Has anyone (after some years) of taking levothyroxine decided to stop taking this medication?
If yes, how have you been?
Have there been any side effect/negatives of being off the medication, or has it been quite positives?
Maureen
levothyroxine: Has anyone (after some years) of... - Thyroid UK
levothyroxine
Written by
tinkiebab
To view profiles and participate in discussions please or .
Read more about...
30 Replies
•
You do know you can't live without thyroid hormones, don't you?
shawsAdministrator
If you've been diagnosed as hypothyroidism and given levothyroxine, you cannot stop taking thyroid hormones.
Hypothyroidism is a fatal condition if untreated.
If you don't feel well on levothyroxine there are a couple of other options, but you may have to source yourself.
If hypothyroid and you stop taking replacement hormones as you don't feel well on levothyroxine, you will go into a myxedema coma which can be fatal.
Thyroid hormones, T3 in particular, run our whole metabolism from head to toe and heart and brain need the most. We have millions of T3 receptor cells in our body, in order for us to function - I suppose you could refer T3 as the engine.
If we take levothyroxine and don't feel well, you have to look into other thyroid hormone replacements. If in the UK levo is all that is prescribed at present so many source their own thyroid hormones.
Why would anyone just stop taking levothyroxin after many years if they are hypothyroid? Any of the many symptoms of hypothyroidism will emerge and get worse......
Hello Judith,
Levothyroxine is a synthetic version of Thyroxine (Thyroid Hormone T4) which must first be converted into T3 via nutrients being in place to carry out the conversion. It is T3 that is imperative to health, as it is the active form of thyroid hormone that regulates the heart and the metabolism, body temperature, mood, etc. of the body. T3 in the cells ensures all systems will function properly -- if maintained in the proper amounts and not allowed to peak up and down as so many doctors do when they use TSH as a measurement of well-being. It is not.
Those who are hypothyroid and low in nutrients levels including iron and ferritin, vitamin D, selenium, iodine, etc. due to a lack of adequate stomach acid to facilitate absorption of those nutrients, have acquired hypothyroidism due to those deficiencies. Corrected in time, hypothyroidism in that case can be reversed. Many never have to take thyroid hormone and need only to correct their nutritional imbalances so they can produce and convert respective thyroid hormones T4 into T3.
Without correction of the nutrients vital to thyroid hormone conversion, many cannot take Levothyroxine (T4) or T4 even in its natural state (NDT or Natural Desiccated Thyroid Hormone), until nutrient levels are high enough to facilitate that conversion.
If Thyroxine (T4) is taken and nutrients are not in place, it builds up and becomes what is known as Reverse T3 (RT3). Some RT3 is necessary, but when RT3 levels become too high, overall general malady and multiple hypothyroid symptoms are evident.
This is why some must stop taking Thyroxine (T4) products and turn to T3 (Liothyronine) in order to clear the RT3.
Most conventional doctors (including endocrinologists) know little about such issues. They are taught that Thyroxine is the end-all for 90% of patients. It is not. The reason is because without adequate levels of certain nutrients, T4 will not be able to convert into the vital T3 that the cells of a body needs to gain and maintain good health.
I had a severe Reverse T3 issue and reversed it by stopping Levothyroxine and being put on NDT (Natural Desiccated Thyroid) which has both T4 and T3. It didn't work and made me very ill and even more symptomatic. I was then put on straight T3 by itself. It took 3 months for the Reverse T3 to clear. So too did my entire body and mind. In the meantime, I got my nutrient levels optimized when compared to Functional Medical Standards.
Conventional medicine knows very little about real health and how to gain it and maintain it. Their field is based on waiting for disease (dysfunction) to take place at an overt level and then treat it with pharmaceuticals that don't address the underlying root causes of the dysfunction. Most times, in systemic illness, there is a nutritional imbalance at its core. That, in turn, disrupts thyroid full functioning.
I hope this helps you understand how the body can reject Thyroxine (T4) for good reason: it's because the body needs nutrients at optimal levels first before T4 can work properly. It is my personal experience and that of many others that a combination T4/T3 natural product can be very helpful to those who are minimally nutrient deficient. Otherwise, T3 is the way to go until nutrient levels are brought up to minimal levels.
