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Have you ever missed doses of levothyroxine?

61 replies

CrazyPuddin · 22/08/2020 07:33

Posting here for traffic.

Have you ever missed doses and had effect from this?

I’m currently feeling rather poorly and trying to establish if this is the cause.

I usually take 125mcg daily and realised I’d taken about 5 days worth in 1 month due to forgetting most days.

For the last week I’ve had a constant headache that eases with painkillers but doesn’t go away completely. My heads felt foggy and I feel sort of dizzy. Like when your brain cannot keep up with your eyes.

Also had nausea, felt completely exhausted and some achy muscles.

I’ve now found an app on my phone that hounds me until I mark that over taken my medication and have now managed 5 days in a row but don’t yet feel any better.

I guess I’m not sure if me messing my medication is the cause so wanted to hear others experiences.

I’m also really struggling to get a gp appointment at the moment.

OP posts:
seven201 · 22/08/2020 09:02

I use the Medisafe app and have the tablets by my bed for when I wake up. I hate that I'm not allowed tea or breakfast for half an hour!

If you've missed so many tablets it's no wonder you're feeling rough. It will take a good while to feel better again.

I take it for IVF, so I don't need it in 'normal' life as my levels are too high for fertility reasons but otherwise ok. So yes, i guess it must affect your cycle in some way.

StatementKnickers · 22/08/2020 09:06

So you've missed 25/30 doses? That's a huge amount. You've effectively dropped your intake to 20mcg/day. How can you forget something so important?

RhapsodyandAshe · 22/08/2020 09:13

Problems with the Thyroid can impact every single thing in one's body. So taking the thyroxin is very important.

Interested in this thread?

Then you might like threads about this subject:

OrientCalffromtheLandofTute · 22/08/2020 09:14

That's a lot of missed doses. I was rubbish at remembering to take this medication until I was prescribed T3 - I never forget now because it makes such a massive difference.

I forgot to take levothyroxine on holiday once so had three weeks without it. Didn't feel any different.

In fact I didn't feel any different when I did take it - that was the problem. (Probably why I kept forgetting to take it.)

It was only when I had 40mcg of liothyronine added daily (20 in morning, 20 afternoon) that I noticed a difference. I am also on 150mcg levothyroxine at night.

Massive difference - I now feel alive. Everyone noticed when I started taking it. It works within the hour. I was dancing around the house singing to the radio (my children were actually frightened) Grin I actually felt warm and I had colour in my cheeks for the first time. I kept asking everyone, is this what it's like to feel normal? Lots of other differences too over the first month of commencement of the dose. Best cure for depression and constipation ever. All my worst symptoms disappeared quickly.

I think levothyroxine has longer half life than liothyronine - it last about 7-9 days in the body whereas liothyronine clears the body completely in a couple of days.

I don't think it was working for me, I was on 300mcg a day. That's been halved since the second drug was added.

daffodilbaby · 22/08/2020 09:14

You will improve over time but it will take 6 weeks to stabilise completely. Yes it absolutely can affect your periods and your fertility. I used to be terrible at forgetting does (although not for weeks, just the odd day) now I keep them by my b d and it’s the first thing I do when I wake up. If you miss so many you will be exhausted, and very unwell.

muckandnettles · 22/08/2020 09:20

This is a very useful thread for me as I've just been prescribed this so taking it for the first time today. I have now installed the app to remind me about it, which I hadn't thought of before. It's interesting to hear what a difference it has made to some of you. My symptoms sort of crept up on me gradually over a long time I think, and although I didn't feel unwell now that I've been diagnosed I can recognise all the tiredness and other symptoms quite clearly. How long did it take before you felt it really kicked in when you first started taking it?

Wherrsmaclickypen · 22/08/2020 09:37

Op, you have a high dosage of levo, so must need it pretty badly and you cannot be surprised if you dont feel well without. It is pretty fundamental to making your body work. In most cases its a drug for life and is not prescribed lightly. I dont mean to sound harsh but you urgently need to rethink your approach to 'remembering'. I dont understand when through the day you realise you aren't feeling great and STILL don't think to take it. 🤷🏻‍♀️ Some good tips from pps, use them.

Coffee is clearly contra-indicated as it reduces the absorption of thyroxine and therefore the effective dose. Moot point whether 30mins or an hour before or after is ok. (I trawled through piles of research as I love my coffee but wanted to make sure I wasnt wasting the thyroxine). I agree there are schools of thought on when to take it - the data sheet usually says morning but I take it at night to avoid the coffee dilemma and that works for me.

