Recently commenced Levothyroxine treatment but need advice re: weight management and bloods!

Hello everyone!

I wrote on the forum a few months back prior to attending a private GP reccomended from Thyroid UK in May. She is a wonderful Doctor and actually listened to me which I think we all know is quite rare - to have a Dr actually listen to you!

Prior to meeting this Dr my TSH was always quite higher in the ( ridiculous ) normal ranges quoted. At one point it was 4.2 and then 3.6 but my free T4 was barely scraping the lower range of normal. As a result I felt very fatigued, crushingly tired and suffered from completely unexplained weight gain despite incorporating healthy lifestyle changes.

So then I met this great Dr in Harley Street, London. She agreed to a 3 month trial of 50mg levothyroxine. I was wary of the placebo effect at first, but it actually resolved all of those awful non weight related symptoms by the end of the trial. The weight was kinda stable after 3 months but she said I looked as if I had lost weight. Maybe I wrongly thought that once started thyroxine the weight I had gained would just gradually reduce with good diet and exercise.

I went to a follow up appointment in London in August, further bloods were taken. My TSH was now 2.04 ( range 0.27-4.2), my free T4 : 15.5 ( range 12-22) and free T3- 3.9 ( range 3.1- 6.8). I had the discussion with Dr and she told me to keep at it with the exercise and over time weight will get better. I've limited my gluten intake alot but not truly gluten free if I am frank.

Unfortunately, the weight hasn't gone down its actually gone up a little. It is causing me some concern as I am still putting on weight, have chipmunk puffy cheeks and a dry mouth despite taking levothyroxine. I would LOVE to actually lose weight as it is making me feel very down, I don't even look in the mirror if I can help it and this is not like me.

So now I seek the advice of the good people on this forum to help me. I am truly grateful for any advice you can give me. I currently take my 50mg levothyroxine in the morning usually after my breakfast- I have been told I should take this 30 mins before food. Does this have a massive effect??

I have read alot over the past few days about getting adrenals checked and how zinc & selenium supplements can help thyroid function. I have purchased these supplements from the health food shop and I am taking them in the hope they can. I do considerable exercise and I am trying to go completely gluten free. I am limiting my intake of simple carbohydrates and and eating more protein rich foods. I typed into google ' How to lose weight when you have an underactive thyroid' and they gave me lots of useful tips about what to avoid and such as lots of simple carbs that cause insulin spikes.

What I would like to know is any useful tips from anyone who has had success in losing weight with suffering from underactive thyroid. What did you all do? TEACH ME! :P

Do you take Armour instead or another T3/T4 combination? Am I doing the wrong thing with taking only T4? what are the benefits or T3 and T4? what diet helps you? Please help me , I feel a bit a bit lost and need your advice

Love,

Jose

37 Replies

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  • I have heard alot about optomisiing thyroid function- can you guys clarify what I should be aiming for in terms of T3 AND T4 Levels?

  • Keeping levothyroxine away from food, drinks (other than water), other medicines and supplements is important. Half an hour is not enough. Lots of slightly different time gaps are mentioned but always at least an hour before and after. With some things, such as iron supplements, the advice is a four hour gap.

    (Some of us take our levothyroxine at bed-time. I always have done so cannot compare. Some feel better doing so, others not. It is at least an option.)

    Wondering why you are being kept with a TSH over 2? When I started to go downhill my first TSH test was about 2. Anyway, TSH is not ideal for gauging treatment.

    Your Free T4, a better measure, is also rather low. Why on earth not let you get at least half way up the range?

    And the FT3 is also fairly low in its range.

    Did you take your levothyroxine before the blood draw for these results?

    What time of day was the draw?

    My opinion, for what it is worth, is that you are being under-treated. You are effectively still hypothyroid. Few people only need 50 micrograms. My brain cannot fathom why this wonderful doctor is intent on not treating you adequately. She might be far better than others but she ain't good enough even if she does listen.

  • May try and take it at bedtime as I don't like waking up especially early with my work schedule.

    Dr said to in August me I am doing well on 50mg, and to persist with the weight loss things but really its not working for weight loss. I am actually getting bigger which is weird.

