Does anyone have any experience of actually coming off Levothyroxine, I hear stories of others and have read books that at least, make it sound feasible, its just I was soo ill before being treated, I am 50 and was like a 90 year old, joint pain, frozen shoulder (both shoulders), back pain, always at the physio for something. Is it a reality to be able to balance your thyroid or T3/T4 with diet, and come off the Synthoid? Currently on 175 mcg Levothyroxine daily ....
Regards Duncan
Gosh, I wouldn’t do that. If your body isn’t producing enough thyroxine at the moment it’s unlikely to do so when you come off your meds.
My thyroid antibodies have reduced massively by going totally gluten free five years ago but I can’t see how even that can make up for not taking 175mcg levo thyroxine a day.
What are your big four - B12, vitamin D, ferritin and folates - like? Come tomorrow think on it what are your other thyroid readings like?
I’m sure someone else will come along with more advice but I wouldn’t come off my levo.
Hi Thank you for your reply, I was not going to stop without a plan and evidence of success, I was told by the Doctor I would have to take them for the rest of my life, I guess I was being too optimistic, reading the Reports on the internet, and books like "the anti inflammatory diet" .
Thank you again,
Regards Duncan
No, it isn't a reality - or very, very rarely. If you were very ill before starting treatment, and you now need 175 mcg levo to make you well, you're hardly going to be able to do without it.
Hypothyroidism isn't just about diet. You need optimal nutrients to be able to use thyroid hormone correctly, but it's doubtful that them being low caused you to be hypo. More like being hypo caused them to be low.
Do you have Hashi's? Have you had your antibodies tested? If you have Hashi's, your thyroid is slowly being destroyed by the immune system. It cannot regenerate, no matter what you eat - or don't eat. And, you cannot live without thyroid hormone.
I know we hear people saying that they've 'cured' their hypothyroidism. But, there could be several reasons for them thinking so. However, I'm pretty sure that sooner or later, they will need to go back to thyroid hormone replacement again.
Thank you for the Reply Greygoose, I was being too optimistic, after reading the web and looking at a number of books based on diet and change of lifestyle, I thought I would ask on the forum on the chances of coming of the Levothyroxine.
I have Hypothyroidism, the Docs told me it is not Graves Disease, but I have hardly any thyroid and have thyroid antibodies, thyroid size confirmed with an ultrasound, been on B12, Folic Acid, had adrenals tested.
this last year is the best I have been for about the last 10 years. so I was as said previously being too optimistic.
Thank you Again
Regards Duncan
If you have hypothyroidism, it wouldn't be Grave's disease. That's hyperthyroidism. What they should be testing for is Hashimoto's Thyroiditis - or Autoimmune Thyroiditis as they call it. Different antibodies. And, it sounds as if you have it! Trouble is, most doctors don't know the difference between Hashi's and Grave's - as incredible as that might sound! And, if your thyroid has been reduced in size, then there's certainly no chance of you ever coming off levo. It won't regrow, no matter what you do. Sorry.
GG, well said as always!
People who successfully "cure" hypothyroidism rarely have primary hypoT, if ever, in my experience. I know there is both secondary and tertiary hypoT, where the gland itself is not damaged, and maybe it's possible to correct underlying issues in those cases, so that the thyroid gland can resume normal function in the end...?
However, an overwhelming majority of hypo patients have Hashimoto's disease and, as GG points out, the gland is no longer able to produce enough hormone and won't regenerate, regardless of dietary and other changes.
People who don't feel well despite high doses of T4 should look for other reasons, such as impaired T4 to T3 conversion, often caused by mineral/vitamin deficiencies, by the inflammation itself (or both). Going off meds is not the answer.
Take it from someone who tried and failed!! A girlfriend managed to successfully come off thyroxine 100mg and every 5 months lowered it then tested 6 weeks later and her bloods we’re all fine. She felt amazing - having taken thyroxine for 25 years I felt I’d like to come off it! Spurred on by her success and a chat with my doc who is a very liberal and said we’ll give it a go but you must keep being retested - down from 100/75 went well bloods ok felt fine 3 months later went down 75/50 also ok then it started - the slowness, depression, aching, brain fog so we retested and of course everything was well and truly out of sync. So immediately went back to 100 again and within about 3/4 weeks all symptoms gone and blood retest perfect - was it a ridiculous exercise - well certainly one good thing came out of it. My heart rate which was always really fast for me 80bpm has now slowed down a lot to 60/65 and has stayed slow. That makes me feel a lot better!
I agree most people can’t get off their thyroid, but just to add this:
my T4 has been elevated recently and the only reason I can think of was because I had been supplementing with tyrosine (core amino acid from which the body makes T4). I’d been trying this because I felt under supplemented but couldn’t get a higher dose.
I’ve been told I have an atrophied thyroid gland (ultrasound) so who knows what’s possible. Rather than drop my dose and then take supplement, I just added supplement.
I’ve since stopped the tyrosine because I don’t want to be prescribed even less at this stage (doctor’s response), and the next test will show whether my T4 has dropped again.
