I have had been hypothyroid for 12 years and since I started taking levothyroxine, my levels have generally been ok most of the time but since day 1 my legs and all over body started to plump up I have recently started on thyroid s and some of the plumpness has gone but I have a lot of this fat tissue on top of my calf muscle, anyone know will it will go on this thyroid s (think it's like armour) or is there any treatment, I've heard hydrocortisone may work, please help I'm stressing my adrenals out!! Lol

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93 Replies

  • How much Thyroid S are you taking, how long have you been taking it, what dose of Levo were you on before (and are you still taking any Levo)?

    Don't stress - this isn't going to be a quick fix but you're on the right road now... :)

  • I would like to hear more on this...I may have the same thing going on.

  • A link below which you'll find interesting:-

    If doctors failed to detect this young woman's hypothyroidism when she looked like this during her pregnancy giving birth to a baby who had congenital hypo what chance do we have.

  • Shaws, that's what I looked like, I could hardly open my eyes I had been diagnosed a year before my baby was born

  • You were obviously not given sufficient thyroid hormones to make you well but sufficient to keep you hypo with loads of symptoms i.e. keeping you somewhere in range. They are dictators in regard to how much hormones we actually need and I don't think they realise we are all different. It's not up to them to dictate the dose but 'us' when our symptoms aren't relieved. Unfortunately they stick to the TSH as a guide to dose instead of the patients' symptoms.

    That's why so many recover when they suit themselves.

  • Yes I do my own thing from day to day, I take thyroid S it has fillers not sure if it's natural like NDT , do you know?

  • Yes, Joanne it is 'natural thyroid hormones' and quite a few of our members like it.

  • Oh that's good to know thanks

  • Thank you

  • Natural Whole Thyroid is best with no side effects.

  • Do you mean Natural Desiccated Thyroid? xx

  • Yes I am sure it is Natural Desiccated Thyroid. Sadly, from very healthy and carefully cared for, pigs.

    I will find out which one it is. There are two types, one is a fraction stronger than t'other.

    It is only sourced with a prescription, now, in New Zealand and the UK, from a General Practitioner, or Doctor, as some refer to them.

  • Thankyou joygiffard, do you mean Armour and Nature Throid? I do know about those ones but i thought you might have been talking about a different brand, one i hadn't tried x

  • There are several brands of NDT: Thiroid, ThyroidS, Nature-Throid, Wpure, Armour, Erfa.

  • Thankyou Shaws I have heard of these I just thought I was missing something maybe a new brand x

  • where would I get natural whole thyroid? I do not feel well on thyroxine and legs are ballooning off and on along with everything else. Thank you x

  • From your Medical General Practitioner. It has NO side effects. One always hopes to correct the Thyroid, over the following years, which is possible, by natural means. By Diet and Essential Oils.

    You may need to cleanse your body. Try getting some Organic Wheat Grass Powder, Org. Barley Grass Powder and Spirulina.

    The Wheat Grass Powder is weakening the breast cancer in me hugely! Over 10 weeks the cancer markers in the blood have dropped from 25 to 20! The Wheat Grass is wonderful for all physical problems! It cleans the blood and strengthens the immune system. It also feeds all the nutrients that we need. I am vegan, which is best for all illnesses. Plus I take B12.

    God Bless You All.

    The Lord has taken me down this track and told me to do this and it is saving my life. I was given 6 months to live, 3 months ago, if I did not take Chemotherapy. I refused it because God told me it would kill me, second time round.

  • Post it on a question. Many people buy their own. I used to but Im on T3 only now

  • If you are in the UK, doctors can prescribe NDT on a named-patient basis but most wont as the onus is on them if patient becomes unwell for some reason or other and they wont take the risk.

    You'd have to put up a new post asking for a Private Message to be sent of where to source it as no information of prescription medicine can be put on the open forum.

  • Thyroid-s is Natural Dessicated Thyroid

    so is Thiroid





    only real difference is the price and the fillers although according to my lot Thyroid-s is far better than Thiroid

  • I don't have any symptoms or side effects on thyroid S

  • Once my doctor added a little t3 to my levo that whole bloating thing went away almost immediately. It may just take a little tweaking to get the right dose for you. Are you sure you're currently on the correct dose? Getting puffy (face, legs, torso mainly) is sometimes the first sign that I may need to tweak my dose.

