Meds

I've been taking meds for under active thyroid nearly a year now and they have not made one ounce of difference. I have had the dosage ammended higher 3 times and my weight gain has been ridiculous. I have been following healthy diets, exercising most days and using supplements but I only seem to be gaining more weight! Has anyone else had anything happen similar and overcome it? I'm getting beyond fed up with myself now and feel like I really need help!

Skip

Featured Content

Join our community

The community helps everyone affected by thyroid conditions by providing support, information and guidance.

Follow

Featured by HealthUnlocked

37 Replies

oldestnewest
  • Smasonx It's a familiar story I'm afraid.

    What are your current results? Please post them with their reference ranges and members can comment. Ideally we need to see

    TSH

    FT4

    FT3

    Thyroid Antibodies

    Let us know what dose of Levo you take too.

    Weight loss can only happen when optimally medicated and it doesn't sound as if you are. Also, exercising depletes T3 and if your FT3 is already low then it will lower even more with hard exercise. Until you are optimally medicated the best form of exercise is something gentle like walking, swimming, yoga.

    Have you had vitamins and minerals tested? These need to be optimal for thyroid hormone to work properly, not just 'in range'. Ask for the following to be tested if not already done:

    Vit D

    B12

    Folate

    Ferritin

    Do you take any other medication or supplements that may interfere with Levo?

    Do you have any gut problems?

    Do you take your Levo on an empty stomach, one hour before or two hours after food, with water only?

    When having thyroid tests, do you always book the first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is what is needed when looking for an increase in dose or to avoid a reduction. It gives continuity of conditions so that results can be compared accurately.

  • Hello! Thank you very much for your reply! I have felt very much in the dark about the whole thing, like I've not really understood anything! I'm awaiting some blood test results is it okay if I can get back to you on my results so you can have a look?

    I feel like my doctors don't listen to me, they just put the dosage up but they haven't got much to say to me regarding my weight and what to do about it. I am currently on 75mg of Lebothyroxine. Since the beginning over a year ago I don't feel no different, I started to pick up but I'm not sure if that was because I got put on Sertraline I became confused as to what was working and what wasn't. I took myself of sertraline a couple of months ago and feel no different!

    I currently take my levo at around 6am when I wake up for work with water, I normally don't eat till around 10am on my break and every time I've had a test they've told me it's 'non fasted' so maybe I need to try fasting instead. I'm anxiously awaiting my results as I know they're not right at the moment

  • We always say that thyroid tests should be fasting, early as possible in the morning and take Levo after the test.

    Most certainly post your results when you have them, please include the reference ranges too so that we know where in the range you fall. Ranges vary from lab to lab so it's important that we know them.

    In the meantime, have a wander around ThyroidUK's main website, start at About the Thyroid (purple menu, left hand side) and work down

    thyroiduk.org.uk/tuk/about_...

  • Really!? My GP has always made me do them non-fasted. I will defo be doing this with my next set of test results!!! Thank you very much! I will be sure to look around the website, and will post my results and updates when I get them! Really want to try and get this on track as I feel this online forum may be more helpful then any help I have had in the past year from my GP.

  • Yes, mentioned in my first reply to you above, last paragraph :)

  • thank you! :)

  • Hello Smasonx

    I have been taking Meds for a similar amount of time and although I think the Levo was working at the start 50mcg (I lost nearly a stone) the initial affect of the medication certainly stopped after a couple of months and to my dismay I quickly put more back on than I lost ! like you I regularly exercised, I walked (3 miles) in my lunch time every day cycled to work most days cycled home . Active gardening and mountain biking at the weekends. I recently had my bloods checked (3 weeks ago)and my dose has been increased to 100 mcg (people on here have said I'm still probably under-medicated) . At the start of last week I was feeling so low and like you I joined this forum , I also realized that when I was feeling good I was following a strict-ish Paleo diet. I know its really hard work to do this but its the only thing at the minute that stops me feeling like a zombie, after a week the clouds are already starting to clear. I hope you find your answer soon

  • Sorry forgot to say I also started taking my Levo at night 2 hours after food and 4 hours after my magnesium citrate supplement. I'm not sure if this has helped but I feel better with adopting this approach and I've started to loose a few pounds finally.

  • Thank you for your reply to me! I agree when I first started taking levo at 50 I picked up a little but this didn't last long at all. I actually find now when I was put up to 50mg and the 75mg I felt worse every time and my weight shot up! Everytime I get on the scales it just goes up, I've always thought it was me but I now know it must be the trouble with my thyroid. I'm currently doing at least an hour in the gym a day various activities and I have a very active job which I find I am exhausting myself by even doing that!