Through all this I did not feel over supplemented at all. I didn’t feel better either, which is a shame! From which you can rightly infer that my symptoms are not fully resolved at my prescribed dose.
If you have an atrophied thyroid gland, you more than likely have Hashi's. In which case, the levels of thyroid hormones can fluctuate. Taking tyrosine on its own is nor likely to increase hormone production from a damaged thyroid. That's like saying adding extra eggs to a cake will make the over work better.
I came off a few years ago for about 8 months, I felt much better but unfortunately I moved to a house with hidden damp and I became really sick so had to go back to 125mcg of thyroxine.
A friend of mine has been doing the auto immune Paleo diet for 3 years, she’s strictly grain free - she’s healthy and is expecting a baby soon. I guess anything is possible but my friend was 100% dedicated and took the right supplements.
Another friend has been doing the AIP diet and all her excess weight has gone, anti bodies are reduced and her meds, she looks amazing and feels much better, her brain fog has disappeared.
Unfortunately I just can’t seem to dedicate myself to a diet 100%, not for long enough anyway.
As other have said, maybe you need to look at your conversion?
I always appeared to convert “ok”. Not bad, bloods always looked “in range”.
But I’ve had all these symptoms (frozen shoulder being the long lasting one) for the last couple of years. In fact, after being on T3 for the last few months and the frozen shoulder stating, I had convinced myself it wasn’t thyroid related and I’d have to go and see about it. Lo and behold, it’s gone. Practically overnight as did a few other joint and tendon pains that had lingered.
So maybe get bloods done (privately maybe to include T3) and start there.
Definitely don’t stop your levo! 😉
Hi, I’m extremely passionate about nutrition and health and have been working on coming off levothyroxine since January this year. I’m 28 and have been on Levo since I was 16, taking 125mcg daily. I decided to do some research into the illness and first had to learn what type of hypo I had. I have used medichecks throughout. I discovered I had Hashimotos and from here learned about autoimmunity, causes triggers, deficiency’s and leaky gut. I had already been taking a daily multivitamin (with iron), additional vitamin D, calcium with magnesium and selenium so my values were normal for these. I then added in a super strength probiotic to help heal my gut (honestly put 80% of my success down to these baby’s!)
Dairy, gluten and soy are key triggers in auto immunity. For me dairy was a huge contributor as I lived off lattes. I now no longer drink cows milk and so far cutting just cows milk out has been enough for me. I will attempted gluten if required.
Thyroid hormones are synthesised from protein, 2 or 3 specific amino acids which I can’t remember, so I decided to look at my own daily intake.. if I wasn’t consuming enough then it wouldn’t be used to produce thyroid hormones other pathways would consume it first.. I used myfitness pal and realised I was hugely under in my daily protein requirements so I take additional shakes daily and add to my porridge in the morning. Personally I use a flavoured hydrolysed beef one from Bulkpowders. Chosen as it is dairy, gluten and soy free.
I am now on 75mcg and my T4, T3 and TSH are all normal. As the cause is probably leaky gut I know it is going to take longer to reduce further but the improvement in just a few months has been incredible. Ideally I would like to be down to 25 by this time next year.
I work alongside my GP who has supported me and I update him of my most recent private bloods so that he can alter my prescriptions.
Best advice I can give is do some research speak to your GP and keep a food diary and see what things in your diet can be changed to help.
Thanks for sharing. Which probiotic are you taking?
Well done for healing your gut, I’m trying to do the same 
Hi, there are so many different pro biotics out there. I did research into specific strains but the main theme was high strength multi strain. They can be upwards of £50 for a months supply though!!! So for me I considered affordability and accessibility (if I had to wait on them being delivered I might not take them for a few days etc). I take ones from Holland and Barrett by bioglan. There called Biotic balance 50 billion super strength. Contains 4 live strains. They cost me £30 a month but are sometimes on offer.
Hope you find ones that work for you.. all the best of luck ☺️
Thank you. I take garden of life and they are £35, I think they are good but not sure my gut is improving that much. I’ll keep going
Il have to look them up. Have you done any exclusion diets along side them? I’ve cut out cows milk and near enough all dairy. I know gluten is considered a big issue but I’ve not felt the need to go down that route yet (plus I love bread lol) but I may need to if I hit a wall.
You could also look at whether or not you eat enough fibre as fibre feeds the probiotic bacteria. I usually eat enough fibre but when I don’t I take a prebiotic powder to help ☺️
And yes defo keep going.. it takes a long time for cells and tissue to regenerate and repair.. ☺️
I have Hashimoto’s and actually successfully came off of it for six years, but am back on it (hopefully, short-term). A friend of mine, also with Hashimoto’s also came off of levothyroxine but will occasionally take NDT, if she feels the need to. If you really did want to try to come off it, I would strongly suggest you do it with the support of an experienced professional such as a kinesiologist or homeopath.
I would like to thank everyone, who has replied to my post, and for your concern, looks like I am sticking with the levothyroxine for the time being, unless I can persuade my thyroid to grow back 
Kind regards Duncan
Hi, none of us can say it's not possible, and I suppose people who have succeeded may no longer look on this forum, so I guess you'd have to seek the answer elsewhere.
