How to come off T3: Hi all I realise this is... - Thyroid UK

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How to come off T3

Hi all

I realise this is probably very individual, but is there any advice on tapering off T3?

I posted a few weeks ago that I'm struggling, as it has brought on my withdrawal symptoms from amitriptyline very strongly. Because of the change in my metabolism, I imagine. The whole amitriptyline saga is a VERY long story. But the long and short of it is that i can't bear this any longer (it is getting worse and worse), so want to come off T3 for now.

I am self medicating and am on no other thyroid meds. And don't plan to replace.

I am currently on 43.75mcg a day (reduced from 50mcg 4 days ago, but it has made no difference.) It's such a shame as my hypo symptoms have pretty well vanished.

So, to recap, i just want to know how to taper? i take it i can't just stop.

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I am in the process of tapering. I have tried it once before, over a period of several months. I felt fine to begin with, but after about a month totally off T3 I really started to struggle and had to reintroduce it.

This time, I am going much more slowly, reducing my total daily dose by 5mcg at a time, then staying on this reduced dose for a few months before reducing again. I know that sounds like a drawn out process, and perhaps not what you wanted to hear, but it's working for me. You are on a much higher dose than I was though - and I have increased my levothyroxine to offset some of the reduction. I suspect it will be hard work for you if you don't take any T4 at all.

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Thanks for getting back to me. So what dose were you on the first time? And what rate did you taper at? I'm perfectly happy to go back on - but i just need to be off it asap for now x

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The maximum dose I was on was 35mcg along with 100mcg of T4. I am now taking 150mcg T4 and am down to 5mcg T3 - I have also experimented with different brands of Levo to find the one which suits me best. It was the huge improvement I felt when I found the best brand of Levo for me, which prompted me to think I might be able to do without the additional T3.

What was your reason for going T3 only?

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Thank you!

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Just seen your question. My reason for going T3 only is that a few people suggested to me my blood test results indicate Thyroid Hormone Resistance.

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It's actually easier. In one day, I just started taking my old dose of T4 and I was fine

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Thanks.

I don't take T4, though. i never have.

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I would think that since the half life of T3 is hours you could just stop...it would be like a caffeine cliff nose dive in energy but you could do it...

I take T3 only and missing a dose is like that. Good luck.

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Interesting! Thank you. I really do need to get off asap, but i don't want to do more damage!

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The half-life in the blood of T3 is 24 hours. But the T3 that gets into the cells stays there for about three days.

As T3 is a hormone, not a drug, you don't get withdrawal symptoms as such. But, whatever way you use to stop it, you're going to feel pretty ghastly without it. How long are you planning to stay with no thyroid hormone replacement?

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Just until the withdrawal symptoms from amitriptyline go. So, i don't know, is the short answer!

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I'm just wondering how you will know that the withdrawal symptoms from amitriptyline are gone when you will have the hypo symptoms on top to contend with. But, I presume you know what you're doing. :)

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Oh, I sooooo know what i'm doing, alas. These withdrawal symptoms are very distinctive and i know all about it when i have them. They are totally different from hypo symptoms. It turns out i'm supersensitive to amitriptyline and had a nightmare coming off a very low dose. Took the last one 16 months ago, and suffered a lot last year. Finally got a bit better near the end of the year, but still got a day or so of withdrawal every week or 10 days or so.

Since starting T3 a few months ago, I'm in full withdrawal again (as i said i imagine it's the change in metabolism). I was ok at first, but it kicked in after about 3 weeks.

Anyway, I could write a novel on it, but i definitely know what I'm doing!

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That's OK, then. :)

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Horrendous, but ok!

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Can you reduce weekly and add the equivalent of T4? At roughly 4:1 ratio?

I’m not sure I have any idea what I’m talking about, just thinking out loud.

10mcg T3 = 40mcg T4

Or can you not or no longer need to be on any thyroid medication. Sorry if I’m missing the point here 😬

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Not your fault - it's a long story! But, yes i just want to come off T3 for a whole. And not replace with T4 or anything. Maybe start again in a bit.

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Hi Rachel, just wanted to add that if you were on Amitryptaline for Depression/Anxiety then T3 helps reduce these symptoms. Obviously we don't know your full story but it might be worth staying on it whilst you wean off the Amitryptaline to save going completely cold Turkey. It could create a worse situation as clearly you were on T3 for a reason. But as Greygoose said T3 is out your system within 24-48 hours. Good luck with it all.

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Hi Clara

I was on it for nerve pain. It didn't work but to add insult to injury i couldn't get off it.

After 5 awful years i finally took the last tiny dose 16 months ago. I had a dreadful spring and summer last year but was much better by the end of the year. But still got the odd day of withdrawal (maybe once a week or so.)

T3 has toppled me into full blown withdrawal again.

There aren't many of us but it actuially has a name...something like discontuation syndrome and it's horrendous. :(

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You poor thing. You have really been through the mill, haven't you. You might like to try CBD Hemp Oil for your nerve pain. Don't think I can recommend the brand on here but PM me if you'd like it. If you definitely need to be on Thyroid Meds then I wouldn't have too long a break before you go back on it again, assuming you want to. As we said, T3 is out of your system very quickly as opposed to T4 which can take weeks. Don't know your history but maybe NDT would be a better option for you. Take care.