Lethargy, muscle weakness/aches and headaches are all classic symptoms of hypothyroidism. If you did get a GP appointment I imagine they would simply say 'take your meds' as it would be pretty hard to eliminate that as the cause as it stands, but it might help to chat to them about the importance of taking your medication and the possible consequences of not doing so to help you understand your condition.

Hope you feel better soon.

Wherrsmaclickypen · 22/08/2020 09:48

OrientCalffromtheLandofTute Yep, although thats really another strong argument for take levothyroxine as prescribed ...so that - if symptoms dont improve - you can fight for a reassessment of range results and whether T3 is required.

Its great to hear from someone whose health has clearly improved so much with the right meds!

CrazyPuddin · 22/08/2020 09:59

I know how stupid it seems that I have forgotten to take them so often. And it’s one of the reasons I came off antidepressants around a year ago.

Unfortunately one of the causes of hypothyroidism is forgetfulness and memory issues. Something I’ve suffered from for as long as I can remember.

It just doesn’t enter my head to remember to take them or I remember but then am unsure if I’ve already taken them.

The chemist now puts them in blister packs with days of the weeks but even remembering to go and pick up my prescription is an issue.

I can remember in depth processes needed for work almost like auto pilot yet I can be watching something on the tv and when they adverts come on I can’t remember what I was watching.

I can’t remember famous people’s names or what’s happened in a film I’ve watched. Things like knowing where places are in the world or political stuff I can’t remember either.

It’s frustrating because it makes me appear stupid to people when I’m really not. Maybe just stupid in not being able to take my life long medication when I should.

I even lose whole strips of medication at times because I forget where I have put them. I frustrate myself so much.

The app seems to be helping though as I’m on my phone often and it pops up over and over again until I’ve take them.

I’ve already forgotten to take today’s this morning but have just eaten because I felt sick. So assuming I now need to wait for 2 hours before I can take today’s. Not the best start to doing this right.

For the person that asked about when I first got diagnosed I felt exhausted and sick constantly. When I first started taking medication I think I noticed a gradual improvement but it took months to feel normal as they started me on a very small dose and after regular blood tests it was upped gradually.

I suspect I’m still not on a high enough dose but understanding the doctor will not change my dose unless I’ve been taking my tablets correctly for months. He did a blood test months ago to test for other things and my thyroid was not right but because I’ve been missing doses he said he couldn’t take it as accurate.

OP posts:
Wherrsmaclickypen · 22/08/2020 10:05

CrazyPuddin that sounds so frustrating and such a Catch 22 for you. Is there anyone who can give you some support? Apps are one thing but it sounds like you could really do with a memory friend who understands your forgetfulness and keeps you on track. Good luck.

EssentialHummus · 22/08/2020 10:06

muck I’d say a month or more unfortunately. In much the same way as things slowly deteriorate pre-diagnosis you find (or I found, anyway) that things improve imperceptibly so that suddenly it’s gone 8pm and you realise that you don’t need to crawl up to bed just yet.

muckandnettles · 22/08/2020 10:13

@EssentialHummus thank you, that makes sense. I'm actually feeling a little excited at what differences I might notice! I'm going away for a week in about 3 weeks time, so if I feel even a bit more lively by then it will be great.

Pythonesque · 22/08/2020 10:14

One thing about thyroid medication, unlike many others, there is no reason it has to be a once daily dose, except that for most people it is easiest to remember to take something once a day. If you have your medication in labelled blister packs that is great - if you have missed a dose do take it the next day when you realise.

I have not had to take thyroxine (thank goodness - high risk for hypothyroidism and have been monitored annually for 20 years), so I'm not familiar with the instructions regarding what you should or shouldn't take it with. But, if you are finding that hard, I would say that just taking it is better than waiting and then forgetting to take it at all.

I hope you can keep improving your systems for taking it and start to function better soon.

CrazyPuddin · 22/08/2020 10:16

@muckandnettles for years people used to roll their eyes at me needing to be in bed by 9pm because I was just so exhausted everyday. I couldn’t go on nights out like the rest and I just felt so ill every single day.
I started to wonder if I wasn’t normal. But when the medication worked as it should I felt so different. I could go out for a full day with the kids and naps were no longer needed.

I’m actually looking forward to getting back to that lol. Tbh if this headache went away and the dizzy feelings I’d manage fine. And even though I’m exhausted right now I’m still not as exhausted as I was pre medication.

OP posts:
relievedlady · 22/08/2020 10:20

Op I'm on 125 one day and 150 the next.

I have a daily pill box that I fill every Sunday and it sits on my dressing table next to my coaster I put my morning coffee on when getting ready.

I've been on Levo for over 7 years due to having emergency thyroidectomy due to being severely overactive and out of control.