  • I have oedema... The swelling and puffiness was the symptom that led to my Hashimito's diagnosis.

    After several visits to the gp, an endicrinologists and a litany of tests, we unearthed that the cause for me was chronically low vitamin d, vitamin b12 and iron which in turn was caused by years of over exercise, poor diet and very poor digestion.

    As a result I now take a liquid iron supplement and various vitamin supplements daily as well as digestive enzymes and prebiotics. Oh... And adrenal support! It has helped enormously although I do still get the puffiness and swelling occasionally when I am over stretched.

    I would recommend you examine your lifestyle and diet: are you physically and emotionally exhausted? Do you eat a balanced diet with enough protein?

    I am on 100mg of Levo a day and had been told by my gp to go to 125 when I presented with myxoedema for the 5th time. He could only recommend that I take 125mg at which point I started to experience symptoms of hyperthyroidism and no change to the oedema so the cause may be something other than your t4 and t3 levels.

    I wish you every success finding a remedy.

  • I had the puffiness, caused by mucin...(. A sort of jelly substance Which ivades the tissues and is part of hypothyroidism) for at least 12 years.... 5 years ago I switched to ndt and this year, i have noticed that the swelling had gone. I can now pick up the skin on the tops of my arms. I showed this to a heart consultant yesterday and he had absolutely no clue what i was talking about. He had obviously never heard of mucin infiltrating tissue and obviously thought i was a complete nutter.

    Once you find the dosage of meds which makes you feel better, stick with it.... The swelling does eventually go.

    Xx g

  • Can I ask what dose you got to to see this result, I take 4 grains and 25mcg T3 also and still got thick arms that I can't pinch xx

  • 3 grains of thiroyd. But its taken 5 years if being on it for the mucin to go... I had given up hoping it ever would. It was a real surprise to see it had gone. Was there last october on my arms, then next time i checked... It had gone!

    G x

  • Iv been on this for about 4 with no sign of it going, Im thinking of trying T3 only see if this helps, Thankyou galathea x

  • Was on t3 for quite a few years, i thought i was fine but photos from then show me with a swollen face... I never realised. 4 months is a vey short time.... Dont chop and change looking for fast results, its never going to happen.....

    I had given up waiting for the swelling to go... I just accepted feeling normal and then. after 5 years on ndt, i suddenly noticed the swelling had gone....


  • I went in and told them and they told me it was muscle, and couldn't get me out of the door fast enough, they haven't got a clue!!!....

  • How long did it take for the mucin to be noticibly going?

  • Before the blood tests for thyroid gland issues were invented, one of the main clinical symptoms that doctors were aware of was 'swelling'. Most modern doctors assume it is 'fat' tell you you're eating too much, go on a diet etc etc which is impossible because it isn't fat:-

    This is a previous link which you'll find interesting:

  • Gosh is that ever a fascinating article, so enlightening. That opens up a whole new research area for me - and a new reason to be angry at my first stupid Endo. I asked just why had I developed a "fat" stomach 65 days after she lowered my dosage - she hadn't a clue and said that weight gain was something we had to accept after a thyroidectomy.

  • I'm not accepting it either

  • If you've had a thyroidectomy I would certainly want T3 added to T4 at the very least.

    I had a gland and the addition of T3 made a world of difference.

    They are uneducated in metabolism and how it works and how the thyroid hormones interconnet and that one is a 'storage' and one a 'direct and active hormone'.

  • Thanks for this 'Tuberose' link shaws. It's excellent!


  • This, a thousand times this. It irks me no end to think my thyroid would have been properly diagnosed 125 years ago instead of today !

    I had big, puffy absurd arms that were suited to someone a 100 pounds heavier.

    The mucin discovery changed everything for me.

    My advice is that in addition to Natural Thyroid Replacement therapy, one also really works on getting adrenals fixed. Plus an overhaul in one's life.

    Relax more, sleep well and be really super kind to yourself.

    Some people say it took them years for the mucin to go away.

    When I got everything on track my absurd flehsy huge arms became slender.

    And I can pinch the skin now!

  • Wow that's amazing, you must be so proud of yourself, I working on the adrenals taking lots of supplements and taking the next best thing to NDT I'm hoping I'm doing the right things, I feel good anyway. How long did it take for your arms to go slender?

