Hi,
I am 34 years old and was diagnosed with hypothyroidism in 2014 due to work related stress. I left the job many years back. I have since been taking levothyroxine 75mcg every day. Luckily I feel fine and have no other symptoms.
Just wanted to know if my medication could slowly be weaned off completely with the supervision of a medical professional if I improve my diet, exercise, lifestyle and or take natural supplements/medication.
Thanks
It is extremely unlikely that you can come off hypothyroid medication. It is considered a lifelong illness hence the free prescriptions. Do you have hashimoto’s disease? Were your thyroid peroxidase antibodies tested when you were first diagnosed? Autoimmune hypothyroidism, hashimoto’s disease, is the most common cause of hypothyroidism in Europe. It is a progressive disease where the body attacks and destroys the thyroid causing hypothyroidism.
If you are currently well on your dose of levothyroxine trying to reduce the dose will just put your remaining functioning thyroid under strain. In the short term cortisol production can keep metabolism going but you will become progressively more hypothyroid. Google myxoedema for consequences.
If you have recent blood results please post them on a new thread if you are feeling unwell and want further advice.
Thank you for your response.
I’m not sure if I have Hashimotos disease or had my thyroid antibodies tested. Is there a way to find this out?
I have simply been taking the medication and having yearly checkups as instructed by the GP.
Yes - ask your GP (or the receptionist if this is more likely to be productive) - for ALL your actual historic blood results. Then you will see what has actually been tested and the results/lab ranges. They are required by law to give you your results without you giving a reason - but many GPs are strangely resistant, so it's usually easiest to say "for my records".
If you don't ask you don't get. Instead you get fobbed off. The words "in range" and "normal" are highly dangerous: it's not being in range that matters, it's where you are in the relevant range that's important (and lab ranges vary from lab to lab which is wy we always ask for your specific ranges). So if you don't feel tip-top. you owe it to yourself to find out more about your historic testing and results.
And as others have said. once hypo, always hypo. But your body can change over time, so regular (at least annual) testing is important to ensure you are always on the correct level of meds for you x
Ok I have access to my blood test results online. What do I need to check?
Suggest you post your most recent results (and ref ranges) - as a sep post - and then the fabulous people here can interpret them and advise what additional testing you may benefit from and if there's anything you can do better. In particular, GPs are not trained in optimising nutrients, and seldom test them - and this is a natural way of improving your health, alongside your thyroid meds.
Free T4 level in pmol/L(normal is between 10.5-24.5)
June 2020- 19.5
March 2019-19.6
Sept 2017- 22.3
May 2017-23.4
Nov 2016- 18.8
July 2016- 19.5
March 2016- 24
Sept 2015- 18.6
Jan 2015- 18.7
Oct 2014- 21.3
July 2014-14.2
March 2014-14.2
TSH level in mU/L(normal is between 0.27-4.2)
June 2020- 0.98
March 2019-1.04
Sept 2017- 1.93
May 2017- 1.72
Nov 2016- 2.56
July 2016- 1.3
March 2016- 0.44
Sept 2015- 2.18
Jan 2015- 2
October 2014- 2.34
July 2014- 5.2
May 2014- 8.62
March 2014- 6.4
I only feel well with TSH around or under 1. I avoid taking any types of extra drugs like paracetamol for a headache etc. But i take my thyroid meds religiously every day. I would look at vitamen levels and better gut absorption etc before looking at reducing the dose.
Paracetamol is ok to take. Waiting at least 4 hours to take vitamins or milk based products and ppis will stop the absorption of thyroxine and also wait 30 mins to 1 hour to drink coffee or tea and eat
Hi, sorry, trying to show that I try not to take drugs unless I have to. I would take paracetamol if needed but try and not take things unless really needed, I take my levo religiously, I would not consider cutting it out unless someone came up with a magical treatment or I was more suited to T3 (but I am fine on Levo, so why meddle?).
You need to ask for antibodies to be checked- specifically Thyroid peroxidase antibody (TPO)—the most common test for autoimmune thyroid disease and Thyroglobulin antibody (TGAb). 90% of hypothyroidism in industrialized nations is caused by Hashimoto’s.
