how to come off thyroid meds?: At some point... - Thyroid UK

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how to come off thyroid meds?

joziel profile image
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At some point relatively soon, I might need to come off thyroid meds to see if I need them. How do I do that?!

I've done some researching and reading around this and there seem to be 2 schools of thought. One is to wean off gradually and the other is to go relatively suddenly, because any amount of T3 will shut off your own production....

I won't go into the history and why etc (altho happy to explain), but just say that it was borderline whether I needed them or not and it was a trial to see if it would help some severe night time symptoms I was having.

I'm currently on 50mcg T4 and 30mcg of T3/day (in 3 divided doses). I've been on them since August last year, so about 6 months.

Should I come off the T3 first? Then T4? Or vv? And how suddenly? Has anyone else had to do this? I might end up trialling T3 only before coming off them, just so I've covered all bases (rT3 is the issue). So I may be on only T3 when I need to come off.

Of course I'll take advice from my doctor but it's not something many people need to do and I don't really trust doctors much on thyroid issues(!) even private ones that prescribe T3!

By the way, when I first went on thyroid meds I was put on only 15mcg of T3. This was no where near a full replacement dose but even this tiny amount of T3 turned off my own production of T4, which then went way below range (having previously been high in range) - so I am wary of weaning off to lower doses due to this situation.

Thanks!

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joziel
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greygoose profile image
greygoose

Is this your doctor's idea? If so, you're right not to trust him! They haven't a clue.

it was borderline whether I needed them or not

So, can you tell us what your lab results were before you went onto thyroid hormone replacement? And what they are now?

A doctor's idea of borderline can often be a bit weird. But, in the real world, a 'normal' (euthyroid) TSH is around 1. At 2 is shows your thyroid is struggling/failing. And at 3 you are technically hypo, and in some countries you would be treated at that level. But, the NHS likes you to suffer until it gets to 10 before they will admit that you are overtly hypo. In between the top of the range - which is always over 4! - and 10 they will say you're 'borderline', or sub-clinical, when you really aren't.

I was put on only 15mcg of T3. This was no where near a full replacement dose but even this tiny amount of T3 turned off my own production of T4, which then went way below range (having previously been high in range) - so I am wary of weaning off to lower doses due to this situation.

Well, obviously it would turn off your own production of T4 - T3 too. Taking thyroid hormone replacement of any kind - especially T3 - reduces/suppresses TSH production, and the thyroid cannot make thyorid hormone without the stimulation of TSH. If you reduce your dose of T3 far enough that the TSH rises - and you have to reduce it a hell of a lot - your thyroid would start back making as much thyroid hormone as it is able.

I realise this isn't answering your question, but most people on here will just say 'you don't stop your thyroid meds' anyway. So, I'm trying to be as helpful as I can. If you're determined to do it, I know you will whatever anyone else might say. But, on the subject of how you should do it the answer is: it depends. It depends on how your body reacts. And you won't know that until you do it. I did it once, for reasons I won't go into but see my profile, and I just stopped taking 225 mcg T3 only over-night. But, as I always say, I have the hide of a rhinocerous, not in the least bit sensitive, and that was fine for me. But it would be shattering for some others. Only you can know your body, so only you can really decide. Doing it gradually would probably be kinder - or would it? I don't suppose anybody really knows because it's not the sort of thing they research. And that's about all I can say. :D

joziel profile image
joziel in reply to greygoose

Thanks greygoose, I feel a bit alone with all this and like I am in uncharted territory really.

The background is that about 3 weeks after beginning HRT (2 years ago now), I suddenly got severe symptoms at night. They are:

Heart beating hard and faster than usual (100bpm, even in my sleep, which wakes me). Can see my aortic pulse in my chest and hear my heart when my head is on the pillow.

Inner tremors which at their most severe feel like the bed is moving under me and are through my whole body. At their least severe, it feels like a light fizzing or tingling in my feet only.

Hypnic jerks - every time I began to fall asleep, I'd startle and wake up again. My body didn't want to let me fall asleep.

During the day I was fine, except for the tingling feet till late morning and from early evening. But all this caused severe insomnia - sometimes just 3hrs of light sleep. I have resisted taking sleep meds due to side effects long-term and because I wanted to treat the cause.

After stopping HRT for 5 months (did nothing), increasing gradually (still doing that - it turns out I'm a poor absorber so I'm now on 7 pumps and only 334pmol of estrogen), experimenting with utrogestan (makes no difference), tested ferritin and had an iron infusion (now 211), tested B12 and did EOD B12 injections after ordering them from Germany (B12 was 495 but that was when taking a B complex), D3, folate are all optimal, took various electrolytes, did 4 point saliva cortisol (totally normal, but have just repeated that with another lab) and probably more that I've forgotten......

SO - I tried everything... I had done thyroid tests in all that but only TSH and free T4 via my GP, which were always normal. By normal I mean - really normal, around 1-2 and T4 high optimal.

