect to you!

I tried doing something like this on my own (following something I read on google) which included rising at the same time in the morning regardless of how little sleep I got, and oh my god I couldn't do it, it was so hard! But really good to hear it does work. I didn't know sleep courses were available on the NHS.

Annajames profile image

I’m not going to give any medical advice just now other than test your folate, B12 and ferritin levels and supplement them and your D3 to reach optimum levels which will help with conversion.

I can give you advice which should be able to help you sleep though. I cured my insomnia when I stopped trying to sleep but instead started trying to stay awake in the dark. You’ll need blackout blinds/curtains to block out all external light and remove or cover any source of light in your bedroom, e.g, leds from alarm clocks or extension plugs. The room needs to be totally dark so you can’t make any shapes out. Then when you want to sleep don’t close your eyes. Concentrate on keeping your eyes open. If your mind starts to wander and think about anything other than keeping your eyes open pull it back and concentrate on keeping your eyes open. That’s it! It will only work in total dark but it does work and everyone I have suggest trying it too found they fell asleep within a few minutes. I went from taking at least two hours to fall asleep to falling asleep more or less instantly, but only in total darkness.

dayoff profile image
dayoff in reply to Annajames

Thanks Annajames. I fall asleep no problem but wake a few hours later. I sometimes get up so maybe this is a mistake. I'll check out the light in my room tonight. It may be that I leave the ensuite door open and that does throw some moon light into the room.

dottyb09 profile image
dottyb09 in reply to dayoff

Have you ever tried Prebiotic Inulin. When I had trouble sleeping I took this after watching a Dr. Michael Moseley programme about sleep.

Ellie-Louise profile image

I wasn’t a good sleeper until I started to take my Levo before bed.

I sleep like a log now.

dayoff profile image
dayoff in reply to Ellie-Louise

Oh god this is exciting to hear Ellie-Louise! Ill be doing that tonight then.

Ellie-Louise profile image
Ellie-Louise in reply to dayoff

Don’t blame me if it doesn’t work first time. 😆

dayoff profile image
dayoff in reply to Ellie-Louise

Don't worry, I have so many things to try here I won't know which is working or not working!

Ellie-Louise profile image
Ellie-Louise in reply to dayoff

Best of luck to you, hopefully something will.

My husband doesn’t sleep much either, I think he just needs to change his internal clock and ignore what the cat wants. Lol

FancyPants54 profile image
FancyPants54 in reply to dayoff

Don't try them all at once or you will never know what helped and what hindered. One thing at a time.

Alanna012 profile image

I can truly relate to the constant hell of insomnia and levo gives me depression and anxiety.

With regards to your GP, I don't often take up for GP's, but to be fair on this occasion it sounds like you had one that listened to you. None of my GPs would countenance giving me HRT or any hormonal help despite a family history of early menopause, chronic insomnia, fibromyalgia and dead levels of hormones. I am in my forties.

Hypothyroidism causes a drop in hormones generally. Testosterone, progesterone estrogen. Unfortunately the tendency is to become estrogen dominant and low in Test and Progesterone.

There's this chicken and egg relationship between low female hormones, high estrogen and thyroid disease and effectiveness of thyroid meds. Too much estrogen has an effect on conversion of thyroid hormones and the liver in some way (I'm not going to be able to find right now). I heard recently that so does low testosterone. Almost no one should be taking estrogen only if they have still have a womb, not surprised it made you worse. You need decent levels of progesterone to modify it. Perhaps you would do better on progesterone only in cream form. It helps with sleep provided you use enough. Not using enough is as bad as not using any. Some people need higher doses than they can get from the cream.

So as part of recovery you do need to be eventually looking at your hormones even if and when you get your thyroid hormones optimal.

But you could drop it for now and concentrate on the bits you can get better first. Start with getting meds and vits and minerals optimal.

