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Thyroid UK
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Feeling Great but Gaining Weight

Hello all.

I have been taking Levothyroxine 150mcg (T4) lately, which I increased from 100mcg because I was feeling sluggish at the beginning of winter on 100mcg, exhibiting hypo symptoms. The increase to 150mg helped a lot and I was back to my normal cheerful self. However while I was starting to lose weight (very little but better than nothing) on 100mg, the weight stopped coming off and started to increase on 150mg of Levothyroxine.

Does anyone have any idea what on earth is going on? I thought I would remain the same or lose weight, not gain it.

I'm beginning to think that I should just add T3 on.

Thoughts?

Added blood tests taken 30 April 2019

88 Replies
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At higher doses you may eat more through increased appetite and move less because of reduced energy / heart has more to do at higher doses as your metabolism is faster, so may be less energy for exercise. That’s why an optimum dose is best.

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As far as appetite is concerned, I have next to zero. I have to force myself to eat lately. I was eating more when I was taking 100mcg.

Anyway, winter is over. I will go back to 100mcg or try NDT.

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Could be you increased by too much. The normal amount of an increase is 25 mcg every six weeks - after testing. Being over-medicated can make you put on weight just as much as being under-medicated.

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Aaah. I did not know that being over medicated can make you gain weight. I always heard of it doing the opposite. In that case, I am definitely over medicated then and yes, I increased the dose by 50mcg in winter.

I should just go back to 100mcg now I think.

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Just maybe, you need 125? Or 137? Or 112?

Have a glance at the document linked below. You don't have to make big changes. Your increase from 100 to 150 was a 50% jump. Your proposed drop from 150 to 100 is a 33% jump.

And if you dropped from 150 to 125, you can always go back up to 137. Or drop further to 112. :-)

It would be great if you could get tested right now. Then test again after you have made your change (whatever you decide to do).

dropbox.com/s/sllu21khbeyth...

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That is a very useful link to those on thyroxine - I remember calculating this on occasion during my years on thyroxine. I wonder if it could be pinned as many would find it useful.

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If only we could pin all we want to pin!

Just five. And click on See all > for a few more.

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You could be onto something here. I only have 100mcg and 50mcg pills. No 25mcg pills. And I get them from another country because my doctor here says I must take 25mcg a day ideally and well, I am not doing that! Lol.

So, I have a doctor in another country send me bulk Levothyroxine.

Even testing now would be tricky because I would have to pay cash because my doctor here only tests for TSH and I am tired of fighting with him to test for other things.

The last test I did was 3 months ago and he wanted me to go down from 100mcg to 50mcg and my levels T3 was low and T4 was mid range.

If only Medichecks operated in Switzerland. I will think about calling the lab though on Monday and ask if I can pop by for tests at my own cost.

I suppose even if not recommended, I will cut the 50mg pill in half.

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Many people on the forum cut pills to get halves or quarters, and I've even heard of into eighths! Manufacturers can't explicitly recommend it because then they'd have to do extensive extra testing to prove every crumb of tablet has an identical amount of hormone to every other crumb.

I would definitely get blood testing if you can. You really won't know where you are, and no one can comment on your dose without that information. Symptoms are the most important thing, but sometimes we can get turned around and confused about whether symptoms suggest over or under medication.

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I could never ever lose weight. Even when I was on 75mcgs of Liothyronine a day.

I’m now on 60mcgs of Lio a day and have tried lots of ketogenic/high protein/low carb diets but never lost more than a few pounds.

On Jan 2nd I started SW with my husband, just to keep him company, as he need to lose two stones. To my utter amazement, I’ve lost 13 pounds and the scales are still heading down.

Trying to lose weight by increasing thyroid meds is, in my mind, a bad idea. I’d focus on getting yourself as healthy and relaxed as possible before even thinking about losing weight. X

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I’m not trying to lose weight by increasing thyroid medication. I increased my medication because my hypo symptoms were starting again.

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No, I understand that. I did exactly the same thing when mine began again and hoped raising my dose to compensate would have a knock-on effect of losing a bit of weight too. But I was stumped when I actually put it on. It was so saddening and frustrating. I hope you manage to sort it.

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I am convinced that just as stated by @helvella I probably missed the optimal dose because I increased by too much. It is a very tricky thing this but I am determined to solve it.

I’m just happy that weight gain is the only symptom that I’m dealing with. All other hypo symptoms have gone away.