    How much t4 should I take? Should I change to armour thyroid? I know that it contains T3 which is good for weight loss ,right?

    Blood drawn at around 3:30pm, I think i had taken my T4 earlier that day.

    What kind of mg should I take?

    Ive got a blood test next week, Im cautious of taking too much thyroxine because of bone loss and the cardiac effects the other Dr's have warned me about

  • Doctor should raise your levo by 25mcg around every six weeks till you feel much better and TSH is around 1. There is no need to change to any other option at present as you have to give levothyroxine a chance and it is the same process with alternatives, i.e. start lower and gradually increase until symptom free.

    I've mentioned above the process for blood tests for us to get the best posible outcome.

    Thyroid hormones should be taken on an empty stomach with a glass of water and wait about an hour before eating. If taking at bedtime, you should last have eaten about 3 hours before as food interferes with the uptake of the hormones.

    It is a big learning curve and the most often asked question is about weight gain which is a clinical symptom of hypothyroidism (there's about 300+).

  • Believe me, if you took too much thyroxine you'd only do so once as you'd have unpleasant side effects.

    Too little thyroid hormones will give you problems with heart as well as other organs.

    Before blood tests and levothyroxine were introduced the average doses of NDT were between 200 and 400mcg.

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • I agree with Helvella you are undermedicated 50mcg is a starting dose and average dose is between 100mcg to 200mcg of levo and some take more.

    Levothyroxine isn't a weight loss product. It is to raise our metabolism which is low due to being hypothyroid. It has to be at an optimum for us, i.e. TSH around 1, FT4 and FT3 towards the upper part of the range.

    Vigorous exercising when not yet on an optimum of hormones depletes the T3 and it is the only active thyroid hormoneneeded in our receptor cells . You need a decent dose of levothyroxine to convert to T3 which enables everything in our body to work efficiently, i.e. heart, brain etc.

    It is a gradual progress to get to an optimum of hormones which suit you (relieves your symptoms). You shouldl then be able to exercise as you wish. :)

    Blood tests should be the earliest possible, fasting and allow a gap of 24 hours between your last dose of levothyroxine and the test and take it afterwards. If GP hasn't tested Vit B12, Vit D, iron, ferritin and folate ask for these as we can be deficient.

  • I shall have to email the Dr about this.

    I know it isn't a weight loss product but with a better functioning metabolism I hoped I could be in a better condition to lose this weight as it is quite depressing.

    shawss- so based on my blood test results- should my Dr consider giving me more T4 to convert to T3 or should I just use armour instead? I assume this will help? Im a bit confused lol

    I will ask for sure, thank you! :)

  • Some doctors mistakenly believe that once the TSH is anywhere within the range (the figures are in brackets after the result) that we're on sufficient hormones but that isn't the case. We feel best when it is around 1 or lower and some doctors don't pay attention to our FT4 and FT3s which are better guides.

    For instance your results (as above) free T4 : 15.5 ( range 12-22) and free T3- 3.9 ( range 3.1- 6.8). Preferably the aim (it doesn't happen all at once - increases in hormone dose will) is for these to be towards the upper part of the range.

    I'll give you another link.

    thyroiduk.org.uk/tuk/testing /interpretation_thyroid_blood_tests.html

    I know your weight is of importance to you but, as I mentioned before, unexplained weight gain is due to low metabolism, i.e. hypo - so as your hormones increase there's no reason for the weight not to be reduced either through levothyroxine or dieting when optimally prescribed.

    If after a suitable time on any thyroid hormone product and you aren't improving overall, then a consideration could be given to an alternative.

  • wow wow wow, so eye opening. It has allayed a lot of my fears.

    I will consult the Dr, I have emailed her to consider upping my levo dosage due to the fact I still have symptoms! lets see what she says but I think I will be ok to take 50 mg extra. I'll look out for any side effects.

  • TSH follows a daily pattern which for most of us has a peak in the very early hours of the morning, and a valley in the afternoon. 03:30pm is quite possibly the low point of the day.

    If you take levothyroxine, you get a rise in FT4 for about two hours, followed by a slow tail for another six hours or so. This makes your FT4 look higher than it would have been, for example, just before you took your tablet.

