How do I safely come off levothyroxine?

Hello folks. I have a question about reducing levothyroxine over time. I had acute thyroiditis caused by a virus in October 2015. I started out with hyperthyroid, was very sick, lost weight (I am a already slight build so became under healthy weight), and had to take beta blockers to calm my high heart rate. Slowly the condition changed to hypothyroidism and I was prescribed 100mcg levothyroxine. My endocrinologist said that I would make full recovery as it had been a virus rather than an autoimmune disease or something more sinister. At the time of diagnosis, I did not opt for a thyroid scan as I felt this was too invasive, and instead had an ultrasound which showed an inflamed thyroid from the virus and no nodules. My question is: how do I come off thyroxine if my thyroid is recovering? No doctor has guided me on how to come off thyroxine. I am slowly reducing my dosage (now alternate days of 25mcg and 50mcg) and have tests every 6 weeks (I asked the doctor for this as I reduce the dosage). My reduction in dosage is self managed rather than by any doctor or endocronologist advice/guidance. Am I doing the right thing?? My last test results on 11 November 2016 were: T4: 14.7; TSH: 3.6; T3: 3.1 (low). Thanks for any advice you can give.

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  • I'm sorry, but I really don't think you can come off levo. On 25/50 mcg, your TSH is 3.6, which is hypo. If you reduce your dose any more, it will go higher. Your FT3 is 3.1, and although you don't give ranges (please, always give ranges for any blood test) that is obviously low - could even be under-range. If you reduce your levo, it will go lower and you will develop symptoms.

    What sort of virus did you have that made you first go hyper and then hypo? I'm sorry, but I think your endo is talking rubbish. That sounds exactly like autoimmune thyroiditis. I've never heard of a virus that can make you hyper. Did he test your antibodies?

    I have to say, I really don't think you're doing the right thing. I think you should put your levo back up, to bring your TSH down again.

    Oh, and, surely, a scan and an ultra-sound are the same thing, aren't they?

  • I *think* that a "scan" in this case might be "Thyroid Scan and Uptake"

    radiologyinfo.org/en/info.c...

    Agreed, though, most often a reference simply to a scan is an ultrasound scan. :-)

  • I meant a thyroid scan with uptake test where radioactive iodine is injected into the thyroid and then scanned. The ultrasound is different. Sorry for the confusion.

  • The diagnosis was "subacute thyroiditis caused by a virus". The symptoms at the time did match the diagnosis - sudden onset, pain in neck on left side, inflamed thyroid on left side, loss of weight, heart racing, no nodules on thyroid, which all came on quickly rather than over time. I have now regained a healthy weight, feel pretty good, only "symptoms" are occasional mouth ulcers and achy knees.

    Test results with ranges were:

    Free T4 14.7 (12.8-20.4)

    TSH 3.6 (0.4-3.8)

    Free T3 3.1 (4.0-6.8)

  • Thyroid symptoms are so numerous and unspecific that they will fit most diagnosis.

  • Kerynz,

    Your TSH 3.6 and low FT3 indicate you are under medicated and you need more not less Levothyroxine so you are not doing the right thing. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

    Did your endo or GP test thyroid antibodies before making a diagnosis of viral thyroiditis? Autoimmune thyroiditis (Hashimoto's) often presents with over range FT4 and/or FT3 in the early days as destroyed thyroid cells dump hormone into the blood stream. Patients normally become hypothyroid eventually.

  • Hi, thanks for the reply. Yes, I was tested for antibodies and it came back negative. Hence the virus diagnosis. I will read the link you provided (thank you) and go back to my doctor equipped with more knowledge. The thing is, if I am feeling ok, which I am, do I have to stay reliant on medication for the rest of my life or can I safely and slowly wean my thyroid off dependence on medication?

  • Not while your FT3 is under-range, you can't. T3 is the active hormone, needed by every single cell in your body to function correctly, provide you with energy and control your body and brain processes. I find it absolutely amazing that you don't have any symptoms with an FT3 that low.

