Cold turkey stopped levothyroxine (synthroid) 200mcg for 17 days in Nov 2022. Prior, felt great.
Went back on 200mcg right away and had every hyperthyroid symptom, it was hell. (tsh 0.04 FT4 18 (9-19))
I have been trying to find my dosage ever since.
Titrated from 125mcg, 150mcg, 175mcg, 200mcg. 8 weeks at least on each. No symptom relief at all.
Waited 12 full weeks on 200mcg to be sure, and I still feel awful, very symptomatic.
Current blood work on 200mcg:
TSH - 0.04
FT4 -16 (9-19) - other ranges are 12-22
FT3 - 4.6 (2.6-5.8)
Vitamin D - 130 (75-250)
I have 0 hyperthyroid symptoms. I sleep all day, extreme fog that feels like adhd, and fatigue that is insane.
Doctor said I can try 225mcg levo for next step, but after that said I need to try armour thyroid or add t3 which I never needed before. He won't go up in levo again after this.
Why is my tsh suppressed? Why does 200mcg no longer work for me? And what can my next steps be? Armour thyroid or cytomel?
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Johnfishman22
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Hi there, do you have blood test results from before, when you were feeling good? Also, has anything else changed? More stress in your life? Weight change? Diet change???
My tsh was 1.46 and FT4 was 18 (9-19). No symptoms at all. I don't know why my tsh is suppressed on the same dosage and my ft4 is 16 now, lower than when I felt good.
yes. No supps, no levo before the test. When I stopped 200mcg and then started it again, I became very overmedicated. All symptoms and tsh 0.04. I think this messed with my tsh, it stayed low. I Dropped to 125mcg and it went to 1.8. I was diagnosed with tsh at 10 or so, and started on 125mcg years ago, so I know that 1.8 isn't actually right
I was first prescribed levothyroxine as my TSH was 100 but no doctor had taken any blood test or had any knowledge about how to diagnose or treat a patient who might be hypothyroid. It took a long time for me to be diagnosed as many doctors seemed to have no knowledge of a patient who was hypothyroid. If you click on my name I have put my history.
Many people seem to do "OK" with levothyroxine and I've met some of them who are 'happy' with it.
I found Levo horrific as it gave me severe palpitations, particularly during the night and my husband had to try to reduce palpitations by giving me ice-cold water and wraps around my neck whilst I sipped ice-cold water to try to help reduce the palpitations.
Once prescribed for 'liothyronine' alone it calmed my body and I felt well again.
I began to read information by Dr John Lowe who was an Adviser to TUK. He was a scientist and doctor who restored many people's health.
Unfortunately for us -the patients - Dr Lowe died due to a bad fall that caused a bleed in his brain. He would not prescribe levothyroxine(T4) but liothyronine (T3).
My health recovered due to following his method. I take T3 when I awake with one glass of water and wait one hour before I eat.
I think the question is: why are you obsessing about the TSH? It's the least important of the numbers. It doesn't make you feel anything. More important is your FT3 and that could be higher. But, with or without the TSH, you seem to be converting ok.
Why does 200mcg no longer work for me?
Often happens that when, for whatever reason, you stop taking levo, going back on the same dose doesn't have the same effect. I think you've been told that before, in other threads. No-one knows why, but you would seem to be absorbing it less efficiently. Perhaps, during the time your were off it, your stomach acid reduced and/or the condition of your gut deteriorated.
And what can my next steps be? Armour thyroid or cytomel?
I don't think that at this point you have an specific need for T3 because, as I said, you seem to be converting well. So, maybe the first step should be to increase levo as the doctor suggested. See if that helps. It might or it might not. If it doesn't, then think about adding in some T3 to a reduced dose of levo. It's all trial and error. There are no hard and fast answers.
I am just confused as to why my tsh is suppressed when it never was in the past, as long as it has no other function and that is not a reason for me having symptoms? I have never had symptoms, even when diagnosed.
I am trying to find others who have done this, and those I have come across say they needed a higher dosage than before, and that those who have been overmedicated their tsh stayed suppressed for long.
I have increased to 225mcg, and will wait 8 weeks. My tsh will probably be undetectable but doc was fine with it (thank god). He also is confused as to why its suppressed, but knows I am not a new diagnosis and was on 200mcg for years and felt incredible.
Just want to have a gameplan going forward, as I thought going back on 200mcg would do the trick and all is well.
I take synthroid on an empty stomach, no coffee/food for an hour. Same time daily.
Thanks for the help. Just want to see a light at the end of the tunnel.
Not sure there is a hierachy. Symptoms backed up by blood test results are of equal importanc. Why? Because sometimes the symptoms of over and under-medication can be the same. Blood tests will tell you which. But, once the TSH gets below 1, it's of little importance, and not a good indicator of thyroid status. What's more, it doesn't always correspond to FT4/3 levels. Nor does it tell you how well you convert. It's main use is in diagnostics, not treatment. And even with diagnostics it's not 100% reliable because it depends how well your pituitary is working. And, remember, your pituitary is always served first with any thyroid hormone that is available. So, your pituitary can be satisfied and reduce output of TSH, whilst the rest of the body's cells are still hypo - i.e. not enough thyroid hormone to go round.
