I've stopped taking my meds.. help

Hello....

I would like to start by saying. I'm 29 been under active for 3 years now on levo 200 dose a day.

I stopped my meds 13 days ago.

I'll take you back to 3 years ago. Went to the doctor, because I just wasn't feeling myself. He checked bloods and it came back underactive thyroid. Seemed weird to me as I was the same weight I had always been. 8 stones / 112 pounds. I started taking the first dosage of 50... it was gradually increased to 200...

Since then I feel like my body is shutting down on me. My hair falls out constantly. When I'm in the shower I feel it running down my body... I work out 5 days a week. Intensely in the gym (that's why I always mentioned me weight of 8 stone) my diet is pretty good. Lots of salads and veg and proteins.. however in the space of 2 years. With no changes at all to life still I have put on 20 pounds 😭...: doesn't sound a lot but when your 5"2 and killing yourself in a gym every day. To gain any weight, never mind 20 pounds is insane..:

I also have severe problems getting up in the morning. Sleeping through 5 alarms and being late for work.

I've spoken to 4 different doctors about this who all say... my levels are normal.

I've been waiting 14 weeks for an endro appointment on the NHS to speak to them about alternative meds, before I have a mental break down over it.

I stopped my meds and actually feel better. Haven't lost any weight yet, but the diffence in my hair falling out is unbelievable.: it hardly comes out now. And I wake up with my first alarm.

Has anyone stopped their meds and felt a benefit and been able to lose weight?

59 Replies

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  • Welcome to the forum, Julie88.

    'Normal' is an opinion and thyroid ranges are very broad which means TSH 0.4 and TSH 4.5 are both normal but someone taking Levothyroxine will feel very undermedicated with TSH at the higher end. Please ask your GP receptionist for your most recent thyroid results and ranges and post them in a new question for advice.

    Taking 200mcg Levothyroxine suggests you have little natural thyroid function and do need thyroid replacement. If Levothyroxine doesn't suit you there are other options but you will almost certainly have to buy them yourself and self medicate.

    As the Levothyroxine clears your system you may find your hypothyroid symptoms returning. Most people gain weight when they are undermedicated.

  • Lots and lots of people have stopped levo and felt better. I stopped T3 and felt better. And we start questioning our diagnosis - did I really need to start thyroid hormone replacement in the first place?

    But, it doesn't last. No-one knows why it started, it just does. But, as the TSH rises, and the Frees drop in level, the symptoms start to creep back in... Do you know there are over 300 symptoms of low thyroid hormone? And, you don't have to have them all to qualify. Weight gain is just one of those symptoms, but not everybody has it. Some lose weight, and some stay as they are.

    The unfortunate thing that many find is that symptoms sometimes intensify - and we develop others we didn't have before - when we start levo. For most people, it's just a phase they go through, and things level out as T3 rises. Other people find that they can't tolerate levo at all! And yet others discover that their problem is that they're not converting very well, or they have nutritional deficiencies - no matter how well they eat! But, you will only know these things if you get the right tests done. You need :

    TSH - impossible to avoid!

    FT4 and FT3 - comparing them tells you how well you are converting

    TPO and Tg antibodies - if you have Hashi's - autoimmune thyroiditis - there are things you can do to help yourself

    Vit D/vit B12/folate/ferritin - these all need to be optimal for your body to be able to use thyroid hormone

    First thing to do is ring your doctor's surgery, and ask for print-outs of your last blood test results and - if possible - the results of your very first test when you were diagnosed. The NHS will not do all the tests mentioned above, but you can have them done privately - details on the Thyroid UK main page. But, you need to know.

    However, one thing is certain, by going to the gym so often, you are making yourself more hypo, and that is why you are now putting on weight. Not only does going to the gym use up calories which are needed for conversion, but also uses up your T3, which - as you were taking T4 only - you will have trouble replacing. So, until your FT3 is optimised, you should only do gentle walking, swimming or yoga.

    And, another thing that is certain, if you are hypo, and you don't take your hormone - whichever hormone you chose to take - you are going to end up very sick. Other organs will be affected, and you can develop things like heart disease, liver and kidney problems, dementia, etc. The end point is myxoedema coma and death.