Some will be fortunate and be able to reverse their hypothyroidism by removing the toxins and histamine inducers they have been ingesting. As jenniferarchiba noted, she is one of those people. Most all hypo patients began as she did, but all are routinely put on Levothyroxine with no regard for change in diet, correcting Leaky Gut, IBS, and Crohn's issues (oh yes, they can all be corrected as I'm living proof after having those all my adult life), and telling the patient to steer clear of gluten and unnecessary pharmaceuticals (those ones that inhibit thyroid hormone production and conversion). Believe it or not, there are many!
Hope this helps you and others here to see the big picture when it comes to finding the right care for your individual situation. "Auto-immune" disorder is blamed for so many things that proper nutritional levels and hormonal balance can reverse, no matter what your doctor claims to know. They don't mean to harm us, they are just brainwashed and being used by an industry that is money driven by any means necessary.
Hugs!
An impassioned reply Maureen! Pity your original post appeared to question and promote the abandonment of levothyroxin as though you were not replacing the thyroid hormones with anything else. You will find various people on the site like you , including an administrator, who only takes T3 as they don't get on with T4. I personally after 12 years on levothyroxin, believe I was undermedicated, and diagnosed with fibromyalgia, so now take a T4/T3 combo. I think you will have to distinguish between Hashimoto's, that can be improved ( but I am dubious it can be reversed or cured) with diet changes like gluten free , and raising levels of Vit D, b12, folate, ferritin etc, where sufferers may have no unusual hypothyroid blood results, and primary hypothyroidism proper. This hypothyroidism cannot be reversed, and needs replacement thyroid hormones, along with good Vit/ min levels for good conversion but it is difficult - perhaps because we have other ailments that mask hypothyroid symptoms or use drugs for these problems that interfere with good thyroid health. I believe you have to be proactive about one's own health, learn all you can about good practice, and use sites like this excellent forum and Thyroid Uk ( I assume you know of Dr Lowe's archive) for advice and support.
I agree with you judithdalston - I am alarmed to think that anyone would believe that hypothyroidism can be reversed. I think the Professionals mistake is that they treat us all the same, one pill fits all but we are all different and some more serious than others but depending on other conditions as well and how they convert T4/T3.
Personally, I would die if I did not take my medication. I was in a coma as a baby and since being messed around in my 30's have now also got B12 deficiency, anaemia and vitamin D deficiency too. As well as oedema and sleep apnoea.
Ironically, I do believe that if I had been left alone in my 30's and continued on with my then dose which is the same as now, I would have been ok with T4 only, but now need the combination of T4/T3. I certainly would not have a weight problem as I do now and be borderline diabetic.
I do get upset about the thyroid condition as it is not just a case of taking a couple of little pills as I have been told several times. It is my lifeline.
Sorry for babbling, but it just touches a raw nerve.
Take care 
I believe that hypothyroidism can be reversed given the right conditions...
We will have to agree to disagree Katherine123!
I am fine with that darling :0) Xx
Thanks so much for that explanation!
Can you tell me if oral birth control is one of the pharmaceuticals that inhibit thyroid production.
Hi there Annkapp,
You are so welcome! Happy to be of help to you.
The answer to your question about oral birth control inhibiting thyroid hormone production is, Yes. A definite yes!
The article below is an excellent in its explanation of how and why this occurs:
thyroidpharmacist.com/artic...
Hugs!
Very good and clear.
Ditto! what CSsmithLadd has said my thyroid illness mirrored this...
Cannot think why you would stop if you are feeling well.
I took levothyroxine for a little over a year for a starting tsh of 96. While on it, I went gluten free and started eating healthier and stopped drinking alcohol. I started having massive panic attacks and terrible anxiety. I got to a point where I wasn't even getting 2 hours of sleep a night. The doctor said my tsh was a little low, but nothing serious, and pretty much treated me like a nutjob. I took myself off the levothyroxine and haven't taken it for almost 2 years. In that time I also cut dairy and caffeine. I get my tsh checked from time to time and most of the time it is normal. So if your situation is anything like mine, you could try. I have not died, collapsed, or gone into a coma.
