Insomnia Struggles 😩: I recently started a trial... - Thyroid UK

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Insomnia Struggles 😩

Pamela0106 profile image
Pamela0106
β€’27 Replies

I recently started a trial of Liothyronine in combination with T4 Levothyroxine.

Since the week I started it I have not been able to sleep at night time until around 4am or 5am each day.

I sleep for 3 hours then I'm up and not napping at all throughout the day.

I can't work out if it's because my Levothyroxine dosage dropped or because the Liothyronine isn't quite working for me as an individual. Or maybe it's something else entirely?

My dosage went from 100mcg Levo only to 10mcg Liothyronine and 50/75mcg Levo on alternate days. I'm only 3 weeks into the trial so bloods haven't been rechecked yet.

Anyone else experience this and can shed any light? I have tried everything to try and sleep but welcome any other suggestions.

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Pamela0106
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27 Replies
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Nanaedake profile image
Nanaedake

Try stopping the T3? Give it a few days and see if you get a good night's sleep.

Pamela0106 profile image
Pamela0106β€’ in reply toNanaedake

I could do that but I fought so damn hard to get it. I feel worse on Levo only but at least I was sleeping haha!

I don't want to stop it though incase it screws with my next blood test and resets me back to where I was without it x

Nanaedake profile image
Nanaedakeβ€’ in reply toPamela0106

Would 3 days make a big difference? When's your next blood test, it doesn't stay in your system for very long does it?

Your alternative is to drop your levo down and see if that makes a difference but that'll take longer to determine.

jamesal0 profile image
jamesal0

Yes had the same sleep issue on T3 Tertroxin. I never worked it out. Went onto NDT and sleep didn't really settle down until a few days after I started TRT.

J

Clutter profile image
Clutter

Pamela0106,

Sounds counterintuitive but try taking the T3 at bedtime which is when FT3 is naturally rising & is at it's highest around 2-3am.

Pamela0106 profile image
Pamela0106β€’ in reply toClutter

I think I might try that tomorrow for sure! This is driving me insane. I'm still wide awake now and likely to be so for the next 2/3hours argh x

Thanks Jackie x

amala57 profile image
amala57

Pamela I had the same. Turns out it was my adrenal glands. T3 / ndt can show up problems with adrenals. I was about to give up on the t3 too. It's not the answer.

DoDoc profile image
DoDocβ€’ in reply toamala57

Amala i have the same problem. Adrenal problems prevent me from raising T3 dose. did you solve the adrenal problem? thanks.

amala57 profile image
amala57β€’ in reply toDoDoc

I'm in the process. I've got t3 dose up now. But I still have rapid heart beat and low temperature on and off. I'm on adrenavive 2 2x per day high vit c minimal coffee etc. I have organic green tea with raw manuka honey before bed. Green tea has an adaptergen in it I think! I now sleep much better. Phew! For about 4 weeks I only had 2-3 hours a night. It was a killer!

DoDoc profile image
DoDocβ€’ in reply toamala57

Thanks for getting back. I have high afternoon and evening cortisol and was wondering if Adrenavive would be appropriate for that. Do you mind me asking if you are doing it under the guidance of any practitioner or on your own? I live in Ireland and there are no alternative doctors here, so I'm not sure how much I should take and for how long ... or whether it's right for me at all. Glad you've cracked the sleeping problem!

amala57 profile image
amala57β€’ in reply toDoDoc

I am using FTPO UK/Europe fb group. I did also see Dr P but their methods are the same. Good luck.

Pamela0106 profile image
Pamela0106β€’ in reply toamala57

Hey Hun. I have a few questions on this (sorry lol). What issues can T3 cause for adrenals specifically and do you know why it brings them out?

How did you discover it - was it cortisol test? I had my cortisol done a few weeks ago - I fear my doctor wouldn't do it again so soon and especially whilst they're about to stop my T3 prescription.

X

amala57 profile image
amala57β€’ in reply toPamela0106

Hi Pamela within a week or so of starting t3 I started to get racing pulse breathless exercise fatigue and insomnia. I got the 24 hr saliva test from regenerous laboratories and it showed low cortisol. This is caused by 2 years on t4. (During those 2 years I would wake up with a dull ache in my kidney area. I didn't realize at the time that this was adrenal fatigue setting in.) I also had top of range r.t3. I thought I was dying. No joke. I couldn't get any help from gp or endo. I got help here but many differing opinions on rt3 dosing etc. In the end I followed the advice from FTPO. They only recommend 24 hour saliva test for accurate cortisol testing. They also state, based on patient experience, that you must optimise b12 folate iron etc. Low cellular t3 puts a strain on adrenals. I also saw dr peatfield he said exactly the same as FTPO. He thinks it will take a couple of months for my adrenals to recover.

FTPO also recommend lowering my t4 to clear rt3. Then gradually increase t3 5mcg per 5-7 days. I did this and blissful sleep returned! Probably within about 10 days. High dose vitamin c also helped. I'm on 3000 per day. Sorry if this is garbled. Had really stressful day! But hope is of some help.😊

At present I am on 25mcg t4 and 31.25 t3. Blood test on Friday!

SlowDragon profile image
SlowDragonAdministrator

Seems like quite a drop in T4. I only dropped 25mcg T4 with 12.5mcg T3 added (in divided dose) as recommended by endo.

What are your levels of vitamin D, folate, ferritin and B12.

Do you take supplements for these, plus with coeliac you're very likely low in magnesium which is very good for sleep

See this link about insomnia

drgominak.com/sleep/vitamin...