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Yup - it's a nightmare. I'm responding so well to thyroid meds. Meanwhile, I've worked out how to manage my nerve pain (i've had it 6 years now) - but thanks so much. I use CBD oil anyway, just generally. I'm a nutritionist, not that that helps much!

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Rachel1958 May I ask what dose ami you were on? Thanks. Sorry u reacted badly:(

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Goodness, I can't remember. I finally took 2 years to taper off 5mg (I know!). But i think i was on 75mg max (from memory).

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Thank you.

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My first thought is to say that you need to be working with an MD, but unfortunately, so many MD's simply do not understand hypothyroidism. ... Self medicating can be a good thing.... or not. ... I didn't know what amitriptyline is, but it apparently didn't agree with you. ... I did look it up, and my thought is that if you could get your thyroid meds right, you might not need the antidepressant. ... Going off thyroid meds completely, if you are actually hypothyroid, is NOT a good idea! ... I take T3 and as long as I am on brand name Cytomel, I feel like "a real human being". (On generics, I feel like I'm taking nothing.)

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Thank you!

It wasn't for depression, it was for nerve pain. And didn't work!

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I don't know what your nerve pain is for, but sometime, chiropractic can work wonders for pains of all kinds.

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Oh, it's from having my little toe amputated. Or part of it, anyway. More or less sorted now. It was 8 years ago!

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And yes my GP should be supervising this. But they couldn't cope with my drug sensitivity and say i am not hypothyroid, because of my TSH. Usual story!!

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Yes, usual story. ... Something that you might do, to have information at hand, to prove the blood tests don't always tell the whole story, is order a book from Amazon.com, titled: "Hypothyroidism Type 2, The Epidemic" by Dr. Mark Starr. ... Very simply, he talks about the fact that "the blood test" only show how much thyroid hormone is in the blood, not how much is being taken up by the thyroid receptor sites and taken into the cells, where they have to reach, to actually work.

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Thank you. I'm in touch with Paul Robinson who is great on all things thyroid. And yes, i understand the blood test thingie.

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Rachel1958, In principle you can come off T3 all in one go. Unlike a drug, there isn't withdrawal as such. As others have said, you will feel terrible either way.

I've had to do this a few time for radioactive iodine treatment. I found about day 3 was when the worst of it kicked in, my guess is that was when most of it had washed out of my system. But I have no thyroid, so was expecting to feel terrible.

Stopping quickly is probably a shock to your metabolism, and this is one of those things doctors very much underplay, but who knows how much it hurts us overall.

I'd say that the slower you can do it the better, but there is probably no good argument for any particular length of time. If you desperately need to be off it, just stop right now. If you can afford a couple of weeks or months then titrate down more slowly over that time.

The benefit of titrating slowly is you might find there is a dose low enough that it doesn't flare up your other symptoms. From there you could try to increase super slow back to the dose you feel well on.

And it would be remiss of me not to give the standard advice: Make sure vitamins like ferritin, folate, vit D and vit B12 are optimal. Consider looking into adrenal fatigue, and make sure you are eating well, sleeping well, and getting plenty of rest. Consider meditation if you don't already!

Also, it's possible Levothyroxine might suit you better, at least in the short term. It seems to give less of a shock to the metabolism.

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Thank you!

Ferritin, Vit D, folate and B12 all good (i supplement them).

Have sent a Medichecks cortisol test off today!

I'm trying to taper, yes, to find a "sweet spot".

Feeling better today but it comes in waves. We shall see!

Thanks so much xx

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You're very welcome, and sounds good!

The only thing I'd add is that supplementing is still not a guarantee of good levels. It's still ideals to retest every 6 months to a year to make sure levels are good or are raising as planned. If not you might need a higher dose or more bioavailable form.

When hypothyroid vitamins can be fiendishly tricky to raise, because the reason we get deficiencies is the body not absorbing properly from food. SeasideSusie gives great advice on vitamins throughout the forum if you want to read more.

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Oh yes i meant i am testing them too.

I'm a nutritionist, so that helps.

Thanks again! xx

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I didn't taper at all. I just started taking the meds I was taking before. Your body uses up the T3 very quickly. That's why they recommend time release so you don't use it all up at once and crash.

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I wasn't on meds before :)

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FWIW, here is an article on various treatments for nerve pain. I have neuropathy (experience this as intense itching all over, rather than pain, per se) from having gone through chemotherapy. I am on 100 mg of gabapentin (an anticonvulsant) 3 times a day, and this has been working for me over the past 5 years. Unfortunately, my state legislature, in its infinite wisdom, has just made this drug a "controlled substance." So now I must jump through hoops to get it. I have never experienced anything resembling "high" from taking it. webmd.com/pain-management/t...

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Oh that sounds awful. I'm so sorry.

I've worked our how to deal with the nerve pain now so am fine. xx

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Do be careful- I take t3 alone, and I have a distressing side effect which I think is cortisol related, pain/tightness under my ribs. I usually just think of it as something I have to put up with, but the other day I really wanted a break, and decided not to take my t3 for a few days. By day 3 I was shaking uncontrollably and couldn’t work my hands or mouth.

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Oh goodness, that's terrible!

I'm tapering as slowly as i can and have actually been fine the last few days. Hopefully i might have found a level where i can stay on it and not have withdrawal symptoms from the other thing.

Nightmare, isn't it! x

What dose are you on?

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Only 25 mags a day! Luckily it works quickly, and after I look half a tablet I was ok in a few hours.

Good luck! Xx

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Oh, that's good!

And thank you xx

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