I don't think it is possible though, I tried very hard not to start Levothyroxine, believing that my body would surely respond to it's own feedback messages if I didn't interfere with it and if I tried other methods, such as kelp (for iodine) iodine itself, homoeopathy, healthy diet, supplements. None of it worked even though I had a very kind and supportive GP.
However, on a positive note, I am a fully qualified yoga teacher and some thyroid problems do seem to respond to some yoga poses, if these are done correctly and in the right place in the session and held for the right amount of time, as well as all the other yoga (not just poses) being done.
It didn't cure me, but, even though I was technically at coma level (TSH >95) I was still functioning and even teaching the yoga, so perhaps it helps.
Also, there is a gland called the thymus, which in humans atrophies from an early age, this, according to the yogis, does not atrophy if we practise Yoga regularly, and it is linked with remaining youthful and immunity.
Just read the inspiring message from PHN18 - there must be hope.
I went gluten-free a year-and-a-half ago and slowly became sicker and sicker - looking back now we know it's because I needed to cut my thyroid medicine. When I went GF I had been on 75 MCG Synthroid and did have antibodies showing Hashimoto's. It took almost a year for my blood to show I was being over-medicated since going gluten-free. I actually developed what they call iatrogenic hyperthyroidism also called thyrotoxicosis. I slowly started stepping down off medicine and as of January one of this year was taking no thyroid meds. Since March my blood tests all now show in range including antibodies but I still have many days feeling bad. I've had a couple specialist tell me once you're overmedicated like I was it can be 6 to 12 months before you feel better. Just takes that long for the body to heal from the oral medication. So I have been medicine free since January 1 and my numbers are all in range. My symptoms have shifted from more hyper related to now very hypo but I am told that's part of the process. The worst part of this is the fact that my blood test just did not show I was being over-medicated until it was severe. I sincerely cannot describe how horrible it was being that over-medicated! So even though I'm fighting feeling hypo now at least I can get around and get through the day. Good luck to you!
Sounds to me more like you had a Hashi's 'hyper' swing, rather than being over-medicated.
Have you been diagnosed with Hashimoto's thyroiditis? Google it and see if your symptoms compare. I have Hashimoto's with similar symptoms. The last thing I would do is stop taking meds. I do insist on taking brand names because the mixtures vary from month to month. Hope you see specialist endo and mot regular GP.
In January 2017 I was on 100 levo. I have slowly been reducing and my goodness mean slowly. I just did 100 for 6 days and and 87.5 for 1 for at least 6 weeks then took it to 75. Then I would start on 87.5 for a second day etc till I was on 75 for 7 days. Then again 75 for 6 and 67.5 for 1 and after roughly 6 weeks 50 for 1. I am now on 75 for 4 days and 50 for3 days So u can see how slow this is and some reductions were harder than others so took longer. I will continue till on 50 for 7 days and then
reduce from there. I am a yoga and mindfulness teacher and also see an Ayurveda dr. I have a self care routine that I do every morning without fail. So you can see how patient I hav had to be and how long this is taking and I may get to a point where I can't reduce any more.
For What It's Worth, here is Dr. John Lowe's experience with patients who had good results from taking T3. "I would like to say that I’m grateful to Dr Dennis Wilson for advocating and garnering support for clinicians using T3 rather than T4 alone. I must emphasize, though, that based on systematic examination I cannot agree with most of Dr Wilson’s positions that relate to health and thyroidology. I’ve known many hundreds of resistance patients who recovered with high T3 dosages. Yet, I don’t know a single one who has maintained their recovery upon lowering their T3 dosages all or most of the way back down. Maybe some such patients exist. However, Richard Garrison, MD, of Baylor Medical College [Houston, Texas], and I spent a year diligently searching for cases and came up completely empty handed. I can’t identify a single one out of the many hundreds of resistance patients I’ve treated over the years." recoveringwitht3.com/blog/d...
My personal opinion about wanting to stop taking a medication matches my philosophy about software maintenance: "If it ain't broke, don't fix it." Often when tinkering with a computer program that works just fine, we introduce unexpected problems. So it's uaually best to stifle the urge to mess around with stuff that works.
If a medication gives me problems, I'll stop taking it. But if it's working, and I have no unwanted side effects, chances are I will continue taking it.
I went from 50 mcg to 150mcg per day of levothyroxine. I kept going to my nurse and GP who didn't help and just put me on muscle relaxants and painkillers steroids. I just kept going. Winter being the worst.
Then I went and confronted my GP as any movement made me obese and prone to fractures.
The high carb low fat diet and exercising just doesn't help.
So I studied it for years .
And made some changes. I have lost 13kg and have another 23kg to go.
Keeping the weight and muscle balance is what's important as we get older.
Change the diet.
Stay hydrated with lots of water.
Get regular blood tests as it changes all the time e.g. 4 times a year.
Sleep 8 hours as sleep is important.
At my last test my heartbeat was too fast so they reduced dose to
120 mcg .
After these next 3 months I suspect they will reduce my dose further.
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