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It’s great that you’re feeling well in every other respect. I’ve found that feeling optimally well and cracking the weight gain problem that comes with having a thyroid disorder is like trying to piece a jigsaw puzzle. There have been times in the last ten years where I’ve felt like dancing around the kitchen, in sheer frustration, like Rumpelstiltskin.

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🤣🤣🤣

I laugh because I relate

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😂👍🏻💖

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I found strength/weight training with full body routines (rather than cardio) helped massively. It also actually gives me more energy. You have to be at more or less optimum dose before doing exercise though.

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What's SW?

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Its slimming world

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I'm here in California, don't know what that means,but must be gym?

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No it's a healthy eating /diet group very popular in the UK and for a lot of people has good results

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Actually, it isn't healthy eating at all. It relies entirely on a low/no-fat regime, and that isn't healthy. The body and brain need fat in the diet. And, I also suspect that they use soy in the 'foods' they sell, which isn't healthy, either.

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I must admit I never ate their meals and cooked mine from scratch but it was easy to follow and fitted with the family but yes was lower fat and was healthier than we had been eating !!

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Eating good fats isn't unhealthy, you know.

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Yes everything in moderation😊

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I’ve found it very healthy and my friends say I look glowing. Lots of fresh fruit and veg, meat and fish and moderate amounts of good fats. I’d never buy the Frankenfoods they sell as I always cook from scratch. I think the basics of it are very good if you stick to the fresh, non-processed food aspect of it.

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Yes, but then, you don't need to pay Slimming World to know that. That's basic nutrition.

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Dear Greygoose, we can always count on a wry comment from you. 😂

I didn’t pay. My husband joined and I just went along with him using the syns system. I’ve always eaten good, nutritious food... maybe just a bit too much of it. I think it’s probably rigidly keeping to the 15 syns a day that’s helped me lose weight. And it’s certainly helped him!! 😂

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Sorry. It’s a diet club. My husband belongs to the online SW so we don’t have to go to meetings. We eat basically lots of fruit and veg, lean meat and fish, baked potatoes and basically no processed food. It’s worked really well for us both.

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You also have slimming world in California 😁

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Google it - all the diet information is there and you can even sign up online 👍

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Slimming World?

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Slimming World. 👍🏻

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What is SW please? Xxx

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Slimming World.

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I struggle to lose weight too but pardon by ignorance - what does SW mean?

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Slimming World.

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Thank you for such a speedy reply. I shall look into this. Maybe it will work for me too.

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great you are back, missed your posts.

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Thank you, Bunnyjean. :)

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AGREED !!!!

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DIDO !!! Greygoose it's so true . Hypo/Hyper symptoms over lap one another . So Great To See You Back .

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Thank you. :)

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100 to 150 is a big increase all at once 😱 I was happy enough on 175mcg (although I’ve just been making the best of a bad situation by only being offered T4 but that’s another story) then 6mths later I began having Hyper symptoms and one of those symptoms was weight gain 😬 As my GP only choose to do TSH and I knew no better I was cutting my Levo dose every 2mths based on TSH only. This led me to the worst HYpo phase of my life which was as debilitating as the time just before diagnosis 10yrs ago.

But just from my own experience I have maintained my weight give or take 10lbs with fluctuating hypos and then adjustment of meds except for when I experienced Hyper symptoms. Then my weight rocketed up to 2stone over despite struggling to eat each day.

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Thank you so much. This is very interesting. I seriously had no idea that being over medicated caused weight gain.

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I’m not sure it’s the norm 😬 but I also get insomnia sometimes from being under medicated too 😫

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Oh yeah. That is definitely a sign of being under medicated. Fortunately I’ve been sleeping like a log. Everything has been great, as I said except for the weight gain which struck me as rather odd. Weight gain and lack of appetite.

I have not had the jitters, thank goodness and if anything, I felt a creeping sense of fatigue, which I thought was just my period coming back (breastfeeding therefore no period for 10 months).

I decreased to 125mcg today. I will keep at it for 6 weeks and see how I feel.

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Aha! Breastfeeding! I didnt loose weight till after I’d stopped with all 4 of mine. I know HV like to say it’s a great weight loss idea for women to BF but actually i maintained a good stone over ideal weight until I stopped. Although I did also eat like a horse but never had an over abundance of milk, the kids certainly suckled well and were all heafty babies but I could never ever express, the milk just never flowed. I didn’t even have to wear breast pads. It only flowed when the kids suckled.

