Excessive sleep, on Thyroxine: Hi, Just wondering... - Thyroid UK

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Excessive sleep, on Thyroxine

Orangemango profile image
10 Replies

Hi,

Just wondering if anyone else uses sleep trackers? I rarely wear mine but when I do I'm normally 50%+ deep sleep, and I average 9 hours or more, wake up groggy or irritable on alarm (Apologies to all those suffering insomnia!) I've always been someone who can sleep anytime anywhere if tired.

I'm on 25mg T4 after having slightly raised TSH while TTC, and experience fatigue, daytime sleeping, poor memory and focus, can't lose weight, wiped out after exercise for 2-3 days. I wonder if a higher dose would help me deep sleep more efficiently - get the job done quicker and wake up feeling rested?

I would be interested to hear others experiences?

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Orangemango
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Nanaedake profile image
Nanaedake

How accurate is your sleep tracker? If they are accurate results then it's not a normal sleep pattern.

If you've got a copy of latest thyroid test results then post them here for suggestions. Also include any vitamin levels tested as could be low ferritin or iron possibly.

Orangemango profile image
Orangemango in reply to Nanaedake

Thanks for replying. Well it's not lab equipment, it's a Garmin forerunner watch, but the sleep and wake times are accurate, it seems to measure pulse and movement pretty accurately and husband confirms I was indeed asleep! Latest TSH was 2.0, latest FBC was all in normal range, no other tests done.

Nanaedake profile image
Nanaedake in reply to Orangemango

Could you post results for FBC here? Especially ferritin, B12, folate and vit D. If you don't have them, I would get them done. Garmin may not be 100 % accurate but it is certainly way out from my readings and does indicate a problem.

I would return to GP and point this out, ask for further blood tests, especially iron panel that includes TiBC.

Also, make it clear how it's affecting your employment, or other aspects of life. Let us know how you get on.

helvella profile image
helvellaAdministratorThyroid UK in reply to Nanaedake

For clarity, ferritin, B12, folate and vitamin D tests are NOT part of a Full Blood Count (FBC).

Nanaedake profile image
Nanaedake in reply to helvella

Thanks, yes, NOT included in FBC.

LyraBelasqua profile image
LyraBelasqua

Yesterday SlowDragon posted a link to an interview with Stasha Gominak about the importance of vitamin D in sleep, which you might find interesting. Unfortunately, being technically challenged to a ridiculous degree, I have no idea how to post the link on my phone. Can you help, SlowDragon

SlowDragon profile image
SlowDragonAdministrator

What were your blood test results from BEFORE starting on levothyroxine?

25mcg is too low a dose to start on. Standard starter dose of levothyroxine is 50mcg

How long have you been on 25mcg?

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Have you had thyroid antibodies tested and vitamins?

If not Ask GP to test vitamin levels and antibodies NOW

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

As LyraBelasqua says here’s brilliant film about why OPTIMAL vitamin D is needed

When Dr Gominak talks of vitamin D at 40, that’s 40ng/ml which is equal to 100nmol vitamin D

youtu.be/74F22bjBmqE

SlowDragon profile image
SlowDragonAdministrator

Modern thinking says starting on low dose is too slow and that it’s better to start at full replacement dose

New NICE guidelines

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.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

Post re getting dose increased

healthunlocked.com/thyroidu....

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

HowCome profile image
HowCome

Thanks for question, and all the replies.... been away a while, the vitamin D link with sleep and REM is New to me and fascinating.

HowCome profile image
HowCome

Anyone TTC, please please obtain your actual TSH figure from your surgery team or your GP.

My GP did not know that there is a narrower “normal” range for women trying to conceive.

(My figures from 2015: normal population max 5.0, but women TTC max 2.5. Minimum was the same.)

I got to the point of starting ivf and the clinic pointed out my TSH had been over the recommended range for childbearing, but just inside the whole population “normal” range, for at least 7months.

(Test Aug14 was looked at by the ivf clinic in feb 15, and i was sent straight for bloods. By feb15, it was above the normal as well.)

Note that the TSH wobble was very likely after a miscarriage, Jan14. Previously, for years, (inc at time of natural conception, and fairly straightforward pregnancy, birth of DS, and postnatally, inc a fair spell with PN depression), my TSH had always been 1-2 or well below 1.

Best wishes, esp to those TTC. X

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