3 months since diagnosis, no weight loss. Reass... - Thyroid UK

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3 months since diagnosis, no weight loss. Reassure me!

Marialoring profile image
22 Replies

Hi, I started on 50mgs Levothyroxine in March, on 100mgs now (last TSH 3.6, March level between 5 and 8 prior to treatment) and am seeing lots of positive benefits, feeling much better. But....no weight loss to speak of! I'm following a low carb high fat diet which seems to be helping. I've lost 3 lbs in the past three weeks, most of which came off in the first week.

In my last visit to GP, whom I hadn't seen before, we had a good rapport ( raised dose of Levothyroxine, said I could be the judge of how I was feeling) but when I spoke about weight concerns he said I'd have to starve myself to lose weight, that it would be really hard but I might be able to lose a bit if I tried basically giving up eating altogether and exercised ( he recommended running which I've never done, bad knees) so naturally I've been feeling dejected since this...and a bit furious.

I rapidly gained a stone over Christmas last year, this is the weight I'm trying to et rid of. Please can someon reassure me that weight loss is possible when thyroid medication is adequate?

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Marialoring profile image
Marialoring
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Clutter profile image
Clutter

Welcome to the forum, Marialoring.

Weight loss is possible once you are optimally medicated which is when TSH is 1.0 or lower with FT4 in the upper range. You probably will have to restrict calories and exercise but you should not starve yourself as your body will go into famine mode and hang on to fat. There are many forms of exercise other than running. Swimming is good exercise for people with bad knees.

Jo1027 profile image
Jo1027

Hi

I lost a stone within 3 months of the right dose But it does level out. You do not loseweight constantly. I haven't lost any more and that was years ago.

I struggle terribly to lose my weight.

Pastille profile image
Pastille

I have to be honest with you I personally haven't heard of many people losing weight on T4 only. T4/T3 yes, T3 yes, but not T4. I could be wrong though and don't mean to dishearten you, it's just that that is my personal understanding of it so far :( I may be being a bit rash saying this to you at such an early stage, I would always say give it time as I'm sure that some must have success with it, I just don't hear of them very often. Sorry! There is light at the end of the tunnel though as thankfully if you don't there are other options you can try with good guidance on this site. Good luck x

Marialoring profile image
Marialoring

Thanks all...I'm just annoyed with myself, I ever realised how hard (impossible) it would be to lose this weight. I'm blaming myself, but the GP saying it would be really hard to lose any made me feel so angry I wanted to dive headfirst into a chocolate cake (which I haven't done). I was hoping for a loss but none at all, as yet. I do exercise, spinning classes and yoga, but I guess it isn't enough. Sigh!

greygoose profile image
greygoose in reply to Marialoring

Yes, and that's probably the trouble. You should not be doing spinning classes etc until you are optimal! You are using up your T3 at a massive rate, and it's low T3 that makes you put on weight. You are really shooting yourself in the foot with that.

Never, ever ask a doctor about losing weight! They just have no idea and are apt to say stupid things like 'starve yourself' - which is also counter-productive. The last thing you want to do is starve yourself because that would have a négative impact on your conversion. In fact, you probably need to eat more, not less. So many hypos find they start to lose weight when they eat more.

Your hypo weight-gain has nothing to do with calories, so how is eating less calories, and using them up exercising, going to help you lose it? There's just no logic in that. Your TSH is still too high, and that tells me that your FT3 is still too low. 100 mcg is not an enormous dose - it's still almost a starter dose. No way you can hope to lose weight on that. It still needs to be increased.

Have they tested your FT4 and FT3? Those need to be done to see if you are converting your T4 into T3 correctly. If you're not, then something needs to be done about it. T3 is the active hormone, T4 is the storage hormone and doesn't do much. So, even if you have to get them tested privately, get them tested. It is essential to your recovery.

And, talking of tests, have you had your vit D, vit B12, folate and ferritin tested? All of those need to be optimal for your body to be able to absorb and convert the hormone you're giving it. And you will find it very hard to lose weight if you have nutritional deficiencies. So, ask your doctor if he will do them, and if not, get them done privately. And, whatever you do, do not mention weight-loss to the doctor! lol

When you've got all those results, post them on here, and members will be able to advise you on your next step. Doctors won't help you here, they know as little about hormones as they do about nutrition. But, rest assured, there is hope at the end of the rainbow! :)

fortunata profile image
fortunata in reply to greygoose

I agree with Greyhoose. It's taken me five years of being optimally treated and I've still got some to go. If I exercise too much, I actually put weight on as it uses up all my T3.

At the moment, just be thankful for every day that you feel better.

Five years ago, I taped a picture of my pre-Hashi's self to the computer and told my husband I wouldn't rest until I was that person again. He said I should just accept what was maybe the new me. I refused. Now, five years on, I am almost back to the person I was in the photograph. Don't give up. Just be quietly thankful for your gradually returning health and take it one day at a time. X

Marialoring profile image
Marialoring in reply to fortunata

Fortunate, thanks, that is a revelation to me-- I also gain weight if I exercise more! I was mystified. So glad to hear that you're doing well.

