Waking up at 2am: For the past week I have been... - Thyroid UK

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Waking up at 2am

JenniferW profile image
42 Replies

For the past week I have been waking up in middle of the night suddenly feeling very tensed up and remain awake with the odd doze until morning. I feel very jittery, which I think is increased adrenalin. I think PMT might have triggered it, but it isn't stopping.

I have an underactive thyroid and take 50 mg per day, 25mg one day. My last blood results were fine, but then I had covid, which messed up my sleep patterns, combined with sickness.

I got back to a more or less normal sleep pattern and have recovered from covid I think, taking exercise, I started swimming again two weeks ago after a break from before covid.

Has anyone got any ideas about how to get this under control? I have tried exercise and yoga. I am currently taking sominex the OTC sleeping pill, but it isn't stopping me from waking up.

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JenniferW
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42 Replies
JenniferW profile image
JenniferW

I forgot to say, the adrenaline feeling wears off around mid morning. I am so sleepy now. The doctor had to give me zopaclone (SP?) to get me back on track during covid, but that's not an option long term and I usually sleep okayish.

Timetraveler67 profile image
Timetraveler67 in reply toJenniferW

Don’t know but I was bad withdrawal from zop medication which put me on edge for a few months after stopping, just saying it’s a thought x

SlowDragon profile image
SlowDragonAdministrator

You’re on incredibly small dose levothyroxine

When were levels last tested

Standard STARTER Dose of levothyroxine is 50mcg and typically dose is increased slowly upwards over coming months

Very important to test vitamin D, folate, ferritin and B12 levels at least once a year, especially as you presumably have autoimmune thyroid disease

Also on omeprazole?

Living on adrenaline is hypothyroid symptom

Bloods should be retested 6-8 weeks after being on constant unchanging dose and brand of 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

Recommended on here that all thyroid blood tests early morning, ideally before 9am 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 and money off codes

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/

About 90% of all primary hypothyroidism in Uk is due to 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...

Woodyscooby profile image
Woodyscooby in reply toSlowDragon

All this information but whos going to treat it properly for you ....my gp is pathetic ....any good endos in uk pls

SlowDragon profile image
SlowDragonAdministrator in reply toWoodyscooby

Before considering booking any consultation get FULL thyroid and vitamin testing done

As per advise on your post here

healthunlocked.com/thyroidu...

Come back with new post once you get results

Likely to need to improve low vitamin levels

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

pubmed.ncbi.nlm.nih.gov/303...

Elevated TgAb levels are associated with symptom burden in HT patients, suggesting a role of thyroid autoimmunity in clinical manifestations of HT. Based on these results, we recommend screening for TgAb antibodies in HT patients with symptom burden.

humanbean profile image
humanbean

Your Levo dose is ridiculously small, and could well be the cause of your problems. But there are so many other possible causes I can think of.

1) Low or high cortisol

2) Low magnesium

3) Low calcium

4) Low or high potassium

5) Low or high sodium

6) High blood sugar?

7) Hyperventilation leading to high carbon dioxide

I would be most suspicious of number 1. When the body has too little thyroid hormones it keeps the body going by creating more cortisol. Cortisol is one of the stress hormones, and it can cause tensing up for no obvious reason, and a fast heart rate. Some people can create loads of cortisol and keep it up for years. Some can't keep it up and end up with low cortisol.

Symptoms of both low and high are unpleasant and make people feel stressed when there is nothing to be stressed about (like being asleep). When there is something to be stressed about people find it hard to tolerate and they can (mentally and physically) go to pieces.

My personal opinion - I think high and low cortisol are the cause of a lot of panic attacks, depression and anxiety.

paulrobinsonthyroid.com/sym...

paulrobinsonthyroid.com/hig...

humanbean profile image
humanbean in reply tohumanbean

Anyone with thyroid disease almost certainly has low magnesium if they don't supplement. It is an extremely common problem which is under-recognised because there are no good or reliable tests for magnesium levels.