You say you can't drink and one drink makes you ill. This happens to me. Alcohol intolerance points to histamine intolerance and that keeps you awake like no one's business. It is common to develop after being on levo only for a long time on a less than optimal dose (being left in this state actually causes active harm and hopefully one day the medical field will wake up to this, or someone will do us all a favour and sue them) It is awful. Antihistamine at night like phenergan or fexofenadine helps or melatonin. If you eat meat and don't already, add in offal like grassfed organic kidney and heart every week helps also.

You have nothing to lose by trying desiccated thyroid but obviously supply and expense come ito it. But after 13 years I wouldn't wait any longer to try something different.

Insomania profile image

I’m with you on the insomnia. Absolute hell. My worse symptom by far. I too am about to see a private endocrinologist because I feel sure all my symptoms are thyroid related. GP prescribed low dose (20mg) Amitripyline for insomnia and my goodness it’s good, I can sleep 12-7. If I miss a dose I sleep 3-7 so it is helping.

connyankee profile image

You poor thing. So you're probably Hyperthyroid. I'm not going to even look at your lab results because I'm not qualified to interpret them. It's Cortisol related, too. The stupid Doctors never test for Adrenal issues. A saliva test is needed. It can be ordered online. Google "At home saliva tests" and then judge for yourself which lab to go with. The testing facility will send you 3-4 test tubes to spit in during the course of a day. You mail them back and your results will be plotted on a graph which should resemble a hockey stick if you're normal. Shove the graph in your Doctor's face and say "What about this, Jack!?!" Then you'll wonder how to manage your cortisol levels. There are books, and more books about this. You can change them through diet, and exercise and of course meds. I take 30+mgs of Melatonin, plus 1 mg of a Benzodiazapene (don't get Rx's for this because they're addictive.) I cannot stress how much Magnesium is needed for a restful sleep. Sometimes a good heating pad rolled up beneath my neck will knock me out. (Make sure your heating pad turns off automatically.) Adrenals, Cortisol. This is such a screwed up condition because it f's with your CNS! Best of luck. (The Brits don't like me to mention Stop The Thyroid Madness, but I have learned everything from their site, book, and posts to my FB page. So, shhhhhhhhh!)

dayoff profile image
dayoff in reply to connyankee

connyankee thanks for this. I did have a couple of Dutch Tests. It's a European dried urine and saliva testing kit over 24 hour period. Not regulated in Britain but used in France and other places. I had them a year apart and they both came back ok in the cortisol area over all but I had unusually (for my age) high DHEA. I only had high cortisol levels at lunch time but they all seemed fine in the evening, on waking through the night and in the morning. The first test a year ago found my cortisol a bit low first thing but the one I had this year, around 3.5 months ago, was fine. Just the afternoon it rose. Probably the kids done it! They suspected High Glucose making DHEA rise so I lost a stone and kept it off. It was still high this year but they barley commented on it.

connyankee profile image

Best of luck to you. I do hope you find your sweet spot and get some needed rest. There's a lot going on in this crazy world that will throw your sleep patterns off as well. Don't forget about Vitamin D, Magnesium and Selenium. Take your vitamins in the a.m., and your minerals at night. I wish that I could loan you some ZZZZZ's from my sleep bank because I sleep too much!

dayoff profile image
dayoff in reply to connyankee

😆Thanks Connyankee

Aurealis profile image

Other things that might help - window slightly open, 12 hour overnight fast, but if it’s low t3 that’s causing it, not sure anything will completely resolve sleep problems other than t3

asidist profile image

Hesitated to share my experience w this as I’m so far from figuring it out myself, and don’t want to inadvertently influence you to worsen your situation ( this may also all be specific to my particular thyroid dysfunction - YMMV greatly) but on the off chance it helps: When I cut my levo tablet dose by less than even 10%, my yearslong, relentless insomnia disappeared overnight. I’ve since then trialed raising and dropping the dose in even smaller amounts multiple times over the past few years, and past a certain amount of t4 (regardless of FT4 levels) that’s always been the case. In fact, when I was alternating doses, the days I took less I slept better and the days I took more I slept worse. My baseline anxiety levels dropped when I cut my dose as well. The above pattern was consistent both on T3 and off T3. That said, reducing t4 came with its downsides - greater fatigue, less energy, puffy face etc - basically going more hypo.