I have a result for thyroid autoantibodies would this be the same.
Normal range is 0-49
September 2015- 223kU/L
So you have high thyroid antibodies as result of 223 is above top of rage of 49
This confirms autoimmune thyroid disease also called Hashimoto’s
Basically your thyroid is being attacked and destroyed by your own cells. About 90% of all primary hypothyroidism is due to autoimmune thyroid disease
It’s extremely common....there’s almost 2 million people in the UK on levothyroxine
Levothyroxine is required for rest of your life. Like insulin for diabetics
With Hashimoto’s, low vitamin levels and EXTREMELY common. Important to regularly retest vitamin D, folate, ferritin and B12 at least once a year
Many, or most Hashimoto’s patients need to supplement some or all of these to maintain optimal vitamin levels
Suggest you request testing by GP at annual test
Or test privately
I’ve had the above vitamin tests and they were all normal. Although I have not been checked for vitamin d.
As SlowDragon says, Hashimoto’s it is. Please don’t stop taking your medication. This is a great community for any questions you may have.
The test was carried out in 2015. Would it be best to take the test again? Also is there any way of the antibodies coming down, maybe through nutrition or supplements.
No need, I'm afraid. Hashi's doesn't go away - but the level of antibody can vary wildly, so your next reading may be much higher; or may drop. If it drops, it doesn't mean it's "curing" - think of it like a tide going in and out - the level is just always moving around. But it does mean you really really need to stay on thyroid meds x
True! Once you have tested positive for antibodies, you have Hashimoto´s. Antibodies can fluctuate wildly, so measuring them once you´re diagnosed is not very useful IMO. Worst case scenario: if they end up in range at some point (which mine sometimes do, only to increase again), a less knowledgeable doctor might conclude you no longer have Hashimoto´s so no longer need treatment...which of course you do. But the ignorance of doctors when it comes to thyroid disease seems to know no boundaries.
If your thyroid is damaged you can't come off thyroid hormone. If your thyroid hormone levels were low because of stress or depression (lowering TSH stimulation) then maybe you can. Do you know your blood test results from when you were diagnosed and now?
The ultimate test is to just try it and see. You can reduce slowly and will feel pretty awful if you need levothyroxine.
Why would she? Since she has tested positive for Hashimoto´s, she is not likely to be able to come off levo. Stress may have made symptoms worse, but that does not change the fact that treatment is for life. I find it a bit strange to say to a person who has tested positive for thyroid antibodies to try to come off levo. She risks ending up even more hypo than she was to begin with, and then having to start all over again. And there are no guarantees she´d feel as good then as she´s doing now.
Her TSH is lower now than in the beginning which is a good thing, her FT4 levels are high in range, and it would be interesting to see FT3 levels as well. But since she says she is feeling fine, it´s reasonable to assume she is a decent converter.
I have only heard of transient hypothyroidism in the form of post-partum thyroiditis, whereas all other forms of hypo require life-long treatment.
Also, do you have proof that stress will lower TSH secretion, thus causing (temporary) hypothyroidism? Stress raises cortisol levels for sure, and cortisol interferes with thyroid hormone levels, but then there is no damage to the thyroid gland itself (whereas the OP has tested positive for anti-TPO).
I’ve only had T3 level tested once in 2015. The result was 4.5. Normal range is between is 3.1-6.8 pmol/L.
That´s on the low side. However, your TSH was 2 or above at the time (it should ideally be 1 or lower), and your FT4 around 18. Not bad, but since the upper normal limit is 24 there was room for improvement.
Normally, suboptimal FT3 levels result in symptoms such as fatigue, hair loss, weight gain, feeling cold...if you feel fine, it´s likely that your T4 to T3 conversion works properly, or you´d be symptomatic. It would be good, however, to also have FT3 measured.
My hair loss was definitely associated with low ferritin levels when I was first diagnosed.
The only other circumstance I can think of that is associated with transient hypothyroidism is in the event a person is taking lithium, and then stops taking lithium.
If your thyroid is not producing enough hormones then the only way to replace those hormones is by taking them orally.
