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

[ockerdoc]

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.

[RedApple Administrator]

' 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 in reply to RedApple]

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

[GlowCoach Administrator in reply to ockerdoc]

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 in reply to GlowCoach]

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]

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 in reply to FallingInReverse]

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

[FallingInReverse in reply to ockerdoc]

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!

[SarahJane1471]

Can I just add something.

I started my thyroid journey in 2019. My TSH never went over 5 but my FT4 was under range and FT3 scraping along the bottom of the range. I started Levo and slowly went through increases but could never get past 125mcgs even though at 95kgs in weight. I’ve tried adding T3 but my TSH became undetectable and as I sourced it myself I was scared that when I went for my annual NHS blood test it would freak my GP out. I was getting my T3 from Greece and that source has dried up. So last year I decided I would experiment with stopping T3 ( it was only a tiny dose) and reducing my Levo to 100mcgs to see what would happen and check my pituitary was still sending the TSH signal . I was determined to give it 6 months. Guess what…… TSH went from undetectable to 3. FT4 back below range and FT3 bottom of the range 🤷‍♀️. I felt shite!

Clearly my pituitary was working and showing my thyroid was struggling again. I’m back up to 125mcgs Levo now.

I still supplement B12 ( cant tolerate any b complex), Vit D, magnesium. Now adding selenium.

I’m not saying stop, just telling you what happened to me 🤷‍♀️.

We are all different….. good luck 🙏

[arTistapple in reply to SarahJane1471]

My story pretty similar. The NHS has no stomach for helping us. They appear to know the “Jack &Jill” method but anything out of the ordinary - e.g. us here on the Forum, no NHS support whatsoever is available.

I should have learned my lesson about 25 years ago when I complained of heart issues. I was not in the right ‘group’. Never got to the bottom of what was going on, even after having an MI.

Hypothyroidism is taking the same path. Only now I do have CVD. You just could not make it up. No-one in medicine seems to have the first clue about the importance of treating hypothyroidism. In fact from what I read it’s subclinical that seems to produce the most danger to hearts. No facts or figures but just keep seeing it in the literature.

NHS is doing a big disservice to us all.

[ockerdoc in reply to SarahJane1471]

Thank you 🙏