The other thing I discovered more recently that made a surprising difference is switching to Tirosint. Tirosint, at higher doses than my levo tablets, and resulting in improved Ft4 blood levels, does not give me insomnia. It may have temporarily while adjusting to it but not in a lasting way as the tablets did. However, Tirosint hasn’t been a great solution for me either as it makes me super tired and foggy, even more so than being on a lower dose of levo tablets, and I don’t like how I feel on it. Tbh I hate it overall so far after over 4 months, and I’m almost ready to give up on it.

(Both of those things are in the context of always low-in-range (but variably so) t3, which I’m also working on.)

I feel your pain, I really do. These last few years I’ve opted to be more hypo (in terms of t4) vs getting little sleep and having more anxiety because it was such torture and so unhealthy to live like that, and every time I try it again I simply can’t stand it. My life has also shrunk further than I ever imagined these last few years so maybe not the best decision, tbd.

So, as you can see nothing to offer thats wrapped up nicely with a bow on top, but FWIW.

dayoff profile image
dayoff in reply to asidist

I'm so sorry to hear this asidist. It is hell on earth isn't it and as someone who has persistent insomnia I totally understand why you'd rather be hypo than not sleep. Im a bit worried for you though and if I was you id rather have my levels right and find a medication to help you sleep in the meantime whilst trying to work this out. While you are slightly hypo your entire body and organs, brain function and general well being is also being attacked. The reason I think mine is related to hypothyroidism itself and not the Levo is that the insomnia started with my thyroid issues and symptoms 7 years before I was finally treated with medication (levo) for it. Also it started to get worse before I upped my levels before the year and has made no difference one way or the other. When i'm slightly hypo I want to sleep, day and night but my sleep is weird. I don't get into a deep sleep and I'm aware of everything in the room. I'm in and out, dozing. I describe it like my brain is a slightly out of tune radio. Just babbling away in the background. Not thinking of anything in particular, just slightly on. I can even have a tune going round and round! Just now it's 3 hours then - ping! Totally awake. So far i've moved my levo to evenings. I've tried various sleep tablets like Nytol and Valarian root. I'm messing with HRT despite having regular periods. The one thing that made me sleep in 20 years was a private clinic giving me BHRT cream - 25mg of progesterone. I was 41/42 and no sign of menopause but she told me thyroid patients often get results from it. It was the best 2-3 years of my life since having an underactive thyroid. I slept soundly all night, I felt alive during the day. No brain fog, no anxiety, I lost weight without trying, I could exercise without it feeling impossible. I started my own business (something I could not have done with brain fog) and I felt amazing. Life changed dramatically - then it started to wear off. Still worked but not as well. I could still sleep but I asked her to up to 50mg. Months later I started to feel weird. Fast heart rate (100 resting), breathlessness, jerking awake all night, edgy. I came off the cream and it went away. I tried going back to 25mg but same again. Had to come off it. 18 months later here I am. Now trying to find ANYTHING that will make me sleep. I recently tried the cream again. I can take it happily during the day but not at night as it makes me jerk awake all night so it's useless for sleep. Although it has a lovely calming effect during the day. I tried the doctors NHS patches. OMG worst insomnia so far. It must have miniscule amounts in it so i'm back on the cream and awaiting a delivery of pregnenelone today. It is a pre-cursor to Progesterone. 25mg. I will let you know how this goes. I also have a blue horizon thyroid gold test sitting here. I've been off my vitamins for a week so I will take it on Monday. Then i'm going to do a food intolerance test. If anything comes back I will follow that diet. Basically I am going to everything and anything to get sleep. I will let you know how it all goes and hopefully you can find a way to tolerate your meds AND sleep. Have you spoke to the doctor about your predicament? I bet they don't care if you are slightly hypo though :( You sound like you are having a worse time than me.

