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?

I lost a good bit of weight when I initially started taking meds but it regulated itself in time. For me the most noticeable thing was an improvement in my mood and general wellness. I hadn't noticed how low and crappy I was really feeling before I was diagnosed and it was only after I started to realize all the awful symptoms were all connected. Good luck with it all.

When I started on thyroxine the first thing that improved was no longer being constantly cold. I turned the thermostat down by about 4 degrees and stopped wearing thermals, a jumper and a fleece indoors.

My mood and constant tiredenss improved pretty quickly, but I didn't lose weight. However, I find a lose weight a lot more easily when I cut down on food and increase exercise.

I had two bouts of flu in 3 weeks earlier this year and lost 15lbs, but pre-thyroxine I could starve for a month and hardly lose a pound.

What TSH range do you have to have to get treated?

Sorry to hijack...I'm interested as mine is higher but technically subclinical. I have various symptoms tho, as I sit here on a hot water bottle...

I have hashimotos and am also coeliac. Weight gain wasn't one of my symptoms initially but I'm lighter now than 15 years ago when I was diagnosed. That's mostly because there's a lot of stuff I can't eat as a coeliac!

@Fiveredbricks. I’m very well aware it’s autoimmune. It’s also very common. Most of the responses on here are from women with the same minor autoimmune response that causes Hashimoto’s. The standard treatment is to replace the missing thyroxine.
My qualifications are irrelevant. Online I could be anyone. That said, there is no evidence that any diet other than a generally healthy, lower calorie one makes any difference. Hypothyroidism requires lifeline treatment with thyroxine. That is the treatment.
By all means pay out a small fortune for anti inflammatory diets but any effect is not proven and likely to be more placebo or just related to weight loss.

What do you know - I was on the low/borderline side of normal when my GP decided to treat on clinical symptoms, weight gain, always cold, hoarse voice, hair loss/greying hair, fertility issues, bone weary tiredness, constipation- I could go on. I must admit my symptoms went on for several years with the borderline TSH levels before he made that call. Went from 25mcg to 50mcg quite quickly, improvement was noticeable at 50mcg.

I lost weight on levothyroxine when my TSH was suppressed to less than 1.
GP decided that the levothyroxine dose too high (even though I felt better and warm, eyes were open, no longer falling asleep during the day, no pain etc etc).
I put on 3stone in 6months and my basal body temp dropped to less than 35degC!! I felt so ill I could barely move and was freezing in the middle of summer...dressed like I was going Skiing!! I could not stay awake!!

GP refused to up the dosage so I did a LOT of online research and began self medicating with NDT(Natural Desiccated Thyroid).

I feel absolutely tonnes better and can stay awake all day!! My basal body temp is back up to between 36.5 - 36.8!.... AND the weight has started to slowly come off.

My friends have noticed the difference..."Bloody hell you're still awake after 10minute chat"!!

Sometimes we have to take control of our own health because GPs are not really that bothered if we can't function on a daily basis, or get to work etc etc.

"weight loss was modest, with a mean weight loss of 8.4 + 9.7 lbs"

This is probably little comfort to those who have put on a lot of weight before diagnosis. I put on three stone in two years and in terms of thyroid-induced weight gain, that seems to have been quite low, although still devastating for me.

@CherryPavlova I read that actually most of us in Europe actually have Ord’s not Hashimoto’s, but it’s not so well known so it’s usually referred to as Hashis. I certainly didn’t swing between over and under active, just went down, down, down for about a year. If you don’t have a goitre it’s more likely Ord’s.

Just realised although I might regret saying this I also haven't had a bout of cystitis since I was prescribed thyroxine either. Although my periods haven't got much better.

NHS will only prescribe T4 (levothyroxine).
Like a pp has said a lot of GPS don't prescribe enough. The internet is full of advice about self medicating on T4 or T3 (which easy to buy online) but obviously only a doctor can give you actual medical advice. I've been on thyroid meds 20 yrs, weight goes up/down with food same as everyone's.

I’m a GP (of 25 years) and pretty much every hyporthyroid patient I’ve given thyroxine to has lost weight.

I've been on it for ten years (150mg) and weigh more than ever! But that's my diet - I overeat. My problem is Willpower / greed, not a physical one. It must be very frustrating if you are exercising and eating healthily but not losing weight.

captainjaneway nice bit of needless GP bashing. Google overactive thyroid to see the risks of an excessive dose of thyroxine. If a GP prescribed an excessive amount, based on the blood test results, and a patient suffered as a result, they could rightly sue the GP.

It’s like asking a taxi driver to drive at 100mph because you’re running late.

@Mintychoc1 I calorie count to 1210 per day and am exercising (albeit lightly ATM) and am still not losing on 100mcg. Do you think it's possible I am not on enough then?

I put on 3st post partum in 6wks.
Done all sorts of diets
Eat well, run 4 times per week
Lost about 7lb in 5yrs
Virtually impossible

Also a gluten free pescatarian

Contrary to what is often touted I find that I put on weight whilst on Levothyroxine and it IS an acknowledged phenomenon. When taking levo I could excercise all day, the weight clings. Its hard to lose it. Also my shape changes, I start storing fat in my back, waist and upper shoulders and start to look top heavy, and 'square' on top its bizarre.

I'm not bashing Levo, plenty of people do well on it. But I wish it would be more widely acknowledged by the mainstream medical community that it is not an exact replacement of human produced T4. You also have to convert this T4 to T3 and Hashimotos often results in difficulties converting and utilising T4. I find fatigue, as bad as it is for me now, is twice as bad when taking levo and I also get severe dizzy spells.

I actually seem to struggle more with my weight while on it than I did before I was diagnosed/medicated. I’m not sure if that’s a common thing though or just me. It lowers my ths right down, but I don’t feel much benefit from it really. I hear plenty of people who find it really helps with symptoms and weight though.

captainjaneway nice bit of needless GP bashing. Google overactive thyroid to see the risks of an excessive dose of thyroxine

@Mintychoc1 while you’re googling, try searching for how many people (mainly women of course) still feel like a pile of shit on Levothyroxine and can’t get their GP to take them seriously.

It’s like asking a taxi driver to drive at 100mph because you’re running late

It’s more like asking your taxi driver to drive at 70 on the motorway because him driving at 50 to be super-safe is actually causing problems.