To ask your experience of Levothyroxine?

[Fiveredbricks]

Have today been diagnosed with autoimmune hypothyroid disease (instead of just plan old boring hypothyroid, my body is actually trying to destroy it 24/7 now).

Can anyone tell me their experiences with Levothyroxine? I'm scared it's going to make me gain more weight (from reading online).

I'm currently up to 17st something (I was 13st the day after giving birth 2 years ago 😭) no matter what I eat or how much exercise I do, and am petrified it's going to make me even fatter.

I swim 2k once a week, run 5k 3 nights a week, eat the diet of someone who's 9st (dietician provided meal plan) and I can't see how I can do anything else without starving myself.

Has anyone actually lost weight on it?

Namechange - I was the same! Eventually I paid to see a specialist who wrote to my GP to say that my meds should be increased until TSH is less than 1, closer to 0.1 is ideal. At 1.4 I was feeling horrendous, under 1 I now feel much better!

PM me if you want the name of the Endo

my DS is 12 and has been on thyroxine since he was 3. He has never had any issues with weight gain. He is on 100mcg

I have been gluten free since the summer which has also made a big difference. I have even stopped getting a rash that I used to always get after drinking beer. I am 70kg and 5ft3in. I walk everywhere. I run a bit (once a week). I don't eat lots. I have a desk job.

I was also calorie counting and starving. I stopped doing that and it didn't affect my weight so seemed a bit pointless. I now concentrate on what I eat rather than how much.

UserMuser My NHS endocrinologist wrote to my GP and told him the same, keep me as low as possible and take into account my symptoms not just the numbers.

I've been on it for about 12 months, and I've lost 3 stone with slimming world because my appetite and metabolism is back to normal.
I also have more energy so can do more exercise.
And as a bonus I also have regular periods for the first time ever.
It's good stuff op, more likely to help you lose weight than to gain it.

Exactly how it should be faeveren - my GP honestly thought i was 'just a bit tired' 😫😫

I’ve been on it 16 years it hasn’t caused weight gain. I’m still more fatigued than the average person but better than I was before, I can get by if I pace myself and my skin isn’t bad like it was (constant eczema breaking down in the corner of my mouth).

I said that being on thyroxine will, if it has any effect on weight, make you lose a little.

You replied Not true @MortyVicar. Clinical data shows the opposite

But the info you've cut and pasted from thyroid.org says that any weight loss is modest, and that About half (52%) of the patients lost weight up to 24 months after initiation of treatment with LT4. Overall, weight loss was modest, with a mean weight loss of 8.4 + 9.7 lbs". That is not saying that it makes you gain weight. Only that the weight loss isn't as great as it was once thought to be.

I am expecting to go on it so thanks for the thread.

@dateloaf fingers crossed it works for us!

personally I did not get on with it , but the alternative NDT is expensive and I have ended up purchasing from abroad and paying for my own blood tests . I would say try and and see how you get on - you might be lucky and get your dosage correct . Weight loss when you have a thyroid problem is hard , and I am afraid you wont get much sympathy even though wright gain is a symptom of the disease . Join the thyroid UK website for good support .

What Morty said (all of it, especially her post at 19:38)

I've been on it for 13 years. I was very overweight. But I've stopped eating crap and started doing exercise, and what do you know? I've lost almost 7 stone. 🤷 If you do gain, it's more likely to be a self fulfilling prophecy.

It's not a magic pill that will make you lost weight, but it makes weight loss less difficult than it would otherwise be 😊

It's wonderful. It helps me lose weight. When I first had it I said to my doctor 'so this is what normal people feel like ALL THE TIME!?!'

Sorry to disappoint but most hypothyroidism is plain, boring Hashimoto’s. It accounts for 90% of hypothyroidism and something like 10% of women over 30 have a degree of thyroiditis. Hashimoto’s is Rey common.
Thyroxine is the treatment as the symptoms are caused by a lowering of effective thyroxine in the body.
Symptoms of untreated hypothyroidism include deeper voice, coldness, pasty skin, slow pulse rate, constipation, tiredness and weight gain. It’s obvious really, a lowered metabolic rate is going to slow everything down and cause weight gain.
Thyroxine can’t possibly cause weight gain.
I’m not convinced diet is going to help either.

I’ve been on it for a few years now. I don’t think it has really done anything for me in terms of weight loss, but it has improved my tiredness vastly and made life so much more enjoyable now I have a bit more energy. I still struggle to lose weight and am trying out low carb as I have read that’s best for underactive thyroid. I exercise 3 hours a week and definitely think that helps boost my metabolism that bit extra!

You still have to eat sensibly and exercise to stay slim but for me removed the uphill struggle where nothing worked and I was tired and starving all the time. (I don't have hasimotos or what you have though).

Hasn't caused me to gain weight , but has improved my skin, hair, Concentration and energy levels as well as my mood

Most likely is people putting on weight due to their thyroid issues not being optimally treated with Levothyroxine. I certainly never lost weight on it without actively dieting, so it didn’t regulate my metabolism to a level that made me more likely to lose weight than before I was diagnosed.

I now take natural desiccated thyroid (from pigs) which is more commonly offered as an alternative in the USA than in UK. I still don’t lose weight unless I literally stop eating (when I’m heartbroken and can’t eat anything it falls off me!) but I do feel better all over, more energy etc less aches, my eyebrows have grown back (so have leg hairs, dammit!)

Just make sure you know your levels, where they sit in the reference ranges and where they need to be to be optimal. Push for TSH well under 2 - preferably under 0.5 and others in the top third/quarter of the range.

Op
The references you quote don't say L-thyroxine causes weight gain.

The key is getting the dose correct otherwise weight loss is more difficult. As the Boston study suggested there is a belief that taking thyroxine will cause weight loss- hence it can sometimes be found as an undeclared ingredient in some so called "slimming pills".

The summary of patient characteristics for L-thyroxine lists weight loss as an undesirable side effect.

@CherryPavlova are you a qualified endocrinologist? Or an armchair doctor?

It is autoimmune. It is also connected mostly to gluten and similarl protein allergens. I'll just tell my qualified dietician (not nutritionist before you say it 🙄) that all her data is incorrect shall I? The right diet helps with pretty much all autoimmune conditions. What a silly thing to say.

I've been taking it since I was about 18, I'm 26 now. I personally don't notice much of a difference and I'm roughly the same weight even though I'm on 150mg.

However when I mentioned this to my fiance and my mum they shared a look, so apparently they notice when I forget to take my medicine I'm a bit dopey and scatter brained.

Good @Aria999 that's what I'm hoping for, instead of the constant brickwall/plateau. I just want all the hard work I do to = progress. I feel like I'm dying with all of the effort for very little reward right now. Hopefully it will remove the fence, so to speak.