The TSH has two jobs, and two only:
- to stimulate the thyroid to make more thyroid hormone
- to stimulate the deiodinases to convert T4 to T3, etc.
It does not cause symptoms, or make you feel anything, whether it's high or low. You will not feel the lack of it.
I am just confused as to why my tsh is suppressed when it never was in the past,
Was it an early morning test, when the TSH is highest? On 200 mcg levo I really would expect it to be suppressed. So, maybe the question is: why wasn't it suppressed before? And your chances of getting an answer to either question are about equal. It just is. Or wasn't.
I am trying to find others who have done this, and those I have come across say they needed a higher dosage than before, and that those who have been overmedicated their tsh stayed suppressed for long.
Speaking from my own experience - and remember, I'm weird! - I found I needed less. For reasons I won't go into her but it's all on my profile, I went of my T3 only for six months. I was taking 225 mcg daily. When I decided to start it again, I started low (of course) and found that I only needed 75 mcg. That was ten years ago, and I'm still on 75 mcg, but do find I need to reduce slightly in the summer.
And, the TSH in all that? Strangely, although it had been suppressed for years on that high dose of T3, and before that on 6 grains of NDT, after six months of nothing, it crept up to around 45. Lots of people do find that their TSH never rises again after being suppressed for some time, but mine did, and I've no idea why.
All that to say that things thyroid are unpredictable, and there aren't always answers to questions because not enough in-depth research has been done.
Just want to see a light at the end of the tunnel.
Of course you do. Don't we all! But fretting about a suppressed TSH is not going to switch it on. It's something you don't even need anymore because your thyroid cannot respond. So, why worry about it?
Could low tsh lead to less conversion from t4 to t3?
Love the explanation. Im glad my doctor is fine with the tsh being suppressed, otherwise I would still be on 125mcg with tsh 1.8...almost half the dose I am on. If 125mcg was really the dosage, I should feel very overmedicated, and I know exactly how it feels, heart rate is way up and cannot sleep.
I went up very slow from 125mcg all the way to 200mcg now. I gave each at least 8 weeks, sometimes 12, and nothing changed, so I don't think lower is my answer.
No, I don't think lower is your answer, either. I was just pointing out that these things don't always work the way we expect them to.
With an FT4 of 70% through the range, you do have a little room to increase. Up to you to chose if you want to go the the whole 25 mcg increase, or do as Forestgarden suggests and try 12.5 mcg. But, as your absorption appears to be compromised now, personally I'd gamble on the 25.
Could low tsh lead to less conversion from t4 to t3?
Yes, indeed it could. But, looking at the percentages, your conversion isn't too bad, as I said before. But, then, I don't know what it was before, when your TSH was higher.
Trouble is, doctors don't understand that and make a big fuss about a low TSH without even knowing what it is or what it does - or, more importantly, what it doesn't do!
Too much emphasis on it, wow. So I should really just focus on optimizing my FT4 with levo, hoping it converts well ?(which it seems like I am- I see others with way lower ft3 and higher ft4. If I don't feel better on 225mcg, and lets say my FT4 is around 18-19 (9-19), would it be wise to go up to 250mcg maybe putting FT4 at 21-22 or its time to consider t3 (would rather cytomel with more control)?
I keep emphasizing to my doc that synthroid worked well for me for years (I forgot to get blood tests because I just forgot I even had hypo, thats how well it worked), last resort is to add t3.
If I were you, I wouldn't go any higher than 225 mcg. Too much T4 is not good. So, if 225 mcg doesn't help, then yes, time to consider T3.
And yes, I agree with you. I prefer T4+T3 because it's easier to control the ratio.
I'm afraid that the past is the past, and doesn't always have a bearing on the present. What worked once can suddenly stop working for no apparent reason. Even if you hadn't stopped your levo for a while, this could have happened now. It's just one of those weird thyroid things that we don't understand. We just have to adapt to it, I'm afraid.
Hey Grey Goose. I am feeling worse than I ever have after increasing to 225mcg. I can hardly get out of bed. I don't have hyperthyroid symptoms, my heart rate is slow, I sleep 15 hours a day, can't concentrate etc but the fatigue is a lot worse since increasing 3 weeks ago. Is this normal? I can hardly function. Need some hope and light at the end of the tunnel, feels like I will be stuck like this
People often feel worse for a while after an increase in dose, but it eventually goes away and they feel better. If you can stick it out until the six week mark it would be a good idea to do so. Then get retested and see what's going on.
Thanks for the reassurance. If my dose really was 125mcg or 150mcg, with respective tsh of 1.09 and 1.04, I would feel super hyperthyroid on 225mcg right now, yes?
I would imagine so, yes! But on 200 mcg your FT3 was only around 60% through the range. So, I really don't think your dose is 125/150. Your FT3 would be very low on that.
I'm sure others will have suggestions, but my feeling is that you should try a 12.5mcg increase. Personally I favour a gradual gentle change, and 25mcg is too much in one go. Your free t4 can take a slight increase. I think what others may point out is that tsh is a pretty pointless measurement once you're on levo. You're not 'topping up' your own t4, you are replacing it. However I know that doctors focus on tsh. Try a slight t4 increase and see how you feel.
