Coming off Levo..3 weeks in experience so far. - Thyroid UK

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Coming off Levo..3 weeks in experience so far.

ockerdoc profile image
7 Replies

I was on 125mcg currently on 75mcg. I went down to 100mcg for 2 weeks. Felt a little low for a few days but then seemed to bounce back. Been on 75mcg for 5 days now and a similar thing happened felt low then got better. I went through all my thyroid results from 2005. All results were similar around 2.0 TSH up until 2020 then it went up to between 4-5 TSH for 2 years around the time of the Covid vaccine. I haven’t had a vaccine now for around 2 years or more so I’m hoping my thyroid will recover. I’ll be going down to 50mcg in a week or so for 2 weeks then 25mcg. I wouldn’t recommend this if you have Hashimotos or had a very high TSH pre treatment.

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ockerdoc
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RedApple profile image
RedAppleAdministrator

' I wouldn’t recommend this if you have Hashimotos or had a very high TSH pre treatment.'

Thank you for including that in your post, I totally concur! The vast majority of people on thyroid hormone replacement need to stay on it for the rest of their life, and trying to 'wean off' is a very bad idea.

ockerdoc profile image
ockerdoc in reply toRedApple

I agree totally..I think I fall into the very low percentage that may be able to.

GlowCoach profile image
GlowCoachAdministrator in reply toockerdoc

Often people do feel betetr in the first few weeks but that can rapidly deteriorate to feeling dreadful and it can take over a year to get back to where you were. Just a heads up.

ockerdoc profile image
ockerdoc in reply toGlowCoach

Ok thank you..I don’t think I feel better though..just not as bad as I thought it would be.. I have to give my thyroid a chance to recover..if it doesn’t then so be it I’ll be on for life 🤷‍♀️

FallingInReverse profile image
FallingInReverse

I’ve appreciated your cautious reasoning and approach.

I also appreciate you keeping us posted, and hope you are able to continue to update us whether it goes well or not.

There are of course people with underactive thyroid where the cause is temporary. Or another root cause. Especially since you don’t have antibodies (which does not rule out AI causes, but instead leaves it ambiguous.)

My only thought at this moment, is remember that Levo has a 7 day half life. So 3 weeks is in no way long enough to evaluate anything you are feeling. So the next 3-4 weeks and even weeks after that is when your exogenous ft4 will leave your body.

I’m optimistic for your efforts but of course there is zero way of knowing what will happen, and hope you will also watch closely as every day goes on through a truly completely uncertain transition period.

Please do keep us posted, including in a few weeks when you get new TSH ft4 and ft3 again.

ockerdoc profile image
ockerdoc in reply toFallingInReverse

Thank you 🙏 I will definitely update here in a few weeks.

FallingInReverse profile image
FallingInReverse in reply toockerdoc

We all know this is just an internet forum but even though no one really knows much about you, we are worried for you anyway.

Hope for the best, and plan for the worst! Watch your symptoms and get medical help if anything seems to go in the wrong direction.

Be careful out there!

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