Experience of Levothyroxine?

[Emmasian94]

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.

reslly good, without it I would feel awful. I find I feel best when my TSH is around 1. Anything heading towards 3 and I start to feel really rough. My TSH level seems to fluctuate every few months so I get tested regularly and manage my dosage at home by having both 100mcg and 25mcg tablets available.

That's brilliant! I'm just trying to find my feet with it still I think. My worst symptom that's just started is heart palpitations. Seems to coincide with ovulation and this has never happened to me before. Worrying me actually. The doctor ran bloods and all 'normal'.

Why wouldn't you take it? It's a hormone your body is missing!

I'm on 75mcgs, no side effects whatsoever. AFAIK side effects are extremely rare and the benefits far outweigh any risk.

I am taking it. I'm just very anxious to have a health problem (seem to have many after having my little boy) I try to do as much research as I can beforehand and just found some stuff that fed my anxieties really. I haven't had any side affects for the first few months and then last month I had awful heart palpitations for three days, and having them again now (day 5). Seem to be hormonal around ovulation xx

Love it. I didn't realise just how crap I felt until I started taking it. It took about 6 months to get the dosage right for me. I'm on 50mg and just feel so much more energetic, less anxiety, and like a weights been lifted I didn't know was there if that makes sense. I just feel more vibrant. Tsh was 6 before meds and it's now 1

That's brilliant! Glad you're doing so well :)

I've been taking it for years, no problems. Coincidently my DH has had to take a very high dose for over 20 years after removal of thyroid. Think he'd be dead without it

I couldn't function without it and neither could my teenage daughter who was born with hypothyroidism. Just get your levels right and you'll be right.

I’m on thyroxine as no thyroid and I keep asking for T3 thyronine. They ain’t prescribe it as it’s expensive.

As a pp said doc not interested in symptoms just the numbers being in range and prescribing “the lowest dose they can get away with” direct quote.

My consultant said palpitations means your dose is too high.
it feels horrible

I had t3 thyronine in tablet form. Felt so much better on that compared to thyroxine.

Been on it for 20 years after radioactive iodine treatment. I’ve never questioned it or had any negative effects. I was on carbimozole for a few years before the iodine treatment.

Does your doctor (GP) prescribe that? I am tempted to try to get that. Thanks!

Levothyroxine worked initially for me but doesn't seem to make that much difference now...

My stepdad had his thyroid removed but he doesn't take anything for it apparently...

Go to your GP about heart palpitations - they may want to lower your dose, or do a bloodtest. Ask if you have any concerns about iron or other vitamin levels.

It can take many months to get the dose right.

Was it partial removal?

if it was total thyroidectomy then he would need the thyroid hormones replacing otherwise body cannot function and results in death.

I had to stop taking t3 before final treatment and I was without the hormone for 3 weeks. I was tired, brain fog, clumsy. I could feel the deterioration.

I am a different person with it (quality of life) and the thought of ever losing it fills me with dread

This is interesting to read. I take 100mg a day, and have been on it for 4 years. Really haven't noticed much if any difference. I'm still exhausted. I'm still anxious and cranky. My hair is still falling out.

I guess it must've been partial removal, yes.

@Bemyclementine - definitely go back to the doctor. You shouldn't have this happening. Depending on your age etc - the symptoms could be down to other things beside under/over active thyroid though.

Age (if you're older) and hair loss is natural anyway - I've noticed I lose some hair every time I wash my hair, but my hair was damaged during lockdown anyway.

Will GP up your dose?

Thyroid uk has a knowledgable forum. Might be worth posting your figures on there.

Been taking it since I was 7 years old. I’m now 44. Never noticed any side effects.

I’m on 100mcg , have been for many years , I don’t have any side effects but equally don’t feel any different if I take it or not , but I am on a few other meds as well and under active thyroid is the least of my problems

@GonnaGetGoingReturns and @Rummikub thank you. Dose was increased to 100 about a year ago. I am also anaemic. I'm 45, and luckily have lots of hair so though it falls out its thinner thsn it was but still OK. The tiredness though. 😩