Thanks, I will. Trying to get that FT4 near 18 again.
I must have messed with my dosage needs by stopping/starting, which I didn't think could happen.
Can this low tsh be a reason for symptoms? or could it be telling my thyroid to release less than before since it's suppressed so thats why I need more?
No the low tsh cannot cause your symptoms. Go by your free t4 and free t3, and your symptoms. As to why your tsh is low, the more I read, the more complex it becomes. Its not as straightforward as the basic negative feedback model suggests.
👋 hey johnfishman22. I totally feel for you and wish you all the best in your quest to be well again. I did a similarly reckless thing and came off levo cold turkey for 15 days, after having been on it for 30 odd years. My doctor advised me to go straight back to my dose of 150 - BIG MISTAKE!!!! Same symptoms as you, same ultra low tsh, insanely high heart rate, unable to sleep for literally weeks, same reaction from doctors wanting me to drop dose massively due to ultra low tsh etc etc
Any rate, point is. although I haven’t got myself back on track yet, I think I made a further critical mistake which you might be able to learn from:
After multiple dose drops and changes, my doctor let me try going up to a dose of 125 . After 8weeks, my tsh was still a ridiculously low 0.06. (I still felt appalling) After another 8 weeks (16 in total) my tsh was up to 2!!! (I felt better, but still not right) In hindsight, I wish I’d then let my body stabilise for even longer at that level, as I was feeling the most stable since going cold turkey. However, I wanted to go back up to my old dose of 150 - ANOTHER BIG MISTAKE- everything majorly destabilised again.
I know that some people say tsh doesn’t really matter, but I think the increased intense stress our bodies went through is being reflected in our reduced tsh. And, if your thyroid was working normally, it would naturally secrete less t4 in times of stress, so maybe there’s a similar mechanism that causes our levo treated bodies to retain less ft4 after trauma. You’re at your original dosing level, if you could bare to stay there for a bit longer to allow your brain to feel safe again, maybe you would start to feel much more like you once did on that dose. I think maybe our brains need longer than the usual 12 weeks because of the trauma we’ve put them through.
If you do go up a dose, then I think you’re very wise to just go up the 12.5, but I wish someone had said to me, hold at that 125 dose for a bit longer, ‘cos the difference between how I felt at 16weeks as opposed to 8 was quite marked. Who knows the difference another 8 weeks would have made, But instead, I chose to fly too close to the sun.
Please note, I have not practiced what I preach and went down the desiccated thyroid route, have had multiple further dose changes and am further away from wellness than ever - yay 🙌!
Whatever you decide to do, really really good luck! You’re being very wise taking things slow and steady. 🤞🤞🤞
did you ever get back to your old dose of 150mcg? Why did you end up going to NDT?
I waited 12 full weeks on 200mcg. Tsh still stupidly low and I have all the hypo symptoms. I’m very reluctant to change to NDT or add t3 since Levo worked so well for years!
So on 125mcg, after 8 weeks, you measured at 0.06, but after 16, it was 2? And you noticed you felt better?
I totally agree that somethings up with the tsh. When I went back on the 200mcg dosage, it was hell. Hyperthyroid central, unable to sleep for weeks.
I have none of those symptoms now but few hypothyroid. I have the exact same tsh 0.04, which I felt overmedicated at, and now I feel under.
I wanted to wait a while on 200mcg and thought 12 weeks would be good, and I noticed nothing changed. I have seen literally 0 improvement on 125, 150, 175, and now 200.
So when you tried to go back to 150 again, did you feel hyper?
Bellow is the gist of what went on for me, not sure 🤔 how much it’ll help because I haven’t found the solution yet, but I saw a small glimmer of hope when I was consistent for longer than the usual 12 weeks, but was too greedy for more 😬
The reason I wanted to try ndt was because levo has never worked perfectly for me. The reason I went cold turkey was because 1. I lost my mind!!!! 2. I was never totally symptom free on t4 3. I wanted to see if my thyroid might kick back into action 4. I lost my mind!!!! 5. I’d just been messed with after blood tests and was feeling worse than ever anyway and angry about my treatment and 6. I lost my mind!!!! 😝
when I went back on 150 from cold turkey about 1hour after taking Levo I went kind of hyper shaking, racing heart, then every hour or so, my temperature would drop to 34 and then go back up and all sorts of nonsense. My hands would go hot then cold then hot then cold in a matter of minutes. I couldn’t sleep AT ALL, I was on zopiclone, they put me on sertraline, I was given diazepam. Nothing calmed things. I remember going to the drs and having my forehead temp checked during the pandemic in these early days of going back onto Levo and the look on the doctor’s face when she saw how low my temperature was was a sight to behold. Tsh said my dose was too high, so it was dropped again. Racing heart continued feet went cold. Dose changed again, feet and hands went cold, racing heart soft stools continued. Overall temp getting lower and lower.
Eventually, when I tried to get back on 150 again, after multiple dose changes based on doctors advice after blood tests, I don’t exactly know how to describe my symptoms, they were all over the shop. Almost hyper to hypo all in one day: Massive blood pressure swings, tight chest, cold hands and feet, low body temp, stiff achy legs esp. overnight, soft poop (sorry. You did ask!), severe lightheartedness overnight, very broken nights, leg cramps, sudden falling sensation yadda yadda kind of a mixture of hypo and hyper, just really really messed up. Sadly that’s me all over 😜
I think 🤔 for me jumps of 25 in one hit are too much.