I've had years of researching etc and knowing my own body reactions and I can tell you if I miss more than two doses in a week it takes about a month for me to start feeling remotely ok again.

Not taking it for as long as you haven't is going g to take your body a long time to get bak up to the correct levels.

I'd suggest taking a very good multi vit plus extra calcium and vitamin d alongside.

The better your levels the better your body absorbs the levo.

Op in a kind way but give your head a wobble.
Long term missed levo will have a detrimental effect on your health. Including bones and heart.

It's not an area to be messed with.

muckandnettles · 22/08/2020 10:24

@CrazyPuddin it sounds as if I'm extremely lucky to have been diagnosed so easily in the end, though not sure how long I've had this. It was my Smart watch that I had for Christmas that prompted me to speak to my GP as it kept showing a very low resting heart rate (40 quite regularly, sometimes lower when it should be 60 - 100) At first he said it was probably just faulty electronic readings, but to be fair he gave me an ECG and a load of blood tests and abnormal thyroid showed up. Once I googled all the symptoms, it made sense. I'd thought I was just losing it a bit as I got older and lockdown had made me feel a bit peculiar, so goodness knows how bad things would have got before I discussed with the GP otherwise. I really hope you manage to get back to normal soon!

VenusStarr · 22/08/2020 10:27

I'm on a much smaller dose, but I have them next to my bed and take it as soon as I wake up, so it's on an empty stomach first thing. That's helped me remember.

RufustheSniggeringReindeer · 22/08/2020 10:59

Oh shit

I’m say here makeup on and no tablets taken 😀

Im going upstairs....NOW

CrazyPuddin · 22/08/2020 11:05

What happens if you take more than your dose? I’m guessing it won’t get into your system any quicker? Not something I will do just made me wonder.

OP posts:
starfishmummy · 22/08/2020 11:08

@PhilCornwall1 same here. Washed down with my morning cuppa. I also read somewhere not to take it at the same time as vitamin D but a pharmacist friend said he hadnt heard that one!

SockYarn · 22/08/2020 11:43

@muckandnettles agree that you shouldn't expect to see instant results. It crept up on me over so long, It was only when I went to see my GP with horrendous periods that she ordered blood tests and found that my levels were borderline, and in the couple of years after that, they dipped further.

For me it was tiredness, however early I went to bed I couldn't get up in the morning. Frequently fell asleep during the day on the sofa. Couldn't concentrate. Skin and hair condition was dreadful. Thinning eyebrows. Irritable bowel type symptoms. Depression. Carpal tunnel syndrome. Lots of little things which just got worse and worse over time.

I started on 50 mcg then they gradually increased every 3 months to 75, then 100 then 125 and now I feel a lot better. The irritable bowel symptoms have gone. I'm not as tired any more, eczema has disappeared on my eyelids. The symptoms arrive slowly and disappear slowly too, and it might take a while to get the right levels of thyroxine for you.

SockYarn · 22/08/2020 11:47

@CrazyPuddin Never exceed the stated dose.

It's like any hormone, your body's making it on a constant basis, so you need to take it every day. Just like the contraceptive pill - you have to take it every morning so that it works. You can't forget three days and take four all at once to catch up and assume it'll all be OK.

Prolonged high doses can cause osteoporosis, and would probably give you all the symptoms associated with an overactive thyroid - tremors, racing heartbeat, insomnia, feeling "jittery".

FightMilkTM · 22/08/2020 11:53

Whilst it’s already been confirmed by other people on here that, yes, you will notice the difference I just thought I’d give an interesting (to me!) point of view.

Hope this doesn’t offend! But my mum massively notices the difference if she’s misses the dogs dose of thyroid medication Grin
Really lethargic and grumpy until she gets her next dose. So it’s certainly not psychosomatic.
It also took a while to get the right dose for the dog but she’s been stable for years now. So it seems once you get the right dose things do even out somewhat!

CherryPavlova · 22/08/2020 11:54

Thyroxine is cumulative. The odd missed dose won’t have significant effects. Missing more doses than you take will.
Similarly it takes a few weeks to build up in the system again and for benefits to be seen.
Make sure you take regularly is the answer. Lots of advice about how to manage that. Even if you’ve eaten, take today’s dose. Wait a little while but take it. It’s better to take on a full stomach than not take at all.

muckandnettles · 22/08/2020 12:32

@SockYarn thank you for your reply. It is the tiredness that I'm hoping to see a difference in. If you'd asked me before diagnosis if I felt tired I'd have said no, but actually now I come to think about it I am! It's a sort of lethargy with me, where I'd just rather not do something, lovely as it might sound. This is a very useful thread for me as I can see it's not very unusual at all and something people live with quite happily.

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