    I'm afraid it is irresponsible to 'diagnose' viral thyroiditis on the basis of one negative antibody test. I imagine he only tested the TPO antibodies, anyway. They could be negative, but your Tg antibodies could be sky high. In any case, antibodies fluctuate, so on negative test cannot completely rule out autoimmune. Plus the fact that some Hashi's people never have elevated antibodies. They are only diagnosed after enough damage has been done to show up on an ultra-sound. It would sound as if you haven't had it long enough for that much damage to be done. And, the initial 'hyper' phase of Hashi's often does come on suddenly with weight loss, etc.

    You may feel ok at the moment, but you cannot possibly go for much longer feeling ok with that incredibly low FT3. Didn't it occur to you that there was a problem there?

  • If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    Also are you sure you have had BOTH types of thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

    NHS rarely checks TPO and almost never checks TG, believing it impossible to have negative TPO and raised TG. But there are a few members on here that have this. They have often struggled to get correct diagnosis

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

    If you can not get GP to do these tests, then like many of us, you can get them done privately

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

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH.

  • It's an interesting situation. If they did indeed test both lots of antibodies, and you had a demonstrable viral illness, like EBV it would be reasonable to expect that your thyroid would recover. But this would show as low TSH and high hormones, where your body feels no need of extra hormone because of the unnecessary supplementation.

    However, being hyper, then hypo is exactly what most people with Hashimotos describe in their history. So I would question the diagnosis and antibody test results first.

    If you feel OK on your current medication levels you can change nothing while investigating. Different individuals report symptoms at different levels. With your results I would be asleep most of the day and ballooning! And certainly you shouldn't leave it like that indefinitely. There are invisible processes being affected, and in the long run, under treatment can cause long term damage.

    There are worse things (like death) than needing a pill each morning. Be glad the pill works so well!

  • Hi Ruthi, is there a possibility that by taking thyroid medication, the thyroid becomes dependent on the synthetic hormones and does not function as well? I know this is a 'chicken and egg' situation - which comes first, the underactive thyroid needing support from thyroxine or the thyroxine doing the work of the thyroid so it stays under active. This is my big question - am I making my thyroid reliant on medication rather than giving it a chance to heal?

  • It doesn't really matter which comes first, it's now that matters. You were hypo, the doctor gave you the appropriate medication and you got better.

    You have only been taking the medication for around a year, so my guess is that when medication was withdrawn a healthy thyroid would just make up the shortfall. But that is not happening. So whatever the cause of the thyroiditis, your gland is damaged.

    Take the pill, FFS! We have so many members here desperate for a diagnosis and treatment, I find it quite frustrating that you are so resistant, whereas in reality you are fortunate to have been diagnosed and treated, and foolhardy in the extreme to stop. There is no such thing as dependence on hormones, other than a dependence on the presence of the hormone in the system. It is not a narcotic, and there are no side effects at therapeutic levels.

    It's simple, uncomplicated and necessary. Without it you will become ill, so what is your beef?

  • very good reply. Just take it and be happy and thankful

  • Actually, Ruthi you gave a very ignorant reply!

    Did you know? The drug is a synthetic form of the thyroid hormone thyroxine, generic Synthroid makes up more than 11% of the top prescribed medications! IT IS OVERPRESCRIBED to treat "hypothyroidism".

    It works by replacing the thyroid hormone which is naturally occurring in the thyroid gland, essentially HALTING NATURAL PRODUCTION.

    CONSEQUENCES of use include:

    Long-term suppression of thyroid stimulating hormone (TSH) which often causes cardiac side-effects and contributes to decreases in bone mineral density (high TSH levels are also well known to contributes to osteoporosis.) May also cause elevated blood glucose levels, heart failure, coma and adrenal insufficiency. TSH directly influences the whole process of iodine trapping and thyroid hormone production so use of synthroid directly affects how the body metabolizes iodine.