I’m still persevering with ndt, symptoms are still there, just different, but now I’ve gone down that road, I feel I have to pursue it a bit further and for a bit longer.
I’ll be routing for you. Sounds like your doctor is a good’un, even though he hasn’t got all the answer's.
But also, if 175mcg let’s say (your 125 example) was the correct dosage and I needed to wait, I should feel super overmedicated now which I don’t. Same thing with 200, if I start to feel very overmedicated on 225mcg, then I know 200 may have been it. It I still feel so hypo it’s insane. 17 days off messed me up for over a year now
The thing that was starting to happen tho, after a good 16 weeks, was that I was starting to flip from feeling majorly majorly hypo: brain fog, freezing cold, major fatigue, daily nap attacks, suddenly feeling like I was falling, air hunger, to seemingly being better able to use the t4 I was giving it. I think, in retrospect, my brain was starting to get more relaxed about that consistent daily hit, instead of panicking and seemingly dumping it within a couple of hours of taking it. And, although symptoms had by no means fully resolved, my bp was starting to normalise, my temp was starting to increase, my hands, though still not my feet, were starting to warm up. I thought, by going up a dose, things would be better again, THEY WERE NOT!
I now wonder if I’d stayed really meticulously consistent on that exact same dose, then my brain might have been able to relax even more and maybe allow my feet to warm up as well and that then, maybe after say another 16 weeks, or even more, perhaps at that point I could have gone up a teeny amount and all may have been hunky dory.
It’s only theory, but maybe my mistakes could help you or others, maybe not.
It’s so easy to give advice to others. So difficult to take that advice when you feel really unwell - desperate people do desperate things! Someone somewhere on this forum once very wisely said that constant dose changing is a fool’s game - I am that fool! And in fact have just today started a new regime - doh!!!
I guess though that I like to believe that if you were once so well on 200 levothyroxine, you can be well again.
And that consistency, combined with ultra cautious titration, could be the key 🔑 to you getting your brain to relax enough to ultimately get your body’s response back on track.
I will be watching your progress with great interest! Your steadfast approach is heroic and I truly hope it will restore you to the health that you fully deserve, sooner rather than later! You’ve got this johnfishman22! 🍀🍀🍀
I know that some people say tsh doesn’t really matter, but I think the increased intense stress our bodies went through is being reflected in our reduced tsh.
I really don't think that's how it works. The pituitary adjusts its output to the amount of thyroid hormone in the blood, nothing else. But, even if that were the case, it's still not the TSH that is important.
And, if your thyroid was working normally, it would naturally secrete less t4 in times of stress,
I don't think it would. I think it would reduce conversion to T3.
The pituitary adjusts its output to the amount of thyroid hormone in the blood, nothing else.
I don't know what factors control TRH output but, if nothing else, brain levels of thyroid hormones can be at least a little different to rest-of-body / blood levels.
The entire endocrinology profession ignores TRH most of the time. I suspect it at least sometimes has more significance that is appreciated. And especially if there is any form of brain injury which changes that level permanently.
OMG! The pasta brain is really bad today. The penny has only just dropped! I didn't have a clue what you were talking about. 🤣🤣🤣
But yes, TRH does affect the pituitary output of TSH. And, yes, everyone ignores it - including me because I couldn't quite work out where it fitted in. Still can't. So, shall continue to ignore it. But, I somehow doubt that stress has anything to do with it. I would imagine that it's output is controlled by the levels of thyroid hormone in the blood, that would seem logical, but then again, that's what affects the pituitary, so why have two mechanisms that do the same thing? Beats me! lol But, Pasta Brain is going to sleep now, that's quite enough thinking for one day.
Doesn't matter what other ranges are. You work with the range given with your result. Ranges are set according to the machine the analysis is done on, plus the results of the presumed 'healthy' local population. So, they are very specific to any given lab.
Woofa said: I know that some people say tsh doesn’t really matter, but I think the increased intense stress our bodies went through is being reflected in our reduced tsh.
You replied: I totally agree that somethings up with the tsh
I see Woofas comment as consistent with Grey Goose’s more in depth explanation/dialogue on TSH… actually the best and most complete I’ve seen yet (thanks greygoose !!) Whatever is “up” with TSH it does not cause symptoms. You analyze your tsh or explain it, but it’s a red herring for any dose/treatment changes. GG said it all, I won’t try to paraphrase, but you need look no further that those replies above.
I wanted to wait a while on 200mcg and thought 12 weeks would be good, and I noticed nothing changed. I have seen literally 0 improvement on 125, 150, 175, and now 200.
You said “nothing changed“… is that actually true? “Nothing”?
I ask because the titration journey for me is a volatile one within those 6-8-12 week periods. I was frantic at 5 weeks into a dose change… the palpitations and I can’t even remember what else, but I was besides myself.
As it happened, I ended up losing my printed Rx for my blood work that I had in-hand at week 6, and it took me 2 weeks to find it, I’m now going to get bloods in the morning (8 weeks). And I am sooooo glad. Because as woofa said (and others I read in my frantic week 5) 6-8 weeks minimum but longer is always better.