  • This is very good advice from greygoose!! My Mum stopped her Thyroxine for 6 weeks (following her GP's instructions) and just a few days short of her 6 weeks my Mum ended up on a Ventilator for 6 weeks & in a myxoedema coma!!! We where told that it wasn't likely that she was going to survive. She also contracted MRSA & Sepsis Pneumonia, it's amazing that my Mum is still alive. Yes what happened to my Mum is rare, but it can happen. Be careful xx

  • I hope she sued her GP!!!

  • We are in the process of going through the Medical Ombudsmen. Our complaint has been ongoing since last September. Our case is currently out to a "GP Advisor"

  • Oh dear. That must be awful for you.

  • It's not been easy, that's for sure. And still with my Mum being so poorly with it & not knowing what to do for the best. It's very stressful.

  • :(

  • superb post grey goose.helpful to me too.

  • gregoose YOU SAID IT ALL . YOU SAID IT BEST !!!!!!

  • Hi GreyGoose,

    You know already I admire your great knowledge and your way of sharing it but there's something you might find interesting that contradicts your advice on yoga. Yoga uses up a lot of calories. One of my students wears one of those gadgets for measuring this (I'm too old to know what it's called!). She was at the time in my beginners group, so a gentle easy class with plenty of relaxation. She used up an average of 350 calories per session, much more than I'd have guessed.

  • Ah, yes! I had heard that before, but had forgotten it. But, how does it compare with walking and swimming, do you think? Any information on that?

  • Hi Greygoose, I think, but only from how it affects me, that yoga makes a much higher demand on the body than walking. I can walk with my daughters for a couple of hours, reasonably fast, and not feel anything like as tired as after demonstrating yoga poses. I don't know about swimming.

  • Welcome to our forum,

    The first thing all of us have learned on this forum to 'ignore the words 'normal', 'o.k' or 'fine' with regard to hypo blood tests.

    I believe you need a brand new blood test and I'll tell you the ones you need - if GP cannot or lab will not do all of them, you can get them privately from one of our recommended labs.

    Weight gain is the commonest query on this forum. Levothyroxine can cause weight gain, particularly if the patient is not on a dose which is optimum for him/her.

    You shouldn't stop your thyroid hormones as hypothyroidism is a serious illness if untreated/undertreated. So make an appointment a.s.a.p. before you start again and it has to be the earliest possible, fasting (you can drink water) and allow a 24 hour gap between dose and test and take it afterwards. This gives the best results in our favour.

    TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

    Hypothyroidism can be fatal if untreated (takes years) and that's why we get free prescriptions for life for any other diagnosis we may get.

    Levothyroxine is given to us and it is also called T4. It is an inactive hormone and has to convert to T3 (liothyronine) as T3 is the only active hormone required in our T3 receptor cells. The 'energy' for the batteries. Unfortunately if you are exercising without being on an optimum you inadvertently lower the T3 in your body and will feel worse.

    First thing to do is get the tests given above. The GP or lab may not do all of them but you can have pin-prick home tests from one of our recommended labs.

    Put all results on a new post (with the ranges) for comments. Then you can take the next step to recovering your health and feeling much better.

    When we are on an optimum of hormones and feel well we only need annual blood test or if we get symptoms request for one.

    The aim of thyroid hormone replacements is to have TSH 1 or lower. Free T4 and Free T3 towards the upper part of the range. All vitamins/minerals have to be optimal.

    I shall give you some links for information and tick off your symptoms. Thyroid hormones run our whole body and our brain and heart in particular need T3.

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

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

    This is link for private labs and tests can be done by post and pin-prick and the popular ones are Blue Horizon and Medichecks.

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

  • Thanks all...

    It's very strange. I would have thought that being on a dose and apparently being within the ranges..: my symptoms would have gotten better at least...

    I have 0 faith in any of my doctors and even worse faith in the NHS to be honest..

    I've been left to suffer for 3 years now and a 14 plus week wait to see a specialist is nothing short of appalling...

    I took print outs from "stop the thyroid madness" aswell as other research to my doctor. She had no clue what a FT3 test was... after speaking to another 2 GPs she came back in the room and said. We don't provide that service. Need to speak to an endro.. then she lowered my dose.. as my levels were apparently too high and I was hyper.

    Never heard so much rubbish. I was handed a prescription for some orange laxitive drinks too. Cause apparently it's not concerning for them if you can't go to the toilet for a week at a time...