  • I'm having the same problems, on 25, then 50, now 75mcg levo and still feel like an overstuffed sausage!

  • I was out up to 250mg and as it was upped the bigger I got, I'm now carrying 1 1/2 stone of musin around

  • 250mg levothyroxine

  • Just FYI Joanne, somebody pointed this out to me the other day:

    If you want to edit a comment you click the down arrow on the far right of the "Reply" line. You will see "edit" as one of the options. Click it and make your changes. Then click "Edit response", the green box.

    I have found that a wonderful feature!

  • Great I will try that thanks

  • Jb, give NDT a try (I take Armour) you will feel so much better really quickly. if you don't like it you can always switch back. Your Levo dose is about the same as 1 1/4 grains of Armour. I was on 125mcgs Levo and I switched to 1 1/4 grains over night, I am now on 1 1/2grains.

    (And Girlscout2, no lectures please!)

  • Your dose might be too low for you as a few doctors who treat more holistically have said that because guidelines are intent on keeping the TSH somewhere in the range we aren't getting sufficient hormones to raise our metabolism and relieve symptoms.

    Usual dose when on NDT used to be between 200 and 400mcg.

  • Do you think my dose is too low too, I take 3 tablets 60mg each of thyroid s. I was on 250mg of levothyroxine, which apparently is really high, still low temps, always freezing too

  • Unfortunately it isn't easy to know whether the dose is optimum, the only way is how the person 'feels' i.e. relief of symptoms and feeling well. Has your coldness improved etc.

    Your dose is 3 grains of ThyroidS roughly equivalent to about 250/300mcg of levo, so it's near your levo dose.

    The doses some people take varies and can be up to around 5 grains. If you've not read about ThyroidS - cursor down the page.

  • Feel really good but still cold, my temp is never above 36.4 and was 35.4 the other day, so quite low really

  • Sometimes our temp doesn't come back to normal but we feel warmer when on optimum meds.

    Maybe if you increase by 1/4 tablet and then, if you still think you need a little more, do the same about 2 weeks later. If at any time you get palps or feel hyper drop back to previous dose.

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • Thanks might try that, maybe after I get my adrenal test results and work on both :-)

  • Where is the article about thyroid S sorry, I cant find it?

  • When I started on levo a couple of years ago, I had swelling of ankles and feet. Also I had numbness on one of my feet. Quite scary. Doctor said it wasn't the levo but did not say what caused it but to move my feet whilst sitting. ( very helpful).

    So I decided to take double doses of cats claw and it worked my feet came back to life a sore on my leg slowly healed and my swelling went down.

    Sad that we have to take our own chances on natural herbs because of NHS not teaching doctors alternatives to drugs. Thanks Big PHARMA!😬

    I have since switched to NDT and have found that I can now take the correct dose of cats claw. I have taken cats claw for years because it helped with the IBS symptoms.

    That's my experience. Hope you get your answer soon.

  • Never heard of Cats Claw so that's interesting - I will investigate further, thanks :)

  • What is cats claw? I think it may help me have terrible I b s

  • Cats claw??? I need to investigate too!!

  • Very interesting. Is there any treatment for reducing the mucin other than optimal thyroid meds?

  • That's what I want to know my arms are not a bloated but still have the thick skin :-(

  • I'm not sure what people mean about this thick skin on the arms but I wonder if a lot of what seems to be fat around my chest at stomach is maybe this mucin stuff. Without knowing my most recent TFT I'd guess my TSH will be on the lower side with my t3 and t4 probably on the upper of the range yet I still can't seem to shift the fat. I've also gone gluten free which has helped with some symptoms I still had but weight control is still ridiculous.

  • I have tried to loose weight for 4 years it doesn't happen!!. Go on you tube and search hypothyroidism type 2 myexadema symptoms it explains what thick fat is

  • I know how you feel. Quite depressing when I see photos of myself slim and lean only a few years ago before all this started. I'll have a look for this info on YouTube shortly, thanks.

  • I have just put it on, I was a size 8 when I got married and got diagnosed with hypothyroid Just before and in this photo I am a size 12, 4 months ago. I even went up a shoe size, who does that a 43?!

  • I have just put photo on new post called my myxadema

  • They only used NDT up until the late 50's then Big Pharma has a windfall since then, what with blood tests (not saying they cannot be useful) plus levothyroxine only.