Marialoring profile image
Marialoring in reply to greygoose

Greygoose thank you so much for this, I feel reassured! I knew the GP was joking a bit about starving myself, I grinned and went along with it and I certainly wasn't asking about diet (I didn't dare mention low carb!) but I'd love for someone to tell me that the weight was going to magically fall off next week :-) I know I'm on the right track now with medication, just went onto 100 2 weeks ago and I will retest in 4 weeks. I was pleased that GP said he would go on symptoms rather than TSH numbers regarding any future increase, I've just recently moved and changed GPs, previous wouldn't prescribe Levothyroxine and told me it was down to stress (also recommended weight watchers which was ok but lost 0 weight! Which is soul destroying, you start blaming yourself!) .

I'm going to drop the spin class in favour of regular swimming-- I think, having done a tough class, I feel inclined to use that as an excuse to overeat or not do anything for the rest of the week. I think a daily routine with exercise built in will serve me better!

I've got T3 and T4 results, I had them done privately, off out today but will review those tonight, also to see if D, B levels were optimal or just normal.

greygoose profile image
greygoose in reply to Marialoring

No, that will not necessarily serve you better. Gentle swimming, yes, but it depends what you mean by 'exercise'. Every movement you make is 'exercise' - even breathing - and it all uses up your T3.

Obviously you can't just sit still for the rest of your life, but you have to chose your movements carefully. Nothing that isn't strictly necessary. Doing the hoovering, ok. But calisthenics are neither necessary nor beneficial for you at the moment.

You could try yoga, but a step class would not be good. In your every day life, you probably get as much exercise as you need at the moment - travelling to work, shopping, housework, gardening perhaps? It's all exercise. It all uses up your T3, and is not going to make you lose weight, anyway. Your body is suffering because you are low on thyroid hormones. It doesn't want to be stressed in other ways, too. It needs to be treated gently, relaxed and nourished well, given time to recover. Be kind to yourself. :)

K1k1_belle profile image
K1k1_belle

Hi Marialoring 👋🏻 Unfortunately I think Pastille is right. I was on T4 only for almost four years and my weight steadily increased, I would only have to look at food and I would put on a few lbs. I've only been on NDT almost a week and actually noticed a change today. Your doctor seems quite open, tell him/he you're not feeling great on T4 and ask for NDT or an added T3 medication 👍🏼

Marialoring profile image
Marialoring in reply to K1k1_belle

I'm like that at the moment, just a tiny bite results in a gain and once it's on I can't reverse the process! So, should I try additional T3 or NDT first...happy to fund it myself...other things such as dry skin and muscle aches are surprisingly better, in fact it's only the weight that is a problem.

Thanks for the advice, glad it's improving for you!

K1k1_belle profile image
K1k1_belle in reply to Marialoring

I'm always on the go, I cycle everywhere 2/3 times a day (I'm currently in Holland), I eat soooo clean and it's very disheartening. I've definitely noticed my jeans feel looser this past week, note I'm currently not eating gluten/dairy/sugar so that could be helping!

I would maybe ask your Doctor first about either adding T3 or getting a prescription for NDT. Failing that there are people here with links to buying T3 only or NDT.

I'm currently working with a Functional Doctor who prescribed me my NDT. I have an interesting article on my page about Functional Doctors if you get the chance to look into that - it's helped me so much 👍🏼

mistydog profile image
mistydog in reply to K1k1_belle

I think it's too early to start trying other medications. Try to get T4 right and see if it DOES work for you, but be realistic, if after a year or two you aren't feeling any better and/or losing any weight, then look at the other things.

TupennyRush profile image
TupennyRush

Hi there

I lost about 1/2 a stone on levo in a year (I switched to ndt because it's better for my circumstances -di02 gene snp). The most effective thing I found was eating healthily but lifting weights to build muscle mass. The weights thing does help plus tones so you look smaller even if you stay the same weight

I have lost further weight since then. I haven't dieted but I think I eat around 1800 to 2000 calories a day. I have found that the loss will come and go, ie I stay stable or gain a few lbs then have a few weeks of losing weight.

I've tried most things and keep adjusting diet and exercise to try and lose a bit more (I put on around 51/2 stones while not being diagnosed). Recent b9 and b12 tests showed that I was on lower end of range so I've started supplementing. This led to a very quick weight loss (4 lbs).

I've spent a lot of time working on the realisation that I'm not going together back to the weight that I was before I became ill. I just try to enjoy where I am, try different ways of making myself healthier and think you're only here once may as well enjoy it!

Treepie profile image
Treepie

I put on a stone before being diagnosed,on T4 that has gone .But I cannot get another Half stone off as i would like ,despite cutting out cakes,biscuits,sugary yoghurts etc.

Kitten44 profile image
Kitten44

How did you manage to get treatment on a TSH of less than 10? My GP completely fobbed me off cause I don't reach that figure -despite all the symptoms-. I've given up on the NHS, so hit and miss and obviously full of inconsistencies!

Anyway, if anyone has hints and tips on losing weight without medication, I'm all ears! I've put on over 2 stone in the last 18 months or so...