    I am interested in looking into the Paleo diet, I have tried everything else and nothing is working! I'm not normally any good with strict diets but I am really up for trying as I am at my wits end now!

    I take mine in a morning, I honestly feels like it makes no difference so maybe I should try taking the Levo at night. As for the magnesium is this something that was prescribed by your doctor? After reading the forums I have noticed a lot of members self medicate and this seems to help them.

  • I take Magnesium Citrate for aching muscles and joints , these ache because of Hashimotos not because of exercise (the pain/ ache can actually stop me exercising sometimes) There are many supplements you can take to help alongside your medication , and some good books and websites too for really useful info. If you google the " thyroid pharmacist " (Izabella Wentz) she has some very useful ideas on coping / healing Hashimotos . I'm sure the Paleo diet would help you feel better , it has certainly helped me in a week (lost 4lbs) ! but you do have to be strict with yourself. Please also remember that my Meds may have started working properly as well so weight loss may be down to them...

  • I'm making some big changes to my lifestyle already, and although I'm not on the right medication just yet, at least I feel like I am doing something, Thank you for your advice! Have you got any suggestions for the Paleo diet, have had a quick scout on the internet but seems very confusing I have also seen some people have done well on a gluten free diet is this similar?

  • Ahhh I just wrote a load of stuff down and closed the tab down by mistake .... now its all gone !!!

    Start again ....

    Great to hear your taking control of your own health. Just like you I've been on meds for around a year and felt little change when just taking the meds alone. I did paleo , supplements for around 3 months felt great and thought I'd mended myself, and really since January I suppose gradually got to feeling absolutely pants like I did this time last week. I've come to the realization I cant eat what I want anymore as although food sensitivities are not having an obvious reaction with me they are obviously having a reaction I cant see and thats not helping me. I've got a chronic condition (Doctors cant fix it only give meds for symtoms) so these changes i make have got to be for life.

  • This is not a good day just pressed reply before I'd finished sorry !!!

    Paleo is basically eating like a caveman would eat .. Meat vegetables fish , some fruits salad . You basically have to cut out all grains and legumes , wheat , oats, barley, diary , it sounds pretty daunting really but its not that bad. If I'm honest your not supposed to drink , but I try to be good and follow the diet strictly for 80% of the time and 20 % I have some treats mostly weekends ..

    Have a look at these websites they show some recipies and ideas

    thepaleomama.com

    paleoleap.com

  • Haha, nevermind! Certainly going to incoperate this idea into my diet also, I just feel like because my metabolism is so, so bad I need to be avoiding all processed, sugary foods for any kind of progress! I hope I can stick to it but I'm going to try my best. It's hard when I have eaten what I have wanted all my life now I've got to make this big change, I just hope it works! Thank you for your advice it has been really helpful to me!

  • I thought this, these changes that I am making are going to have to be for life. It will be so easy to put the weight back on, especially if it is because of food sensitivities. I have read that the thyroid if not right can be caused also by food sensitivities such as gluten. Most days I am like a balloon, no energy, stomach cramps I have always put this down to either being too full but I am looking at other options now. I plan to start a gluten free diet and see if it makes any changes, I know this may be hard if my medication isn't right but even if it makes me feel a little less exhausted and less bloated I will be happy!!

  • All you can do is give it a go, if you give it chance I am sure you'll find you feel tonnes more alive !! if not back to the drawing board and try again..... I think that it will help though because you speak of being bloated and the minute I have white bread / pasta / My stomach just blows up like a balloon also , good luck !

  • Certainly! It's crazy I feel like I have learned more about my condition then I have in the year I have had it just from researching and joining this forum, that I am actually feeling quite positive today! Thank you!

  • hashiman and Smasonx, you're both making the same mistake, here : exercising! Exercising will not make you lose weight, but will use up your T3, making you more hypo, so that you put on more weight. Just gentle walking, swimming or judo until you're optimal.

    It is perfectly normal to feel well on a dose for a while, and then to feel the symptoms come back. It just means you need an increase in dose. Therefore, you should get tested six weeks after each increase, and ask for another increase, due to symptoms. I don't think doctors understand any of this.

