Levothyroxine at night, terrible side effects

[Peanut31]

Hi

I put a post up here the other day about taking Levothyroxine at night.

I normally take it in the morning (6am), but, despite sleeping right through the night, I don’t feel refreshed at all, and my temperature is dropping again when I take it in the mornings 36.2/36.3

I’m currently on 100 mcg of Levothyroxine and I have a blood test booked in July 8am for an increase (hopefully)

Anyway I took the advice on here about taking it on an empty stomach etc.

First night, I had some weird dreams, felt cold in the morning and still like a zombie.

Second night (last night) oh my word, my brain felt like it was making a sizzling sound, then all I remember is waking up in the middle of the night, siting bolt up right convinced someone was in the bedroom, I was then sweating, and I remember feeling paralysed. The paralysed feeling I don’t know if I was asleep in a dream.

I’m tempted to give up on the night dosage and revert back to the mornings?, as I sleep right through normally.

I must admit this morning I didn’t feel as much as a zombie, but obviously to help the thyroid I need a good nights sleep. My temperature was 36.0, I take it the same time everyday (that was what it was before I was on Levothyroxine)

Should I revert back to mornings?

is it my body saying it doesn’t like the new night routine?,

Best wishes

Peanut31

[Fruitandnutcase]

I would have much preferred to take mine at bedtime when I was taking it as part of block and replace. I tried but it didn’t work out for me - can’t remember exactly why - so I went back to waking up early in the morning and taking it an hour or so before I got up for breakfast.

Know what you mean about sleep paralysis. I used to get that. I haven’t had it for a while and in my case I doubt if it was connected to my thyroid. It’s a well known phenomenon and it’s a really scary and weird feeling.

[Peanut31 in reply to Fruitandnutcase]

Thanks for your reply

I have never experienced that paralysed feeling, until last night, yes it was frightening.

I don’t mind taking it in the morning as I set my Fitbit to vibrate on my wrist so I don’t wake my hubby.

I changed to night time as I had read it maybe more beneficial and I was hoping it would help my symptoms further.

Best wishes

Peanut31

[Fruitandnutcase in reply to Peanut31]

Same here a lot of people take theirs at bedtime. I changed when I was going out somewhere and forgot to take my levothyroxine early. That meant I had to take my breakfast with me in the car ( I love my breakfast) and an hour and a half into the journey I started eating it.

Google ‘sleep paralysis’ and see what you find - there is loads of information on it. I used to feel that there was someone very scary there, either coming up the stairs or waiting just outside the bedroom door ready to get me. I never ever saw anyone, it was just a feeling and I couldn’t move or scream. I think I must have dozed off in the end.

I was also much younger when it happened I imagine in my forties or maybe fifties - and I was always alone in the house. I’m nearly seventy now and it hasn’t happened for years - maybe you grow out of it with age or maybe I have less stress in my life now.

[Peanut31 in reply to Fruitandnutcase]

Oh god, I’m 40.

I think I’m going back to the morning dosage, 6am with breakfast at 7.30am.

Thanks for the advice.

[Treepie in reply to Peanut31]

I had sleep paralysis before I was diagnosed.I find no difference whether I take before bed,in the middle of the night or the morning.

[Kittylitter2 in reply to Peanut31]

I have experienced that paralysed feeling too and I stopped breathing it is very scary as you are in a deep sleep but are just coming round enough to know you are running out of oxygen, but cant do anything about it, and you have to muster every bit of strength to jolt yourself to start breathing again.

[shaws Administrator]

I would give it a couple of more nights to see if it does/doesn't work for you.

[Hashihouseman]

It never ceases to amaze me how many people seem to be able to tolerate large doses of thyroxine, the healthy thyroid gland never produces that much all at once. I get severe side-effects if I take more than 30 to 40 µg in any one go so I split my dose midnight 6 AM midday. That seems to help. The ‘received wisdom’ often repeated (and therefore becoming more established but not necessarily true) is that thyroxine is virtually inert until converted the body and has no direct effect on metabolic state such as a dose of T3 would do. I think this is bollocks. I can feel it and my blood tests show it. And there’s more research coming out which suggests that not only does thyroxine have a direct effect in thyroid allostatic signalling in the brain it also has positive and negative feedback on free T3 levels through the body at the cellular level i.e. where the free T3 work is done. Whatever it’s directive effects, which could also include non-thyroidal side effects such as interfering with histamine levels in the gut, it doesn’t hurt to split the dose for all the aforementioned reasons. What could possibly go wrong......

[jessjbf]

Since taking thyroxine I have very vivid dreams and sleep very heavily and like you don’t feel refreshed. I could sleep all day given the chance. I take it in the morning. I eat late so can’t take it at night. If you are worse off then go back to the mornings. I think it’s a bit of trial and error and people react differently. Do what’s better for you would be my advice. You can always change back to the evenings. Good luck 😀

[2016Gilian]

I take mine in the morning 175 mg and still under active constantly cold unless heating is on recently getting a stinging sensation through my body

[Lovecake]

I get migraines which generally start over night. If I take Thyroxine with a bit of a headache it turns into a migraine. I have to take Imigran for the bad head. But I can’t take Thyroxine within 3 hours of the Imigran. So I have been taking my Thyroxine an hour before lunch for 2 years. It certainly stops me from snacking after breakfast. Unfortunately we are not getting the proper help we need from GP’s etc. I don’t take mine at night cos I regularly need a late snack and am concerned I would sleep worse.