Marialoring profile image
Marialoring in reply to Kitten44

Definitely read up about TSH levels, if I'm not mistaken 10 is very high! Unless it's a different test or they've move a decimal point over, of course. The reference range at our GPs is up to 4.0, I think. I initially tested at 4.8 but didn't start medication for a year as they claimed it was borderline... during which time my weight went up by over a stone.

Kitten44 profile image
Kitten44 in reply to Marialoring

Where abouts are you? I'm in Sheffield and my GP adheres to NICE guidelines which says anything under 10 is merely "subclinical" and thus not worthy of his time, let alone any treatment...

Marialoring profile image
Marialoring in reply to Kitten44

I was in London, now Berkshire...I also paid for private tests through Blue Horizon and results over 4.0 come back in 'red' as over range! My highest tested level was 8.4 and GP instantly prescribed 50mg Levothyroxine as a starting dose. Can you change GP? Post your results in the main section and I'm sure you'll get some good advice!

Marialoring profile image
Marialoring

Thanks all! I really want the diet/exercise/Levothyroxine combination to work, don't mind if it takes time but it's so frustrating. I'm going to review the diet (and cut out the wine...I probably haven't been as strict as I claim to be!), my T3 level has consistently been in the middle of the range so not sure if I should start looking into supplementing this.

So interesting to read all this, particularly about exercise depleting T3. Thanks so much to all those who have done so much research. I went to my GP a few weeks back to complain yet again about my thyroid and also as he'd recently requested a blood test (realised they hadn't done one for a year, though I've had private tests done). TSH was raised at 4.5 and receptionist says doctor wants to see you (she didn't tell me results at that time but I guessed).

What I find daft is that if I were the sort of person who didn't follow up on my test results, they would just sit there on my file, no one chases up to get you to go in. Anyway he told me about raised TSH. I mentioned my weight (again!) as I do. He did actually ask me roughly how many calories I eat and did I want to see the dietician. I said no to the dietician because I've found in the past usually I seem to know more than her. I see a dietician once a year usually as I have Coeliac Disease (diagnosed over 40 years) and they're not even clued up much on CD let alone thyroid stuff. Anyway he asked me if I'd try an increase in Levo. I've been on 75mcg for quite a long time. He said if I tried it for 3 months and kept a record of my weight & food intake, if there was no change at 3 months he would refer me to an Endo. Never been referred in 9 years of diagnosis. I've asked to be referred but doctor says he can't refer me with 'normal' blood test results. Anyway the other thing I told him was that I'd restarted swimming sessions and had been around 3 to 4 times a week for the past 3 weeks swimming between 18 and 30 lengths on most trips. He seemed very pleased and smiled and then I told him I'd put on a further 2.5 pounds in weight with no change in food intake. Now I can see from what you have explained here that this isn't the way to go if thyroid isn't optimally treated.

So I started the increase in Levo to 100mcg around 4 weeks ago and in the last week I had some rather weird symptoms which I didn't like at all. I began to think I'd got anxiety symptoms, possibly because my husband was away for the week and I don't sleep so well when he's not around (sad I know lol) but also had a feeling like breathlessness and tightness across my chest. Saw one of the GPs earlier in the week to check, he sounded my chest, took my pulse and said everything was fine.

Symptoms continued, so Friday I managed to get an appt to see a different GP I'd never seen before, thought I would just ask for something to help the way I felt. He focussed entirely on the notes from my other appointment, put the clip on my finger and said my oxygen sat level was lower than it should be. He looked concerned and said he'd like me to go for chest ex ray, blood test and ecg to rule out any chest or lung problems. At this point I started to feel rather worried, but thought perhaps he was covering himself. But heard him talking about embolisms on the phone to the hospital! I did ask him is is possible the symptoms were a result of the increased Levo and he said no, thats not likely.

Anyway (sorry its longer than I meant it to be) I hopped back to work to finish something off and told my boss about the appointment, he said just go to the hospital. So went to the clinic. 3 to 4 hour waiting time. Eventually got blood test done, ecg done, BP checked, oxygen sat level checked. Saw a youngish doctor, but very thorough with his notes and questions. He concluded that the symptoms I've had are most definitely down to the increase in Levo! Said he would write to my GP as they do and would include this in his letter. All blood results were fine, no evidence of possible clots, he examined my legs too, sounded my chest. Deemed a chest x ray unnecessary. So I have dropped back my Levo dose to 75mcg and hope the extra clears my system fairly soon. But it still leaves me with the dilemma of what to do next. Considering T3 but would like GP support with that, but can't see me getting it. Have been carrying over 3 stone in weight for some time with no real change in food intake. I don't eat pie and chips and pizzas every day either.

faith63 profile image
faith63

your medication is not adequate..truly i have never seen anyone lose weight, which is most likely myxedema and fluid, without t3 added or on t3 only..meds. Levo can cause weight gain. Before testing became popular, you would have been medicated until you lost weight. Now they go by labs only and blame us for the weight or say we have developed fibromyalgia or another disease.

If you have hashimotos, you need to be on a diet,which will help you put it into remission.. An autoimmune paleo protocol, or 30 day reset.

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