    TRY SUPPLEMENTING DIET WITH Natural Foods instead. Any foods containing iodine such as seaweed, kelp, radish, parsley, fish, seafood, eggs, bananas, cranberries, strawberries, himalayan crystal salt. Also, copper, iron, selenium and zinc are essential in the production of thyroid hormones. Exercise a minimum of 20-30 minutes per day — enough to raise the heartbeat.

    I APPLAUD ANYONE WHO SEEKS OUT NATURAL OPTIONS INSTEAD OF JUST BOWING DOWN TO MAINSTREAM MEDICINE ALLOWING THEMSELF TO BE OVERMEDICATED!

    BESIDES: Thyroid hormones are indicated as replacement therapy in the treatment of thyroid hormone deficiency (hypothyroidism) of any etiology, EXCEPT transient hypothyroidism during the recovery phase of subacute thyroiditis), as well as for simple (nonendemic) goiter and chronic lymphocytic (Hashimoto's) thyroiditis.

    SO... she has a very valid reason for wanting to get off the medicine.

  • How very rude!

    We all have a valid reason for wanting to come off medication. But if her thyroid isn't producing enough in response to an elevated TSH then it needs help.

    This is quite an old thread. I wonder how the OP is doing?

  • Thank you Carmen. Your words are exactly how I feel and you have a very balanced view of thyroid medication. And you are knowledgeable. I am now down to 25mcg's of levothyroxine every third day and I am continueing to reduce as my last tests were "normal". I have asked for the actual results/numbers and await them from my doctor who is relatively supportive. I also have a very supportive naturopath. I feel I will be completely off levo by the end of this year 👍Even if my thyroid is slightly underactive, I choose to not medicate myself in the long term and to manage my symptoms (if I have any) with diet, exercise, sleep and common sense.

    Thank you again. Your post has been perfectly timed 🙂

  • Quite agree why be on medication if it can be avoided. I want to come off levothyroxine too and would welcome any natural food or lifestyle that meant I didn't have to take artificial hormones

  • Just adding my pennyworth in...you're crazy to stop taking it! Looks like you're undermedicated if anything! If my TSH was 3.6 I'd be asking for an increase!

  • Wow! At last I found someone with same diagnosis as me! Sub acute thyroiditis.

  • There must be many people suffering it given the hundreds of papers....

    ncbi.nlm.nih.gov/pubmed/?te...

    Hopefully of some use to someone.

    subacute thyroiditis

    sub-acute thyroiditis

    sub acute thyroiditis

  • Yes thank you for info. Just not many posts on here i thought.:)

  • Thank you Clutter. I have always found you to be supportive.

  • Hello Kerynz,

    Can I ask you what were your TSH, FT4 and FT3 when you were prescribed levothyroxine first time?

  • Hi activelazy (cool name).

    I don't have them to hand and will get back to you when I've dug them out of hiding...

  • Hi Kerynz,

    Thank you for liking my name.I am curious to know the answer to my question. I hope you can find it. My situation is not much different from yours and I am not on any medication. But I don't feel as well as you. I will be able to comment only once I know the answer. It might help me too.

    Activelazy

  • Hello Activelazy,

    My first results when I was hyperthyroid were on 15/12/15 and they were:

    Free T4 12.5 (range 12.8-20.4)

    Free T3 2.8 (range 4.0-6.8)

    TSH 0.04 (range 0.4-3.8)

    I felt very sick! I was on beta blockers to begin with and then transferred to levothyroxine when my TSH levels went in the other direction and I became hypothyroid.

    I hope this helps.

  • You asked what my levels were when I was first prescribed levothyroxine on 29/12/15:

    Free T4 4.8 (range 12.8-20.4)

    TSH 19.34 (range 0.4-3.8)

  • Hi Kerynz,

    I know I have not got back to you for 18 days. Sorry. Before I say anything else, how are you? Have you had any change to your situation?