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Actually, through my research, the whole breastfeeding to lose weight is a myth. Prolactin causes the body to store energy. What happens with a lot of women is that they get hyper for a short while and then their body regulates. They think it is breastfeeding but it is hyperthyroidism. Lol.

These claims of breastfeeding causing weight loss are unfounded apparently.

An example: Serena Williams had to stop breastfeeding in order to lose weight to train her body again due to this. I suppose, if you already have hypo issues, weight loss during breastfeeding is very unlikely to happen.

As far as my breastfeeding is concerned, she is turning a year in May and we are breastfeeding 4 times a day now. That went down from 12 times a day. And I was an over producer of milk with fast flow and all. I used tons of breast pads. Lol.

I plan to breastfeed longer than 12 months until she either doesn’t want to or until she is around 2 years old. So the struggle of weight gain continues. 😭

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Yes I get that. Mine went to about 14mths of night feeds and then a good transition to bottles or sippy cups. I’m pretty sure my thyroid was having a complete mare with 4 babies in 5yrs with BF and the family inheritance 😬

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I lost nothing while breastfeeding!!!

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I still don’t understand how it can.

Weight loss is a symptom of hyperactivity (been there, done that 😱)

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This same thing has happened to my daughter. Ever time her Dr. increases her Levo she gains more weight. She showed me her labs over a year ago when this started to happen and they all were in range...not at top of range but middle with a TSH of 1.5. She was at her lowest weight when she was on 75mcg. Going up to 112mcg. has caused her to gain over 40lbs. I have tried to get her to have her Dr. switch her to NDT but her Dr. refuses and has put some stupid malarkey in her head about NDT being BAD medicine...drives me crazy! I feel so bad for my daughter 'cause she eats a clean diet...walks and does moderate exercise and can't lose a pound and in fact, still gains. My husband also had bad issues with Levo...gained weight, BP went up to dangerous levels, kidney issues..on and on. Now with a new Dr. he is on NDT and these issues are finally getting corrected. I keep trying to get my daughter to change Drs, but my husbands Dr isn't on her insurance plan...we are in the U S.

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Hi jjf255

I’m sorry to hear about your daughter’s issue. It is so frustrating to be eating correctly and to be relatively active and find oneself gaining weight. I am going to decrease my Levo first and see. If that fails I will also just use NDT because all of this is causing me a lot of stress.

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What is NDT? I’m on 200 mg and am the fattest I’ve ever been. I’m 54. Was walking 5-7 km a day, dieting everything that used to lose it. But now for the last 5 years. It’s stuck.

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NDT stands for Natural Desiccated Thyroid. Examples of this are brands such as Armour and Thyro-gold.

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Good luck Inana...You are right...very frustrating, especially when so many Drs don't have a clue!

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Underactive thyroid symptoms are also very similar to those if your are deficient in vitamin B12 and vitamin D. I would suggest having a blood test to get those checked too, as often if you have an under active thyroid then you are most likely to be deficient in b12. Deficiency in vitamin d is also very common. If you are deficient in either then the overcounter tablets are not enough.

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Hi,

I take Vitamin D and B12 daily. My ferritin is also quite good.

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I have recently started taking vitamin d with k2 in tincture form. Also b12 drops and using a magnesium spray as my dr offered me nothing when I had my test results back and they were low. He told me to just get a multivitamin which of course was not helpful. So I’m self medicating and I can’t tell you how much better I feel. I have energy for the first time in years and I have started exercising and I am also sleeping much better.

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The breastfeeding will play an enormous role - for what it’s worth I did not lose One. Single. Pound while breastfeeding. In that year I dieted, nothing changed. Then I pigged. Nothing changed. Soon as I stopped I very quickly started losing a few pounds. I know you need more calories to breastfeed but doing it second time round meant I was extra tired (with a 1 year old already) and for some reason my appetite was bigger second time round.

Back pain also disappeared after I stopped feeding.