I track my symptoms every day as they accost me : ) involuntary naps, hours of brain fog where I can’t think or work effectively, palpitations (oh the palpitations!), and anything I spontaneously notice. And whereas I sit right now feeling “no different “ than 8 weeks ago (my husband asked me just today and I said - eh, I really don’t think I’m any better) what I will say is that in the next couple days when I read the line by line of my chronology of the last 8 weeks, I know things have changed.
What I know from about 8 years of symptom tracking (lol) is that humans are very bad at remembering when and for how long they feel sick. When you think you started feeling sick ## days ago, checking the symptom tracker shows I’m usually way off. I see this with my daughter and dad too. So have my palpitations decreased in frequency ? I “feel” they have but I’ll have to look at my notes. Am I sleepless more nights vs less? I could guess but it would be useless. Our sense of timing is warped and the ups and downs blend .
For myself, this has been on my mind, and so I thought about it when reading your post.
So maybe there is no significant improvement, but I bet SOMETHING is changing??
once taking any form of thyroid hormone replacement the TSH is the least important reading with the Free T3 being the number 1 and most important reading followed by your Free T4 reading.
I imagine your thyroid is now totally disabled -
Lucky that you have alternative treatment options in Canada :
200 was a large dosage I was on for years, and must have suppressed my own output. I am shocked that 200mcg has not worked for clearing my symptoms now.
When I see those doing poorly on levo, they usually started that way. I had massive success, and never had any symptoms, even when diagnosed and dose was changed over the years.
Well it's worth a go I suppose but as I understand things with Hashimoto's eventually your thyroid becomes totally disabled and rendered ' non functioning ' .
At this juncture - for health and well being - it makes sense to replace with both synthetic T3 and T4 thyroid hormones that your thyroid once supported you with.
The body runs on T3 which is the active hormone - and said to be around 4 times more powerful than T4 which is a pro-hormone and needs to be converted by your body into T3 - and you need some T3 to kick start your body's metabolism.
It is said that a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1 , T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Or switching to Natural Desiccated Thyroid - which is the fullest of all treatment options contains all the same known hormones as that of the human gland - as listed above - and derived from pig thyroids - with 1 grain - ( tablet ) Armour containing a measured dose of 9 mcg T3 + 38 mcg T4 and you slowly increase your dose by 1/4 grains until you find the dose of NDT that suits you best.
NDT was the original treatment for hypothyroidism and successfully used for over 100 years until Big Pharma launched its synthetic T3 and T4 options on the back of NDT in the middle of the last century.
Some Hashimoto's patients find they can't tolerate NDT as introducing further natural thyroid tends to upset their immune system response further.
200 was a large dosage I was on for years, and must have suppressed my own output.
Of course it did. That's what it's supposed to do. And it did it long before you got to 200 mcg.
Levo/T3/NDT don't just 'top up' your thyroid's natural out-put, they replace it. With the increased levels of T4 and T3, the TSH drops and the thyroid goes to sleep, as it were. It cannot produce hormone without the stimulus of TSH. That's why it's called 'thyroid hormone replacement'.
So lets say my tsh is 1, does that mean my thyroid is producing a little bit more than if my tsh was 0.04, assuming I am on the same dosage of levo, say 200mcg? Just trying to see why 200mcg doesn't work now.
Lower tsh = less output from my thyroid? Even if it's not making enough
Regardless of levo I am taking?
And when I stopped it and my tsh was 224, it tried to make whatever it could, so when I went back on 200mcg I felt super overmedicated?
You know, you're on a hiding to nothing, here. These things just can't be explained with our current knowledge of thyroid. And even if researchers did find out these things, I doubt they could be put into simple enough language for the layman to understand.
The thyroid's reaction to the TSH is unpredictable. It's not a straight forward - or even a complicated - mathmatical formula that you could say x * y so z * abc. It's far more random than that.
I don't know what your numbers were when you were diagnosed but a rough, imaginary picture of the situation would be (none of the numbers are real):
TSH 74
FT4 16 (12-22)
So, you could say your FT4 is 'normal' - or euthyroid, to be more precise. Yes, but, it took an abnormal amount of TSH to get your T4 to that level.
So, you start taking a small dose of levo.
TSH drops to, say, 60. That won't be nearly enough stimulus for your thyroid to make a euthyroid amount of T4. It might possibly manage 13 (12-22).
TSH drops to 30. And that that's it: the thyroid is out of the competition. It cannot function with such a low TSH. So, it goes to sleep. And you are entirely reliant on exogenous hormone, now.
So, you keep increasing your dose, and the FT4 rises - and hopefully so does the FT3, depending on how well you convert - and therefore the TSH drops even further.
So, you get to a comfortable level of Free hormone, for you as an individual, and your TSH is now very low and everything is fine.
BUT, for whatever reason, you stop taking thyroid hormone replacement (in my case it was because a very high fever fried my brain and I went temporarily insane!). FT4 levels drop, TSH (hopefully, but not always) rises, thyroid 'wakes up' and slowly creaks back into action making as much hormone as it possibly can to keep you alive.