If the stress triggered autoimmune thyroiditis aka hashimotos then your thyroid will be damaged forever. The thyroid will not repair itself. To find out if you are hypo because of autoimmune thyroiditis you need to have antibodies tested.
I tried to come off levo. I reduced gradually from 100mcg per day to 25 mcg per day. I felt great for 3 months. Then I became very ill.
What’s made you think about this?
Once diagnosed as being hypothyroid there is no way you can stop any replacement i.e. levothyroxine. Even if you feel good.
Our thyroid gland cannot produce hormones any longer and they are needed for our body to function optimally, particularly the heart and our brains. We have millions of T3 receptor cells (T3 converted from T4 (levothyroxine) and we would become very ill if we stopped taking it. In fact some people (if they didn't know they were hypothyroid) could go into a coma.
If you feel okay now, then in your shoes I wouldn't want to upset the apple cart.
Some other people have done the same as you are considering - thought they were fine so came off thyroid hormones -and found they could never get back to feeling well again after they had messed up their hormone levels.
I agree, I think it would be a very bad idea to try to come off levo, especially since the OP is feeling fine on her current treatment!
I agree with humanbean , if you are feeling fine, why would you want to come off Levo. My idiot Dr stopped my Levo on a whim when I was already taking 100mcg. I went back on it 6 weeks later at a lower dose to start with and have tried 125mcg, NDT and now trialling T3 alongside T4 and nothing is working for me. His little paddy has destroyed my life, I’ve gained 2 stone in weight, have had to give up a job I enjoyed and just about everything else I enjoyed doing, now he wants to label me with CFS/Fibromyalgia - don’t do it, you could live to regret it.
That´s horrible! How can any doctor worthy of the name take you off thyroid medication when most forms of hypo require life-long medication?!?
Because he’s an idiot (and lazy). He couldn’t be bothered to find an answer for all the side effects I was having on Levo so he just said “well stop taking it then and have a blood test in six weeks time, you were only just over the TSH limit (that was TSH 5.2 - three months after RAI treatment). I had been on Levo 5 months by that time. This all happened in Jan 2019 and I’m still suffering many hypo symptoms and just recently had a big bust up with him. He reluctantly referred me back to Endo thinking he would agree with his diagnosis of CFS, well bad luck for Dr, Endo agrees with me (low T3). Bearing in mind that I’ve still got the same symptoms as the last time I saw this GP in April 2019 - this chap is so clever, he can diagnose you over the phone without actually seeing you for 15 months. Of course, I hadn’t found this forum then, so now I know differently. You can get the gist by looking at my previous posts ☹️😩
Dr Sarah Myhill can’t get insurance to practice but a total incompetent idiot like that is allowed to completely wreck his patients’ health. He ought to be struck off for what he’s done to you it’s disgraceful. Poor you. One GP started trying to mess about with my dose so I called the endo sec and they advised I asked to be referred back to them, which was my entitlement. She dropped her meddling like a hot brick I went through the most hideous hell to get back to some sort of life again under the endo’s care and I was not letting that fool undo it all. I switched doctors fast, I was glad to get shut of her, the sort of GP that can easily kill you.
I totally agree with you, the problem is, most GPS are the same - not enough training regarding symptoms of both hyper and hypothyroidism. I can’t tell you the problems I had getting a diagnosis of hyper (by another Dr in the same Practice). I went through so many blood tests and even a gastroscopy and all lined up for a urgent colonoscopy, got referred to a different Gastroenterologist who, thankfully, recognised the signs of over active thyroid. I’m afraid I’ve lost faith in most GPS, if the computer says no, then on your way you hypochondriac 😉
I hope you’ve been persuaded to stay on the medication by the comments above. I was left undiagnosed for decades and was in a wretched state before I finally got a diagnosis and was treated. Sadly, once the destruction of the gland starts it’s a one way street and it can’t be reversed it can take a long time before it is killed off completely which is incompatible with life, but you don’t want to go anywhere near that. It is great that Levothyroxine works so well for you. I’d stick with it and just enjoy your life.
You may find this article by Dr Tania Smith helpful in understanding more about the antibodies in autoimmune thyroid disease
thyroidpatients.ca/2020/05/...