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It’s very reassuring to hear this even though it is not great news. Lol. Rather know what is happening than point fingers at the wrong things. At least now, I have three possibilities that could cause the weight gain: being over medicated or breastfeeding or both. :)

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Being on a higher dose made me gain almost 15 pounds. I was within the normal range but gaining rapidly, losing hair,getting chest pain, experiencing brain fog, and short temper (all symptoms of hyperthyroid). I missed my dose due to not having the prescription on time and almost all those symptoms disappeared. Because I was within the normal range my doctor did not understand why I was experiencing all the above symptoms. I asked her to lower my dose after feeling better going off it for a few days. I would advise you to have your doctor lower your dose despite you being within the normal range. I started with weight gain, and it lead to more complications.

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By how much did you decrease your dose?

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You could be on too high a dose, depending on what you weigh. The "full replacement" dose for levo is on the order of 1.5 - 1.7 mcg/kg body weight. So a 150mcg dose is appropriate for a person weighing about 88 - 100 kg.

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Oh really? That is something new to me and thank you for this info. This is very enlightening indeed.

I am between 88-100kg and I fluctuate currently between 86 and 90 kg. But, I still have my thyroid so it is indeed probably too high.

Before the thyroid issues, I weighed 20kgs less but that was then (daydreams of better days) 😊

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Although the idea of "full-replacement" T4 dose is useful, the bottom line on thyroid treatment is always how you feel. Unfortunately, you don't know what your FT3 is. Perhaps you would be better off on 100mcg levothyroxine, then replace the extra 50mcg of levothyroxine with 12.5mcg of liothyronine?

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My FT3 was on the lower side of the normal range the last time I checked.

I tried 100mcg and 1 grain of Armour and I got too jittery with anxiety like shakes, hot flushes and so on, but that was to be expected because 1 grain is a lot. It started off well but after two weeks I was not feeling so great and I immediately felt better after stopping the additional Armour.

So, for now I will just decrease to 125mcg as I started today. Then after 6 weeks I will see how I feel and take it from there. I am contemplating going the NDT direction. When I get to that point, I will try to make whatever changes I make to be around 125mcg. Who knows? We’ll see by how I feel on 125mcg of Levo. Then I will make the necessary calculations and convert if necessary.

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Keep in mind that the T3:T4 (1:4 pig) ratio in NDT has more T3 than the human body makes. Some NDT users find they do better if they lower NDT, and add in additional levo. I dose myself at a 1:8 ratio but even at that, the average (inexperienced) doctor would probably have a fit if he/she saw my TSH=0.11. BTW, the conventional wisdom on this board is to push FT3 up to at least mid-range, and that is about where mine is.

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I’m just waiting for blood tests to come back so that I may see how to proceed.

I’m taking 125mcg since the day before the blood tests.

Yeah, my TSH is always low and the doctor I see always gets a ‘fit’. 😂

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Hi there the thyroxine puzzle is endless lol. I take 100mcg and half a 25mcg daily. I have been putting on weight recently when I didn't lose any but didn't put any on. The hypothyroid battle began for me in 2009 but had symptoms for years and was diagnosed with Hashimoto's in 2010 when I finally went underactive. Then I had to have half of my thyroid removed and have never felt well since. I also have Sjogrens and fibromyalgia diagnosed later. I have been feeling really unwell since last summer and have asked to go back to endo for a review but I have to have routine tests first. I agree doctors don't have enough training on this subject and rely on blood results and not how you are feeling. I wish there was some way to get my life back as even with all my other problems have not felt this bad.

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I’m so sorry to hear that you are struggling. I felt exactly like this two years ago. I was so depressed about it because I could find no support from doctors.

I then decided to take matters into my own hands. I decided to get Levothyroxine on my own and have not looked back since. Even now, I am still struggling to find the perfect dose because things change but I am so much better than I was. I am so grateful that I trusted myself and took this on. It took lots of reading of course in order to be confident to go at this on my own.

I’m not saying do as I am doing. Just make sure that your vitamins and minerals are optimal. For me, things started to look brighter when my ferritin was on the upper side of the normal range. I take B12, folate (through antenatal vitamins), Vitamin D and Magnesium daily.

It takes a while to fix but it does get better if you try to find the right dose.

Good luck with your journey. Make the appointment with the endo. Do what it takes for your health and well-being. ❤️

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Thank you for your reply Inana. I take daily vitD which the endo said I must take every day for the rest of my life as it was 24 but has come up since. Get so depressed when I can't do what I want to do, even housework lol. I have steroid injections every 3 months which do help for a while and will look into getting some magnesium but unfortunately as I live on my own my ability to get a proper meal is very reduced when I feel so rough. Do have ready meals but not the same as a properly cooked meal. Make things as simple as I can but even that does not help sometimes. But every morning I think I am alive, and not everybody has that luxury.x

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((((Hugs))))

You will get your strength back. Just take each day at a time and use every single story of success as motivation. Easier said than done, I know. I remember feeling as if it will never get better but it did.