After a while, you start taking it again. But, a lot of things have probably changed in your body. It was a terrific shock to suddenly be deprived of life-giving hormone like that...
And, here, I'm surmising, based on things I've read. Your body doesn't trust you anymore. You might just cut off supplies again. So, it needs a guarantee of some sort, more exogenous hormone than you gave it before or it won't reopen those receptors that it had to turn off when the supply suddenly stopped.
But that's just a theory. No scientific backing as such, just putting together random stuff I've read over the years.
That said, it could just as easily have happened without you going off your hormone. We often read of people that have been happy and well on a certain dose for years. And, suddenly, it's not enough any more. Why? We have no idea.
Another thing that happens is, someone has been well and happy on a certain dose for years, gets a new doctor who feels he has to justify his existance and reduces his/her dose. The person becomes ill. Doctor is finally persuaded to put the dose back up to what it was, but it doesn't work any more. That person's equlibrium has been upset, someone has kicked over her apple cart! And things will never be the same again. It happens, but we don't know why.
It would be so much easier for all of us if treating hypo was just a mathmatical equation. But it isn't. It's random, personal and unpredictable and entirely trial and error. From time to time you get some bright spark who comes along and tries to reduce it to 'O' level maths, like calculating a dose of levo according to weight. But it's never that simple. We just have to go with it, wherever it takes us and accept that that's the way it is, and theres nothing you can do about it.
I was grateful for the 1.6 ug per kg guide dose it creates a contradiction in the NHS guidelines which I exploited mercilessly to get to a therapeutic dose of levo. 😂
My old surgery thought they were topping me up initially when they left me on 25ug for 6 months and then at 75ug of levo that a low (in range) TSH denoted therapeutic dose, bearing in mind I am 5’8” and 15 stone. My friend does well on 75ug but she is 4’10” and 6 1/2 stone. 🤣😂🤣😂
Were it not for the statement at the front of NG145 and that guideline dose by weight I’m not sure my route back to health would have even occurred. 😱
It's ok if it's just used as a rough guide. But it's when doctors/people take it as gospel that the problems arise. Even so, it shouldn't be necessary if doctors followed the protocol: start low and increase slowly until symptoms are gone. And that should mean without an upper limit. Problems start when doctors state that people are on the 'maximum' dose, or something, which does happen. Doctors just don't seem to have flexible minds and certainly very little understanding of how it all works.
I think it is the core problem- total lack of critical thought. I used to have such huge respect for medical doctors - sadly no more. The scales fell from my eyes when I joined this forum and it was this forum that gave me the advice to get well. My doctors were simply an obstacle to get round.
Currently, the greatest risk to my ongoing good health are GPs. What a sad state of affairs. 🙄
I don't think I've ever had any respect for doctors, even as a child I saw them as a useless bunch of ****. I was not impressed by the treatment I got for my many ailments, not the attitude and lack of bedside-manner of most of them. So, it was no great shock when I failed to get the help I needed for my hypo!
Hey Grey Goose. I wanted to run some past labs by you to try and better understand what's going on and what measurements are useful for me, what I should aim for etc
Diagnosed in 2017 - tsh was around 10, no FT4 I can't find it, or FT3, started on 125mcg, asymptomatic, or very unoticeable. Very athletic. Mom has hypo. Doc noticed my neck was large on a checkup. Antibodies are high.
Aug 2018 - feeling fine, no symptoms. 150mcg I believe
tsh 1.8
FT4 16 (9-19)
FT3 4.3 (2.6-5.8)
Feb 2019 - feeling great, no symptoms at all (I was in uni doing fine), was on 175mcg and increased to 200mcg here
tsh 10
FT4 11
FT3 4.4
March 2021 - on 200mcg, felt amazing. So much energy, I could take on the world here. Finished uni, started 2 businesses.
tsh 1.46
FT4 18
These FT3 results don't make sense to me, and seem unreliable since it's almost unchanged but FT4 dropped a lot and tsh shot up.
Dec 2022 - COLD TURKEY STOPPED 200mcg. Brain fog and fatigue come in a week.
tsh 224
FT4 6
no FT3
Feb 2023 - 200mcg, felt very overmedicated. No sleeping for a months, heart rate was sky high. Can't focus, fatigue. Dropped to 175mcg for next blood test.
tsh 0.04
FT4 18
March 2023 - dropped to 175mcg here. Felt awful still, all overmedicated symptoms - should have waiting longer on this dosage as it was only 5 weeks.
tsh 0.05
FT4 14
July 2023 - on 125mcg, felt so hypo, I was in europe and just felt drunk walking around all day, dizzy, so tired, brain fog like I have never seen before. Was on 125mcg for 3.5 months at least. Increased to 150mcg
tsh 1.09
FT4 13
FT3 4.2
August - on 150mcg here. Still feeling exact same, waited 8 weeks. No change at all in how I felt.
tsh 1.04
FT4 14
FT3 4.8 (highest FT4 result yet- but no change in symptoms AT ALL, like nothing)
Oct 2023 - on 175mcg, again feeling the exact same, nothing changed here
tsh 0.37
FT4 14
Dec 2023
tsh 0.04
FT4 16
FT3 4.6
I apologize for the length, but you've been very helpful and maybe you can see a trend in this data or numbers that are reliable to use?