• in reply tojenniferarchiba
I too hate taking levo. It's catch 22. Am taking 150mcg daily mercury pharma. Other brands don't agree with me. My boobs have gone huge! and i have belly can't get rid of. I watch my diet, cannot give up bread however. Take B12, vit D, thyroid supplement, eat brazil nuts, find if i stop taking levo, my mood plummets. Hate to think ive got to take this rest of my life, but suppose no different to those on blood pressure meds or diabetic meds. Just wish my (female) gp was bit more sympathetic (knowledgeable) re condition.
JOLLYDOLLY• in reply to
Regarding your tum Mavericka141, it is unfortunately part of the condition. I have always had a belly even when I was 8.5-9 stone. I think the terminology is a "pot belly" well that was how it was described as a child. Unlikely to get rid of it without surgery. All we do is watch our diet/eating plans.
Regarding sympathy with the professionals, no one is interested or understand unless they have the condition themselves. But are very eager to judge and make silly comments.
I get very anxious and irritable at times. The worst part, I know I am doing it but can't help it.
It can be like living a nightmare at times and I feel like banging my head against a brick wall at the some of the comments I have had.
Take care, you are not on your own my lovely
CSmithLadd• in reply to
Mavericka, bread is no doubt your enemy. I know, I'm sorry... it's that way for me too as it causes bloat in the belly like nothing else. Seriously. Gluten in breads can be like sabotaging your health when your gut isn't in good condition and the immune system mistakes gluten for thyroid antibodies and wages battle in your body. Also, breads contain an anti-thyroid agent: potassium bromate (or bromine). Bromine is added to promote gluten development in dough, thus making it stronger.
doctorcav.com/is-bromine-in...
But here's a good thing to know: eating more protein and less carbs/sugar will keep you from craving that bread. I promise! Buy yourself some gluten free bread -- there are some excellent ones out there on the shelves. There are also baked goods as well (but they're all carbs so behave!). Seriously, I know the feeling.
What helped me was to understand how hard all that stuff is on the body (gluten and other additives). Bottom line is it can be the cause of "Leaky Gut" Syndrome. And that's a real mess. Your health goes down with it as you become nutrient deprived. Smoking also depletes nutrients. Something I just hadn't thought of -- so if you smoke, please stop. If you don't smoke, then things will be easier for you to correct.
It's so imperative to ensure good thyroid health if only we could all keep the gut in good shape. Otherwise, nutrient absorption will be impaired. And it gets worse:
"Did you know that if you’re dealing with symptoms ranging from seasonal allergies to brain fog to skin issues to hormone imbalances that the true source could be your gut? That’s because the gut truly is the gateway to health. It’s where nearly 80% of your immune system lives and where up to 95% of your serotonin (the primary neurotransmitter responsible for your mood) is produced. If your gut is healthy, chances are that you are in good health."
amymyersmd.com/2018/03/9-si...
Please do some reading up on Leaky Gut Syndrome and you'll see what can happen if your diet is not improved. It will help you toss that gluten-filled bread in the trash and decide to choose your health. I used to be a naysayer with such things -- until I had no choice but to remove all additives from my diet. Best thing I ever did. That is, and adding selenium along with other vital nutrients. Most are difficult to get enough of as our soils have been depleted of what used to be adequate nutrient levels. There also are breads that don't contain bromine -- but better to leave the gluten to see if it's contributing to your boating. See, that's a great start!
Selenium helps fight inflammation and with adequate levels can improve your mood as well. Now you see how ensuring absorption is key to maintaining a good gut (and eating healthy foods). Most of our issues are due to nutrient deficiencies -- yes, even thyroid issues, as the thyroid depends on nutrients for optimal conversions of thyroid hormones.
Selenium is so important for conversion of T4/Thyroxine into T3/Liothyronine that I wouldn't leave it up to eating Brazil nuts to ensure I've gotten my daily dose of a most vital nutrient. Brazil nuts vary greatly in size and amount of selenium. If you eat 2-3 a day at most that would be fine. If you take a selenium supplement, the best is organic (plant-based) selenomethionine. The others don't measure up to selenomethionine.
The article below will explain why selenomethionine is best: globalhealingcenter.com/nat...
