Insomnia on Levothyroxine

[junebug7]

Hi,

I seem to have gone from one extreme to the other! Initially I had excessive fatigue and extremely long sleeps pre-diagnosis, and now I'm up to 100mcg levothyroxine (spot on for my weight) I'm having insomnia nearly every night... I always wake about 2am, often with thumping heartbeat, and really struggle to get back to sleep.

I've struggled with insomnia intermittently over the years, but this has been most nights since latest levo dose in November. I've even been walking 10km a day this week to try and tire myself out!

Is this likely caused by the levothyroxine, and if so is it likely to settle? Or could it be a knock-on effect with tweaking other supplements that mean I'm now missing some other nutrient? Used to take a multi-vit but now take individual supplements (iron, vit C, vit D, low dose magnesium).

Any wisdom gratefully received (stats in profile)

[SeasideSusie Remembering]

Junebug7

In November you were on 50mcg Levo, did you go from 50mcg to 100mcg in one increase or did you go from 50mcg to 75mcg first which is what should have been done.

We need new tests 6-8 weeks after any dose increase so have you had one since being on 100mcg?

Dose by weight is a guide only, we need what we need, so don't get hung up on the fact that you weigh xx so you need yy dose of Levo.

[SlowDragon Administrator]

Your GP should probably have only increased dose by 25mcg

We often can’t tolerate too big an increase in once go

Are you taking the same brand levothyroxine as when on 50mcg

You could try splitting your dose into 50mcg waking and 50mcg at bedtime

NOVEMBER 2021 (by this point was on 50mcg levothyroxine):

TSH – 2.57 miu/L [0.34 - 5.6]

Free T4 – 11.9 pmol/L [7.5 - 21.1]

T3 – 4.7 [3.8 - 6.8]

Vit D – 52 nmol/L [60 - 150]

Ferritin – not measured

B12 – not measured

Folate – not measured

How much vitamin D are you currently taking

How long have you been on 100mcg levothyroxine

[junebug7 in reply to SlowDragon]

Thanks SlowDragon SeasideSusie .

Yes I was on 50mcg initially from July to November, then upped to 100mcg at the end of November. The GP recommended booking in at the beginning of Feb for next bloods review so I'm a few weeks off getting them done. I think the original dosage was Accord too, though I can't be certain - maybe I could request future prescriptions to specify the brand to ensure it stays the same?

I was given a Vitamin D prescription for Colecalciferol (20,000unit capsules, two capsules once per week) which I've just finished. This is in addition to the daily VitD spray that I was already taking (BetterYou D4000).

Interesting point about dose by weight being a guide only. Do you think it's worth suggesting dropping to dose to 75mcg to see what happens, or sticking with the 100mcg as suggested and splitting the dose? I guess this will be guided by the result of the next blood tests?

Thank you

[SeasideSusie Remembering in reply to junebug7]

Junebug7

It's possible the jump from 50mcg to 100mcg was too much, gradual increases are the way to go with hormones and should be in 25 increments with Levo then retest in 6-8 weeks.

Considering the insomnia and thumping heartbeat coincided wit the increase in November, it might be a good idea to drop down to 75mcg, let things settle down, delay the new test until 6-8 weeks later and see how things are then, you may need another increase but you could go an extra 12.5mcg at that time, just take things slowly.

[junebug7 in reply to SeasideSusie]

That's brilliant, thanks so much for your help!

[kiefer in reply to junebug7]

Look more closely into Vitamin D:

"The investigators found, compared to placebo, women receiving vitamin D did not experience any significant change in HRQOL subscales (all p>0.05), depressive symptoms (p=0.78), or overall sleep quality (p=0.21). However, a greater magnitude of change in serum 25(OH)D was associated with an increased need to take medications to sleep (p for trend=0.01) and overall worse sleep quality (p for trend<0.01). Women who became vitamin D replete (≥32 ng/mL) also showed a deterioration in total sleep quality compared to women who remained <32 ng/mL despite supplementation, even after adjusting for relevant covariates (p<0.01). "

fredhutch.org/en/news/spotl...

[junebug7 in reply to kiefer]

Oh that's interesting. Just to check I'm understanding it correctly, is it suggesting that an excess of Vit D could be a cause? That could make sense with the timescale of when I was put on Vit D tablets...

[kiefer in reply to junebug7]

I think the mechanism is that Vitamin D, especially when taken at night, can lower melatonin levels. You might want to experiment with different amounts of melatonin just to see if it makes a difference.

[humanbean]

Some other suggestions...

1) Experiment with taking your Levo at different times e.g. morning instead of evening or vice versa.

2) Cut your Levo into two and take half in the morning and half in the evening.

3) Try a different make.

[BlueKeith]

When I went from 50 to 75 mcg of levothyroxine I had insomnia and was a nervous wreck for a couple of months then it eased and then felt quite good eventually.

[BlueKeith in reply to BlueKeith]

I also used to split the dose , take 50mcg before bed and 25mcg in morning until the symptoms went . Now I take full amount in the night.

[Flosstheboss in reply to BlueKeith]

Hello Tigershull. I don’t imagine you’ll see this but if you do I’d like to ask you a few questions as I’m suffering from hideous insomnia from the thyroxine.

Was the insomnia and anxiety you had directly from the thyroxine do you believe?

Did it slowly get better or was it a dramatic improvement after two months?

How little sleep were you getting?

I’ve always been hypo but I’ve never been able to tolerate any sort of natural or prescribed thyroid medication. Unfortunately I’ve been feeling very weak and fat recently and decided to check my levels again. My tsh was 60 and my t4 was 7. I obviously need thyroxine!

I’m on 25 which always brings my levels to normal but I always get horrific insomnia. I can hardly sleep at all.

I just need to hear that someone else had this and it improved. I’ve only ever been able to stay on thyroxine for six weeks before I go insane. If I know the sleep would improve I’d just grit my teeth and continue.

Many thanks,

X

[BlueKeith in reply to Flosstheboss]

Magnesium is good for sleep. Ive taken a pill and soaked in epsom salts and it has worked.

[junebug7]

A bit of feedback for anyone with similar issues who comes across this thread. The insomnia did eventually improve, possibly due to getting used to the higher dose of levo, but I think more likely due to the fact that I had stopped taking high dose Vit D. I had been prescribed 20,000unit colecalciferol and I suspect it was this that was causing me to wake up every night with racing heart. Sleep quality improved dramatically shortly after I stopped taking it 🙂