  • Hi. I am feeling ok. My only symptoms of any kind are occasional mouth ulcers (a bit more frequently than before thyroid issues) and cranky knee and shoulder joints. I am pretty good otherwise. I've stayed on 25mcg's for 4 days and 50mcg's for 3 days for now at my doctors recommendation. Nothing else to report.

  • Good to know. I think your doctor is good. Stick with him/ her.my thyroid results after SAT are better than yours but I think my thyroid is still not performing at its original level. I actually want to take some replacement as a trial but my docs won't give me. I wish mine went out of range like yours. So, I think you should concentrate on feeling good as you do rather than rushing to come off it.

    Good luck and keep us posted.

    Happy Valentine's Day. 😘

  • Hi there Kerynz,

    You cannot reduce your Levo and intend to stop taking it... at least not at this point.

    For the sake of your health you must continue to take the Levo and get your TSH well under control. Your TSH (as of November's readings) is too high. TSH should be at one (1) or below and consistently maintained at that level. Your high TSH is no doubt why you are on Levothyroxine.

    It will take a bit of time for your body to return to where it was before thyroiditis. When your TSH returns down to one or below, then you can revisit weaning off Levothyroxine if it is proven warranted.

    Learning more about your condition can be very helpful to you. You can read more here: thyroid.org/thyroiditis/

    Glad to see you here. You've definitely come to the right place.

    Hugs!!

  • Thank you CSmithLadd and everyone else who has replied. The information you have all given is very helpful and I will read the links to upskill myself. I do find it all a bit confusing which is why I asked for help. I've decided to ask my doctor for a visit to my endocronologist again and then follow up with my naturopath - it takes a village of people to care for a thyroid!

    I will take the advice not to reduce my meds any further for now and try to understand what is happening. My 'problem' is that I feel so well! I am very pro-active in my approach to caring for my body - diet, exercise, work/relaxation balance - so questioning my continued use of medication is all part of my proactive approach. I can see I need to understand more. At the same time, I will question continuing to swallow a pill without looking at how I can support my thyroid to heal.

    If any of you have had the experience of reducing or coming off thyroxine completely, I would like to hear from you too. Although you probably won't be on this site any more 🙂 I'm still open to more discussion on this.

  • FYI I have just listened to this very interesting podcast by Chris Kresser.

    kresserinstitute.com/rhr-is...

    "RHR: Is it Possible to Get Off Thyroid Medication?"

    This post was originally published on ChrisKresser.com on September 25, 2014.

  • Hello Kerynz I'm in a similar situation to you, I had sudden onset thyroiditis in August 2016. I was extremely hyperthyroid so was put on carbimazole but after 3 weeks on it I was extremely hypothyroid so I was put on 75mcg levothyroxine. About 4 weeks ago I was beginning to feel my health had plateaued, I was ok but not improving & not my normal self. I forgot to order my prescription over Xmas so instead of running out completely I took 50mcg levothyroxine & almost immediately I felt loads better so I continued on that dose. I slept through the night for the first time in a long time & my mood lifted noticeably. Recently I've began to feel slightly hyper; anxious, hot & unusually energetic! So for the past 4 days I have reduced my dose again to 25mcg & this appears to be going ok. I should point out that at my last blood test end of November the endocrinologist said that although I was still hypo my thyroid function test was normal. Because I have experienced both severe hyper & hypo symptoms I'm very aware of how my body is responding & if I was to feel hypo symptoms coming on I would increase my dose.

  • Thank Hyperjo,

    That's really helpful knowing that trusting how your body feels is sometimes the best indicator of how you should be approaching your 'illness' - I prefer to think of it as my 'healing' right now. I don't feel ill 🙂

    I am going back to my doctor next week to have tests and discuss a plan. If my results are ok, I will reduce my dosage to 25 mcg's daily, with my doctor's support.

    I'd be keen to know how reducing your dose to 25mcg's goes for you if you don't mind sharing. I will share how I go too.

    All the best.

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