Levo and weight gain

[LadyBountiful]

Hello. I have neen on Levothyroxine 100 - 125 mcg for 10 years over which time I have gained 2 stone. Despite following a very healthy mostly vegetarian diet with no sugar fizzy drinks alcohol takeaways etc. and low fat milk and natural yoghourt as my main dairy my weight refuses to budge. I have no idea what I am doing wrong but I hate being my current weight and am wondering if T3 makes any difference to weight. If so perhaps I should try to add it to my Levo. Any comments? I am in Somerset. I am not very energetic but try to walk 1 - 2 miles a day since I retired last year. When working I was always driving or at a pc so I had thought at least my regular walking would have some results coupled with removing bread from my diet.

[greygoose]

Could be you're not doing anything wrong - although low-fat dairy is very, very wrong! Your body needs fat, and eating fat doesn't make you fat.

Could be you're under-medicated, or that you have an absorption problem, or a conversion problem. But, we would need to see your labs to know any of that. When did you have your last blood test? Do you have the results and ranges? If so, post them here and let's have a look.

But, it's not just about hormones. All your nutrients need to be optimal, too. And if your diet is mostly vegetarian, you could be low in B12 and iron. Have you had your vit D, vit B12, folate and ferritin tested? If so, post the results and ranges and let's have a look.

[LadyBountiful in reply to greygoose]

Am a regular blood donor so iron is ok. I stopped my levo myself last August but my GP said I must go back on it because the test results after stopping it for 2 weeks were worryingly high in the TSH but I said surely that is a normal response to withdrawal after 10 years of meds? But she said I must go back on because I had almost fainted after a steep hill climb one day. I thought it was more likely low blood sugar as I had eaten very little (diet) before my walk. So I am back on Levo and my endless diet of stirfry chicken with onecal spray! Due for next check soon I suppose.....

[greygoose in reply to LadyBountiful]

Didn't your doctor tell you that levo is for life? Thyroids don't get better, and there's nothing you can do to make them better. You just have to keep taking the thyroid hormone replacement for life, otherwise, you'll die. It's not a question of how long you've been on them, it's not that you get used to them or addicted, or whatever, you need them to live.

So, stop the dieting! It may sound contradictory, but dieting will make you put on weight, not lose it. As for onecal spray, what the hell is that? It really does not sound like something you should be using. When you're hypo, you don't put on weight because you're eating too many calories, so cutting down on your calories isn't going to make you lose the weight, is it? Not logically.

I don't know how much you know about your disease, but I get the impression that you don't know very much. So, the first thing you have to do is learn about it. You need to know how thyroids work, and how thyroid hormone works in the body.

For a start, the levo you are taking is the thyroid hormone 'thyroxine' or 'levothyroxine' or 'T4' - different names for the same thing. T4 is a storage hormone that has to be converted into the active hormone, T3. The definition of hypothyroidism is low T3. And, if your T3 is low, you will get all sorts of symptoms, like weight-gain. So, the only way to reduce the weight is to raise your T3 to optimal levels.

Not all people convert T4 to T3 very well, for many reasons. But, one of the reasons is, low calorie intake. So, if you go on a low-calorie diet, you will not be able to convert your levo to T3, so you will stay hypo and put on more weight.

When you go for your next blood test, make sure your appointment is as early as possible in the morning, and fast over-night. Leave 24 hours between your last dose of levo and the blood draw. I doubt your doctor has ever told you that, but that is the way to get the best results.

After a test, always, always ask for a print-out of your results - if you live in the UK, it is your legal right to have a copy. Then, post your results on here, with the ranges (numbers in brackets after the result) and let us have a look. Maybe we can spot where things are going wrong.

You may think your iron is ok, but that's not the same as optimal. Another reason people can't convert T4 to T3 is sub-optimal nutrients. So, I would urge you to get your vit D, vit B12, folate and ferritin tested, just to make sure. Hypos often have low nutrients, due to low stomach acid, no matter how good their diet is. And, if you're avoiding good fats due to their high calorific content, then your diet isn't all that good. Some vitamins need fat to be absorbed.

[Tonic143 in reply to greygoose]

hi I have found this very interesting I have had my thyroid problem since1986 and never been told any of the things you have mentioned this time I was told my vit d was low but not to worry thank you again for this information

tonic143

[greygoose in reply to Tonic143]

The majority of doctors won't even know all of that! That's the advantage of these forums : collective knowledge. No one person can ever know as much as we know, combined.

[ellj]

I wish I could give you a magic answer but just wanted to tell you that you are not alone.

My own diet is not as good as yours as I have not been as good at cutting out the baddies.

Despite this I lost 10 kilos last year, only to gain it back this year when my thyroid levels went haywire.

I tried t3 but sadly for me it doesn't seem to have made any difference.

Others will most likely be along who have had success with it.

I am not able to walk more than a few steps now due to other health issues but do think walking helps so don't give it up.

I expect others may ask what your test results are before they can offer as use so if you have them to hand maybe post them here.

Good luck

Ell

[ellj in reply to ellj]

I knew others would be more help...grey goose must have replied while I was typing.

[crimple]

You would need to be sure that ferritin, folate, B12 and Vit d are not just in range but near top of range. You also need to know your current TSH, T4 and T3 levels. A blue horizon or medichecks finger prick test can give you the information to post on here. Without that info it is difficult to advise.

[SlowDragon Administrator]

You need to know results for TSH, FT4 and FT3. Do you also have high thyroid antibodies? You need to know. Did GP test these? If not ask that they are tested.

If antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working.

Have these been tested, if not ask that they are. Always get actual results and ranges.

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after.

If you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

[jgelliss]

LadyBountiful

I concur with everything that greygoose said . When I was not optimally dosed with T4 Levothyroxine I had weight issues palpitations blood pressure insomnia anxiety panic attacks jaundice skin dry skin muscle cramping aches and pains low energy cold hands and feet adrenal pain . The reason I'm sharing my symptoms is that I did not know that I was not dosed with enough T4 . My lab results showed low TSH with optimal T4 . But my T3 that Dr don't know much about was low and they considered my labs just perfect . But I wasn't . I was left with all the symptoms of a hypo patient but not according to the so called GOOD DRs . I self medicated and raised my dose by 25mcg and held it for six weeks Some of my symptoms resolved but not all . Raising another 25mcg made more improvements . Go slow and low to give your body time to acclimate to new changes . I dose with low dose NDT for my T3 mix . I dose with Vitamine "D" , B-12/folate , Selenium , Iron (I'm a vegan and test low). Nutrients are great partners to our thyroid meds to work well for us .

Wishing you fast resolutions .

[Elven]

Please don't abandon hope! Try eating low carb or if that's too hard, low GI. Don't restrict healthy fats. I am vegetarian too yet I lost a lot of weight on vegetarian Atkins. Google it for full advice. It really works and you won't feel hungry at all. Carb restriction works very well with hypothyroid, particularly HIGH FAT, LOW CARB. Don't prejudge possible results! Try first, and you may well be pleasantly surprised.

My TSH was in the hundreds at the end of June, 2016. I was very late diagnosed and swiftly put on 100mcg levo, starting 2nd July 2016. I am now on 200mcg. My weight had shot up from 10st to 18st 7lb. I am 5' 4. I looked and felt dreadful, and had all the classic exhausting symptoms of hypothyroidism.

Fifteen months later I weigh 11st 2lb. I watch what I eat and most of the time keep portions moderate. I'm vegetarian but still manage to eat low carb. I add coconut oil and cream to coffee as healthy fats help weight loss. They also make meals more satisfying so less or no hunger afterwards.

I do have treats but limit them. I shouldn't eat sugar but occasionally do. At present I am on a quest to get to 10st. I'm no angel, I love food, but I am determined to get back to where I was and maintain for a while, then maybe lose a bit more. Will see how I look/feel.

Levothyroxine has been a Godsend to me and to two close friends who like me are recovering well and also deeply grateful for every improvement. Without levo I would never have seen such a profound change for the better.

My advice to others is to be patient. Until you're on the right dose you won't feel right and weight loss may be slow. Eat nourishing food, take the many essential vitamins recommended here. I do and I notice a marked difference particularly in my tinnitus which was quite severe. The whistling/whining has reduced and on a good day it's less than 50% in volume than before. I've been vegetarian since my teens (I'm now 63) and although I have supplemented for decades I wasn't doing so in any serious, measured way. A good multivitamin is not enough for people with thyroid disease. Iron, D3 and B12 are making a huge difference to me as I was very short of all three - and the rest.

I still get tired days, exhausted days, weary lie-down days. I still can't sleep well at night yet can hardly stay awake in the afternoon. My leg muscles in particular are still like jelly ('jelly leg syndrome') and I have little stamina at the best of times. But I'm much better than I was in July 2016, because back then I was very ill and not far, I was told, from falling into a coma,

I needed and wanted desperately to lose weight. 18st 7lb was a nightmare. I've lost more than seven stones now and I intend to carry on and lose the rest, God willing.

Good luck everyone. Never give up xx

[Whiterose in reply to Elven]

Well done Elven. I am at your weight now. I find it so hard to lose the weight. I am on 125 Levothyroxine. Just found a sympathetic GP and had some blood test done, so hoping for help. I have a condition called Charcot Marie Tooth a form of nuropathy to lower limbs and extremeties. Exercise is very difficult for me, although go to Hydrotherapy once a week and toning tables. Any advice most welcome.

[Elven]

I'm 10st 4lb now. Was a bit lighter than that before Christmas but my elder son passed away suddenly on December 7th 2017 aged 42 and I started to nibble again. I'm still stunned, heartsick and bereft but even so I'm now back on track. I can't let grief and shock cause me to back-pedal. I need my health and reduced weight to continue to propel me towards a fuller life. I miss my son every second of every day xx

[Elven]

PS

You can do exercises lying down on the floor on even on your bed. Weight-bearing exercise is probably too demanding for weakened limbs and extremities. Google the topic and lots of useful ideas will appear xx

[Kitten44 in reply to Elven]

Hi @Elven,

Just read this thread. Thank you for your advice, it is encouraging to hear a success story. Like you, I'm 5'4'' and used to be 9st7lbs. God knows how big I am now, last time I braved the scales last year it was over 12st and i'm 2 sizes bigger now. (if I knew my weight I'd be so utterly depressed). Reading your posts make me think there's hope.

I'm so sorry to hear about your loss, and double thanks that despite the grief you still take the time to contribute to this forum and help others. xx

[Surehope in reply to Elven]

Hi Elven. I'm really sorry for your loss and pain and I'm praying that the God of all comfort will comfort you in this darkness and ease your distress

[Elven in reply to Surehope]

Thank you so much for your prayers and kind words. I pray night and morning, and talk to my boy, and try to find ways of living - surviving - without him for however many years may be left to me. It's horrible, being a bereaved mother xx