  • Hi greygoose ,many thanks for your reply its great to have advice from people who are living with this chuffing disease, and I totally agree with you that neither Smasonx or myself are optimal at present (even after a year of meds !) My last blood test TSH was 9.08 so sadly far from optimal .... What I struggle with is that if I don't do any exercise I could drink water and put on weight , no joke .... This is actually the reason I went the doctors and found out I was hypo in the first place. The thing about exercise is that if I don't do it ,I get so low, exercise lifts me and my mood so much. there are times when my legs ache so much through Hashimoto's (not exercise) that I have to stop, but I feel so much better when back on it again. I'm not a gym goer at all, just Walking / Mountainbiking / Swimming and play veterans rugby occasionally. Also I have no doubt now that diet also plays a massive part as only going Paleo for 10 days or so again has made me feel so much better too , I suppose that eating paleo gives me the energy to exercise and that if I relied on meds alone I wouldn't have the energy to exercise if that makes sense ? I am also taking many of the Supplements recommended by Izabella Wentz I'm sure there helping also as compared to how I felt a couple of weeks ago its chalk and cheese, (And I've lost 4lbs)

    After saying all that, the real crux is like you say, I probably do have a pants doctor (I get checked every 3 months !) as clutter has mentioned in one of my previous posts I have obviously been under-medicated for a long time to have a TSH result like I did , maybe if I was optimal I could eat what I want and do what I want but due to not being optimal , I feel the only options open to me at present are to do what I'm doing and try and take control of how I feel myself.

    I'm probably doing everything wrong to the book but without anyone providing me with an instruction manual on how to deal with this blinking disease I can only do what seems to help me.

    Please forgive me for waffling on for so long but could you answer a question for me ? If my meds were optimal could I eat what I want and have the energy to do what I want without diet or supplements ?

    Thanks so much for your time its so hard to know which way to turn when your new to this.

  • Well, it depends what you mean by 'diet' and 'eating what you like'. If eating what you like is stuffing yourself with sugary cakes and chocolate, you probably couldn't do that without consequence. But the odd iced bun wouldn't hurt - unless you're Coeliac. And, if you mean by diet, low calorie, then you shouldn't be doing that, anyway. You should be eating your fill, but of good, clean food. To a certain extent, I do now eat what I want, but I don't want very much. I don't know how it would work out if I had a large appetite. But, I never approve of calorie-counting.

    And, of course, it does depend what your hypo weight consists of. Is it really fat? Or is it water weight? If it's water weight, then no amount of diet and exercise is going to shift it, anyway. It's all down to keeping your FT3 level stable. Too low, and the water (mucin) will return. Too much and the mucin could still return. If it's real fat, then low-calorie will make things worse, so you do need to eat a reasonably high level of calories, to maintain conversion. As you say you can put on weight just by drinking water - which doesn't surprise me at all - then your problem is probably mucin. Fat does not accumulate rapidly. Putting on real fat is a long, slow process. Retaining water can be almost instant.

    The odds are, you will always need certain supplements - yes, I know that bugs you. :) It bugs me, too. So, now that I think my levels are pretty good, I have little holidays from them. But, at the slightest twinge, I start again. You are always going to have to stay in touch with your body, that's for sure. But, it becomes second nature, after a while. :)

  • Hi greygoose thanks for getting back , its a real help.

    I definitely don't diet low calorie , by diet I mean eating to a certain protocol i.e Paleo / Auto immune etc.. I'm not coeliac but GP did say that doesn't mean I'm not gluten intolerant. If I ate the odd iced bun (which I might well do once in a blue moon :-) ) my stomach would blow up like a beach ball same with white bread / pasta/ white rice. Does this happen to you or anyone else reading ? and if my meds were optimal would it still happen ?

    If my meds were optimal would the brain fog / aches / fatigue / drive and the long list of issues we all suffer with get better just with thyroid medication alone (Levo) and supplements ?

    Thanks again for letting me pick your brain, it helps with my way forward

  • Well, it sounds like you really are sensitive to gluten. Are you doing anything to heal your gut? Drinking bone broth, or taking collagen? I really don't know if that would go away when you're optimal. Depends what's causing it. I don't have that sort of problem myself, but I know lots of people on here are gluten sensitive, without being Coeliac. So, why not post a question asking just that?

    I don't - and never have - followed a Paleo diet, nor anything like it. I did do a strict gluten-free/dairy-free/nightshade-free/sugar-free diet for three months. But it didn't do anything for me. And, when I slowly reintroduced these food, I didn't feel any worse for it. So, I don't think - and never have thought - that my problem stemmed from my gut. (Just did it to prove a point! lol)

    On the other hand, when you are optimal, both hormones and nutrients, the brain-fog, aches and pains, and all the rest, should disappear. Because that's what optimal means : you are on a high enough dose to get rid of symptoms. Anything less is not optimal. No matter what your doctor says! :)

  • Your a star thanks for your reply.