Pamela0106 profile image
Pamela0106β€’ in reply toSlowDragon

Thanks for this. At the last check my B13 was 187 (extremely low end of normal range. And my D was off the scale low. I do supplement for both these now.

I'm not sure what my Magnesium is. I will have it checked next time.

I do worry it was a big drop in Levo too but my TSH was super super suppressed at 0.02 before I started this trial = perhaps my Endo felt I could use a bigger drop. I'm really not sure x

SlowDragon profile image
SlowDragonAdministratorβ€’ in reply toPamela0106

No point testing magnesium- not with standard test anyway

If it came back low you'd already be extremely unwell

How much are you supplementing vitamin D - have you retested since?

Taking B12 you will need B complex too

Was your folate checked

Has Pernicious Anaemia been tested for - that result was so low surely you should be on injections

Suggest you post B12 & folate results on PAS Unlocked for advice

What about ferritin too

If any of these are too low you can't use T3 well

Endocrinologists often know nothing about significance of low vitamins

Pamela0106 profile image
Pamela0106β€’ in reply toSlowDragon

The doctor at the time said despite low end B12 it was still in normal range (by 7 measly points!) ... I have asked it be rechecked on my next appointment. Pernicious Anaemia Antibodies haven't been checked but I've already suspected it so depending what the B12 result is I will push for that.

I take B12 and complex. Hoping that doesn't skew my results enough for my doc not to act.

Unfortunately I don't know what the Vit D figure was. I've yet to get hold. All I know is it was low and was told to buy an over the counter supplement. I've done that and it's a 3000iu spray I take daily.

My ferritin is actually very high at 96 (I'm 35yr old female) ... but my iron was in range.

X

SlowDragon profile image
SlowDragonAdministratorβ€’ in reply toPamela0106

Ferritin can be high as side effect of Hashimoto's. It's deceptive as can hide low iron

Ring and ask what vitamin D test result was - you are entitled to know

Supplementing any B vitamins will skew the test results (it takes 4 months minimum to drop back)

Not sure if intrinsic antibodies would be affected

It's so low you should have injections

Low B12 is recognised complication of coeliac, you don't have to have PA to still need injections

SlowDragon profile image
SlowDragonAdministratorβ€’ in reply toPamela0106

Remember to stop 3/5 days prior to any future blood tests as biotin in B complex can falsely affect blood test results

endocrinenews.endocrine.org...

3000iu vitamin D may not be enough to increase levels

Can do 2 x 3000iu for 2-3 months then retest

Vitamindtest.org.uk - Β£28 postal kit

SlowDragon profile image
SlowDragonAdministratorβ€’ in reply toPamela0106

How low was vitamin D and are you on loading dose ?

See SeasideSusie replies about vitamins

Essential to get these correct or T3 won't work

Pamela0106 profile image
Pamela0106β€’ in reply toSlowDragon

Thanks Hun. I replied above about these points too xx

adin profile image
adin

Why you drroped the levo, I think it's not a good idea.

Pamela0106 profile image
Pamela0106β€’ in reply toadin

Because the Endocrinologist told me to.

olgadimitri profile image
olgadimitri

Hi Pamela. I use amino acids bland before bed time and it helps me a lot with insomnia. People from this forum (Eddie83 and Rodz37, check their posts) advised me to use amino acids as a sleeping pills. You may try "NOW Amino-9 Essentials" product. It contains the 9 free essential amino acids. Very very helpful for me.

Pamela0106 profile image
Pamela0106β€’ in reply toolgadimitri

Thank you. I will deffo look into this. Appreciate you replying x

HLAB35 profile image
HLAB35

I've found that adrenals are often ignored when thyroid disease is diagnosed, also other hormonal issues which effect sleep due to our age! If you have low thyroid your adrenals would have been struggling to compensate, so when you increase t3 it'll 'confuse' the HPA axis for a while. One thing to do is to try and increase GABA at nighttime (calming neurotransmitter). There are amino acids that help as previous poster has mentioned - in the short term they can work on insomnia but keep an eye on your b12 levels - I found that they seemed to get worse on NAC.

Magnesium citrate and niacin (flushing type) can help promote sleep. Having rice or potatoes at tea time is good too (see article). If your vitamin d is low in range that won't help - it's a master hormone. I also take B5 and B6 in co-enzyme form called p-5-p for adrenal health. I found a b supplement that had these in higher amounts for dealing with stress. Too much oestrogen during perimenopause can also cause insomnia - cutting down on dairy can overcome this problem if you have oestrogen dominance.

larabriden.com/gentle-carbs...

victoriahealth.com/editoria...

Janneta profile image
Janneta

Hi Pamela, I am on 20mg Liothyronine 10mg morning and 10mg night. Plus Levothyroxine which was 125mg a day. Been on that for about five to six years.

Then couldn't get Liothyronine and was without for 7days.

Now back on and Endo has told me to cut down Levothyroxine to 75mg. I've done it to 100mg at the moment as the sudden loss of Liothyronine gave me unmanageable pain in my bones which is just slowly reducing at the moment, fingers crossed. Didn't want to jump straight to 75.

I've always had sleep issues even before the liothyronine. I use an app on my phone to go to bed at the same time each night and get up same time each morning. Usually read myself to sleep as well.

I work and am up at 5ish each morning. Very seldom sleep longer, but I do find it easier to sleep at night if I get up when I wake. If it's stupid early I try to read myself back to sleep, or get up and watch something boring on tv. That usually sends me off.

I feel for you and it did take time for me to get into this habit, but it works for me. Main thing is not to stress about going to sleep as that just means you won't. I didn't want to go down the tablet route as on enough already! πŸ˜‚

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