  • I never had symptoms of underactive thyroid but my dad had it and my bloods were borderline, I only put all this fat on when they put me on Levo!!!

  • I can relate to this, I too been on Levo for 16 years, legs ballooning up. Saw every consultant possible, cardiologist to check heart, ct scan to check kidneys, 2nd opinion endo who has added t3 since April, now seen a vascular who thinks its lipodema. I'm still 90% sure it's thyroid related. Very early menopause at 43 saw a gynae who confirmed. I would just like my legs back 😩 I hear you. It was a battle to get t3 and it's not doing much.... I asked endo about NDT he dissed it straight away

  • I want my legs back, I'm so self concious in a dress, and don't feel at all sexy

  • I can relate to all of you - feel I am in a stranger's body since suffering with thyroid probs - very firm fat all round the middle, thick neck, swollen left anjke, fat knees etc -photos from 4 y ears ago show msize 8/10 am now into size 14 - have stopped socialising as have completely lost confidence

  • Yes me too always been slim 8/10 now a 14 due to legs more than anything else. When I saw my vascular surgeon he saw the state of my legs 🙈 and paid me a kind of compliment by saying I wasn't fat. Get me liposuctioned then!

  • lol - I need a full body liposuction - never used to let myself get over 9 and half stone - now cannot control it and am struggling to stay at 11 and a half - had to give in and completely buy loads of new clothes

  • Get a print-out or have a new blood test. Get the earliest possible and fast (you can drink water) and leave 24 hours between last dose of levo and the test and take it afterwards.

    Also ask for B12, Vit D, iron, ferritin and folate.

  • I'm seeing him next Monday so going to see if I can get a positive answer lipodema or thyroid. Either way been stuck looking fat for last 7/8 years. I hope it's not lipodema looking at scary photos on Google

  • This is a copy on this thread I just posted:

    If doctors failed to detect this young woman's hypothyroidism when she looked like this during her pregnancy giving birth to a baby who had congenital hypo what chance do we have.

  • This is a link for info:

  • I went to my docs about my fat calves she said it was muscle and virtually threw me out, apparently you can Persue and get lips on nhs , I never got past 1st base, treated me like I was stupid

  • It's all down to funding I guess. I work in a GP surgery and we have a patient trying to get funding for hers, it's not happening for her. The thing that gets me is if we were suicidal we would get help the same day/day after. Likewise with varicose veins, NHS don't do no matter what pain you're in. I would just love to see a bit of muscle shape. I exercise I'm not lazy. Just got hideous tight swollen skin

  • Me too look at my photo of behind my knee the skin is that tight around the tendons it looks like I have stitches down the tendon, I could cry sometimes how the doctors just don't do anything, I've asked 6 times to be referred to endo they won't do it, I have paid for my own adrenal kit £107 I'm waiting for the results then I'm gonna go see him again and demand to see an endo.

  • If doctors failed to detect this young woman's hypothyroidism when she looked like this during her pregnancy giving birth to a baby who had congenital hypo what chance do we have.

  • See my response to below.

  • Instead of them being the ones who aren't au fait with symptoms.

  • It depends on your dose of T3 - it may be too low to increase your metabolism.

  • I am on 75 Levo and 20 lio 10 lio am 10 lio pm

  • Yes me too I haven't worn skirts for years

  • Anyone know if we can post photos on here?

  • You can but you'll need to start a new post. Either that, or edit this one, so that it appears with your original post at the top.

    So 250mcg of Levo. That's what you used to take?

    How much Thyroid S are you taking now?

  • I wouldn't even know how to post! How did you do yours on your computer or tablet/phone?

  • Tablet

  • Was on 250 mg levothyroxine tsh 0, free t4- 20, free t3- 4.5-5.5 felt just awful, bloated fat brain fog. Angry emotional, no enthusiasm for anything!!

    He changed me to t3 felt a bit better I was on equivalent dose, but had heart palpitations didn't loose any weight. Tsh went to 5, t4 went to14 , t3 stayed on 5.5

    I sourced some thyroid s off the internet, I've never felt better, some of the bloating gone but still have the thick fat tissue, think it may take years to go it took 12 years to get on!! doc says my results on thyroid s are within range he did tell me but I can't remember, but think my t4 was quite low for me.

    Also bloods revealed I was low in vit d, doc gave me 50,000iu a day for 15 days then 1 a month.