asidist profile image
asidist in reply to dayoff

Ugh, what a journey. 😔

That’s so interesting about the progesterone. Admittedly I know near nothing about sex hormones and don’t look forward to having to learn, but find it crazy (and scary) that something that worked so well for years for you suddenly stopped working. Delayed reactions like that make things so complicated. Makes me wonder if, despite the clear benefit of it, something else was perhaps very, very slowly going further and further off balance until it finally reached a breaking point (similar to how having low T3 for years does .). Again PURE speculation as I know near nothing about sex hormones but just a thought. Could it be that adding in some other hormones in smaller amounts (alongside the progesterone you take) could “rebalance” things? (Have only ever read about pregnenolone(sp?) in passing and know it can function in a more flexible way than progesterone, so perhaps that’s along the same lines.)

One other thought. I’m not really in much of a position to be offering any input in relation to T3 as I have had my own quite difficult journey with it, but I saw above that you mentioned having one kinda unsuccessful trial with it. Just want to mention that if your levels are lowish and potentially making you hypo, and you think that relates to your sleep issues, if you ever have any interest in trying again, perhaps a different brand could make a difference. Though at lower starting doses I didnt notice too much of a difference between brands (beyond that some were "smoother" than others), at a higher dose now I was recently surprised at quite a big difference when I switched brands. Especially if you are reactive to different ingredients in foods etc, it may matter?

As for me, thank you for your concern, I truly appreciate it. Yes, I’m currently not in a good position. But, my levels were never right on a higher dose ofT4 either. Did ok for a few years (despite the insomnia) but over time became increasingly hypo with all sorts of issues - presumably from near bottom of range T3 for years while on T4 monotherapy - before cutting my dose of levo. The reason I had cut it in the first place was to accommodate adding in T3 (though, since then, have been on lower dose t4 even during a months long period wherein I had completely stopped t3, and continued to sleep better and have reduced anxiety even then). So I’ve only gone from hypo to slightly more hypo from cutting it a bit, but with just that tiny decrease I started sleeping, and for me looking back, the relentless insomnia does seem to have commenced with starting t4 therapy - certainly my increased anxiety did. (Was always a night owl, but never had ongoing insomnia previously, to the best of my memory.) I tried many, many, many different things to try to help me sleep during that time – and to be sure, lots of things helped, from magnesium to meditation to early morning sun to valerian etc - but it was still always an ongoing battle that I just didn’t have to fight any longer once dropping my T4 dose.

That said, I haven’t given up on t4 - am trying different things including the recent change to Tirosint - while I also work on increasing my T3 dose and maintaining vitamins and nutrients at good levels. It may be that I ultimately make do with a lower amount of t4 and can use t3 to make up the difference in energy and other things I lost, or perhaps I’m one of those that doesn’t do well with t4 and has to do t3 only (sincerely hope not the case), or maybe something else will be the solution. Don’t have any good answers yet and will be making my own post on here with more details to get help as I’m not sure how best to move forward at this point, or if there are things I haven’t considered. My (new) endo didn’t have too much advice besides suggesting Tirosint, and got me approved for it, for which I’m grateful to have been able to try. (And, yeah, as you correctly figured, he otherwise he looked at my below range T4 and low in range T3 and told me my levels didn’t look off on paper considering my TSH was fine, lol.) But he seems to be sympathetic and cooperative so far with letting me try different things with my thyroid therapy so that’s the most important thing.