As long as your kidneys function to some extent you can supplement magnesium. Functioning kidneys should excrete any excess. The normal dose of magnesium is roughly 200mg - 400mg per day.

There are many different kinds of magnesium supplements, and you should pick the one that appeals to you most :

drjockers.com/best-magnesiu...

naturalnews.com/046401_magn...

Magnesium helps people to relax, and so it is best taken in the evening.

JenniferW profile image
JenniferW in reply tohumanbean

Hi, thanks for the reply. I know my thyroid pills are low compared with many people, but when we tried 75 mg I was over medicated. I take vitamin D (3,000 UI) and magnesium as a rub on gel from the Better you range.I will contact my GP surgery on Monday and request a test and also ask if they can check the vitamin D level as it has been a while.

humanbean profile image
humanbean in reply toJenniferW

when we tried 75 mg I was over medicated

When you say that, do you mean that your TSH was very low, or that your Free T4 and/or Free T3 were very high?

I will contact my GP surgery on Monday and request a test

For magnesium? There really is no point. The magnesium test is very unreliable.

JenniferW profile image
JenniferW in reply tohumanbean

No, I know, I meant my thyroid and I will tell them what has happened and ask about cortisol

SlowDragon profile image
SlowDragonAdministrator in reply toJenniferW

Which brand of levothyroxine for 75mcg dose

Only brand that makes 75mcg tablets is Teva and Teva upsets many people

It’s frequently the brand not the dose that’s the issue

On levothyroxine we need OPTIMAL vitamin levels

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Folate and ferritin at least half way through range

Being under medicated for thyroid frequently results in low stomach acid and poor nutrient absorption with low vitamin levels as direct result

Omeprazole lowers vitamin levels even further

Especially B12, magnesium and iron

You probably need to supplement magnesium

Any magnesium supplements must be minimum 4 hours away from levothyroxine

Best taken afternoon or evening as helps improve sleep

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

JenniferW profile image
JenniferW in reply toSlowDragon

Ah, I have been on omeprazole for the last three days as I needed to take a course of naproxen, I'll stop taking the omeprazole. I don't usually take it for more than three days anyway, horrible stuff.

JenniferW profile image
JenniferW in reply tohumanbean

I had most things tested a couple of weeks ago for my RA.My potassium is mid range, my sodium is low because the methotrexate I take has a diuretic effect on me. My iron levels are at the bottom of the range because I take it with orange juice and my stomach was upset during covid, I will increase my iron.

humanbean profile image
humanbean in reply toJenniferW

My iron levels are at the bottom of the range

Have you had an iron panel done? It is not a good idea to take iron unless you know about both your serum iron and ferritin (iron stores). The reasons why are given in this link :

healthunlocked.com/thyroidu...

JenniferW profile image
JenniferW in reply tohumanbean

I started taking it on the instruction of the rheumatology department and I know I had a test which included ferritin (along with B12 and so forth)

SlowDragon profile image
SlowDragonAdministrator in reply toJenniferW

I know I had a test which included ferritin (along with B12 and so forth)

You are legally entitled to copies of these results

Come back with new post once you get results and ranges

JenniferW profile image
JenniferW in reply toSlowDragon

I can't find that set of results, sorry, I do have access but it's on the system online website and it's very awkward to navigate.For reference my last lot of thyroid results (pre covid) were

Serum TSH level 1.45 mU/L [0.35 - 5.5]

Serum free T4 level 15.8 pmol/L [10.5 - 21.0]

The red blood cell test results were

Red blood cell count 4.14 10*12/L [3.9 - 5.2]

Haemoglobin concentration 123 g/L [120.0 - 156.0]

Haematocrit 0.378 L/L [0.355 - 0.455]

Mean cell volume 91.3 fL [80.0 - 99.0]

Mean cell haemoglobin level 29.6 pg [27.0 - 33.5]

If this is any help?

I will tell the GP everything you have said about cortisol and request the full set of thyroid tests and a vitamin D test.

SlowDragon profile image
SlowDragonAdministrator in reply toJenniferW

GP unlikely to understand or test cortisol

Was last test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Just testing TSH and Ft4 is completely inadequate as there’s no Ft3 result

NHS rarely tests Ft3 these days

FT4: 15.8 pmol/l (Range 10.5 - 21)

Ft4 was only 50.48% through range

Most people when adequately treated will have Ft4 at least 60-70% through range minimum

You need folate, B12, ferritin and vitamin D tested annually

Email Rheumatologist for results

Again often forced to test privately…..nhs rarely tests that frequently

JenniferW profile image
JenniferW in reply tohumanbean

My husband made me a drink of salt and lemon this morning and it helped. I probably need more salt in my diet, It's a nuisance it being removed from so many foods

humanbean profile image
humanbean in reply toJenniferW

You could try an Adrenal Cocktail and see if it helps :

therootcauseprotocol.com/fa...

stopthethyroidmadness.com/a...

JenniferW profile image
JenniferW in reply tohumanbean

Thanks, they are good suggestions, I'll try one this evening to load up my sodium levels

humanbean profile image
humanbean in reply toJenniferW

You should try it at various times of day. Some people find them most helpful first thing in the morning. Some people sip them throughout the day. Others try it in the afternoon/evening.

JenniferW profile image
JenniferW in reply tohumanbean

I'm trying orange juice and salt now, I don't have any cream of tartar but I had a banana for breakfast.

humanbean profile image
humanbean in reply toJenniferW

There are quite a few different sources of potassium.

Personally, when I need it, I take food-grade potassium bicarbonate which I bought in powder-form from Ebay. It is used as a raising agent in baking, apparently, and is also used in wine-making.

I tried cream of tartar (potassium bitartrate) but couldn't tolerate the taste.

Another possibility is potassium chloride which is the substitute used in low-sodium salt.

You might find this link of interest - and the comments are worth reading :

drmalcolmkendrick.org/2013/...

JenniferW profile image
JenniferW in reply tohumanbean

This worked really well. I had a misfire Saturday night as I took it with supper and it gave me stomach ache so I was sick at midnight and my poor husband sat up with me all night shaking and being sick, but last night I had some at tea time and I slept much better, I made it till 3.15 and then took my levo as jrbarnes suggested and had a drink of salt and lemon and felt sleepy again about an hour later. I woke up again a couple of times but got back to sleep and hardly have any shaking.I've sent a message to the GP.

June25 profile image
June25

I have also been plagued with waking up several times in the night and sometimes not being able to get back to sleep. When that happens my whole day is trashed and might as well be cancelled.

I also had Covid and found that my cortisol levels dropped from high to low because of it.

I agree with SlowDragon that your first step is to do the tests required to see what is going on, perhaps post your results here. Your thyroid hormone may be dipping too low in the night and prompting your body to go into stress. If your cortisol is also low then there will not be enough to compensate. So in addition I would add to do a cortisol saliva test, for example by Regenerus. Your cortisol may always have been fine before but trust me, Covid can decimate your levels.

There may be no quick fix for this issue but getting a handle on all the moving parts is the first step.

JenniferW profile image
JenniferW in reply toJune25

Thank you June, I will talk to the GPs about cortisol, I hadn't realised it was closely related to the thyroid. I had put my anxiety down to my hormones as I am going through the perimenopause.

SlowDragon profile image
SlowDragonAdministrator in reply toJenniferW

When under medicated for thyroid, adrenals try to compensate for lack of thyroid hormones….initially this leads to high cortisol

But eventually adrenals can’t continue at that level and adrenal exhaustion can set in

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

Hedgeree profile image
Hedgeree

Hi JenniferW,

I realise others are advising you regarding cortisol and getting blood tests done but have you ever tried a weighted blanket?

They are full of tiny glass beads and when you sleep under one it applies pressure to certain points of your body and helps to calm you. They come in different weights. I've seen expensive ones and other more budget friendly ones (which I decided to buy as I wasn't sure I would tolerate one.)