It won't be long until you are feeling better as long as you are taking Levo and have the nutrients in place to facilitate its conversion. If your doctor treats by using TSH, she needs an update. It doesn't work as we're told it does as it needs facilitators to convert. When we have Leaky Gut and absorption issues, most of T4 never gets converted and the patient doesn't feel well.
So don't give up about this. Educate yourself so you can tell your doctor what is needed for you: like Free T3 and Free T4 tests, along with Reverse T3. Many times hypothyroidism can be reversed, it just depends on how it was acquired and how long it has gone unchecked. Sometimes it is as simple as restoring nutrient levels and regaining overall hormonal balance (and leaving bromine for those who don't know how harmful it is to us).
Truly hope this is helpful to you!
Healing Hugs!
• in reply toCSmithLadd
Thanks for the education! Yes I know, I am really going to try to give up bread. Have tried gluten free bread, not keen! It's just so annoying, what comes with being hypothyroid, e.g fluid retention, and low mood. Do feel better keeping to 150mcg levo tho. Tried serotone (HTP) and didnt really feel any different, but came out in bruises on my legs! Alcohol increases my fluid retention, and scared to take diuretics due to effect on kidney function, and possible interaction with anything else I take! Exercise, I find, is best thing...when Ive got the energy!! Thanks again for helpful advice will defo revise selenium intake. Mavericka. North-west UK.
CSmithLadd• in reply to
You're so welcome, Mavericka. Remember, there are many, many types of gluten-free breads and some are actually very good. They vary greatly. You can also bake your own bread using gluten-free recipes from chefs with family members who cannot handle gluten. Don't think that hypothyroidism only happens to a few of us.
I'm with you on the diuretics, they are given to mask a symptom rather than get to the reason why the body is holding onto fluids for too long. We all hold onto water when drinking alcohol, because alcohol dehydrates us. Anything that dehydrates will force the body to hold onto water until ample water starts coming in to replenish the body.
livestrong.com/article/7043...
The article may have oversimplified, but it gets the point across. No one wants a bloated belly. With hypothyroidism it can be hard to lose it! You might want to try drinking more water (add a grain or two of sea salt). It's the opposite of what a lot of doctors tell us, but has proven to work wonderfully. It certainly did for me. The plethora of diuretics I was given were killing me. No one was testing to find out exactly why my body was blowing up with mega water. It was hypothyroidism. I had to learn what to do to stop the water retention.
The first thing I did was toss the diuretics as they were making me weal and far worse than I was without them. Then I learned that Thyroxine/T4 was building up in my body because I couldn't convert it. I would suggest you get a Reverse T3 (RT3) test and then compare the results to the optimal levels of functional medicine. I have a feeling that may be the root cause of your issues: excess RT3.
Ridding the body of toxins by first not using table salt (it is devoid of minerals that were sold before it was processed into the junk that it is). It has no nutritional value so the body doesn't know what to do with it. Sea salt, on the other hand, has all the natural minerals in it to help your body maintain the delicate balance between salt and water consumption. Pure sea salt is not bad for us, so I put a few grains in every glass of water I drink. This way, I don't push out all the sodium from the body. We need it!
peoplespharmacy.com/2012/11...
And yes! Exercise works wonders for the body.
Kudos!
Hugs!
If you have Hashis, you can have hypo episodes, followed by hyper episodes and "normal" episodes. Do be very careful to monitor your free t4 and free T3 regularly - TSH is not very useful on its own (but most healthy people have a TSH around 1.2). If your thyroid hormones stay low for a long time you'll end up with adrenal problems as well as your body tries to compensate. Improving your diet can help mitigate antibody attacks so may have helped stop your thyroid from being destroyed as quickly, but that doesn't mean that you'll stay well for ever.
Awww! a story with a happy ending jenniferarchiba :0)
I have read most of the replies and although some of them sound dramatic and alarming, they are also very true. The T4 and T3 hormones are vital in our overall well being.
From my own experience, if I stopped taking them I would die, it is as simple as that. I only have a partial non working gland. When I was a baby, (5 weeks old) I was in a coma and subsequently nearly died except for the quick thinking of a health visitor.