    Although a really on-the-ball doctor could make some sort of allowance for these factors, they almost never do. Indeed, many would accept results which did not have the time of blood draw on them, not would they ask whether you had taken your tablet shortly before. Thus your TSH likely looked lower than it often is, and your FT4 looked higher than it usually is. Presenting a skewed picture.

    Much of the bone loss and cardiac effects that medics go on about (whether your doctor told you or it is what you have read) is based on the fairly extreme levels of thyroid hormones found in people with Graves disease. The sort of levels you or I might reach on ordinary doses of levothyroxine don't cause these problems. You could actually read of the growing appreciation among cardiac doctors of the importance of appropriate (high enough) thyroid hormone levels to heart health and recovery. Similarly, adequate thyroid hormone is essential for good bone health.

    I wholeheartedly endorse the comments about getting your thryoid hormone levels right and then thinking about weight. When hypothyroid you tend to both lose muscle mass and gain mucin (jelly-like deposits) which affect your weight but not in quite the way many of us usually think. You do NOT want to lose muscle mass. (Remember that the heart is muscle!) Dieting will not make you lose mucin and its associated weight.

    Finally, you will make yourself look better educated about thyroid medicine if you quote "micrograms" (mcg) for your doses rather than "milligrams" (mg). Check your packet! Everyone here will almost automatically assume the correct units but you need to make it clear that you do understand when discussing with medics.

  • If/when you increase the dose it needs to be done in small steps - 25mcg increase absolute maximum. Not doubling dose by adding another 50mcg.

    If you don't have 25mcg tablets ask for some, or you can cut 50's in half with pill cutter or alternate 50/100 to give 75 daily.

    Some of us even had to increase dose in much smaller steps e.g. 50/75 daily

  • Don't worry and as others have said don't concern yourself with the weight at all. When other things are right that will follow plus doctors don't like us being twitchy aboutvthst and some think that's the only reason we want it. When do you next see this lady? If it's fairlyvsoon I would concentrate getting other things right first like taking it correctly but don't use up any excess energy you may get my utilizing your meds better as that needs to build up a bit first.

  • It can take a year or more to begin to see the hamster effect reduce.

  • First I agree with everyone else that you are under medicated. Free T3, which is the critical measure, should be in the top quarter of the range. That will make you feel even better, and allow weight loss to take place.

    Do not attempt to reduce calories whatever you do. All the research shows that the calories in - calories out model does not work, and in the long run will cause weight gain. But do cut out sugar and sweet stuff, and refined carbohydrates. And resist all temptation to snack!

    I found that even with optimal thyroid replacement I failed to lose weight. I finally went low(very low) carb and high fat. But I am much older than you, and clean eating may be enough for you once you are better replaced.

  • Your doctor is very wrong about the exercise - I don't really think she knows that much about thyroid. Exercising uses up your T3, and you haven't got enough to begin with. And, you will find it very difficult to replace that T3 because you have to convert the T4 you are taking (and you may not be very good at that, but too soon to tell, because you aren't taking enough T4 yet). So, by exercising, you will be making yourself more hypo - because that's what hypo is, low T3, nothing to do with TSH, high TSH is just the result of low T3, not the cause - and will therefore put on more weight. As you have discovered.

    So, cut out the gym and stuff, and just do some gentle walking, swimming, yoga, to stop yourself rusting up. It's quite possible that when you get your T3 up to the top of the range, the weight will just come off by itself, without all that effort - it did with me! :)

  • If I am lacking adequate T3 for weight loss and energy then why am I taking t4 medication only? It doesn't make sense to me- should I just up my T4 with the meds and hope this helps with t3? Or should I consider ordering armour thyroid?

  • You're not just lacking adequate T3, you're also lacking adequate T4. You need an increase in dose.

    T4 (the storage hormone) converts to T3. But, you have to have enough T4 to get enough T3. You do seem to be converting quite well, you just haven't got a high enough dose of T4 to convert to enough T3.