Would it be worth seeing a nutritionist / dietician privately along with continuing the medication as doctors are not very helpful when it comes to advising on nutrition and herbal supplements.
I think initially you could look for advice on here about which supplements are important for people with Hashimoto's. You could also consider a private blood test (eg Medichecks) for vitamin levels if your GP won't do this. Many people with Hashimoto's benefit from a gluten free and/or dairy free diet. You can read a lot online and on here about suitable diet. Check out Isabella Wentz, known as the thyroid pharmacist. I saw a highly qualified nutritionist before I was diagnosed with thyroid problems. She was very expensive, not very helpful and didn't notice I had typical hypothyroid symptoms - I had to work that out for myself. Good diet and the right supplements will help your thyroid medication work better but they can't replace it.
No you shouldn't come off them full stop. You only feel well because you on treatment. If you stop your symptoms will return and it could possibly damage your heart. No exercise or lifestyle will change that your thyroid gland is not working. Its a life long condition that requires life long medication. I take 100 mcg of ndt and 25mcg thyroxine for 21 yrs
If you’re feeling fine and have no other symptoms keep on doing what you’re doing. Why would you want to risk feeling rubbish and hypothyroid? Thousands of folk have to take thyroxine so join the club - it’s quite a thing to know you may take meds for the rest of your life. I’m seventy and have been taking thyroxine sine my late twenties but I can still remember the misery of going under active.!
Were you diagnosed with thyroid autoimmunity? That is, did you have/do you now have TPO or TG antibodies? Hashimoto's Autoimmune Thyroiditis is the most common cause of hypothyroidism. If you have/had antibodies at any time, they cause destruction of the thyroid, which means coming off levo would probably not be possible.
If your doc did not test for antibodies ... he/she is not providing proper care.
Hidden posted this earlier in the thread:
I have a result for thyroid autoantibodies would this be the same.
Normal range is 0-49
September 2015- 223kU/L
The doc *should* have tested you for food intolerances and environmental exposures. Although most MDs don't do this. The most common food intolerances are gluten, dairy, soy. You should probably start with an anti-transglutaminase antibody test to see if you are reacting to gluten. Use google to find more info on these (and other) food intolerances. (FYI: my thyroid was destroyed by gluten intolerance. I now know, after her death, that my mother was also intolerant, and it messed up her life too, right up to the time of her death.)
I had a coeliac screen test in 2015 and my test results were normal. Also I eat many gluten products and seem to be fine. Do you think it would still be advisable to go gluten free?
I found it helped. It is supposed to reduce the antibodies although there’s no direct correlation between the antibodies and how you actually feel according to the experts, I still think that getting them reduced has to be a good thing. I think selenium is supposed to control them as well but one has to take it with care. You could try and see if going gluten free makes any difference. If it doesn’t help you can knock it on the head.
Not sure. Was the screening for gliadin antbodies? Was a transglutaminase test done? Have you been checked for other food intolerances? One thing I can suggest is that you consider taking the stool test offered by Dr. Kenny Fine. (Although if you are in the UK, it's probably not available to you.) The chemical markers in stool can be used to determine if gut damage is occurring. Even if you can't get access to that particular testing, you might want to look at EnteroLab.com and IntestinalHealth.org anyway.
BTW are you aware that there is such a thing as Non-Celiac Gluten Sensitivity/Intolerance?
Although there are certainly many other food intolerances. I've run into sooo many people who are sensitive to casein and/or lactose. And one friend who has lupus (also an auto-immune condition) can't eat any vegetable in the nightshade family.
I simply had a coeliac test and nothing else. I eat more or less everything apart from too much junk food and feel fine. I was just curious if going gluten free or dairy free would make any difference and how I could tell if it was making a difference.
The only real way to tell if dietary changes are making a difference, is to track your antibody level. Get a test done before you institute dietary changes. Then make the changes, and check antibodies at 6-12 month intervals.
In my case, I had non-celiac gut destruction. After quitting gluten, it took about 18 months for my antibody score to drift down to near-zero.
Can I come off my meds 
Could I be allergic to Levothyroxine?!
Should I up my Levothyroxine now? 