    I think the private route with a nice big bill at the end is really my only option left.

  • Many members 'go it alone' and have recovered their health with advice from other members. The following is a link from a doctor who has the perfect name for a 'blog' and you will see that they are trained only upon the TSH and T4 - nothing else at all, so that's why we have all these difficulties.

    healthunlocked.com/thyroidu...

    and she reiterates that they only get told to view TSH and T4. So they are all untrained nowadays on any clinical symptoms whatsoever and if TSH is somehwere in the range they state we are on sufficient dose. whilst we are suffering.

    i.e. if you want to include all responders at the same time you have to add an @ before their 'names' i.e. Julie88 so they are alerted to your response. When you type @ and the first letter of their name you get a selection that appear and click on the one you want. :)

  • The ranges are too wide, and not representative of the ranges of a healthy persons thyroid. So, it depends on where in the range your results falls. Besides, we should not be compared to healthy people, anyway. Our needs are different. And, in general, we need higher levels than healthy people, to be well. But doctors don't know that.

    PS By 'healthy people', I mean people without thyroid problems.

  • Hi Julie88

    I've just read your post I can really relate to what has happened to you the GPS are just either unsympathetic or very ignorant to what our Hypothyroidism makes us feel like (which in your case and many others dreadful😒)

    My GP took me off my medication this weekend and said I was hyper and over medicated on 50mcg because my heart rate was 105 !! I've felt just awful so I know I need to go straight back on them !!! I'm saving up now to go private I can't stand this madness anymore !!! I wish you well hope you find a decent endo and get back to good health 😀

    Take care Kazbe x

  • Constipation is an immediate flag for being underdosed. With a slowed down body you'll have slowed down transit. If you were overdosed it would be at the fast and runny end of the spectrum ;)

  • Does anyone else also slur their words? Or say things round the wrong way??

    I'm very much concerned that T4 is posioning me...

    Surely if I was "ill" when I was first diagnosed. (Which I wasn't) then taking 3 years worth of replacement... should have made some improvement. Not made me worse??

    I spoke to my doctor about the conversion problem.. she said she has never heard of that... to think we trust these people to help us 😂😂...

  • Before I switched to NDT I could hardly get a sentence out!

    You may not be converting T4 to T3 adequately.

    Bluehorizonmedicals.co.uk have private testing so you will be able to get a much clearer picture.

    Thyroid plus 11,12 & 15 are all good comprehensive tests.

    If you hurry there's 20% off with offer code insideout7 for July.

  • "Surely if I was "ill" when I was first diagnosed. (Which I wasn't) then taking 3 years worth of replacement... should have made some improvement. Not made me worse??"

    Not if you weren't taking enough of it, no. The point most doctors fail to understand with hormones, is that you start low, and increase slowly until the patient feels well - not until the TSH goes slightly below the top of the range. If the TSH range goes up to 5.1, they think you should be well at 5.0. They are so badly educated in thyroid (in the UK, at least) that they don't know that you are hypo with a TSH of 3, and that in many countries, you will be treated when your TSH hits 3.

    Just the fact of taking levo is not going to make you well, it's not an aspirin, or some other drug, it's a hormone. And, with hormones, you need to take enough of them. You don't tell us how much you were taking, nor what your results were like. But, if your doctor was dosing you by the TSH only, then of course you won't get well.

    There are so many things doctors have 'never heard of'. Conversion problems is just one of them. My last doctor had never heard of T4 and T3! Had no idea what they were! They don't know about correct dosing, or symptoms, or alternatives to levo, or how to take thyroid hormones - how did you take your levo? Did you take it on an empty stomach, leaving one hour before eating or drinking anything other than water? Did you doctor tell you to take it that way? I bet she didn't! Did she tell you to have an early morning, fasting test? I bet that if you asked, she would have told you there was no need to fast, and it didn't matter what time you had the blood drawn. Because they just have no knowledge of these things.

