Can’t sleep 💤 : Happy new year everyone! Here’s... - Thyroid UK

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Can’t sleep 💤

JanieL profile image
50 Replies

Happy new year everyone! Here’s to a healthier and happier time for us all ahead 🙏

Does anyone have any advice on sleeping better with Hashimotos?

I actually stopped taking Levo a year ago so I could sleep ‘normally’ instead of sweating, feeling cold, tossing and turning all night even though I was physically exhausted.

Now I am on Eltroxin and suffer from fewer side effects than the previous brand but I haven’t slept well for days ... again.

I would consider asking my doctor for Valium so I can get a good nights sleep but wanted to check on here first. Does anyone know about good herbal remedies or any other advice to help with this super annoying side effect?

Thank you so much in advance

Janie x

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JanieL profile image
JanieL
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greygoose profile image
greygoose

Have you tried taking magnesium just before bed? Magnesium Malate might be a good one to try. :)

JanieL profile image
JanieL in reply to greygoose

Thank you for this Greygoose, yes I do take Magnesium before bed ... and selenium as I’ve heard this helps people with Hashis...

🙏

greygoose profile image
greygoose in reply to JanieL

Selenium helps with conversion, rather than with Hashi's - although a lot of Hashi's people do have conversion problems, it's true. I'm not sure it does much else. But, I'm not an expert on sleep problems because - touch wood - that's never been much of a problem for me.

JanieL profile image
JanieL in reply to greygoose

Oh I see... I have never found out if I have a conversion problem, would an endocrinologist be able to find out...?

Thank you!

I’m glad you don’t have trouble sleeping! 😊

greygoose profile image
greygoose in reply to JanieL

Well, you've got to get a break somewhere, haven't you! lol Got plenty of other problems.

An endo, or even a GP, can find out how well you convert, if they understand who these things work - which most of them don't. All you have to do is test the FT4 and FT3 at the same time and compare them. If you convert well, the FT3 should be just slightly lower than the FT4 in range.

JanieL profile image
JanieL in reply to greygoose

Thank you, I really should get this tested xx

greygoose profile image
greygoose in reply to JanieL

It would be a good idea, yes. :)

MissFG profile image
MissFG

I’m on amytriptyline without it I would be awake all night. I tried everything but nothing helped until I was prescribed these. Exhausted yet can’t sleep is the worst feeling so hope you get sorted soon

JanieL profile image
JanieL in reply to MissFG

Ooh that’s interesting, thank you MissFG I shall look into this...

Yes it’s a killer not sleeping, even if I have been to hot yoga class...still can’t have a proper deep sleep, that’s the elusive one!! Aaaarrggghhh!

MissFG profile image
MissFG in reply to JanieL

I meditate even doing a meditation teacher training course and hit yoga etc but nothing works.

Unlike sleeping pills which is highly addictive, Amytriptyline is considered a safe drug and my consultant said I can be on it long term if necessary.

JanieL profile image
JanieL in reply to MissFG

Yes, I do HIIT and yoga in the hot room too, feel really relaxed and ready for bed... then Boom!! “You ain’t sleeping tonight says my Hashimotos!! “

Thank you, will look into Amytriptyline! xx

Cooper27 profile image
Cooper27 in reply to MissFG

I'd caution against amytriptiline purely to help sleep. I took it for a long time for chronic pain, and I agree it gives you a solid night of sleep, but it does have side effects that I think are detrimental for those with Hashimotos.

It may not always work either. Someone I know started on it, and it gave them insomnia, and someone else I know took it for sleep, but then started abusing it and got addicted.

MissFG profile image
MissFG in reply to Cooper27

I was also prescribed it for pain and to help me sleep as the pain sleep cycle is recognised by the nhs.

Can I ask what side effects you know are detrimental to those with hashimotos as I haven’t had any other than an increase in appetite. But that I also assume is because I feel better as I am sleeping. I’m also on gabapentin but now only take it as and when I need.

Each individual is unique and what works for one may not work fir another. But pain could be an underlying reason JanieL isn’t sleeping that they haven’t associated as an issue. Amytriptyline is also used for other reasons including depression and anxiety.

Cooper27 profile image
Cooper27 in reply to MissFG

It's not commonly used for depression these days. Mostly just in low doses for pain management.

For me, the side effects were brain fog, fatigue, tingling in hands/feet , weight issues. They're common thyroid complaints in themselves, so it would potentially make them worse. I worry a doctor may wrongly dismiss thyroid symptoms as being a side-effect of the amytriptiline or vice versa too, and would not treat the thyroid complaints seriously.

I also suffered acid reflux (likely low stomach acid) and found the brain fog just didn't go away when I stopped taking the stuff, which makes me think they upset the stomach/gut.

MissFG profile image
MissFG in reply to Cooper27

You could be right. I have put in weight but have been eating more and enjoying my food a little too much lol so now finding it hard to lose.

I wish I could function without medication but I’ve found what works for me and has provided a better standard of living for me.

