# getting off levothyroxine



## spaingirl87 (Nov 8, 2012)

So I am on the lowest dosage of levothyroxine and me and my doctor discussed getting off of it, and she told me just to stop and she would check all levels every 3 mo. I had been on it for almost 2 yrs, and I was wondering what should I expect from getting off it, I have read that expect weight gain, which I am hoping will happen, b/c I am very thin. So for those who have gotten off it, what did you experience and how long did the symptoms last?


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## bigfoot (May 13, 2011)

Most of us that are on any sort of thyroid medication take it for life. Sure, there may be a few exceptions, but still. The fact your doc wants to now take you off of them after two years is a big red flag. Either you were not properly diagnosed in the beginning, or else their understanding of thyroid conditions is not that great.

What reason did the doc give for wanting you to discontinue the meds? Do you have any labs (and ranges) you can share with us? What did they diagnose you with originally?

The typical approach is to be started at a low dose (say 50 mcg of T4), with titration upwards and labs every 6-8 weeks. The goal of many here is a suppressed TSH of 1.0 or less, and a FT3 & FT4 in the upper 50-75% of the ranges.


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## spaingirl87 (Nov 8, 2012)

well the first doc I went to was hesitant about prescribing levothyroxine and I wasnt feeling good, she had suggested I wait a month and get retested but I decided I would take it, bc i wanted something for feeling bad (I was extremely hungry and getting nausea, and we thought I would be hyperthyroid, I already know I have a fast metabolism but it felt out of control).

I then went to the same doc next yr and she kind of blew me off with my concern on continuing to take it. My original TSH was 5.38.

And this yr I decided to see someone else b/c I was experiencing severe anxiety,SOB, palpitatiions, and had lost 5lbs in the past 2 yrs,which is a lot for someone my size, so she did TSH, the antibodies one and t4 free and my TSH came back as 0.62. And I told the new doc about my previous visits and she said since I was on the lowest dosage and the other doc never took any other measurements, that it may have been a mistake, so she said I could stop for 3 mo and said she would retest again and we would do this for a yr and see what happens.


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## joplin1975 (Jul 21, 2011)

Did they only test TSH?


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## spaingirl87 (Nov 8, 2012)

the first doctor only tested TSH, the second doctor only tested TSH,T4free and antibodies. She thought the first doc may have made a mistake by not further testing after the first abnormal TSH.

I really just want to know what to expect from stopping it. I have confidence in my doctor by allowing me to stop taking.


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## Octavia (Aug 1, 2011)

If you truly don't need it, then stopping it shouldn't be all that noticeable for you. If you do need it, then you'll slowly become hypothyroid, begin to feel sluggish, and you may have a variety of hypo symptoms.


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## spaingirl87 (Nov 8, 2012)

thank you for all the concern, ill be sure to update, incase someone else is going through anything similar.


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## eternalflame30 (Mar 6, 2013)

Yes please do keep us updated! Maybe a second opinion? I mean you have been on it for two years. It couldn't hurt to see what another Endo suggests.

Lisa


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