    Yes, it's a scandal, and it shouldn't be like that. But it is. And, the only thing we can do is accept that that's the way it is, and learn as much as we can about our disease. Then, we can either try and educate our ignorant doctors - can be done with some of them, but not many - or we treat ourselves. Which is what a lot of us do. And, we do a much better job of it than most endos! lol

    Anyway, I've gone on long enough! But, I just wanted to give you an idea of what you're up against. But, it's not insurmountable. We can do it, if we try. :)

  • I say things round the wrong way too.whatever the training its important to recognise neither GPs nor endocrinologists have enough' time 'to focus on our disease.someone's got to though.In training there is no set limit on what doctors learn.its problem based learning so knowledge should expand exponentially.Although I would love to tail off my meds im sorry to say I think Its an unnecessary risk to life to do so with no replacement.I think grey goose has some of the key about the type of exercise and gentle nature iof what grey goose suggests.I think in your understandable frustration that gym exercise may be switching on another hormone system to be come adverse and inhibiting weight loss.I know sometimes I have been on holiday just wandering round beaches and eating vast cooked breakfasts(so healthy!!)and the weight falls off.me so fast I think I've got cancer(luckily not).other times I have been on diet avidly exercise and blown up like a balloon and gained weight.Ive always thought it was cortisol but mine is low so not overproducing.Leaving your thyroid aside(but I would go to doc and restart a bit of levo whilst seeking another route),you probably need to try to discover the *switch" I am referring to above and follow greygooses thoughts on exercise a bit.best of luck.

  • I do most of the time, my words get mixed up or not quite the right word I wanted to say. I think when I get tired I can get slurred and mixed up conversation, like the brain fog.

  • Yes that's exactly what happens to me. Very very frustrating

  • Julie88 what you call slurring the words is a hypo symptom . Did you run labs recently ? If yes can you please post the results so someone can help you .

  • hi juli88.

    yes,

    i have a big problem a lot of times to get sensiable sentenses out. mostly i get ashamed for the way i try to talk. and my son mostly tells me: mum, what are you talking about?

    sometimes i am alright, mostly i am not.

    9 years on a roller coaster of meds, still trying to get my life back.

  • Perhaps it was the Levo (? Don't know which you took) itself that was the culprit - some people just don't do well on it. As I'm aware you either cannot get prescribed NDT (natural Dessicated Thyroid) in the U.K. - or it's virtually impossible - you can however order it online. If you want to look into it further here's a link worth reading:

    hypothyroidmom.com/study-re...

    And the clinical study results that are irrefutable - a whopping 48.6 % of patients preferred NDT over Levo! I even printed this out for my GP:

    ncbi.nlm.nih.gov/pubmed/235...

    PS: NDT contains both T4 and T3

    PPS: sometimes we have to know when it's time to fire our doctor.. I've done it twice now. We do what we have to to get the care we need!

  • It's beggars believe to me the pure ignorance of GPs on this subject.

    If I have a convertion problem then the 3 years worth of T4 has did absolutely nothing for me.. what it has done is suppressed my thyroid from producing what it could itself.

    Which in turn will have only made my condition worse, Why are they not trained in proper treatments.

    I will read up and print more things off and have another visit to a different doctor. If they refuse to prescribe T3 I will inform them of my intention to purchase and self medicate. Hopefully at the least they can speed up my endro appointment.

    Thank you all for replies.

  • Research has shown that most improve on a combination of T4/T3. Many have also been very disappointed with their Endo appointments and if private a waste of money.

    I was far more unwell on levothyroxine than before I was diagnosed. I had umpteen diagnoses with different options (one an op) over several years which were all unnecessary and paid for. A first aider finally suggested 'thyroid' (he could see my throat) and I phoned from Scotland and requested a blood test form and got the first appointment and within the hour my GP phoned and said come immediately to get a prescription - you have hypothyroidism 'Oh - who gave you the prescription' I said 'I did'.

    My TSH was 100.

    I am well now through Thyroiduk.org.uk and the forum and source my own meds.

  • Anger (or even out-rite rage) can be a great motivator 😤 !! I have channeled mine into researching everything I can get my hands on about thyroid.. and some of it is even sticking! This forum is a great place to come - you will find many just like you Julie! We will continue to tread water if we don't take the reins, and get on with the business of researching everything, and becoming more assertive about our healthcare. A difficult thing to do for many. So I applaud your persnickety-ness(!) 👏👏 as apathy will get us nowhere.

  • It may have made your symptoms worse, but it hasn't made your condition worse. Not the same thing. Your condition will have got worse by itself because you have Hashi's. And the finally outcome of Hashi's is a dead thyroid. Going gluten-free and taking selenium, and having a zero TSH might slow things down, but it's doubtful they would stop the destruction all together.

    Forgot to say, why aren't they trained in proper treatment? Because, if they were, we would get well. And that's not what Big Pharma wants. Big Pharma holds the purse strings. They fund medical schools, and therefore decide what should be taught in them. And, if hypos got well, Big Pharma would lose several small fortunes in the loss of sales of things like antidepressants, PPIs, beta blockers, statins, weight-loss pills, medication for constipation, etc. etc. etc. The list goes on and on. And, we wouldn't need them anymore, if we got well. So, the object of the exercise is to keep us alive - just - but not get rid of all our many symptoms! Medicine is a business, so follow the money. Big Pharma does not produce cures, it produces return customers.

  • I often wonder if this is what the NHS wants - for us to pay for our own meds or for private medical care and am very inclined to resist. Please take care if self-medicating with T3, I know people poo-poo it but cardiac arrest is one of the listed side effects.

  • Do t stop meds!! You'll just feel worse.

    Sounds like your B12 is low.

    Get that tested along with folate,Ferritin and Vit D post results on here as GP will say levels are fine when they are not.

    Also get your thyroid antibodies tested for Hashimotos Thyroditis, Auto Immune and v common.

    Whilst you are waiting for your results go gluten free Casein (cows milk) too if you can manage it. You'll drop that weight I'm guessing

    If you have Hashimotis there's lots you'll need to be doing so report back with results.

  • Feeling better after stopping Levo dose is a well know and recognised phenomenon. No one knows exactly why it happens, but it certainly doesn't last

    Have you got copies of previous thyroid tests? Post here if you do. Also extremely common to have low vitamin D, folate, B12 and/or ferritin. If any or all of these are too low then we struggle to use thyroid hormones in our cells.

    Strongly suggest you start back on at least 50mcg asap, and get private blood tests done

    Do you know if you have Hashimoto's (autoimmune thyroid disease) - diagnosed by high thyroid antibodies

    Hashimoto's affects the gut, leads to low vitamins and often gluten intolerance. Most GP's have little idea about gut or gluten connection.

    Just testing TSH is useless

    Get full Thyroid and vitamin tests- Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice

    £99 DIY finger prick test or option to pay extra for private blood draw

  • Hi sorry I should have said. I have been tested for B12 and within range..

    I have no numbers from my tests. Previously asked for print outs and was told no. I will ask again when I go next. Hopefully next week.

    My doctors is one of they "call on the day for an appointment" and I work 12 miles away from my doctors.

    I do have hashimotes... I take seluim supplements 400mg a day so 2 tablets from hollans and Barrett's. I don't take idodine cause heard that's bad for hash

  • If you live in the UK, it is your legal right to have a copy of your test results, under the 1998 Data Protection Act. If they refuse, they are breaking the law. They are YOUR results. But, most doctors dislike informed patients, because it shows up their ignorance!

  • Get copies of your test results including ranges.

    B12 "in range" is not a result. B12 range is extremely wide. (Typically 210-780) Most/many with Hashimoto's need B12 right at top of range, anywhere below 500 can be too low for you

    Gluten highly likely to be causing you problems.

    Selenium, we should only take 200mcg max daily and best to avoid cheap supplements

    Vitamin D needs to be at least around 70 nmol/L but around 100nmol/L might be better (Uk units)

  • I've found the easiest way to obtain test results (my surgery charges £15 per time) is to sign up for online access to your medical records - test results are entered so you can view them for nothing without the hassle of going to the surgery. Once you have requested online access in writing I believe this has to be given in 14 days and it's well worth writing, my surgery stalled for 3 months, then once I'd written it was sorted.

  • I've been off meds for 13 days. How long would you recommend waiting after I resume meds before doing private tests??

  • Six weeks. :) Sorry if I seem to be hogging this thread, but I just can't resist! :)

  • greygoose KEEP IT GOING . WE NEED MORE VOICES LIKE YOURS TO BE HEARD .

  • That's great thanks.

    I will restart meds this evening before I go to bed and wait 6 weeks to do private test...

    I read somewhere I should have an ultra sound to check how much of my thyroid has been destroyed by hash??

    Would you recommend asking for that at the endo appointment.

    I will ask Gp for a copy of them, they were not impressed when I pulled out printed documents. She said she didn't understand enough about it. To which I replied "your a general practitioner, I do not expect you to know everything, I expect you to help me get an appointment with someone who does" she was less than impressed with my comments. Handed me my prescription and ushered me out the door.

    I understand lots of people on here will have suffered worse symptoms and for a lot longer than 3 years. But I refuse to be left to suffer any longer

  • Your doctor might suggest an ultrasound, but as you already know you have Hashi's, it isn't terribly important to have one.

    You are right not to allow yourself to be left to suffer, because it's going to get worse if you're not correctly treated. I am shocked by your doctors comments. If she knows she doesn't know enough about the subject, then it is her duty to find you someone that does! Only trouble is, endos often know less than GPs! They are, in the main, diabetes specialists, and have no interest in thyroid.

  • Well done you for coming up with such an assertive reply

  • Do you get FT3 tested routinely? Two things stand out to me from what you have told us, taking 200 and going to the gym. 200 sound a 'good' dose to me but I know we are all different but that suggests that you should be feeling better than you do but going to the gym uses up T3 which is fine if you have plenty but debilitating if you haven't enough so hence asking if you get the T3 tested as a possibility is that you are not. converting well. Unfortunately if on T3 in any form you can't tell from your results as the only accurate one is the FT3 result, FT4 can reduce if on some T3. Now I hope your doctors is insisting the labs do test FT3?

    Doctors also don't realise either that we are not fine if vitamins are in range. They need to be optimal and B12 range can be quite wide. You need to be at least 500+ to avoid the possibility of neurological damage. Plus B12 is one of the 4 things that helps the Thyroid work proberly and hrplps conversion. The others being folate, ferritin and Vit D so any testing on those best to post results and ranges as again need to be higher in the range. So always good practice to put as many tests results as you can to give a fuller picture and remember the T3 is essential but many doctors and labs still won't request it labs refuse to do it hence me not assuming it's been done.

  • Thanks..

    I will request the lab results.

    I asked my doctor for T3 and FT3 results and they said they are not allowed to order they tests. It must be an endro that does them..

    I will go back on my meds and order a private test bundle of as many test results as I can get.

    In my head its total neglect of people suffering from this horrible disease and just being left, without proper testing or medication.

    Yes most people I speak to with thyroid problems are on a much lower dose and feeling better.

    It's a catch 22 really. If I work it very hard I can lose a pound every few weeks and at the least mentain my weight. If I miss a few days gym, my weight goes up 2 pounds...

  • It sounds as though levo is not working for you, I had similar problem and went up to 26 stones😱 Over 25 years! I had no way of finding out what was wrong until I discovered this amazing forum, I am now self medicating and feeling great, losing weight rapidly, I can actually read something and understand it first time, hold a conversation without sounding like an idiot, and feel life is worth living! I had to supplement for most vits/minerals and I found taking a good probiotic has really helped my gut-no constipation🙂 Most GPs don't like being told anything and most Endos are so arrogant they dismiss your symptoms without a second thought. Even my family doubted me when I repeated what my GP said-I now always take someone with me, the GP is more careful and my family are beginning to understand the rubbish we have to go through! I wish you well-you have come to the best place in the world for information and support.

  • Hi There, I'm in a similar position at the moment in as much as I was diagnosed Hypothyroid around 12 years ago after putting on an enormous amount of weight for no apparent reason over a period of 3 years. I went up to 18 and a half stone and am 5 feet 2! For the first 3 years that I was taking T4, it seemed to work OK and I lost a good amount of weight, but after 3 to 4 years the weight started to pile back on and I am now back to where I started, despite still being on T4 (100 micrograms). My bloods show very low T3 (falling off the bottom of the accepted official range for the last 2 tests since January). I am finding it impossible to lose weight, even on a fabulously healthy Paleo diet. I would be most interested to find out what 'self-medication' you are taking as I would definitely be interested in taking T3 to see if this might help me with my weight, as well as my aches and pains, fatigue and very poor memory/concentration. I had my bloods done privately recently too and they revealed a chronic Vit D shortage, though B12 and Iron were within the norms. I am now taking a Vit D oil supplement prescribed by my doc. He won't refer me to an Endo or prescribe T3 as he just says my TSH is within the range, despite my T3 being so very low. He's not interested in investigating conversion probs, or anything else. I'd love to hear what you're doing and how it's going. Many thanks.

  • Hi Deborah, I take T3(Triyotex, Spanish from Mexico) only,I started on 75mcg,one capsule,taken in one dose early morning, after 8 weeks increased to 1+1/2 capsules, 12 weeks in I have lost 2 stone and feel good, still have odd blips! I was on 200mcg levo. I stopped levo for two weeks before starting T3. I supplement for all vits/minerals plus support for adrenal fatigue. My tsh is very suppressed and T4 low so have been referred to Endo for first time in over 20years! My T3 is still not optimal so I have room for further improvement😊 My GP wouldn't even discuss my problems which decided me to self medicate,I have been seeing a locum who knows I self medicate and helps as much as he can, which is very little, but at least he talks to me! I have no interest in seeing an Endo but my family still believe in them so I shall make them come with me and we shall see😂 I now record all conversations and no, I don't warn them or tell them how I have perfect recall of what has been said 😏

  • Your GP can order T3 blood tests - all he/she has to do is give a reason why, in your case because your symptoms suggest T3 could be too low. On the form used by my surgery the place to fill this in is on a different page from the TSH etc, your GP may not know to look.

  • Silverfox's good reply to you has given me another thought. I believe, could be wrong and hope someone will correct me in that case, that T3 levels fluctuate and go down after exercises so I'd guess we need to make sure we have done a reasonable amount of exercise before having bloods taken for testing. If we are tested early in the day, before doing much activity T3 is going to be at its highest because it 'builds up' overnight.

  • 200mcg is an OVERDOSE. The full replacement dose of T4 is about 1.7mcg/kg body weight. So I don't think you should be on more than 88mcg T4. If you don't feel well at 88mcg, you probably have nutritional deficiencies and/or you need to check your FT3, and take either T3 or NDT to boost your active thyroid hormone level.

    I weigh about 78kg. But I cannot take my a full replacement dose of T4, I am on T4=75mcg plus T3=10mcg. If I attempt to boost T4, my mind/body falls apart.

  • 200 micrograms is not necessarily an overdose. We all need what we need. There was one extreme case of a patient taking about 3200 micrograms a day - and showing NO signs of over-medication.

    When we take into account the variations between people, especially variable absorption, it can most certainly be necessary for some to have a dose of 200 micrograms.

    Bear in mind, some take their levothyroxine along with foods, drinks, supplements or other medicines which can have a profound impact on dosing.

  • I take 250mcg and i am not well on levo. Certainly not overmedicated.

  • .....I'm healing gut with Nutri Sustain, can order on line, good quality vits, and also take the stomach acid powder which is equally important, lots of luck, helpful to take b12 and D :in spray as it avoids going through the leaky gut, lots of luck xx

  • I took Levo for 2 years but I was always tired and my whole body was in pain sometimes I couldn't even walk from tiredness ..I'm testing NatureTroyd which is bio identical hormone replacement for 5 weeks ..And I feel so much better ..I feel energized I'm waiting next week to have my blood test result and will share it with all of you ....an homeopathic doctor did the conversion and prescribed it for ..does anybody know What's the difference between Levo and NatureTroyde as how works in the body ???

  • Levo is just T4 (thyroid storage hormone). Naturethroid is T1, T2, T3, and T4. Some practitioners think T1 and T2 also have functions, however, T3 (active thyroid hormone) is the Big Cheese as far as restoring optimum metabolism rate.

  • Yes Julie, I was very like you ... finally got referred to a good endo who has prescribed T3 but in order to achieve that I had to stop my meds because my GP kept telling me there was nothing wrong and TSH and T4 results 'fine' and "you don't look hypothyroid. I stopped the Levo to demonstrate to the GP that I still looked fine and was no worse without it to get her to believe me. It did work but by the time I saw the endo my TSH was >95 which he said was coma level, so be very careful.

    I am much better without the Levo but am similar height and weight to you and that extra 20 pounds or so has not gone yet.

    Please be very careful, I'm sure I did myself harm, see if you can get help without doing yourself any harm.

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