I’m not sure there is right or wrong answers you just have to find what works for you

Cooper27 profile image
Cooper27 in reply to MissFG

Definitely, if it works for your pain, it's worth the side effects! It just never worked for me/my pain, and I wouldn't want the side effects if I wasn't getting the benefits.

SlowDragon profile image
SlowDragonAdministrator

Are your levels correct

When were thyroid levels last tested

Add results and ranges if you have them

What about vitamin D, folate, ferritin and B12 levels

Poor sleep can be mix of low vitamin D, low B vitamins and low Ft3

As you have Hashimoto's are you on strictly gluten free diet?

JanieL profile image
JanieL in reply to SlowDragon

Hi SlowDragon,

Thank you for your help... xx

I take Vitamin D, Magnesium, Selenium and looking to get B12 injections...

I shall get retested and post on here, it’s overdue!

Yes, I’m a gluten free Vegan, I try my best to eat the rainbow and nutritionally high foods, as recommended by the Hashimotos “Bible” !

Hashimotos Protocol by Izabella Wentz

I may need your help again..... 😘

SlowDragon profile image
SlowDragonAdministrator in reply to JanieL

As vegan you likely need continuous B12 supplements plus daily good quality vitamin B complex

Iron and ferritin need testing regularly

JanieL profile image
JanieL in reply to SlowDragon

Oh ok, wow! Thank you 🙏❤️

JanieL profile image
JanieL in reply to SlowDragon

Any advice on what is considered a good quality B vit complex ? It’s such a minefield out there !! 🙏

SlowDragon profile image
SlowDragonAdministrator in reply to JanieL

Igennus Super B is good quality vitamin B complex that contains folate (not folic acid). Full dose is two tablets per day, but many people may only need one

Remember to stop taking a week before any blood tests as B complex contains biotin and biotin can falsely affect test results

JanieL profile image
JanieL in reply to SlowDragon

Brilliant advice, thank you so much SlowDragon, I’m getting the Igennus Super B 🙏xx

JanieL profile image
JanieL in reply to SlowDragon

Dear SlowDragon, I hope you are well 🙏

I need your help again, I’m so sorry to be a pain !

I have just ordered the Igennus Super B, what a fabulous, helpful company they are! (I mentioned the recommendation from Thyroid UK!)

I have decided to get the blood test done before starting on the B’s so they don’t affect a true reading, like you suggested.

I haven’t had a blood test for about 18mths and although my doctor usually says ‘yes’ to most of my requests, he is not very thyroid/hashis knowledgeable!!

Could you please let me know what exactly to ask for in terms of a full thyroid blood test?

I know for a fact I am Hashimotos positive from blood testing (since 2016) but I really don’t know about my T3 conversion, whether I am B12 deficient and anything else that will help get a ‘full story’ of my condition. There is so much to learn and take in!

Is there somewhere I should be looking on this wonderful site re extensive blood testing?

Thank you so much in advance 🙏

Jane x

SlowDragon profile image
SlowDragonAdministrator in reply to JanieL

Well NHS refuses to retest thyroid antibodies and it's not really necessary (though can be interesting to see if the TPO antibodies slowly drop when on gluten free diet)

You need

TSH, FT3 and FT4

Very unlikely to get FT3 tested on NHS

Ask GP to test

Vitamin D

Folate

B12

Ferritin

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)

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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

JanieL profile image
JanieL in reply to SlowDragon

Thank you!!

You are a star ⭐️

So much to do.....!!

Mamapea1 profile image
Mamapea1 in reply to JanieL

I can definitely recommend SlowDragon's Dr Gominak link...I had severe sleep issues for years, and her advice was spot on for me. There was also a video of hers on there somewhere, but I watched that a while ago. I had also changed my thyroid meds from Levo to T3 only, but the info on D and B vits was absolutely life changing for me.

I didn't realise how deficient I was...we don't usually check all the B's except for folate and B12. I followed her advice carefully and my sleep has been restored. It took a while, but was so worth it, as I now don't need to take any pharma meds and can sleep naturally through the night. Dr Stasha Gominak seems to be very knowledgeable about these things👍

JanieL profile image
JanieL in reply to Mamapea1

Wow this sounds hopeful, I am so pleased for you! Thank you Mamapea1 xx

Lora7again profile image
Lora7again

I don't sleep much either and before I realised I had thyroid disease I was awake for most of the night which actually helped me connect with the US thyroid sites like Elaine Moore

elaine-moore.com/

JanieL profile image
JanieL in reply to Lora7again

Thank you Lora xx

Wetsuiter profile image
Wetsuiter

Never found anything that works. i just kind of accept Im in a cycle (when i say accept, i still moan about it) then after a few weeks i seem to cycle round to sleeping all the time. Either wayI'm knackered and always somewhere along the way, blame myself.

The only 'help' ive been offered is referral to a 'sleep clinic', which was actually a sleep apnea clinic. No help for either cycle, although because of the change in cycles, it did appear to behelping on their stats for a bit. Acynical part of me wonders if theDr got a payment for referring me. but i dont know how the finances work.