    Yep kind of do this leaky gut protocol Dr Axe stuff, was doing it years before I was diagnosed with Hashimoto's read quite a bit about leaky gut and the body recognizing gluten as thyroid tissue or visa versa which kind of makes sense to me regarding the auto immune stuff. You ask your GP about it though and he looks at you like your some kind of fruitcake ! makes me so mad when there's so much evidence out there.

    I think I probably need to push endo a little more on making me optimal before I go too much further then ...

    Thanks so much for letting me pick your brain its been a big help .

  • You're very welcome. :) Good luck.

  • I continue to have all the same symptoms also and my doctor raised my synthroid to 100, terrible hair loss, weight gain, exhaustion, still the same. I know there has to be a better way, synththroid seems worthless.

  • I've also noticed hair loss since I was put to 75mg, this was something I hadn't noticed before! I hope there is and I hope you find it soon, I feel at my wits end now! It's become draining and taking over my life. So worried about what I'm eating and if my medication is ever going to work!

  • You definitely need to remember not to take your meds for 24 hours before the blood test. You can take them once the test has been done.

  • Thank you, I will be doing this I have bloods booked for a week on Monday around 8am. So I have to do it fasted too?

  • some say it can help.

  • I'm up for giving it a go!

  • Ive always been told that i wont lose any weight until i'm on the right dose and that my FT3 is optimal so it would be good to see your latest blood test results for TSH, FT4 and FT3 if you can get your doctor to do them for you. It is also worth noting that if you try to diet and exercise too much you will deplete your FT3 which is what i was doing in my desperation to lose weight...in normal people who dont have a thyroid problem this works...eat less...exercise more = weight loss...well...it didnt work for me...i just ended up more tired and defeated by it all and my weight didnt budge at all. I'm working on getting my FT3 levels up and most of my problem is lack of nutrients...ferritin, Vit B12, Vit D and folate being low. Its really frustrating i know...i'm with you on that.

  • It's very frustrating, it's lead to even more problems for me such as depression, low self-esteem, anxiety. I don't feel good about myself at all. I have been going to the gym now for around a month, purchased a fitbit got myself active running, weights, classes and nothing worked so my levels can't be right. Ive got a blood test next week and a meeting with my doctor so hopefully I can get my levels and concentrate on getting them right. I feel like all my exercise has been a waste of time, but if I stop I will feel worse about myself like I am not doing anything :( thank you for your advice

  • Depression, low self-esteem and anxiety are also hypo symptoms.

  • I know what you mean... exercise is good, i'm not suggesting you dont do any as its very important to keep moving but doing strenuous cardio i think is what will deplete your FT3 levels.

  • Okay, I'm going to take it easy for now and see if it helps with the exhaustion. thank you

  • Hi, I feel your pain !! I have Hashimoto's ( the auto-immune Underactive ) and take T3 only, as I can't convert the Levothyroxine..my GP said that I " cannot fail to lose weight" taking this ! ( The T3 I take is marketed in the USA as an anti-obesity drug ) .. 2 years on, and I cannot shift hardly an ounce ! I am always bloated, tired and generally fat ! Have tried all kinds of 'healthy eating' plans - no 'diets' .. tried Gluten Free..cut out bread..regular exercise..NOTHING works to shift his weight :o( ... am now trying to get him to give me a prescription for NDT, which I have read good things about, and which I have read, helps with weight loss in many users. x

  • Dear Soozie 1964 - I am sorry this is such a late reply to your post above......but I have only just read it and I have to say it is very very depressive reading. I am genuinely sorry for you. but what do you do? its the hardest thing in the world to accept that no-one really cares about your situation isn't it? My GP and I have pretty much fallen out about this as when I saw him on Tuesday and explained the despair over the fat/weight etc he basically told me that he couldn't do any more for me? He said that he had done everything possible (what with the various scans etc) and that my TSH was a bit low...my FT4 a little high...so wants to take my Levo down from 150 to 125 mcg .....but apart from this - the bloating and weight problem that I was complaining about he says, could be from a variety of different ailments and that it was all very complicated. I was quite speechless when he spoke and I got the message very clearly that he was not prepared to spend any more time on my problem.

    I am not a rude person.... I spent my working life teaching and training others in the aviation industry, to communicate well and effectively. I don't consider I was rude but the problem is, GP's are like the state school teachers in the UK...they don't believe we should have a say. They believe they are the superior knowledge on the welfare and education of our kids and that if we as parents should dare to disagree....well......how dare we? I have found through my condition, that many NHS GP's have that same arrogant attitude. Hopeless...difficult to beat.... just totally demoralising.....its good to be able to share the frustration with others who understand.....-

You may also like...