Could taking Levo in the middle of the night be stopping me getting back to sleep

[Mirabelle1]

Hi everyone, if I wake up during the night (usually 4/5am to go for a wee) I often take my levo then rather than wait until i wake up properly at 8am. Last night I took it at 1.40am when I woke up and couldn't sleep again for 3 hours. Could it be the levo stopping me getting back to sleep. Is it better to wait to take it when I wake up properly in the morning? Thanks

[SlowDragon Administrator]

Welcome to the forum

Could be any number of issues causing difficulties sleeping

How much levothyroxine are you currently taking

How long on this dose

Do you always get same brand levothyroxine at each prescription

When were thyroid levels and vitamin levels last tested

Low vitamin levels are extremely common when hypothyroid

What vitamin supplements are you currently taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Low vitamin D very common with thyroid disease

Often gets worse in winter, unless supplementing

Insomnia and low vitamin D often linked

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Please add most recent results and ranges……or come back with new post once you get results

[Mirabelle1 in reply to SlowDragon]

Hi SlowDragon, I just wanted to let you know how much I appreciate your reply. It might take me a while but I will reply to you properly with the info I have. I suspect I'm undereducated but will dig out most recent test results. Mirabelle x

[SlowDragon Administrator in reply to Mirabelle1]

How much levothyroxine are you currently taking

Which brand

What vitamin supplements are you currently taking

[Mirabelle1 in reply to SlowDragon]

Hi SlowDragon, I'm taking 50mcg of levo. Right now it's mercury pharma, which I think is what I usually get - I will start keeping an eye on the brand. No vitamins right now except some Hcl with detain, vitamin c, folic acid 5mg due to deficiency

[SlowDragon Administrator in reply to Mirabelle1]

That’s only a STARTER dose

How long have you been left on just 50mcg

Approx how old are you

Bloods should be retested 6-8 weeks after each dose increase

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Essential to regularly retest vitamin D, folate, ferritin and B12

On levothyroxine we need OPTIMAL Vitamin Levels

If folate is low…important to test B12..likely low

[Mirabelle1 in reply to SlowDragon]

Thanks SlowDragon,

I've been on that dose over 2 years. was put on it when thyroid levels first went haywire, they were then retested and GP said all ok in normal range. They have been tested once a year since then. Most recently in November 2021. Results:

TSH: 1.24

FT4: 14

I realise I am probably still undermedicated as not feeling optimal. I am losing weight - don't weigh myself but a bit overweight. Probably around 70k at 5'6''. Losing weight steadily on AIP.

I'm 44.

B12 high at 1063 ng/L (range is 197-771).

Thanks for the info. I need to read and then I think ask my GP for higher dose.

Mirabelle

[SlowDragon Administrator in reply to Mirabelle1]

What’s range on Ft4

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Just testing TSH and Ft4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Mirabelle1 in reply to SlowDragon]

*under-medicated not under-educated!

[helvella Administrator Thyroid UK in reply to Mirabelle1]

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[greygoose]

Doubtful it's the levo because it's not that fast-acting.

Levo is the thyroid hormone, T4, which is basically a storage hormone that doesn't do anything much until it is converted to the active hormone, T3. This can take anything up to six weeks.

Lots of people take their levo in the small hours so that there is no danger of reducing absorption by eating, drinking coffee or taking other supplements/medication. It means that you can have your breakfast on waking, without waiting the recommended hour.

It's possible that you have adrenal issues that stop you going back to sleep at 1.40 am. But could be many other things as well. Is this a one-off situation? Or does it happen regularly?

[Mirabelle1 in reply to greygoose]

Hi Greygoose, thanks for that, it all makes sense. It could well be an adrenal issue as I felt like I was having an adrenaline surge (quite mild). I will get round to doing a saliva test but haven't yet. It doesn't happen too much - I usually sleep right through the night- but if I do wake up it often takes me a while to get back to sleep

[greygoose in reply to Mirabelle1]

You're welcome.

[Sparklingsunshine in reply to Mirabelle1]

Hi

I could write a book on insomnia and not getting back to sleep, I wasvdisgnosedwith fibromyalgia 16 years ago and poor, broken sleep and or insomnia is an extremely common symptom.

There's not a medication I haven't tried, there's not a hot milky drink, chamomile tea, hot bath before bedtime I haven't attempted. I've thrown everything at it over the years. I even went on a sleep course I was that desperate.

I've suspected for years my thyroid wasn't working properly but as my TSH was in range, high but in range nothing was done. I never had my FT4 tested. I wasn't properly diagnosed as hypo until last year.

I really think being on Levo has helped my sleep enormously. Like you I always take it at night when I get up for the loo and it's never prevented me from getting back to sleep. That said when I was on a lower dose I was still struggling. But then I was undermedicated.

I'm on 125mcg now and my sleep is pretty good. It's more likely if you aren't on enough medication that will interfere with your sleep. As you're still having hypo symptoms.

[Hidden in reply to greygoose]

I agree with greygoose ; in order for levo to be activated, it has to be transported from your blood to your cells, and there is no way of that happening in three hours or even the same day. But, cortisol problems can interfere with sleep quality and make you either toss and turn before falling asleep, or wake up during the night.