    For long-winded reasons that I won't go into, doctors prefer prescribing T4 monotherapy. That's all they learn about in med school. In fact, they know nothing about T3 - some of them have no idea what it is! Therefore, prescribing it takes them out of their comfort zone - and, as you know, it's all about what doctors want, the patient takes second place! (Sarcasm)

    And, actually, most people do very well on T4 monotherapy. Provided they're given enough T4! Which is your problem at the moment, she's not giving you enough T4 because she doesn't really know very much about thyroid.

    Once you get on a high enough dose, you will be better equiped to know how well you do on it. But, no form of thyroid hormone replacement is going to work if you don't take enough of it. :)

  • Do you think I should take 75mg for the next 6 weeks? and then go up to 100mg and see what happens?

    I will ask her to increase it if I can get in touch with her. If I don't get through can I just buy it online? PM me if so.

  • I think you should get tested after six weeks on any dose. :) I'll talk to you later. Got to go out for lunch!

  • In any case, all the research shows that exercise does not help with weight loss. It is still a good thing for fitness, but while you are lacking in T3 hard exercise is not a good thing!

  • I know what you are saying but I feel silly just sitting around not moving much when I am trying to reduce my weight! I am almost obese according to BMI so I need to do something about this.

  • The BMI is rubbish, take no notice of it.

    There is nothing you can do. Hypo weigh-gain has nothing to do with calories - except that too few calories can make you put on more weight.

    You just have to try and accept that, when you are hypo, all the life rules and regulations you thought you knew, fly out of the window, and everything is turned upside down.

    You also have to try and accept that all of this is going to take a long, long time to resolve. You didn't become hypo and develop symptoms over-night, and it's going to take longer to get rid of them, than it did to acquire them, I'm afraid. That's hypo life.

  • Thank you so much everyone, I really value the advice you have given to me. I feel like there is a way forward and, to be frank, I didn't feel this way yesterday prior to writing on the forum.

    My thoughts are these... Should I stick to levothyroxine? By all accounts it is the T3 that helped with the weight loss but I am aware t4 needs to convert to T3. Dr said to me you do not have a conversion problem from t4 to t3. She said if I was alot older then I may have that issue but as I am 28 it is unlikely to be the case? Do my results support her opinion?

    Secondly, the 50mcg levothyroxine needs to be increased by all accounts, my understanding is that if I increase my dose I should do so in 25mcg steps , and do that for 6 weeks and see what the situation is then. My only concern is I do want to irritate my doctor as she has done alot for me despite what people have said. I have emailed her and I hope she gets back to me soon. My next meeting is probably August 2017 so I feel I will have to see her far before that if the email method does not work-I will send her my new blood test results to keep her in the loop.

    I have been told that potatoes are not good- is this something everyone here agrees with?

    Finally, if my weight gain is mucin- then how on earth do I get rid of it? lol

    Thanks everyone, please share knowledge- knowledge is power :D

  • For the time being, you should stick to levo, yes. You are only on a starter dose.

    The protocol is that you stick on a dose for six weeks, then get retested, and increase by 25 mcg. You repeat this proceedure until all your symptoms are gone.

    Your doctor is doing what she can for you, but her knowledge is limited. You have to learn all the stuff that she doesn't know and gently guide her. It's not an ideal situation, but that's the way it is. However, she is right about your conversion, it does seem to be good. But, it has nothing to do with age! They do have some really silly ideas. lol

    Potatoes are not good for some people. The could have an allergy to nightshades. In which case, they won't be able to eat tomatoes, peppers or aubergines, either. But, we're all different. And, apart from processed foods, which we shouldn't eat, we should just be eating what we like, and what likes us. If something disagrees with you, don't eat it. But, apart from that, there are no forbidden foods except unfermented soy. That, you should avoid like the plague - soy flour, soy oil, soy protein, soy milk etc.

    How do you get rid of mucin? You optimise your FT3. :)

  • Hi Jose88,

    Definately leave a gap of one hour in the morning after you take your thyroxine and before you eat. I know from personal experience that if you dont leave that gap your thyroxine will not be absorbed well. Also as mentioned by someone else take all your vitamins etc after four hours of taking your thyroxine. I ran into big problems when I didnt follow the above. It was only after reading someones advice on this forum that I took it on board and noticed the change.

  • I don't think you have reached the stage of needing to try going off the T4 piste with T3. There is nothing to suggest that your conversion is not adequate, and everything to suggest you just aren't taking enough Levo.