We will figure this out. One way or another. Fingers crossed for both of us!

dayoff profile image
dayoff in reply to asidist

Hi Asidist, yes they added estrogens this time. I just received my pregnenolone this morning so I'll give that a shot now. Nervous because at least I was getting 3-4 hours sleep with the cream. Next to none with patches so hopefully this isn't going to take me backwards. I have to admit, I read all the T3 stuff on here and it sounds so confusing! Some people seem to be taking tablets all day and the levels are hard to understand. That's why i'm trying all methods diet and lifestyle related first in the hope my body converts better. I have no idea if I have intolerances but thought it was worth checking. If nothing else works then i'll try and get my head around T3. I'm glad you have an Endo at least as it sounds complex. I'll let you know if anything works for me just incase.

asidist profile image
asidist in reply to dayoff

Yeah, I hear you, the T3 stuff can seem complicated esp at first as it is something you have to take some responsibility for yourself away from the docs, and it does require experimentation in terms of dose (as does levothyroxine). You have to become your own health advocate and take things into your own hands to some degree, and if you aren’t used to doing that, I can imagine it may seem daunting. When I first came across this forum 5 years ago, I too initially did not want to have to rely on yet another pill (hate being reliant on any) and tried for a year and half to do everything else to improve my conversion / Ft3 levels and symptoms, without success, before starting T3.

I think if you’re interested you could probably speak to someone at ThyroidUk who could help explain the T3 stuff better - I thought I read that they have folks you can speak to on the phone now? (I’m not in the UK so not that familiar.) Not sure if the admins or someone else on here could also recommend resources (such as YouTube videos) that do a good job breaking it down - perhaps worth a different post to ask about that, if that’s the reason you haven’t explored T3 further?

I personally find T3 MUCH more straightforward to understand than sex hormones! It’s basically just trying to get your FT3 blood levels to more optimal levels (at least half way through the range, or higher as needed - have to experiment) to see if that helps your symptoms. And you do that by slowly increasing your dose of T3 over time until you feel well. Some people take their T3 dose once daily, some split it and take it twice, some three times. I think it’s fair to start with twice and then tweak from there if desired - twice a day is not hard to accommodate. On this board they do recommend making sure you also have good levels of certain nutrients in place to support your thyroid functioning beforehand, and because deficiencies can cause their own problems (particularly Vit D, B12, Mag, Folate, Ferritin). That’s kind of the basics of the recommendations! Beyond going gluten free and dairy free if helpful (btw with gluten the benefit is thought to come from avoidance, not reduction). I hope that’s helpful in explaining it.

Despite the fact that my journey with T3 has been more complicated than that of most (I seem to have had a true allergy, which is very rare, and worked with allergists for a long time on that) and it’s almost hilarious that I’m seemingly advocating for it here considering that, based on the fact that T3 is what has helped SO many who have ongoing problems on t4 alone, and that there is research paper after research paper backing up the need for t3, I personally still have high hopes for it and am persisting on that path.

But, we are all different and you have to do what you believe is right for you. If you have no other thyroid symptoms besides insomnia then that is certainly a unique situation. Yes please do keep me updated on how things go for you! We all learn from each other. Truly wishing you all the best.

Edit: Thought about my reply after submitting and wanted to clarify, but only now having a chance to get back on here. Want to note that what I wrote about T3 is just the (rather simple-minded lol) overview I use in my mind when thinking about dosing/using it in general terms. T3 is certainly way more nuanced in terms of biology etc (as is t4 for that matter) and seems like for some it can get quite complicated in terms of dosing as well - all of that being more complex than I could ever comment on or try to make digestible. Certainly there are many others on this forum MUCH more knowledgeable and qualified to talk about T3 (and I hope if any of them read this they will correct any inaccuracies I may have made). Please take what I wrote as no more than a simplified laywoman’s perspective!

Eeyore100 profile image
Eeyore100 in reply to dayoff

Have you tried adding oestrogen? Perhaps you were oestrogen dominant before.... could it be that your levels have dropped and this is why the progesterone stopped working as you have lost the balance?

I remember the sudden wide awake panic when my oestrogen levels dropped 😳

dayoff profile image
dayoff in reply to Eeyore100

Hi Eeyore, yes they added 2 types of estrogen in the BHRT and the patches were 2 weeks just estrogen (hell on earth, no sleep) and 2 weeks both.

You may also like...