    I have recently done a saliva adrenal kit which measures cortisol and Dhea, hopefully I will have more answers soon have to wait a week for results, I will repost results.

    I am on 180mg thyroid s, 5000iu vit d, vitamin b12 complex, iron(ferritin) tabs, phosphatidyl serine complex( for high cortisol), vit c, biotin (hair loss), multi vitamins, adrenal capsules, and eat licourice for adrenals and bowels, also avoid canola oil and gluten

    Feeling a lot better!!

  • Hi there, I have my adrenal test results back,

    8am 24.15 (7.4-32.56) in range

    11am 14.97 (2.76-11.31) high cortisol out of range

    5pm 9.41 (1.38-7.45) high cortisol out of range

    11pm 3.21 (0.83-3.86) in range

    Dhea (mean) 1.62

    Dhea cortisol ratio 0.088 (0.015-0.150) in range

    Secretory igA 725 top of the range is 410 I think so way over, need to get stool sample done by doctors

    Any ideas of what to take for this high cortisol, need to try and fix or my job will not be safe forever?

  • Hi Joanne,

    Thank you so much for posting this.

    I have to say, even though it's depressing, I can see a vast improvement since you been taking Thyroid s.

    I have exactly the same as you. From behind you could be me!

    I think getting rid of the mucin which swells in our cells can take some time. But I'm talking months not years.

    I managed to reduce mine when I was taking ERFA thyroid. Substantially but I almost had to go to the brink of being hyperthyroid.

    I was offered spironolactone ( don't know if I've spelt that right) by my endo which is a potassium sparing diuretic. I didn't take them though as I was too scared! He did tell me though that this would help with the fluid.

    Interestingly he also mentioned that T3 would help me and I am now on a combination but still not at my final dosage.

    There must be so many of us with this problem, some aware of it and others not.

    Keep doing what your doing. I can see the results and it's fabulous. Don't get disheartened. It's a slow process but maybe try doing some lovely green vegetable juices. They will just help get some really fab vitamins and minerals into the cells.


  • Why didn't you stay on efra thyroid?

  • Hi Joanne,

    You sound as though you're doing all the right things. I'm central hypothyroid so likely more difficult to treat but I am covered in myxoedema. Arms, legs back. It's horrible so I sympathise enormously. It has affected my self esteem dreadfully but I realise that it is a sign of this awful condition and haven't yet lost faith!

    I came off ERFA about 18 months ago because the formula seemed to change. I was having side effects which I didn't care for so decided to go under a wonderful endo on the NHS who put me on a combination of T4 and T3. Central hypo can be very complex and finding the right level of meds is a minefield. A good endocrinologist is also a must for me. He sees me every 4 weeks and has truly been my saviour. I know that I am very lucky to have found him but my GP confessed that he did not know how to treat Central and recommended this Endo.

    So that's my story really.

    I stand there sometimes without my clothes and wonder where my fabulous athletic body disappeared to?! Things will get better for both of us. Losing that awful myxoedema will happen. Look how far you've come. Look how different your body looks already!

    Keep going've made a brilliant start.x

  • aww thanks joesmum, I have been measuring my calves as I hate them and look terrible in a dress, I have lost 1cm from the middle, I'm happy with that ...I have been taking spiratone for 3 weeks my dermatologist said it was good for my skin problems but will help legs was originally given for water retention, I don't see any difference with it really although my shoes that were too tight I now fit in comfortably, I am now taking 4 thyroid s a day each one is 60g I was on 250mg of Levo, been having berry smoothies lots of vitamin c and dark chocolate, as the important thing for me right now is getting cortisol down, feeling better by the day!! I

  • What is central hypothyroid? I've not heard of that, my doc won't even refer me to endo, I have asked 7 times so I don't know what type of hypothyroidism I have. My nan had it and my dad and me and my twin sister both have it. I had to pay for my own adrenal saliva test, I knew something was wrong.

    Did you myexadema completely go or did it start to go, I think it might be the Levo that causes it because it's man made in a lab and not natural as t3and t4 are missing t1 and t2 where as natural thyroid aren't. My doc put me on t3 before I got thyroid s off the internet it gave me palpitations felt. Little better but still had brain fog, my brain fog is going I'm thinking clearer, just my short term memory failing at the minute with the adrenals

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