    Next, potatoes. It all depends on whether you are sensitive to nightshades. If you are then they will increase inflammation, but you haven't said anything to suggest that you are really suffering from that. The easy way is to cut out all nightshades (that includes tomatoes, aubergines, peppers and chilli as well as potatoes) for a while and then re-introduce. But it wouldn't be high on my suspect list.

    Exercise is fine, just not hard exercise like running, the gym etc. Stick to brisk walks or gentle swims.

    I wouldn't panic too much about mucin at this stage. If you have it after everything else is sorted there are ways to deal with it, but you probably won't have to.

  • I have football later, this is bad lol

  • So Ruthi, what dose do you think I should take next? 75? 100?

  • I would go up by 25 and then get tested and let us know your readings and ranges. T4 only works well if you are on the right dose but what you don't want is to have a big leap and go hyper! That is very uncomfortable and can mean it takes longer to get back on the right track. You may then get to the point that one dose isn't enough but the next is too much so then easier than cutting a tablet in half is to take on alternate days the two doses. I did that when 100 wasn't quite there for me but 125 was too much do I alternated then but then found I couldn't remember which I needed to take that morning! So I did 125 Monday, Wednesday and Friday and I was fine but had it still not been right I would hacmve tried 100 on those 3 days and 125 in all the others do that's handy to know for fine tuning. I've just read the more resent posts and we all say losing thyroid weight can only be done with maximising dose but the extra can be that when you think you are fat you tend to let yourself go a bit and eat things that usually you wouldn't but it can be done when things are working well so don't worry about it. I bought an app for my phone which recommends weighing and charting it every day and it's never a straight line-it's not suppose to but it encouraged me not to over eat with bad habits I'd picked up! When you get your levels in a more acceptable range then increase your exercise but at the moment be kind to yourself. At the moment normality seems a long time in the future but better to not try to rush things or cheat, you will get there.

  • I have tried to halve a tablet today but it just didn't work for me. I ended up taking 100mg today, I feel pretty good though. The only concern is when blood test is done later on this week, and I have been taking a higher dose, it may concern my Dr when I send her the results- I plan on being open and honest with her but its a tricky one if you see where I'm coming from.

    I may try that plan with alternating the meds, but how long does it take for this to show up in the bloods? do you have to take it for many weeks?

    I know, I am quite self critical and its knocked my confidence quite a bit as I just see myself and think, wow, you look terrible lol. If I could see some improvement I would be over the moon but I think these meds needs to be altered as well as maintaining health dietary and exercise habits to achieve that...

    another problem is that I have only a 6 month supply that will run out in 3 months or less. What to do?

  • Although we often say that blood levels stabilise after six weeks, that is still only an approximation.

    I believe that a large proportion of the effect of any change, in terms of blood tests, occurs within the first few days. If you were tested every day you would see a relatively fast change which slows down and eventually stabilises - at least for ordinary dose adjustments.

  • I'm going to alternate to 75 mg, I have been taking this Holland and Barratt medication which contains quite a bit of iodine, zinc and selenium. Should I not take this medication? will it cause too much of a shift? Please let me know, if its dangerous I will not take this medication.

  • by alternate I mean 100mg and 50 the next

  • That's fine. Don't forget you are taking Levo (T4) which is a storage hormone so your body takes what it needs by converting some to T3 do some days it will use up not all you have taken then the other day when you take less you have some left over from the day before. It's probably not as simplistic as that but you can see what I'm saying. There are pill cutters that you can find in pharmacies and they only cost a few pounds

  • Best not to take anything containing iodine unless you have been tested and found deficient in iodine. Too much iodine can spark off thyroid problems esp if you are autoimmune or make them worse.

  • Hi guys, Dr messaged me. She is increasing my dose to 75mcg and then 100 mcg after one month, hope this can help with my goals. I have to call my Dr for my blood test results soon. Thought I would let you know :)

  • Hi guys,

    Quick question-I have been looking at this stop the thyroid madness website. All the people there have lost weight on NDT- my question is- has anyone here lost significant weight using T4 only medication ?? Please let me know

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