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.
I’ve done exactly the same with my daughter, not often symptomatic and very borderline no antibodies, been like this since 17 and now 21. Watch and wait and maintain vitamins is our plan.
Ever do a post with her numbers?
healthunlocked.com/thyroidu... from 3 yrs ago. Happy to DM or start a new thread as this is off topic for the OP x
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.
I often think about trying to come off as I don’t feel great on levo. I only had one test, not two, before being diagnosed via a scan which showed my thyroid was borderline. Blood tests showed TSH of 11 and antibodies high 200’s. I had had a horrendous cough caught along with husband from daughter’s friend , followed by Covid , followed by another cough that took absolutely ages to go, all in four months. I wonder if this was thyroiditis? And never had a second test to check.
You don’t need a second test to check. If your thyroid antibodies have ever been high, then you have autoimmune thyroiditis or Hashimoto’s. The condition will wax and wane—but ultimately is likely to get worse over time and slowly (sometimes quickly) will destroy your thyroid gland. It’s practically certain you wouldn’t be able to come off thyroid replacement—and that even if you were able to manage it, at some point you’d probably need it again.
Thank you, was hoping I could try but seems not! Does having levo slowdown the thyroid degeneration?
It seems to, by reducing inflammation. pmc.ncbi.nlm.nih.gov/articl...
But some people still have what we call (around here) Hashi “flares”, where the autoimmune disease breaks through even when taking thyroid hormones.
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 🙏
I was told I am on Levothyroxine for life, if I don't take it I would be very ill. I am not a doctor and as long as I take my 125mcg every day I am fine. I have been on it for 20 years.
That's a high dose to drop 50 mcg in one go. I reduced 25mcg per month from 75 and the third month went from 12.5 to zero so came off levo in the space of 3 months. I've been tested while reducing and my tsh did rise to around 4 just below. I do a lot of alternative treatments every day, have a very clean diet and work out and cycle as well. My heart rate has risen considerably and my temp only slightly but because of exercise it can be all over the place sometimes. I am feeling a lot better though most my water weight has gone and brain fog is much much better so I'm functioning better but not what you would call optimal. I think it's a long journey and could take me 6 months to a year to get to an optimal state if I get there. I do take many supplements and I also take iodine which really has been a game changer for me. I also do Chinese thyroid healing and Indian paranayama to help this processes and it works although progress is slow. Fingers crossed I can keep improving. I got sick to death of the doctors and T4 it just didn't help at all.
Thanks for that glad you’re recovering. I ‘ve come down to 50mcg now after being on 75 for 2 weeks. My resting heart rate has gone back up to 60 which is a good sign. I can feel my thyroid kicking into gear. Just hope it comes back to pre Levo levels 🤞
I was just wondering about your heart rate. Between 60-100 beats per minute is considered normal. Some high performance athletes do have very low heart rates (between 40-60), but unless you are doing incredible amounts of exercise, your hear rate should not be low.
Keep an eye on it, especially if it goes below 60; a low heart rate (bradycardia) can be a serious problem as the heart can't pump enough oxygen-rich blood to the body. It can cause chest pain, confusion or memory problems, dizziness, tiredness or feeling weak, fainting or near-fainting or shortness of breath. So keep monitoring the situation.
Thank you yes I did have a few low days when I went down to 75mcg and then 50 but it seems to be sticking around 60bpm now..I’ve always had quite a low heart rate though..sometimes as low as 45 when doing keto. I’m keeping ok eye on it though on my Apple Watch.
I was thinking about doing keto watched loads of y tube docs explaing it but it's a commitment to low carb eating which is harder than it sounds. I do fast most days though anything from 12 to 16 hours. Did the keto help you with symptom resolution?
My heart rate on wake up previously on T4 was low one reading I took it was 43 really dangerous I think. And now it's in the 50 plus region. Mid morning after my routine and specific drinks plus exercise can go above 70 sometimes but it's usually 60 plus. Mine is really unstable most days but getting better. Temp is creeping up but not by much.
Hi ockerdoc
Please be careful with what you are doing, I’ve had thyroid problems since age 11 and it has been misdiagnosed and really badly treated and tested by the NHS. I do not do well on Levo and think it doesn’t agree with me so I got myself onto Nature Throid a few years ago. It worked very well for me. I reverted to Levo when this was discontinued. Bad mistake as I’ve very slowly got worse and worse. That’s one of the problems in my case with thyroid, it creeps up on you very slowly and insidiously and you don’t realise until you are very unwell.
To cut a very long story short I got the brilliant idea of coming off Levo about 4 years ago and I’ve been a bit on and off it since, this was another of my really bad ideas and I have been really, really unwell ever since. I’m now back on Levo whilst I am searching for a good reliable source of NDT.
It’s going to take me a very long time to sort out the problems with my thyroid, I did not know that you can get neuropathy and develop bile duct stones due to it and have only recently found this out. The NHS only tested my TSH which has come back at 3.10 which they say is perfectly okay, I know it is not right for me and I know the THS is not a helpful test.
Just be really careful coming off it, I really, really want to be off thyroid meds but I think that is just wishful thinking on my part, it might be different for you but please be aware this illness really does creep up on you and causes a lot of trouble!
Have you trialled T3 yet. Most levo users who do badly on it T4 generally do so much better on the T3 as it's an active hormone, the only problem is getting prescribed by the NHS which I think has been stopped. So most people source it online.
Thank you 🙏 yes I’m down to 50mcg now and not feeling too bad to be honest. I’m not counting my chickens just yet and I haven’t tested so far. I plan on testing when I’ve been off for a month. I’ve had a few hypo days when I reduced to 75mcg but nothing since so I’m hoping my thyroid is beginning to kick into gear. I was expecting really bad constipation but had nothing as yet. I’m hoping I had thyroiditis from the Covid vaccine that is my theory.
I am very suspicious of the Covid vaccines.
There are so many respected scientific papers out there now with genuine evidence of thyroiditis caused by the vaccine.
Cortisol fluctuations on raising thyroid meds
Hashimotos? 
Coming off T3
Coming off levothyroxine 
thyroid meds 