[Peanut31]

Thanks for the replies

I reverted back to the morning, to see if I had an bad night.

I slept like a baby, no horrible nightmares, so my body does not like the night time taking.

Best Wishes

Peanut31

[Machupa in reply to Peanut31]

Glad you have found a way that works for you. I can only take T4 in the mornings on am empty stomach.

[Tile in reply to Peanut31]

If you fasted when you took it at night what possibly was happening was hypoglycemia which spikes cortisol which could wake you.

[Peanut31 in reply to Tile]

Yes I fasted.

I’ve gone back to taking it in the morning.

Best Wishes

Peanut31

[Petronella]

My pharmacist automatically prints out advice on my Levothyroxine labels:

"One To Be Taken Each Morning At Least 30 Minutes Before Breakfast, Caffeine-containing Drinks Or Other Medication"

I asked my (Dutch) GP about this, and he said, "Take it with your breakfast if you want, but don't take it when you go to bed." In fact I put my 100 and 25 mcg pills under my tongue when I wake up in the morning, to dissolve while I make my early-morning cuppa!

[helvella Administrator Thyroid UK in reply to Petronella]

I get two different tablets prescribed - 100 and 25 micrograms.

My usual pharmacy prints the same message about 30 minutes on one of them but not the other.

In my view, that shows how random the advice is.

[Annkapp in reply to Petronella]

It is my understanding you can take it with breakfast but will require a higher dose than if you took it on an empty stomach (because less will be absorbed with food)..

[mommalaurat]

Hello, lots of docs here in the US are having luck with their patients, working on healing their patients gut by changing what they eat. When you get a second, Google, Dr. Jolene Brighten , The Thyroid Gut Connection + 4 Steps to Heal Your Gut. Or simply Google Gut and thyroid, she is one of many docs out there with suggestions. I am sure many would laugh at this, but worth a try! I have quit all my meds, blood pressure, and thyroid. Hate to say, I have not had a blood test in years, and feel great. The tests are way too expensive as I have no Insurance. I am 55 years old. Understood that everyone is different, but we all just want to feel good. Best of luck.

[Eliotf]

Peanut31, I have been on Levothyroxine since the mid 1990's and learned the same thing. Take it in the am VERY FIRST thing when you wake up or even if you have to tinkle early in the am. 95% of the time I can give it an hour prior to eating. After talking with several physicians over the years here is what I found out. Levo has and is a binder. This means it will bind (get attached) to anything and everything, in the stomach thus reducing its effectiveness. When it binds it becomes ineffective. Water only to wash it down. This does mean you will have to take more if you are doing it with food or drink. Some foods are worse than others. As for taking it at night it is almost like a low dose speed. This is why you were having trouble sleeping the T4(levothyroxine) lasts almost a week in your system. Each organ in your body takes what it needs and converts that to T3 which lasts only a few hours. I am also taking T3 because one or more of my organs/system did not convert because no matter how much T4 I took (currently on 137mcg) it was not working. I take 5mcg of T3 in the AM as well. Dr approved for same time. When I first started taking the T3 it was very much like speed. Now that my body is used to it -no problem. The window for me taking them varies between about 5:30 to 10am ( I have sleep issue unrelated) mostly taking it at around 7-7:30. Good luck. When you are in the Doctors office ask lots of question. If your GP does not know ask to go see an endocrinologist.

[Peanut31 in reply to Eliotf]

Thanks so much for your detailed reply.

I take Levothyroxine at 6am and breakfast at 7.30am. I take Levothyroxine with water.

I mentioned to my GP that if I wasn’t converting well, would he consider T3 (I knew he couldn’t give me it) his reply was that none of his patients needed T3 even those that have seen an Endocrinologist.

I saw an Endocrinologist who diagnosed me with Hashimoto’s, but said no medication would help.

I got worse that’s when I saw my GP and my TSH was 12.2 and he started me on Levothyroxine.

I can guarantee my GP will not entertain T3, at the moment.

I’ve been posting my results on here every time and at moment I am converting ok, but I don’t feel 100%, my next blood test is in July and I wonder if I should do the reverse T3 blood testing?

I’ve ordered some T3 and extra T4 incase my GP reduces my Levothyroxine.

I’m reading Paul Robinson’s book at the moment for further guidance, as it appears you have to be very careful with T3?

What dosage did you start on T3.

Best wishes

Peanut31

[Eliotf]

I am on 5mcg in the am as my Endo told me and he was right, at first it was like speed, more for the mind, after a few months it became no big deal. One of the problems with t3 is that you would have to take it 2-3 times a day. Do some research.

If your doctor is poo pooing your conversation find another or get another endocrinologist. I politely listen, ask questions, ask for all the options and the pitfalls that go with them, then make my decision. For the thyroid nothing is immediate so I have chosen up to a week later.

If your Hoshimoto's is eating up your thyroid fast, you have to keep an eye on how you are feeling.

There are advantages to the desiccated (real) thyroid as it is more well rounded and should have the right balance of t3 & t4 and other items the thyroid produces. The bad part is that it is may not be as even a dose from month to month. I have heard you have to take it 2x a day. Not sure.

There are various tests: t3 & t3 free, t4 and t4 free, tsh and a thyroid globulin test as well. Demand all of them. upon changing doses it is at least 6 weeks till the next blood test. The tsh and t4 work on a feedback loop opposite each other. As one goes up the other goes down. The tsh is from your pituitary gland, so that could be the issue too.

Good luck