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To ask your experience of Levothyroxine?

(72 Posts)
Fiveredbricks Wed 10-Apr-19 18:31:35

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?

Fairylea Wed 10-Apr-19 18:35:14

I have been on it for 15 years and my weight has gone up and down in that time but I don’t think it has anything to do with Levothyroxine. In actual fact you are more likely to weigh more if your hypothyroidism is untreated.

Now I have Addison’s as well and have to take life long daily steroids as well... and asthma and anaemia and that’s a whole different ball game! Since all those things were diagnosed I’ve put on 3 stone and have to go low carb and exercise like mad to have any chance of losing half an ounce.

When I was just taking Levothyroxine I felt good and could lose or gain weight as I wanted to / felt bothered enough by it.

SeaToSki Wed 10-Apr-19 18:36:39

Yes. Its great stuff, it really helps you regulate your appetite, energy levels, sleep, mental alertness etc. it may take a few tries to get your levels correct, but definitely worth it. Also make sure you take it forst thing in the morning and dont eat or drink anything except for water for a half hour after.

BasilBrushes Wed 10-Apr-19 18:37:07

I lost my baby weight when I started it.

SparklyRocco Wed 10-Apr-19 18:38:19

I’ve no insight but I’m watching with interest as I’ve also started Levothyroxine in the last couple of days and I share your concerns!

LikeARedBalloon Wed 10-Apr-19 18:38:44

Hashimotos?? My weight goes up and down as it feels like. What I eat makes no real difference 😣 When I have a flare up I get very puffy and gain weight easily. It's a real struggle to loose it again when my levels are correct again.

faeveren Wed 10-Apr-19 18:43:15

I’ve been on it for decades and it’s no magic pill but life’s better with it than without. It can’t ever replace your natural thyroid function and can take a long time to get a dose that you feel good on. I’ve never heard of it causing weight gain though.

LEDadjacent Wed 10-Apr-19 18:43:27

Underactive thyroid makes you put on weight, levothyroxine controls that and other symptoms. I’ve been on it for years, feeling great since we found the right level.

MortyVicar Wed 10-Apr-19 18:43:52

If your thyroid is underactive - for whatever reason - one of the effects is that your metabolism slows and because you're therefore not using as much energy just to survive, your weight goes up as you're not using the same number of calories.

Taking thyroxine is likely to cause at least a slight weight LOSS.

nrpmum Wed 10-Apr-19 18:46:45

Been on thyroxine nearly a year. They are still trying to get my levels right. Not losing yet, but energy wise I have struggled to keep running.

Fiveredbricks Wed 10-Apr-19 18:47:48

@LikeARedBalloon yeah hashimotos. I'm starting a gluten free diet tomorrow too, as that stops a lot of the inflammatory response causing it apparently. I'm noncoeliac gluten intolerant so it all makes sense now. And 200mg of selenium as it's been shown to halve the antibody numbers.

Fiveredbricks Wed 10-Apr-19 18:48:30

Not true @MortyVicar. Clinical data shows the opposite. That's why I'm looking for positive stories.

SomewhereInbetween1 Wed 10-Apr-19 18:49:48

I've been in it for about two years and whilst I'm not convinced I'm on the correct dose yet (still get very tired very easily) my weight has definitely regulated and I no longer have to live on a pitiful amount of calories just so I don't gain weight.

nrpmum Wed 10-Apr-19 18:50:08

Oh. Should say my Dad has been underactive for 30 years. He started dieting last year (had to - cancer op) and he lost 5 stone. So yes, can be done. Whether the thyroxine helps I don't know.

Allfednonedead Wed 10-Apr-19 18:53:57

I was always told weight gain was a symptom of an under-active thyroid, and my own experience has backed that up (long-time Hashimoto’s here).

It does take ages to get the dose right, and it’s worth pushing your doctor to go by how you feel on a dose, rather than just the TSH blood tests. UK doctors like to see it in the middle of the range, and that’s not right for a lot of Hashi’s patients. You may need a higher dose than they want to give you.

Notreallyhappy Wed 10-Apr-19 18:54:37

You need to find the right level for you, without mine I feel blurgh...
Get on it, eat healthy walk a bit etc
It's more difficult to lose weight with thyroid levels all wrong but can be done.

78percentLindt Wed 10-Apr-19 18:58:31

Hi
Can you give a link to the clinical data you have found that suggests L_thyroxine causes weight gain. WOuld be very interested in the source

whitehalleve Wed 10-Apr-19 19:00:53

I have the same. It won't make you gain weight. It's just replacing what should be present in your body anyway.

happyhillock Wed 10-Apr-19 19:01:40

I've been on it for 12 year's my weight goes up and down,

BramblyHedge Wed 10-Apr-19 19:03:04

I have hashimotos and have been on it 7 months and have maintained my existing weight (unfortunately).

BramblyHedge Wed 10-Apr-19 19:04:11

But I should add that I feel great on it. I've stopped crashing so much and am much more alert.

Fiveredbricks Wed 10-Apr-19 19:04:37

@BramblyHedge what is your weight? Were you advised to follow the AIP diet or gluten free? Apparently that's where the weightloss happens with Hashi's.

NaToth Wed 10-Apr-19 19:05:06

I lost a stone and a half in my first three months on Levo, but although it worked very well, my GP insisted on dosing by TSH, which doesn't work for everyone and wouldn't give me enough to make me well, so now I treat myself and am fit and well.

UserMuser098 Wed 10-Apr-19 19:07:28

I've been on it for 7 years. I agree with what pp are saying- levothyroxine does not make you gain weight 😂 an untreated underactive thyroid makes you gain weight, levothyroxine alleviates the symptoms of this, therefore you more often than not lose weight

Fiveredbricks Wed 10-Apr-19 19:08:11

@78percentLindt google brings it up on thyroid.org. more links are on there. Not sure if any further updated studies.

"October 16, 2013 — Decreased thyroid function, or hypothyroidism, is commonly associated with weight gain. But contrary to popular belief, effective treatment with levothyroxine (LT4) to restore normal thyroid hormone levels is not associated with clinically significant weight loss in most people. The study that led to this surprising finding will be presented by researchers from Boston University Medical Center at the 83rd Annual Meeting of the American Thyroid Association, October 16-20, 2013, in San Juan, Puerto Rico.

In “Weight Change after Treatment of Hypothyroidism,” SY Lee, LE Braverman, and EN Pearce describe the retrospective review of patients with newly diagnosed primary hypothyroidism over an 8-year period, not caused by thyroid cancer or other forms of disease or associated with pregnancy or use of prescription weight loss medication.

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"

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