JanieL profile image
JanieL in reply to Wetsuiter

Aw it’s bloody hard hey?!! Thank you Wetsuiter, you are right, it does go in cycles, you are either in a half decent state or a crap one!! xx

JanieL profile image
JanieL

Oh wow!! Some great advice here Janey... from one Janie to another!! 🙏 I must try meditation... 💖

JanieL profile image
JanieL

Aw brilliant! I shall investigate Nidra yoga ... 😘🙏

DebTex profile image
DebTex

Hi, I have had sleep issues for a long time and it’s still an ongoing thing, I’ve tried many different things but nothing really helps much but I do steer clear of sleeping pills. Since you mentioned that you are considering asking your Dr. about Valium I thought I would tell you of something that I have tried that did have a calming affect on me, I tend to be tightly wound sometimes. It’s by Standard Process/Whole Food Nutrient Solutions. The thing I tried from them is called Min-Tran, that states that it is a mild calmative that helps maintain emotional balance. The 2nd one that they have is Min-Chex that is a moderate calmative and the 3rd one is Orchex that has a potent calming effect. You can’t order them from Standard Process unless you are some kind of practitioner but you can get them from Amazon. I would try one of those if I were you before I got anything that has the potential to get addicted to. Good luck to you!

JanieL profile image
JanieL in reply to DebTex

Aw thank you Deb Tex, yeah Valium is a risky one, should be a last resort! When you feel like death warmed up, you have desperate thoughts hey!!

I shall look up these products on Amazon, thank you so much! 🙏

DebTex profile image
DebTex in reply to JanieL

You’re so welcome! Standard Process is a good company, they’ve been around a long time.

DebTex profile image
DebTex in reply to JanieL

I just decided to look at the ingredients on my Min-Tran bottle and it’s 3 different calcium’s, organic alfalfa and (kelp, which has iodine in it)and iodine is controversial for thyroid patients to take and Min-Chex has Iodine and glandulars in it and I didn’t see any iodine in the Orchex but has glandulars in it which is animal tissues that try to enhance the function of or mimic the effects of the corresponding human tissue. So I am thinking these are things not everyone wants to or should be taking, that’s why Standard Process doesn’t sell to the general public. I don’t worry about it because I only take it occasionally. Be sure to always read the ingredients on anything that you are wanting to take. Best wishes.

DebTex profile image
DebTex in reply to DebTex

I’ve only taken the Min-Tran not the other 2. 😁

JanieL profile image
JanieL in reply to DebTex

Ooh this is interesting... hmmm not sure I should take it cos I’m vegan! Thank you for all the research though Deb, tbh I think we have to look outside what the NHS and doctors are willing to prescribe... and keep an open mind!! Let’s face it, doctors aren’t that great when it comes to our thyroid issues ! Thank you so much 😘

DebTex profile image
DebTex in reply to JanieL

You’re welcome, I wanted to check them out, I’d feel bad recommending something that might not be good for some people, people do take glandulars but you have to be careful about it, Armour thyroid has porcine thyroid glands of pigs.

JanieL profile image
JanieL in reply to DebTex

Yeah, I think I would have to be pretty desperate to take glandulars because I am Vegan, but never say never!

Cheers Deb x

DebTex profile image
DebTex in reply to JanieL

I’ve taken some before and a few of them didn’t agree with me.

Lora7again profile image
Lora7again in reply to DebTex

Valium or Diazepam is extremely addictive and once you start taking it will be hard to stop.

here is a link about it

recovery.org.uk/prescriptio...

DebTex profile image
DebTex in reply to Lora7again

I just kind of glanced over that, I saw where Valium is commonly prescribed for sleep disorders, I would qualify for the sleep disorder category but I would and do try everything that I could before I took anything that has the potential for addiction, I have enough problems without creating more. I do know what it feels like at times to be desperate for a good nights sleep though.

JanieL profile image
JanieL in reply to DebTex

Yeah... I am going to try natural sleep remedies, thank you Deb Tex x

JanieL profile image
JanieL in reply to Lora7again

Thank you xx

DebTex profile image
DebTex in reply to Lora7again

I looked at this again, I think that you meant it for JanieL?

MichelleHarris profile image
MichelleHarris

I was started on Mirtazepine after experiencing 18 mnths of one and half hours sleep a night at most, and I was shaking from head to foot by the end of it during the day. Night terrors, shouting and moving about.

Sleep clinic was useless.

Mirtazepine did help.

Put on loads of weight. It makes you crave sweet stuff.

Stopped it.

Tried Amitryptilline which did nothing at all for me but have heard positive results from others.

Tried Pregablin and works amazingly well for me.

But best of all was discovering I had Thyroid issues which all these useless well paid specialists missed.

I dont have night terrors since starting hypothyroid treatment. I use Magnesium spray every night on advise from this site. If I wake up early a few nights in a row I’ll take Pregablin. It works amazingly for me. It is used for anxiety and nerve pain x

JanieL profile image
JanieL in reply to MichelleHarris

Aw bless you, I can’t imagine how bad you felt on so little sleep for so long... so glad you found the right drug for you.

I have so much to look into, thank you for your advice Michelle! 🙏xx

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