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Aww thank you for your support and good wishes and I wish you all the same.

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Just be very careful about upping your Levothyroxine levels unless with medical supervision. Just slightly too much can interfere with your heart health.

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Hi, I totally agree - you can't mess with Levothyroxine. My dear mum took matters into her own hands and took more than her endo recommended. He warned her it could be dangerous. She developed arrhythmia and passed away suddenly with a cardiac arrest caused by arrhythmia. Poor mum was never well on thyroxine and she was trying to do what she thought made her feel better, but it was causing heart problems.

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T3. It made all the difference for me.

I gained on only synthroid-T4. Switched to Naturethroid (NDT), felt great, then tired, cold, depressed, weight gain, hair thinning. Increased NDT, felt better, then the cycle started again. I was so frustrated.

Switched Drs. We dropped NDT, added Compounded T3. Now, I take 45 T3 and 1 Grain NDT (which is a t4/t3 combination, 38 T4/9 T3) in AM, and another 30mcg T3 in early afternoon.

That, plus adding B12, and Ferritin Iron, has made all the difference.

Sleeping better, exercising, and weight dropping with the effort I put in.

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Thank you for sharing this. I will look at your post again in a while to see if your strategy might work for me.

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Hi

Did you have blood test results before you increased your T4 medication? You’ll need to post those results with the ranges so people can work out what’s going on for you. It could be that you are taking too much T4 and something is going on with reverse T3 now.

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I've gained nearly 20 kg in 11 years on Levo. If I didn't swim at least once per week, it probably would have been a lot more. Many people gain weight on it - you can easily find that by looking on the internet. Since I started taking selenium, my dose was reduced from 112mg to 75mg. (Hasn't helped much with the weight, though I did manage to drop a couple kilos.) Sounds like you should look for another doctor.

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It would be the 4th doctor. I’m currently just tired. I hope to find another doctor in a few months. For now, I just have to go at it on my own.

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That's too bad. It's so hard to find an open doctor. In Poland I always saw an endo but only started questioning things and reading more when I came to UK. (Where you can only see a GP for thyroid unless you've got a serious problem or push hard- if an endo can't deal with thyroid, how is a GP supposed to know anything...)

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Yeah. It is very hard to find a doctor who is open minded to not let his ego get in the way of my health.

I will try again in another town later. For now, I’m just fed up.

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I'm on 200mcg Levo adjusted a few times when it goes haywire but always returned to 200.

My weight gain is a stone and a half since Christmas with this last flare up, sorry I've no answer.

With other health problems it's difficult to move, legs arms etc

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Before you consider changing your medication level I would try some other interventions. Do you track your food? If not you should for a minimum of 2 weeks using myftnesspal or another tracking app. I noticed you said you eat very little but alot of the time we can be eating low volumes of food which are very calorie dense.

Whats measured is managed as they say so I would definitely recommend finding out what your current average daily calorie intake is over the course of a 2 week period you may be surprised once you log all food and calorie containing drinks such as coke/7up and milky coffee shop coffees etc. You need to be in a negative calorie balance regardless of your thyroid status when you are undermedicated the deficit needs to be larger to loose any weight and when you are properly medicated you will generally still need about 200cals less than a person of the same build with a normally functioning thyroid.

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I do track my diet. I take in between 1700-2000 calories a day in general. On some days I go over and recently I have gone less. I use MyFitnessPal. I have a eating plan that I try to follow.

I did eat a lot of chocolate this Easter but the weight was already high. I do not drink milk or sugar in my coffee (1 single espresso a day) and the only dairy I eat is yogurt. Not even cheese coz I’m not a fan of cheese.

It is not diet. Unless the few times I went over 2000 calories caused this... everything is possible.

In fact, since I’m breastfeeding, I was told to do 2300 calories but lately, since the weight gain, I have truly had no appetite. My milk supply didn’t suffer so I didn’t see any harm in it.

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Hi,

I did the blood tests and they are included above in the original post. Kindly let me know what is happening because it seems that I am not over medicated at all.

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