Please do not stop taking your medication tinkiebab, you have been prescribed it as your thyroid is not working properly. If you don't act now, your health is very likely to deteriorate gradually or lead on to other things later in life. The TSH test is not a accurate test, it is as everyone says the T4 and T3 tests that need to be done to confirm how your thyroid is or isn't working. At the end of the day, we can live without a thyroid gland but NOT the hormones it produces.
No one is here to worry you, but you did ask the question and we are concerned for you.
Take care
Well kind of I took my dose in half for a couple weeks and I was OK but then I went through a downward spiral of fatigue and anxiety and extreme nausea not to mention an over abundance of adrenaline caused extreme shaking. At that time it only been on thyroid drugs about a year and I was sure they were causing my migraines so I was trying to experiment but I learn my lesson never take it off my Thyroid drugs. It was the worst few months of recovery ever. It would've been faster but my doctor was kind of a dummy and we switch drugs and she only started me on a half a dose of NDT. Which now I realize is enough for a squirrel not a human. The more Thyroid drug I added the better I felt.
Tinkiebab,
I like the majority of the answers. I think your question was not answered directly enough. If you have been on levothyroxine for a long period of time it is very hard (nearly impossible) to get off of it. The reason is the thyroid is one of the organs that partially shut down to accomodate your synthetic. As you go up in dose your thyroid goes down in functionality. I was told (5 years after being on it) that I probably had a cold in my thyroid and he could have gotten me off I had seen him right away, but now I was stuck on it for life.
Foods do affect thyroid function. For me too much sushi (seaweed) is like a high. A lot of iodine in it therefore it is like a mild speed drug. Typically anything with a lot of iodine speeds up the thyroid. It is short lasting though. Nutrition does affect it
Eliot, levo is difficult to come off because your thyroid is incapable of making enough hormone because it is sick, not because you've been taking levo for a long time. If your thyroid were healthy, there would be no problem coming off levo, because they thyroid would pretty quickly come back to working the way it was before your started levo. It does not shut down completely never to work again, that is doctor BS to avoid putting you on it in the first place. But, the reason you need to be put on it in the first place is because your thyroid is incapable of making enough thyroid hormone to keep you well. What that doctor told you is absolute rubbish. That's not how the thyroid works. Levo is not a drug that you have to wean off, it is a life-giving hormone.
Thank you for the update. I have no problem staying on it. I have had several bouts of the wrong dosage. SSRIs permanently affect the thyroid big time. Traditional Chemo affects the thyroid while you are doing it. I know this from personal experience.
Thank you for all the information...but the reason why I asked this question was because (even though I try to avoid the doctors) every now and then you have to.
It was time to have a blood test, so I went a long to see a female doctor to discuss my Thyroid etc, and that I had water retention.
She seemed to give me a lecture on how our body many glands, and has suggested that I may stop taking levo!
I was totally confused because I knew (as you do ) how important the thyroid is to well being/life, so I didn't quite understand why 'she a doctor' made that comments...perhaps I need to change doc's!!! But thank you for all of your help. Maureen
I’m not saying this is how it was, but I wonder if this is a perception issue of your visit. She may have thought she was helping to educate you, but you perceived she was lecturing you. (She may have treated you as if you knew nothing and been unwittingly patronising, but at least she spent some time trying to explain?)
Also perhaps if she thought you were convinced you didn’t need it, then a good way to prove you do, is to see how you feel when you stop taking it. I once requested my dose was lowered. My GP was reluctant, but agreed. 4 weeks later I returned asking to go back to my usual dose 🤣
Not what you're looking for?
You may also like...
levothyroxine
I was diagnosed with underactive thyroid in April, i was initially put on 100mg of levothyroxide...
ALMUS Levothyroxine
Hi there, I need to increase my medication by 25mg having been taking 50mg of Almus Levothyroxine...
Levothyroxine
Does anyone have any idea on how long it takes for thyroid medication to set in ? I've been taking...
Levothyroxine (Levothyroxine Sodium)
Hi. Today I was told by my doctor that I have hypothyroidism and he has given me a prescription...
Bloating levothyroxine
Hi can anyone advise.I'm taking levothyroxine 50mg almus brand.
It has caused severe abdominal...
Levothyroxine and Edema
Teva levothyroxine
Gaviscon/Ranitadine and Levothyroxine
Side Effects of Levothyroxine
Stopped taking Levothyroxine 