My Ft3 doesn't correlate with me feeling well, it seems that my FT4 is what correlates with symptoms more so. Doc noticed this too. His goal was to get FT4 to around 18 again.
Tsh seems out of wack, and maybe stopping/starting caused that when I became overmedicated.
My numbers seem okay. They are not crazy out of range, FT3 is solid, and I have felt better on less. Just trying to understand what is the cause of my symptoms and why they're so severe with numbers like this.
If you have a chance to look at this I would be very grateful. Thanks!
Thyroid hormone levels are regulated through the HPT axis (hypothalamic-pituitary-thyroid) by a feedback inhibition system, and TSH often appears to become an irrelevant measure in the presence of exogenous thyroid hormone replacement that can skew these signalling pathways (many members including myself have below-range TSH combined with in-range thyroid hormone levels). This axis overlaps with others so becoming low in thyroid hormones risks affecting many other systems, and especially the HPA axis (hypothalamus-pituitary-adrenal) which controls the stress system.
When stubborn hypo symptoms linger it can be tricky to decipher if it’s the meds, the doses, deficiencies in the various essential co-factors, or a combination. As you previously found wellbeing on Levothyroxine I would suggest it is not the meds but possible nutrient deficiencies, elevated thyroid antibodies and/or cortisol issues, exposed by your sudden abstinence from Levo, and which now risks continuing to degenerate until addressed.
Your present labs are good evidencing enough free thyroid hormone in the blood stream, but thyroid hormone not only has to be transported around the body in the blood stream but converted by deiodinases (thyroid hormone enzymes), and actively transported into cells to bind to nuclear membrane receptors that control gene expression. All this requires adequate amounts of very specific cofactors.
You were previously deficient in Vit D, with low Vit B12 and no folate result. These together with iron are essential nutrients and if low may indicate other essential cofactors being low also such as zinc, selenium, magnesium, etc.
You were never overmedicated as your labs were never over-range. If you felt over-medicated this indicates (in my experince) either poor adrenal function secreting adrenaline, and/or a Hashi attack. You previously said you had thyroid autoimmune disease. This often requires enough thyroid hormones to prevent thyroid gland activity which can induce other unwanted activity (attacks thyroid peroxidase enzyme & thyroglobulin-key protein in the thyroid gland) that results in the thyroid auto-antibodies (Hashimotos).
If this were me I wouldn’t be changing Levo dose every 2 months or considering new meds, but staying with what you knew previously worked, and looking at three distinct areas that will encourage improved thyroid hormone function - optimising all nutrients, supporting the adrenals, and managing thyroid antibodies. You will need hormone stability of at least 6 months before making next assessment.
The symptoms I am having now, are the exact same as when I suddenly stopped levo. Brain fog and fatigue.
I am going to stay on 225mcg for at least 12 weeks, and hopefully this will be the dosage. My tsh will likely be undetectable.
When I stopped then restarted 200mcg levo after 17 days, within a week all hypo symptoms were gone and my heart rate starting shooting up. I couldn't sleep for almost 3 months straight. No FT3 result, but it may have been over range, we'll never know.
Something that happened when I was overmedicated was that my liver enzymes shot up sky high. He was worried I was drinking (I don't drink). We found it was related to being overmedicated because it dropped when I dropped my dosage to 125mcg.
Are there any nutrient tests, adrenal or cortisol tests that I can ask my doctor to do? How may I go about optimizing these?
My vitamin D is now 130 (75-250). I take 1000mcg B12 daily.
If 225mcg doesn't work for some reason, what should I consider for my next steps? Doc said armour thyroid, but I really don't want to get off synthroid since it worked so well for me in the past.
Yes, ironically liver enzymes can elevate in both hyper and hypothyroidism.
In hyper because the liver makes proteins that bind and transport thyroid hormone, and helps the body break down/detoxify unwanted thyroid hormones, the liver has to work extremely hard to keep up. In hypo all metabolism is slowed and hepatic function can decrease to such as extent that liver enzymes raise together with lipids and cholesterol. All mine were raised before medicating.
I medicate Armour myself but for you I would not be looking to introduce NDT at this stage. Some members with elevated thyroid antibodies have struggled with the ‘gland-molecular-mimicry’ aspect having their antibodies raise further and induce Hashi-attacks, whilst others experiencing cortisol issues have struggled with the introduction of the T3 contained within Armour.
I have read there is a hierarchy in the level of thyroid hormone med tolerances, with Levothyroxine being the most sympathetic to our ‘quirks’ (except in the presence of certain genetic mutations), followed by Levo with added T3, then NDT and lastly T3-alone.
If this were me I would be:
- Staying on 200mcg Levo as this was your previous feel-good-dose and is quite an adequate amount even for a man (too much thyroid hormone can be counterproductive through a process known as ubiquitination. T3 is the ‘active’ hormone but the higher T4 goes, the less conversion to T3 occurs until eventually you reach a tipping point where more become unusable RT3 - see link below).
- Optimising basic nutrients Vit B12, folate, Vit D and iron and ensuring levels are being maintained through testing. VERY IMPORTANT.
- Having selenium and zinc levels tested (I was totally deficient in zinc. Optimising these will not only help thyroid hormones to work better but help control thyroid antibodies.)
