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Original poster

Experience of Levothyroxine?

78 replies

Emmasian94 · 30/10/2022 20:46

What is your experience of Levothyroxine?
I've read so much conflicting information on this medication. It's almost scared me into not wanting to take it.

OP posts:
HungryTruck · 30/10/2022 20:52

Levothyroxine saved my life. Before I started taking it, I had a TSH of >150. I was incredibly depressed and had to set several alarms to have any chance of waking up in the morning because I had such bad fatigue. I now take 125mg every day and my mental health is significantly better than it used to be, and I can wake up on my first alarm.

What information have you read? I must admit I didn't read around much before I started taking it (3 years ago), but mainly because my doctor seemed so panicked that my TSH was so high. The bit I did read suggested it had very minimal side effects, which is also my experience.

ISeeTheLight · 30/10/2022 20:55

It's been amazing for me. My TSH wasn't that bad but I felt awful. Depression, huge brain fog, massive fatigue, weight gain, hair loss etc. I could barely function and I'm surprised they didn't sack me at work as I was totally useless. Levothyroxine was a live saver. I was suicidal and felt like I was losing my mind.

ISeeTheLight · 30/10/2022 20:55

*life saver

MrsTopaz · 30/10/2022 20:58

I’ve been on it for 15 years now.. it’s absolutely fine, my levels get checked every year, it’s no big deal to take the tablet and i feel fine. I don’t really give it any head space really. It’s just like a vitamin, a little thing that my body can’t make on its own so I take a tablet that gives it to me. That’s how I think about it anyway. I check my levels are good (tsh under 2 for me) and then crack on with life.

ThingsIhavelearnt · 30/10/2022 20:59

HungryTruck · 30/10/2022 20:52

Levothyroxine saved my life. Before I started taking it, I had a TSH of >150. I was incredibly depressed and had to set several alarms to have any chance of waking up in the morning because I had such bad fatigue. I now take 125mg every day and my mental health is significantly better than it used to be, and I can wake up on my first alarm.

What information have you read? I must admit I didn't read around much before I started taking it (3 years ago), but mainly because my doctor seemed so panicked that my TSH was so high. The bit I did read suggested it had very minimal side effects, which is also my experience.

This. I get up to take it at 5 am as that works best for me
changed my life

ArcticSkewer · 30/10/2022 21:03

It's fine.
Check your vit d, ferritin, b vitamins as they are probably out of whack as well. Until those are all back up at good levels you won't feel better.
I wouldn't get too lost down rabbit holes online.

Penhaligon · 30/10/2022 21:03

I've been taking it over 3 years now. It means I can function, be an active mum, hold down a job, not need a nap every day!
No side effects for me. I'd feel awful it I didn't take it!

Flowersintheattic57 · 30/10/2022 21:04

I’ve been taking it for 35 years so I’d say it was pretty safe. 4 other women in my family also taking it and all Feel better for it.

Newlydecorated · 30/10/2022 21:04

Transformed my life. And I only take a small dose. It took a few weeks for my symptoms to settle, and I was surprised that various minor symptoms that I had barely noticed also disappeared alongside the tiredness, brain fog and weight gain that had sent me to the doctor.

Bookishish · 30/10/2022 21:06

I take 200 mcg. No symptoms from taking it but tbh not many when I don’t take it- my thyroid problem only came to light in a routine pregnancy blood test.

Lou670 · 30/10/2022 21:07

I have been on it for 21 years, diagnosed hypothyroid (underactive) following my second pregnancy. I haven't read of anything negative to taking it. I get my levels regularly checked and they sometimes tweak the dose. I am on 125mg daily at the moment.

vivaespanaole · 30/10/2022 21:10

Couldn't operate without it. Take 200mg daily. Was really poorly at the point of diagnosis.

I didn't read up on negatives as i generally had no choice.

There are pros and cons to everything and many doom stories out there. If you feel in need take it-you can always stop?

serenghetti2011 · 30/10/2022 21:16

I’ve been on it my whole life, well from about 6 weeks old. I have no thyroid- which was discovered when I was was 33. It kept me alive, it doesn’t give me a particularly great quality of life but it’s better than nothing.

I’ve never felt not tired, always cold. No energy etc oversight bloods are in range and fine. dr isn’t interested in my symptoms or how I feel though.

Kindofcrunchy · 30/10/2022 21:19

It's literally just a replacement hormone.

AssignedSlytherinAtBirth · 30/10/2022 21:20

I was found to be borderline hypo when I was having tests for long Covid. I am sure Covid affected my thyroid as it affected my lungs, heart and brain. Levo made me feel awful - had depression for the first time in my life, felt as if I was going mad, couldn't cope with driving, etc. Came off it and now take traditional herbal remedies instead, made by companies called Hey Nutrition and Wild Nutrition. I also do a Yoga for Thyroid vid on YouTube, which made a real difference to my energy levels. My doctor has told me to keep going as I am. I wish levo had worked for me - it would be cheaper and probably more effective, in that I do get tired. It seems to work for lots of people once they get their levels right. But it didn't for me, and I wasn't prepared to live like that.

