I had a complete thyroidectomy due to cancer in 2016. All has been going well. Battled through to get medication at good level, and regularly checked. Am able to exercise and lead a normal life.
Over the last year or so I’ve been struggling with insomnia. I wake in the night, usually need a wee, around 3am and cannot get back to sleep.
I’m hot. Can’t get comfy. Become more hot and the saga continues until I eventually drift off again until my alarm goes off. I’m normally awake for over 2 hours.
Just wondering if it may be linked to anything thyroid related.
I have consulted gp but you guys have been so helpful in the past as we all know, the gp will probably look at my medication level and try to reduce it!
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Olivia80
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I’m taking, b12, vit d, calcium, magnesium - b12 was slightly above range when tested in last test, the rest were all at top end of normal range (I don’t have the results to hand).
Yes, only taking thyroxine. I’ve had to work through the medication fight with the gp myself (with everyone’s help on here) and this is the first time I’ve struggled in almost 6 years.
I’m hoping the insomnia isn’t linked as is a new thing…being over 40 now my brain went straight to overheating / old age symptoms, so thought I’d try here for any pearls of wisdom! X
Are you taking a daily vitamin B complex or just B12
Usually better to take good quality vitamin B complex, one that contains folate not folic acid. This can help keep all B vitamins in balance and will help maintain B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
I've also had a thyroidectomy for thyroid cancer. I was just remarking yesterday that there seem to be loads of us on the forum recently! A few years ago it was a rarity.
I also suffered from dreadful insomnia earlier in my illness, and at night would feel like I was lying on rocks. I've worked on it a lot, and consider my sleep now quite good.
Getting to sleep okay initially but then walking up at 2-4am is the most common type of insomnia we hear about on the forum, and I think typical for hypothyroid caused insomnia. This pattern is said to be caused by adrenal problems. For a healthy person, this is around the time your body would switch from using up food eaten in the day and still being digested, on to stored energy being released from the liver and elsewhere. When we are hypo our bodies aren't good at accessing stored energy, so we will go hungry at this point, and as with many situations, when the thyroid is not doing its job it is up to the adrenal glands to help us manage and get through without that energy. When they're tired too, we won't have enough energy available to keep us asleep, so it wakes us up.
These are all bits and pieces I've picked up in different places, but the upshot of it is a snack can be helpful in getting back to sleep. When this was a problem for me I would eat something in the evening close to bedtime. Then have a snack prepared on the bedside table so I could grab it without opening my eyes. I used to put a little cup of nuts or oatcakes. Now it is a more rare occurrence for me I take a spoon of coconut oil.
A longer term solution is to work on your adrenals. There is a lot of discussion of how to do this elsewhere on the forum, often called adrenal fatigue, and the first step to addressing it is a 24 hour saliva test.
I tried all sorts of things to work on my insomnia, and here are the things that had the biggest impact for me. I will also say that all the typical advice you get about insomnia are also all worth trying as I got a little bit of improvement from a lot of things.
MELATONIN:
This was originally recommended to me by my GP, though it now can't be sold in the UK. It used to be easy to buy this online from the US, but I think with Brexit they have tightened up a lot of the rules. I can now find it on Ebay, but you have to search a bit harder. Often sold by European sellers. You can probably stock up large quantities if you go abroad for holidays. I prefer the brand Now, in the past when I've had to use other brands some have worked for me and some not.
I started on 3mcg and use this every night. For the worst years of my insomnia I used to take 6mcg. I've now cut down to 1.5, which I get by splitting tablets. Others say it is best to use this sparingly when needed.
The first time I took melatonin, within half an hour or so I felt sleepy, and realised it was something I hadn't experienced since before my thyroidectomy. I'd been tired but not felt that sensation where you're ready to drift off. But the biggest thing it helps with is that wake up later in the night.
MINDFULNESS:
I first tried mindfulness hoping for other health benefits, but a surprise was that it helped my sleep immediately. For years I would notice a reduction in sleep quality that night if I didn't do a mindfulness exercise. A great thing is that mindfulness has tons of other health benefits, is great for dealing with the emotional side of being sick, and is also good for the adrenal glands as it relaxes you all round.
