I’ve lowered from 125mcg to 75mcg. Been on 75mcg for around a week and a half ish. The last few days I can definitely feel the levothyroxine leaving my body. It’s around the 4 week mark so it’s about right with the half life of Levo. So if my theory is correct and my thyroid no longer has thyroiditis from the vaccinations how long will it take for it to start back up again after 18 months? If it even does! I’ve definitely been feeling weaker and a little bit wobbly at times the last few days. My resting heart rate came down to 46 yesterday. How long would you stay at 75mcg to see if my thyroid can get going? I’m thinking give it at least 4 weeks and if I start improving great but if I carry on going downhill then admit defeat and just go back to 125mcg. Does this sound about right? Thanks in advance.
Coming off thyroid meds 4 week update. - Thyroid UK
Coming off thyroid meds 4 week update.
I’ve only researched it, in context of monitoring my daughter from 16 years old to now - 18 years old.
I was watching her thyroid numbers - TSH was rising, free Ts low.
I was on the edge of trialing Levo for her many times.
But I waited specifically because I was never able to find an answer to that question: How long after stopping Levo would the pituitary “wake up.”
She is a teenager (volatile time for hormones), and she never had any antibodies. Ultrasound was normal. I could never be sure if she would ultimately need Levo for life.
Because of that and never finding evidence about if Levo could put the pituitary to sleep (or make it sluggish) forever, I never put her on Levo. My takeaway at the time is that there was no way to know, and it was highly individual.
Not an answer to your question, just sharing what I learned.
Ok thanks we’ll see how it goes I’ll give at least a month or 2 if there is no positive progress or it gets worse then I’ll throw in the towel and admit defeat.
Also had a thought - if you’re still at 75… won’t that be keeping your pituitary suppressed?
I think that was also always in my head - that it’s not a sliding scale… Levo doesn’t “top off” your pituitary function, it replaces it.
So wouldn’t you have to start the clock from when you’re off Levo entirely?
Even writing those words makes me worry! But there are cases of temporary thyroiditis and so I totally get what you’re trying.
Do you regret going on Levo in the beginning? Or did you really need it no doubt?
i think the same ...... you can't be very sure of anything until been off levo entirely for ? a few months ...which is obvs running the risk of getting pretty unwell / taking a long time to recover from if thyroid wasn't ok and had to go back on levo.
Yes I definitely regret going on. I thought Levo was the answer to my problems at the time with my TSH at 5 but I really should have given my thyroid a chance to recover on its own for a year. But I do believe the human body is strong and can recover and I don’t mind experimenting a bit. People come off Testosterone replacement therapy all the time and recover to normal levels. So there’s hope yet. I was thinking as you lower the dose your thyroid will wake up because your TSH will be increasing. But I really don’t know.
Also had a thought - if you’re still at 75… won’t that be keeping your pituitary suppressed?
I think there might be a point where TSH could rise—in theory at least—once the hypothalamus/pituitary registers the drop in thyroid hormones. If the axis isn’t permanently damaged anyway.
But that might not happen—if it’s going to happen—until levothyroxine is below 75mcg. It might be that you’d need to drop to 50mcg or even lower before that happens.
If TSH starts to rise at all during this reducing stage, I’d consider that a promising sign that maybe, just maybe, the situation is reversible. But it could take quite a while. Weeks and months rather than days and weeks.
Watching with interest.
Totally. So ockerdoc - curious what your last TSH was, and what your blood test schedule is to check again.
First you’ll want to see your TSH responding.
I think you’re going to feel very very very hypo in any case. Maybe you do not want to go cold turkey and totally crash while you wait for your pituitary to wake up. But it’s also totally possible there’s a time gap between the very low free ts you will experience and TSH realizing this and starting to work again.
But if I were you I wouldn’t wait 4 weeks on 75 as that’s a fairly high dose and lots of thyroid hormone, and I would guess as Jazz noted your TSH probably wont increase while it’s got 75 Levo floating around in the feedback loop. I would probably decrease by 12.5, for a few weeks, and I would probably over-test despite lack of reliability in transition periods. Out of curiosity, for visibility, better decision making and maybe safety.
And then even when your TSH responds… moment if truth that your thyroid responds.
All the above is rambling, not advice : )
Thank you yes I agree I’m going to do 50 every other day for a few weeks see how we go. I’m expecting some hypo symptoms for a month or 2 but hopefully it will improve. If not then I’m on for life and I’ll have to deal with it. I think I’ll try it through my GP aswell. I think my last TSH was about 0.3.
Thank you for updating us ockerdoc. Unfortunately I don’t think I can offer much advice as for me, adjusting medication needs to be super slowly over time (ie decreasing by just 12.5mcg). You seem to have taken the ‘bull by the horns’ in your approach and it’s great that this so far is working well for you. I’m so pleased that you are closely monitoring your health & logging symptoms, heart rate etc. I wish you well in your quest to find out if your thyroiditis is temporary.
Just to remind members what you said in your last post
‘I wouldn’t recommend this if you have Hashimotos or had a very high TSH pre treatment.’
For the vast majority of people with hypothyroidism, thyroid medication (such as Levothyroxine) is essential for maintaining health & wellbeing.
This is a great question and I’ve always wondered myself about waking up the pituitary hating being on the levo for life. A functional medicine person ran a test on me seeing if I had the enzyme Deodinase D5 which converts T4 into T3 and I don’t have the enzyme. Endocrinologist still keeps me on T4!!! I have Hashimotos and always wanted to go cold turkey like you but when I was diagnosed after daughter’s birth 16 years ago my TSH was in excess of 100 so nearly thyroid coma and don’t want to risk it. Please keep us posted with your findings. Thank you
With Hashimoto’s and a TSH that went that high, unfortunately it would be incredibly unlikely you can get off thyroid replacement hormones. Waking up your pituitary wouldn’t make any difference if your thyroid has atrophied from having Hashimoto’s. Apologies if I’m stating the obvious—I just think it’s important that we keep stressing the point that most people wouldn’t be able to come off thyroid replacement hormones. There’s a significant risk of becoming very ill indeed and it taking years to get back to a point of feeling near normal again.
Again, not saying this to you directly—more to casual readers of this thread who might feel tempted to give it a whirl. It’s not for most people.
The only other advice I will give you is to closely monitor your glucose levels and your cholesterol levels. Both of these depend on sufficient amounts of thyroid hormones, especially T3, so your metabolism can efficiently deal with them.
If you test your thyroid hormones, test your lipids and glucose as well and follow them over time to see if they stay at a constant level. If they increase, this is a sign that your thyroid might not be able to pick up the slack and as a result, these levels will increase. Although slightly elevated cholesterol levels are probably not that much of a problem, higher glucose levels can push you into the pre-diabetic or even the diabetic area, which you certainly want to avoid.
All the best.
Thank you 🙏
Cortisol fluctuations on raising thyroid meds
Coming off T3
Hashimotos? 
Coming off levothyroxine 
thyroid meds 