- Adopting a gluten-free diet to help control thyroid antibodies and reduce any chronic inflammation that can be an inhibitory factor for thyroid hormones good function.
All of the above actions will help support adrenals but additional help would be to ensure healthy sleep, rest, managing stress and maybe supplementing a targeted support such as Nutri Adreset which contains adaptogens. These help the HPA axis to 'normalise' or 'reset' and I have good experience of them but they can be powerful and don’t suit everybody so ensure to introduce very slowly, or use a singular approach such as ashwaganda as opposed to a combo. Your other alternative is to introduce an 'adrenal glandular' which I'm not keen on but other members have found to be helpful, so put out another post for more info.
You are too young to feel so unwell and if thyroid hormones aren't 'got-going' you risk them eventually making other hormones fail also. Expect symptoms to reduce slowly over many months (eg give yourself a year). Once I found my 'panacea' it took another 5 years to fully find and maintain good levels of health and fitness.
For advice on other nutritional supplements ask forum members who are better clued up than me, as I now manage on a multivit whereas you will need an individualised tailored supplement for each deficiency until you can maintain levels properly.
Lalatoot I read that you have stopped levothyroxine cold turkey before, do you have any insight for my situation? I stopped 200mcg cold turkey and then went back on it and became very overmedicated, so I lowered to 125mcg and have titrated back to 200mcg, and symptoms (of undermedication) are still here and severe, not sure what to do. Also, tsh is suppressed but I feel hypo.
John my TSH was under range on 100mcg levo and with my ft4 only 60% through range and I was still having lots of symptoms. That's why I decided to go back to basics and start again. I have no thyroid and was originally hyper so it was maybe not my brightest idea.I didn't totally stop levo. I went down to the lowest starting dose of 25mcg daily and felt great.
Obviously I became very hypo. I was all but bed ridden for the next 2 years. However being so ill meant that my ft3 was also monitored and once I had worked my way back to my 100mcg dose -which I did by Inc 25mcg every 3 months and bearing in mind I still had lots of symptoms throughout this time and could barely function - I was able to point out that I was a poor converter. My ft4 was 60% and my ft3 17% typically with tsh under range. This meant I got t3 prescribed which is when things began to really improve.
In your place I would be ignoring the tsh. It's the ft3 and ft4 levels and there place within their ranges that's important.
I found it necessary to keep my doctor on my side throughout the process so that they would listen to me. This meant following their protocol and then suggesting how things might work better for me. For that reason I would try your Doc's increase. If it works it works. If it doesn't they can't say you didn't follow their strategy and they then may be open to suggestions .
It will be a long process. It has taken me 5 years so far and things are still improving.
Wow, hope you are feeling better now. I appreciate your insight.
My doc is quite open to helping me feel better, not just having tsh in range. He mentioned armour thyroid if this doesn't work. Would rather cytomel so I can control everything easily.
with my FT4 at 16 (9-19) and FT3 at 4.6 (2.6-5.8), I seem to be converting okay? These numbers are solid too, so I don't get why I feel like crap, and also why my tsh is suppressed, likely undetectable at 225mcg.
Not sure what's going on, as I never had T3 prior but possibly if 225mcg doesn't work, that could be my next step?
Yes I would try 225mcg and then if that doesn't improve things over 3 to 6 months, give it time to work, look to other options.Don't expect to be totally symptom free. Some of our ailments are not caused by our thyroid hormones directly but are the resulting damage to our body from having to run on low hormone levels.
I'm away on holiday so have only skimmed through your post. I don't really have any ideas other than a long shot. I was severely hypothyroid with normal hormone levels due to the effects of endocrine disrupting chemicals. To cut a long story short my solution was to take simetihcone which slowly eliminates EDCs over a period of months. I believe it is available in Canada and is safe and cheap. You should not take simetihcone within a few hours of your thyroid medication as it might reduce absorption. You could give it a try for a few months.
Hey jimh111 , can levothyroxine overmedication lead to the tsh staying low/suppressed? When I stopped 200mcg cold turkey and then came back on, my tsh was 0.04 and FT4 18 (9-19), had every overmed symptom. It's now stuck low, at 0.04, after slow titration back to my original dosage of 200mcg. Prior to going off, my tsh was 1.46 and FT4 18 (9-19). And now 200mcg doesn't work for me, I feel super hypo with extreme fatigue and brain fog.
I'm not clear about what you are saying. If TSH is suppressed for a long time it can take a long time to recover or not recover at all. But you seem to suggest your TSH was 1.46 when you were on 200 mcg?
Jaydee1507 Any thoughts for my situation? Was fine on synthroid and went off cold turkey, now the dose I use to be on, no longer works. And my tsh is suppressed when it never was prior.
Looking at your last post your B12 is on the low side and folate not tested.
Have you now had folate tested and started work on getting all key vitamins to optimal?
Your body has been through an awful lot with sudden lack of thyroid hormones and each of us will likely respond differently to that. If vitamins aren't optimal then our thyroid hormone cannot work properly.
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Suppressed tsh when on T3
Normal TSH but many hypo symptoms
Suppressed TSH
Suppressed TSH
Why have my hypo symptoms returned despite TSH dropping below range?