The only downside is it can be quite a time commitment. But a ten minute guided meditation is probably plenty for the sleep benefits. I found doing it in the daytime when I was still alert and not going to start drifting off worked the best for me. Medics tend to see mindfulness and meditation as just a 'relaxatiom technique' and suggest you do it before bed. But having used it for years I think it is more of a restraining for your body and brain.
A great book to get you started is Mindfulness: A practical guide to finding peace in a frantic world by Mark Williams and Danny Penman. The book includes a cd (or online recordings if you buy it as an ebook) of guided mindfulness exercises. It's structured as an 8-week course, but you only need to do the first few weeks to learn how to do mindfulness. This is a really excellent and deep book that gives you enough material to meditate for years without any additions resources.
If you prefer an app Headspace is also quite good. When I tried it a few years ago I liked the free trial, which at that time was ten days of guided exercises, but to pay for it is quite expensive and doesn't add much. This is a much more hand holding approach, that doesn't give you the background and foundation as much. I have used it for a few months when I've felt really demotivated, and it's more good for how easy it makes things, rewarding you with little animations and gamifying everything. The book is also quite easy to use, though! I don't want to suggest it's difficult, because really mindfulness is surprisingly easy.
Once you have got a bit of expedience the internet and places like YouTube are full of guided practices to follow. I don't recommend it as much for total beginners because there are also a lot of mediocre and even bad ones. Its hard to find hidden gems. But for example I am now a big fan of breathing techniques and I love alternative nostril breathing.
I've also been lucky enough to find many face to face meditation groups and classes, and related techniques like sound baths, breath works, etc, in my neighbourhood.
AUDIO BOOKS (and podcasts):
I don't class these as such a big help as the other two items. But I've found it's really great to have a recording cued up so that I can start it without opening my eyes (I've mentioned that a lot. For me opening my eyes, moving too much or getting out of bed will wake me up a lot. I work hard not to get up for a wee in the night). The best thing about a recording is that it distracts you from unhelpful thoughts like "Oh no, I'm not getting to sleep". But also, particularly for audio books it means you're doing something constructive, and can be proud of all the 'reading' you've got done. Which I think helps enormously with accepting the situation, and turns a bad thing into a semi nice experience.
Audio books are very available today. I found I can borrow them digitally through my library for free. It just requires some messing around with apps on a smartphone or computer. I also found a charity online where volunteers make recordings that are available to disabled people. I'm a bit ashamed to admit the most listening I've done is through Audible the Amazon service, which makes it very easy to do. As usual this is one of those services that tries to set you up with a monthly subscription, but it is cheaper to buy the bulk package. I think I started originally with a year. They also email you often after you leave offering half price months, so I use those quite a lot.
Podcasts are also interesting listening and completely free. I use an app called Podcast Addict on my smartphone. Which allows you to search for and download episodes. These are like radio programs, with a low barrier to entry so many quite ordinary people are making them. Search for anything you're interested in and you'll surely find someone talking about it. TV shows or popular movies and books often have many podcasts about them, as do even niche hobbies, as well as many about general topics, comedy, current affairs, history, etc.
If you've never treidbefore podcasts before a few I'd recommend are: This American Life (glossily made US podcast about ordinary life), and their Serial series (documentary series that put podcasting on the map a few years ago, there are now several seasons available - all quite heavy listening), BBC Friday night comedy (there are loads of BBC podcasts, usually well made), No Such Thing As A Fish (QI researchers talk about facts they've dug up that week).
I haven't mentioned anything about thyroid treatment, which looking at your numbers you've got room for an increase, or things like vitamins which may also be helpful. As I think working on insomnia is in many ways as buffs job as sorting out supplements, and I think we need to work on one thing at a time and then rest
Hopefully some of these ideas are a bit of a help to you!
I'm sorry you are awake during the night when we want to be asleep.
One of Thyroiduk's Advisers (scientist/doctor/expert on T.3) took his one daily dose of thyroid hormones when he awoke in the middle of the night (to go to toilet), which meant that nothing interfered with its uptake. Dr Lowe had an accident and didn't recover
During the day he was able to do all of his scientific work and enable his patients to recover their health.
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