I'm asking as I tried one of these not that long ago and I had a proper sleep for the first time in a long while. I have issues with insomnia and also often wake in the night during a panic attack which isn't pleasant. I was worried it would make me feel claustrophobic but it didn't. I don't use it all the time but it does help me when I do.

Obviously not suitable if you have any pets that like to dig or chew! 😊

Best wishes.

JenniferW profile image
JenniferW in reply toHedgeree

That's a good suggestion, thank you. I am an anxious person, have been all my life, it probably triggered my immune system problems :(In this instance however my system seems to have gone a bit nuts...

Pearlteapot profile image
Pearlteapot

Weighted blankets are wonderful. I got the Remy blanket which is like a giant's first go at knitting. I chose it because I think its cooler at night than the weighted beads and I don't want synthetics around when I'm sleeping. It really is very calming. remysleep.com/products/knit...

I also got a wool duvet instead of feather. Much better for night time temperature regulation. I also have a magesium salts bath before bed (not too hot!)

I think these new bits of bedding do help, but there are limits. I'm pretty sure its the medication that has brought sleep back into my life.

JenniferW profile image
JenniferW in reply toPearlteapot

I use blankets, I agree they are much better than duvets.I also use a magnesium lotion at night which usually helps, but this time I think the blood tests and change of dose are needed.

Piranesi55 profile image
Piranesi55

I agree about the weighted blankets. I used to find as soon as the weather got warmer and I put away my winter weight duvet and my heavy bedcover I couldn't sleep - until I got a weighted blanket. It was quite pricey but I swear by it.

janeroar profile image
janeroar in reply toPiranesi55

Could you tell us which weighted blanket you recommend? Thanks

Piranesi55 profile image
Piranesi55 in reply tojaneroar

I bought two, one is by Mela and I find it the best.

jrbarnes profile image
jrbarnes

When you wake at that time try to take your Levo. It helps me go back to sleep.

JenniferW profile image
JenniferW in reply tojrbarnes

Thanks, I'll try that tonight

JenniferW profile image
JenniferW in reply tojrbarnes

It helped, I hardly slept at all last night so I took my dose at 3.30 and calmed down a bit and managed to doze.

amasufindme profile image
amasufindme

Hi JenniferW consistently waking up at 2-3am with the sensations you describe maybe low blood sugar. It's useful to monitor your bioindividual response to the foods you eat using a sensor such as Libre 2. My functional nutritionist suggested this to me and it resolved the problem. I started to experience this sleep disturbance as well during perimenopause... now I am careful about when/what I eat in the evening. Also instead of Zopiclone try melatonin I use Eurovital 3mg liquid. Best wishes

JenniferW profile image
JenniferW in reply toamasufindme

Thank you. When this happened a few weeks ago during covid, it was definitely low blood sugar levels, because I had lost weight, so I asked for sleeping pills.But now I am eating properly, so it shouldn't be a problem.

HeartWoman profile image
HeartWoman

I have this issue when my estrogen is too low. You say you are in perimenopause, right? I would recommend watch Louise Newson or Menopause Taylor YouTube videos. They give lots of great information about fluctuating hormones, symptoms, treatment, etc. The symptoms your describe are some of the first I experience when my estrogen is too low.

I have been in surgical menopause for many years and when my estrogen is too low, my life is miserable. I am currently trying to get my levels up and hopefully will feel better soon. Unfortunately, my thyroid is not optimal yet either, so it makes it very challenging. I can go from crying, to laughing, to wanting to hit someone very quickly at the moment. I had to take antibiotics and that has thrown everything for a loop.

JenniferW profile image
JenniferW in reply toHeartWoman

HiYes, I think I might have had a bit of PMT two weekends ago which triggered this. I am taking HRT and the mini pill, so it makes it hard to pin things down.

I know what you mean about getting things right, I have had changes to my thyroid meds several times due to menopause, then HRT , then HRT increased and each time it takes a couple of months for the thyroid to settle.

Thanks for the video links, I'll watch them this afternoon.

Jennifer

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