Levothyroxine side effects - sleep: Hello, very... - Thyroid UK

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Levothyroxine side effects - sleep

LTS1985 profile image
15 Replies

Hello, very new here. I’ve recently started Levothyroxine after trying to conceive with no luck. My TSH is “subclinical” at 6. The doctor has put me on 75micrograms and I have been on them for a week.

Is it quite normal to feel jittery off them or am I on too strong of a dose? My symptoms include:

Morning nausea

Morning jitters, shaky hands

Terrible broken sleep (overheating, general fidgeting)

Anxiety (I’m not normally a stressy person)

I’m booked in mid February for a follow up blood test, but I’m wondering if I should move it forward.

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LTS1985
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15 Replies
helvella profile image
helvellaAdministrator

You will likely be repeatedly reminded that we are all different!

I take my levothyroxine at bedtime. (When do you take yours?) And believe it helps me sleep. Although I have not done so for some time, the extremely odd occasion I forget to take before going to bed, I find I do not fall asleep as usual. While lying wondering why I am still wide awake, I remember, take it, and end up falling asleep after a while.

You might be on too high a dose. Indeed, starting on 75 micrograms is quite unusual. But that doesn't mean you won't end up there, but more often after a process of titrating up from (typically) 50. That allows some time for your body to adapt to taking any, and some testing and incrementing.

LTS1985 profile image
LTS1985 in reply tohelvella

hello, thanks for your quick reply. I hadn’t considered taking them at night! I’m taking them as soon as I wake up. Perhaps I should try that instead. I think because he’s trying to get my TSH optimal for pregnancy, he’s gone in quite high, I just wondered if these symptoms might settle down once my body has acclimatised to them.

helvella profile image
helvellaAdministrator in reply toLTS1985

It is quite possible they will settle down.

But it might have been more gentle to start lower.

Did you get any other test results? Like Free T4? Or ferritin? Or B12? Or folate?

A lot of hypothyroid people end up with at least slightly low iron levels.

It is daft to spend possibly months getting your thyroid hormone level adequate/good and leaving other issues to fester, or even worsen.

Are you on a single tablet? Which will be Teva. I ask as some find Teva levothyroxine itself seems to cause them problems. Like stomach discomfort.

Sparklingsunshine profile image
Sparklingsunshine in reply toLTS1985

As our lovely Helvella has righly said starting you off on 75mcgs could be too high for you. Unfortunately tackling thyroid issues is more of a tortoise than a hare approach. Slow and steady. Normally we start at 50mcgs and gradually increase by 25mcgs every few weeks.

It might be worth dropping to 50mcgs so cutting your tablets into quarters and taking 3/4 of one. A faff I know with small tablets. Or it could be that Teva brand doesn't agree with you. Its something of a marmite brand, people either love or hate it. If it is Teva that you are taking.

LTS1985 profile image
LTS1985 in reply toSparklingsunshine

Luckily I’m on two tablets, a 25 and a 50 so I could just cut out the 25 and see how I get on. I did find it uncommon to start at 75 as I’ve been reading a few other posts and noticed that people with a higher TSH than mine has started on a lower dose. But I’ve also noticed on some threads that they say starting below your recommended dose / weight ratio is a bit pointless too. It’s hard to know what to do when there’s conflicting data out there.

helvella profile image
helvellaAdministrator in reply toLTS1985

I suspect that in some imaginary future, we might see people started on modest doses - 25 or 50 - but see their doses increased by small increments sometimes more quickly than is usual, sometimes more slowly. But based on how their bodies cope and change.

Sparklingsunshine profile image
Sparklingsunshine in reply toLTS1985

My TSH was higher than yours and I started on 50mcgs. Sometimes, particularly if we've been hypo for a while, taking too much Levo too soon can be a shock to the system, which has grown accustomed to idling along.

Although Levo is normally increased in 25mcg increments some people prefer a 12.5mcg increase or even 6.25. Its very individual.

The other thing to try is splitting your dose, 75mcg might be too much at once but you could take 50mcg in the morning and 25mcg later in the day or even at bedtime. We have some members who prefer dosing this way.

SlowDragon profile image
SlowDragonAdministrator in reply toLTS1985

You could try splitting the dose for a few weeks

25mcg waking up and 50mcg at bedtime

It could also be Teva brand upsetting you

Accord doesn’t make 25mcg tablets

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free.

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

LTS1985 profile image
LTS1985

I had a few tests done, but I’m going to ask them to check my FSH, LH and progesterone too as they didn’t do that.

My tests were (which I believe are normal);

Free T4: 14 pmol/L

folate: 17.7 ug/L

b12: 598 ng/L

ferritin: 77 ug/L

I don’t think they checked my iron as it’s not listed, but last time I had it checked in 2021, my iron level was slightly higher than it should be.

The tablets I have been given are;

Teva 25 micrograms and accord 50 micrograms, so two different brands.

I think I’ll give this dose another week, then call them to reassess my bloods in the new year.

Sparklingsunshine profile image
Sparklingsunshine in reply toLTS1985

Just to say I prefer Accord and have it as a named brand on my prescription. You could cut a 50mcg Accord in half and take 75mcg that way. Mixing brands doesn't agree with a lot of people. This thyroid lark involves a lot of experimenting 😆

LTS1985 profile image
LTS1985 in reply toSparklingsunshine

I’m beginning to discover the thyroid thing is a whole new world. I’m the only one in my family with this, and it wasn’t until I’ve started trying for a baby that I have realised there’s an issue. I have no symptoms whatsoever.

I appreciate hearing everyone’s advice on this website, makes me feel less overwhelmed about it all xxx

Sparklingsunshine profile image
Sparklingsunshine in reply toLTS1985

Regarding brands its not the medication that is the issue, its the fillers manufacturers use in the tablets that can cause issues. When I was first diagnosed one brand really aggravated my IBS, I then tried Mercury which made me itch. Mercury contain acacia powder.

Teva contains mannitol which seems to upset a lot of people. However Teva is lactose free which is important for some patients.

I've settled on Accord, which seems to suit me best. GP's and some pharmacists would have you believe they are all the same and it doesn't matter. But that is not the experience of patients who have to actually take them 😆

J972 profile image
J972

I experienced all the symptoms you mention when starting out on Levothyroxine (in August). FYI I take mine early morning. I’m still optimising my dose and had to start really low and slow, using a pill cutter. You may find that starting with 25mcg suits you better, until your body becomes accustomed. Have you been prescribed 2 different brands by any chance? If so, just be mindful that mixing brands can sometimes prove problematic so, if you want to reduce the variables, perhaps stick with one for now.

Good luck.

LTS1985 profile image
LTS1985 in reply toJ972

Yes I have! They’ve put me on Accord and Teva. I didn’t actually notice until I was asked on this thread. I’m tempted to miss the 25 Teva and see how I go on the 50 Accord. It’s reassuring to know I’m not the only one with these side effects. Did you find your TSH came down even with the lower dose? Or did it only come down once you built up to the recommended dose?

J972 profile image
J972

I slowly built up to a tolerable starting dose over a few weeks, as the side effects subsided, then held it there for approximately 6 weeks. I then tested (privately) and, yes, my levels had improved.

‘Recommended dose’ is a tricky one. Everyone is different and will reach their ideal replacement dose at different points. This forum is an absolute wonder, the admin team and contributors are unbelievably generous with their help and insights. You’ve come to the right place.

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