Tailfeather · 30/10/2022 21:22

I've been on it for 20 years.... I feel dreadful if I run out. What are the downsides?

CrunchyCarrot · 30/10/2022 21:23

Did nothing for me, it turns out I don't convert T4 into T3 very well, so no matter how much Levo I take, it will just pile up in my bloodstream and I will still feel unwell. I take T3 only now. A lot better. However some people do well on Levo.

If your thyroid is underactive, you need replacement hormone. The starting point for that is Levothyroxine (T4). Then see how it goes.

Afterfire · 30/10/2022 21:25

What’s scaring you about it? It’s a replacement for something your body needs and is lacking. I’ve taken it for 20 years. I’d be dead without it. It’s one of 25 medications I take everyday and probably one of the safest.

WoodlandWalks123 · 30/10/2022 21:31

Been taking it around 6 years since becoming underactive after my first pregnancy - no side effects or anything negative, levels now fine, take 125mcg / day.

pompomsontheedge · 30/10/2022 21:32

Love it. Changed my life. Also allowed me to stay pregnant. I don't read anything about it either. Dr tells me to take it and I take it.

TiredButAlive · 30/10/2022 21:36

It's helped me a lot. I didn't have a really high TSH (only 6) but I felt lousy. Supplementing with Levothyroxine has made a huge difference. Yes there are days when I feel like it's not working but the number of good days far exceeds the bad.

PeloFondo · 30/10/2022 21:37

MrsTopaz · 30/10/2022 20:58

I’ve been on it for 15 years now.. it’s absolutely fine, my levels get checked every year, it’s no big deal to take the tablet and i feel fine. I don’t really give it any head space really. It’s just like a vitamin, a little thing that my body can’t make on its own so I take a tablet that gives it to me. That’s how I think about it anyway. I check my levels are good (tsh under 2 for me) and then crack on with life.

Pretty much how I feel about it
TBH I don't notice a difference being on it but I figure I need it (hashimotos, TSH was about 8 when I started it)

GonnaGetGoingReturns · 03/11/2022 19:11

I’ve been taking this for approx 10 years, it took a year to 18 months to get the correct dose and blood tests every month which were fun not!

I’m now on 150mg and though I do feel better than when I wasn’t on it I don’t feel great due to menopause and brain fog with that. My low/bad temper moods and low energy from before I was diagnosed have got much better which is good.

you’ll need to take iron tablets and levothyroxine also speeded up my metabolism meaning I have to take tablets for that so I don’t wet myself!

ignore the advice re not having fluoride in eg toothpaste. I did that and for the past 5 years my dental health got so bad I had to have complex bridges etc. I’m now on high fluoride toothpaste and don’t feel any different to be honest than when I had no fluoride toothpaste.

GonnaGetGoingReturns · 03/11/2022 19:12

CrunchyCarrot · 30/10/2022 21:23

Did nothing for me, it turns out I don't convert T4 into T3 very well, so no matter how much Levo I take, it will just pile up in my bloodstream and I will still feel unwell. I take T3 only now. A lot better. However some people do well on Levo.

If your thyroid is underactive, you need replacement hormone. The starting point for that is Levothyroxine (T4). Then see how it goes.

That’s interesting. What do you exactly take?

Original poster
Emmasian94 · 03/11/2022 19:15

GonnaGetGoingReturns · 03/11/2022 19:11

I’ve been taking this for approx 10 years, it took a year to 18 months to get the correct dose and blood tests every month which were fun not!

I’m now on 150mg and though I do feel better than when I wasn’t on it I don’t feel great due to menopause and brain fog with that. My low/bad temper moods and low energy from before I was diagnosed have got much better which is good.

you’ll need to take iron tablets and levothyroxine also speeded up my metabolism meaning I have to take tablets for that so I don’t wet myself!

ignore the advice re not having fluoride in eg toothpaste. I did that and for the past 5 years my dental health got so bad I had to have complex bridges etc. I’m now on high fluoride toothpaste and don’t feel any different to be honest than when I had no fluoride toothpaste.

Thanks for the reply! Yeah I'm wondering whether my dose is correct at 50mcg.
I've started getting heart palpitations, seems to be around ovulation. This only happened last month and again now. Not for the first few months I started Levothyroxine but that's the only thing that's changed. I hate them so much.
Noted regarding the fluoride toothpaste! Thanks for the advice.
So I need to take iron? Is that what you were told? Xx

OP posts: