Has anyone stopped taking this horrible medication? I am very eager to learn how you got on? Any advice would be very much appreciated Thankyou in advance
Judging from the response, maybe I chose too strong a title, if your good on Levo, I'm happy for you, I on the other hand am not! Thankyou for ALL your responses!
Welcome to the forum, Josepie.
Levothyroxine doesn't suit everyone and some people are undoubtedly allergic to it but it is NOT poison. It is a lifesaver for the majority of hypothyroid patients.
A number of members have stopped taking Levothyroxine and replaced it with Liothyronine (T3) or NDT. If you want advice about switching to an alternative thyroid medication it would be helpful if you said how much Levothyroxine you are taking and post your recent thyroid results and ranges (the figures in brackets after results).
Some people find that the brand of levo makes a difference. Look at this page from the Thyroid UK website and go down to the section at the end. You may find that a change of brand is helpful, but stick with that brand once you've found it.
Josepie, welcome to the forum.
Just because levo does not agree with you, does not mean that it is poison. Millions of people do very well on levo, but you won't find them - well, not many of them - on thyroid forums. They're off living their lives. It's just us odd-balls that gather here to console each other, and swop ideas.
Lots of people come off levo, but they replace it with something else. If you are hypo, for whatever reason, you cannot live without thyroid hormone - and that's what levo is, thyroid hormone, T4, not some evil drug. There are other solutions.
Myself, I went from levo only, to T4+T3, to NDT, and finally ended up on T3 only because, it turned out, I cannot tolerate any form of T4. It happens. But that does not mean that T4 is bad, in and of itself.
Unless you have been misdiagnosed - and that is a very rare occurrence! - coming off thyroid hormone replacement, will mean that you will die a long, slow, miserable death, gradually getting worse and worse, and developing other diseases - like heart disease, kidney disease, dementia - cancer, even - until one of them finally kills you off. If, that is, you don't end up in a mental hospital, or get pumped so full of drugs to treat the symptoms - like statins, beta-blockers, PPIs - until one of them kills you off. I would not recommend it.
Do you know why you are hypo? Have you got antibodies? Hashimoto's thyroiditis is the most common cause of hypo in the industrialised world. If you catch that very early, theoretically, it is possible to reverse it. But catching it early is not easy, because doctors don't do the tests. So, maybe we can slow down the damage, but we will still need to take thyroid hormone replacement to compensate for the damage already done to the gland before diagnosis. But don't count on your GP to help you with that, because they know nothing!
Why don't you post any blood test results that you have, so that we can see if we can spot the problem? Or, maybe, the problem is that your doctor isn't doing the right tests, or not understanding the results! The problem often is the doctor treating the disease, rather than the disease itself. 
Er, is this not the tiniest bit hyperbolic? An awful lot of folk come here w undiagnosed uat and most of them are not on the road to a 'slow, miserable death'. The people who have been taken off their levo trials, while it may not be the right thing or the best thing, are probably not going to drop dead because of it either. And are you saying that untreated uat causes cancer?
Yk, I'd just hate to come here w a question about my untreated uat or having been taken off my levo trial and read that.
No, I didn't say it causes cancer, but - given time - who knows. It's possible. Thyroid hormone does give a certain amount of protection, by keeping the body functioning optimally. But, it's all a question of time, isn't it. People who are taken off their trials, will - one assumes - eventually become so bad that they will be put back on their levo. But that isn't the question here.
The OP is asking what would happen if she decided not to take her thyroid hormone replacement anymore. At least, that's the way I understood it. Given time, horrible things will happen. You must know that. Goodness! You must have read this kind of question before, and the answers that were given. And, it wasn't as if I was saying 'you take levo no matter what!' I was telling her that there are alternatives if levo doesn't suit her, but she absolutely needs something if her gland isn't capable of making enough hormone to keep her well. You cannot live without thyroid hormone. But... perhaps you have another solution?
You have had a good experience taking thyroid meds other than levo, and that is a great solution. Being on the right amount of thyroid meds, whether they are ndt, t3, levo or some combo thereof is also a great solution.
Not knowing why this person is on levo or how much they're on, how hypo they are or what this levo is doing to them I think it's too early to fly the flag of lingering death from myoedema coma.
Your reply says "you will die a long, slow, miserable death, gradually getting worse and worse, and developing other diseases - like heart disease, kidney disease, dementia - cancer, even - until one of them finally kills you off." That does imply that that there is a relationship between stopping levo and developing cancer but "who knows, it's possible" is something else entirely.
Unless you are just saying that over a lifetime people have health problems which eventually lead to their deaths, which I guess is just life, memento mori and all that.
I answered the question as it was asked, that's all. I could have asked for more detail; I could have spent a long time humming and hawing over possibilities, I could have answered in a couple of words. I didn't chose to. I answered as I saw fit. It's nothing that hasn't been said before.
I am well aware that in order to get the best out of thyroid hormone replacement, you have to take enough of it. But that wasn't the question. I'm also aware that many other things can hamper the effectiveness of levo. But that wasn't the question, either. I just answered the question as it was asked.
If you don't like my answer, you don't have to read it, it wasn't written for you. You can write your own answer. As you have. And, I promise I will not criticise it, nor make any derogatory remarks. You see things your way, I see things my way. It's called freedom of speech.
Yes, we both belong to this vibrant and cordial forum community where we both write things that other members may be moved to comment on. It isn't just a broadcast; it is a conversation. That is what has taken place here. As far as I'm aware, no one has asked or compelled you to alter what you wrote here, so it looks like free speech lives to fight another day.
I'm very happy with my ridiculously low dose (25 mcg) of Levo which has helped alleviate some of my hypo symptoms and made life more bearable (but now I definitely need an increase as after 7 weeks am feeling a bit hypo again). So as others have said, one man's meat is another man's poison, and for some Levo really gives them their lives back. For the rest, it's another matter and I believe the medical profession has much to answer for, as if they would be more open to using NDT or T3 then people could be switched over to one or the other or combos if Levo did not suit them.
Well last time someone said something like this here there was a big argybargy but if you put 'poison' in the search box you can see literally hundreds of similar posts, so you are far from the only one who feels this way.
As others have suggested it may be that your treatment is poisoning you, not the levo in particular. As a sweeping generalisation the vast majority of us who are ill w uat have been and/or are being prescribed only a fraction of what we require, so it is more than likely you're not taking enough levo to feel well. It could also be that you're not converting it to the required hormone or that your vits and mins are too low, but in any case test results would help.
Hi I think the words I chose were not the best! I do feel like Levo is a a horrible drug though, I had a routine blood test 2 years ago as I was having really bad hot flushes, I am 53yrs old so defo going through menopause, the results came back I had UAT, so I was started on 25mg Levo, within a week I felt terrible, feeling sick all the time, about a month later I had another blood test my levo was put up to 50mg a month later to 75mg until I was on 150mg, the docs said everything was fine then, my hair was falling out, I was tired 24/7 but couldn't sleep, felt sick, depressed, I have gained 2 stone, I don't want to do anything other than lay on the sofa, I cut my Levo back to 50mg myself, I then had another blood test, the doc said it was fine, I just didn't understand how come if I was on 150mg all was ok, yet when I cut it back to 50mg all was ok too! I must stress all I suffered from before I had the blood test was hot flushes, I felt absolutely fine, I was energetic, 2 stone lighter, I used to have to have my hair thinned out at the hairdressers it was so thick, I would be up in the mornings at 6am ready to go and do my job as an English teacher, I did after work homework clubs, some days I didn't get home until after 9pm, I would do my housework, washing etc before I went to bed, my friends all used to laugh at me and say I was 100mph! I stopped taking my Levo only 2 days ago, I want to see if I go back to how I was! Anyway I thankyou very much for your kind reply!
It's possible that you are one of the rare people with a higher TSH naturally, so you were overmedicated, but menopause alters all the hormone balance. Shame your GP didn't try to help with bioidentical HRT instead of finding something you had no symptoms of. The ranges for TSH are so broad (and GPs ignore them a lot of the time anyway) that you could have been "normal" on different levels of meds. However levo (T4) stays in your system for a long time, so you'd still be feeling the effects of 150mcg for several week even after the dose was lowered. Did they do Free T4 and Free T3 as well as TSH?
Hi Thankyou for your kind reply, to be honest I have never been given any results of my blood tests, I have to telephone the docs surgery a week after my blood tests and all I was told was either to up the Levo or I was fine! I have no idea what this TSH, TS3 and TS4 means, I did go to my doc and complain I felt ill when taking the Levo, she just told me to continue taking it and I would be fine!
By the way hun, I am a fellow Geordie x x x
Hmmm, I'm south of the Tyne so a "Durhamite". Always a good idea to ask to see your results - it's your legal right to do so and you'd be surprised how poorly some GPs treat illnesses - they must sleep through a lot of classes at uni.
TSh is thyroid stimulating hormone. It's produced by the pituitary gland to tell the thyroid to produce more T4 and T3 (we'll get there, just hang on). If you have primary hypothyroidism, TSH goes UP as the thyroid fails to produce enough T4 and T3, to beat the thyroid into making more (like flogging poor Black Beauty to go faster up hill). Threfore, many doctors test only TSH as thye reckon that if it's high, the thyroid hormones will be low (hypo) and vice versa (hyper = overactive), If you have secondary or central hypothyroidism it doesn't happen like that - the pituitary doesn't produce enough TSH, either becuase it si damamged or becuase it's not getting signals from the hypothalamus further up the chain, so TSH stays "low or "low normal", but T4 and T3 are also low because the thyroid isn't making enough So testing TSH onl;y is no good for those people.
T4 (aka thyroxine) is the inactive storage thyroid hormone. T3 (aka liothyronine or triiodothyronine) is the active thyroid hormone needed by all your cells. Low T3 is what gives you the symptoms of hyrothyroidism.
If you take thyroid hormones as pills (eg levo), your pituitary can sense that and so it doesn't need to produce much TSH any more, so testing just TSH when you are on medication is not very useful. Soem people seem to be more sensitive in this way than others. You need TSH, free T4 and free t3. Free means that the hormoen is available for use and not locked up (bound) by proteins.
If you have Hashimoto's thyroiditis (very, very common), it is an autoimmune disease which gradually destroys the thyroid, but, as it is killed off, the thyroid can dump hormones into the blood stream - giving you more than you would usually have for a short amount of time, before going back to being even more hypo. The tests for this are TPo and TG antibodies.
Hi again I really appreciate your help, so do I ask my doctor to test T4 & T3 as well as TSH ?
Josepie,
FT3 is rarely tested in primary care unless TSH is suppressed <0.03. Ask your GP to order it but don't be upset if it can't be done.
If your GP can't order FT3 you can order private thyroid tests via thyroiduk.org.uk/tuk/testin...
Been to see my doctor today, she was her usual un helpful self, refused to send me to see an Endo doctor, I asked about the different tests as advised on here, she says all I need is TSH testing again, she told me the people on these websites do not have a clue what they are talking about and to steer clear, I asked to see another doctor for a 2nd opinion, she told me if I felt like that I should just change my doctor, ( I wish it was that easy to get another doctor where I live down here) she told me to go back to the beginning and start taking 25mg of levo again, I have a blood test on Tuesday at the local hospital, I told her I had stopped taking my Levo 4 days ago, she said that was up to me! I give up!!!!!! 
Get private tests and if necessry self-medicate - she's a prat and doesn't care whether you are well or not. If you are in a remote area, it's hard to change GP and the next one might be as bad. And what "these websites" anyway? There are many websites and all are different. This one is part of NHS Choices ... and many on here seem to know more than your GP
Hi again, I have made an appointment to see my GP at 10.40 today, I am going to really push and ask to be referred to an Endocrinologist doctor! Thankyou for taking the time to explain things to me, it was very kind of you to do this!
It's worth emailing louise.roberts@thyroiduk.org.uk for the list of decent doctors and endos, as many endos are really diabetes specialists and don't know much about the thyroid. If Choose & Book works as advertised you should be able to choose the one you want to see (or ask members for a recommendation in your area)
It did nothing for me luckily I found an endo that supported the use of Armour. I could not believe how well I felt on a low dose!
I have to say its doctors who tell us that the majority of people do well on levothyroxine do you believe them? I don't.
I'm with you in this one, I have only started to feel ill when I started to take it!
I thought you could not get Armour in the UK? I have asked to see and Endo doctor but my GP says I don't need to see one and to just continue with the Levo, its not as if I can change my doctor, I have tried but the only other doctor surgery in my area will not take anymore patients! The closest doctors out of my area is miles and miles away, anyway they would still not take me as I do not live in the catchment area, its different down here in the South (where I live) to up North!
A few weeks ago I posted about presciptions of desiccated thyroid in the UK (on the NHS - there are no stats for non-NHS).
Not many get any form of desiccated thyroid - but a small number do. It is not actually banned so much as not supported and the cost is questioned. It takes a strong doctor to stand up and actually prescribe - or an ignorant one whoh doesn't understand the issues.
josepie the threads that need teasing apart are: are you on enough meds to restore your health, do you need to look at supportive nutrition to allow the meds to work (so that is a matter of finding out what's going wrong) or do these meds just not work for you? But you won't know if levo is wrong for you if you're on the wrong dose.
A good way to start is to get copies of your test results from the surgery. Recent ones should be free and you are entitled to them. You needn't worry about old records for now, just your most recent tests. If they're not informative (if they're only testing tsh for instance) then you might need to delve back further or have a new set of tests done.
How long were you on the 150 levo? It can take months for some symptoms to resolve.
We all see this time and time again here, that people feel ill on their meds because they're on a tiny dose relative to what it would take to make you feel better. It's like taking a quarter of an aspirin and saying it gave you a headache.
So what I think is the easiest path is to find out what dose suits, get it from your gp (that can take some time) and try it for a while and see if you feel better. If not, then you go down the path of finding out what would suit you better. But what you're suffering from right now are hypo symptoms, and if you were on 150 and are now on 50 you're likely to be very undermedicated.
If you were on 150 levo for months and felt no better, then it is time to find out what's going on and what would suit.
Thankyou to everyone on here for all your advice, I am now hunting for a new doctor, my husband is looking into me seeing an Endo doctor privately, I no it is early days but I have not taken my Levo for 5 days now, I have more energy, I am sleeping better and already I have lost 3lbs,I'm sure you will all tell me this change will not last, however until I get to see a doctor who can help me,I'm not taking it! Thanks again folks, you have all been a huge help to me, especially angelofthenorth
Well, I've been taking Levothyroxine for 18 years now, I started on 25 mls, then 50 then 100 mils for many years, though I moved up to 125 mls just over a year ago. My doctor dropped that back to 100 mls after a month, but after further tests moved me back to 125 mls. Surely all treatments for an under active thyroid involve some thyroid replacement? Trying to scare people who may have just started taking a drug is not helpful?
If you meant to ask if anyone knew an alternative to that drug, because you are not reacting well to it, then perhaps you could ask your doctor if he or she knows of any alternatives you could try. If your doctor doesn't have sufficient knowledge then ask if you can be directed to a special doctor. If your doctor doesn't know of any then Thyroid UK may be able to help. thyroiduk.org.uk/tuk/diagno...
My TSH was 390 when diagnosed 19 yes ago and I have always used levo. I had a spell on t3 t4 combo in the early days but since gutting gluten and changing diet, 100mg levo has been fine
Hi Yeah I think Levothyroxine is a horrible drug and I do feel as if I was being poisioned, I am in the process of trying to change my doctor, so fingers crossed I may be able to try NDT, not holding my breath though, I think most Doctors just put you on Levo and thats it your expected to just get on with it, I have to say your really quite brave referring to Levo as "Poison" like I did, some people on here take exception to that term! Its was my personal way to describe how it made me feel, however for some on here you would think I had caused someone physical harm! Yhankyou "reallyfedup123" for taking the time to share your experiences of the drug "POISON" Lol
Sorry reallyfedup123, but I fundamentally disagree with you that it is easy.
You have issues of finding out about what it is, of sourcing (now and in future), of funding, of selection of product, of dosing, of managing future relationships with medics (e.g. GPs, and hospital doctors). Add in "My desiccated thyroid isn't the same as it used to be." and "Oh dear - been out of stock for weeks"
Anything but easy. Especially if you are new to it all.
Levothyroxine worry 
Levothyroxine
Levothyroxine
Food Poisoning and taking Thyroxine 