Then I did a Medichecks thyroid panel which included free T3 and antibodies. Antibodies were very low and fine. Free T3 was in range but low. I had a quick chat on the phone with a private thyroid doctor who said he'd suspect high rT3 with my high T4 and still lowish T3. And that I should test rT3.

So I tested rT3 and that test came back as:

TSH 1.37 (0.270-4.2)

free T3 3.9 (3.1-6.8)

free T4 18.6 (12-22)

rT3 32 (8-31)

It seemed that I had a conversion problem - but I'd done everything listed on the conversion list (iron, taken selenium for ages, iodine). (By the way I should add that I'd had a slow metabolism for over a decade, sometimes could eat only a banana a day and still not lose weight, dry skin, dry eyes, cholesterol on the high side despite being slim - I was determined not to gain weight but it has been a battle.)

So as an experiment and due to the severity of my symptoms, I was put on 15mcg of T3 to 'clear the rT3'. This did what I described above: It tanked my free T4 and I felt awful. Results then were:

TSH 1.15

free T3 4.3 (3.1-6.8)

free T4 9.7 (12-22)

Total T4 54 (59-154)

rT3 15 (8-31)

Thyroglobulin antibodies 14.9 (0-115)

Thyroid peroxidase antibodies 12.8 (0-34)

By the way: Even taking no T4 and even with my own T4 below range, I still managed to rustle up 15 on the rT3.

Then the doctor said 'oh, NOW we've revealed the REAL problem - you need T4' - as if this had been the 'disguised' problem all along. (By this point I was starting to realise this doctor didn't really know what she was doing.)

I was then put on 50mcg of T4 and the T3 was kept the same at 15mcg. Results then were:

TSH 0.026 (0.270-4.2)

free T3 5.1 (3.1-6.8)

free T4 13.8 (12-22)

rT3 20 (8-31)

NB: The rT3 went up to 20 with the addition of 50mcg of T4. I still felt really bad with the night time symptoms and all this was taking blimming ages. So I was told I could increase my T3 up to 30mcg (still on 50mcg of T4). That's what I've just done but I haven't done the test yet - got another couple of weeks to go.

From my symptoms (slow metabolism etc), I think the rT3 has gone up further now I've increased my T3. It's as if my body wants to burn slow and not fast, so now I've given it exogenous T3 at a higher dose, it's like 'aha, I'll just turn this T4 into rT3 instead'... it's so determined to do this. But I'll confirm that with bloods in a couple weeks. (It costs a fortune to keep testing rT3 by the way.) Symptom-wise, I am the best I've been - but far from perfect at night. But I am now getting about 5hrs sleep on a good night, and it's good restful sleep - then I wake early and can't go back to sleep.

This is why the final thing to experiment with here, is T3 only - by stopping the T4 and increasing the T3 a bit more. After that I will have thoroughly explored all things thyroid when it comes to these symptoms.

During all this I've been increasing my estrogen. I was on only 2 pumps when all this began last August, but when 4 pumps only saw me at 280pmol, I realised I was going to need to go higher. I'm with Newson Clinic for HRT and they say many women need between 400-600pmol of estrogen and some need 1000+ - so I haven't fully explored that until I've seen what it's like to get the estrogen higher. I will probably need to switch from gel as I have run out of body parts to apply it to now...

Whilst I'm better than I was last year, I don't know if it's due to the thyroid meds or increasing the estrogen. I don't want to end up superstitiously on thyroid meds (especially T3) for the rest of my life if I don't need it. So the only way to tell, seems to be to come off them and see what happens.... (not ready for that yet and will first try T3 only - but worrying about it already).

Whether or not the night time symptoms are due to thyroid, I do believe that my slow metabolism, dry skin, eyes, even heavy periods, have been due to this low T3 and high rT3 situation. So it might still be best to stay on meds, even if the night time symptoms are due to something else - to fix that lot.

Sorry to have written an essay... Oh, I did some googling and read some experiences of body builders who go on and off T3 fairly frequently in preparation for competitions. Again, the same 2 schools of thought were there: That if you wean off, you are just suppressing your own thyroid production even if you are taking a tiny dose of T3, so will feel worse for longer than if you stop cold turkey and your thyroid can kick in more quickly. That seems to be upheld by my first set of results on 15mcg of T3. (Not sure how that relates to taking/stopping T4.)

Of course if I trial T3 only and feel brilliant and symptoms totally resolve, then I won't want to stop it at all... although I will also wonder if it's due to the increased estrogen and might still need to do the experiment...

FallingInReverse profile image
FallingInReverse in reply to joziel

Were these your results prior to taking any thyroid hormone replacement at all:

So I tested rT3 and that test came back as:

TSH 1.37 (0.270-4.2)

free T3 3.9 (3.1-6.8)

free T4 18.6 (12-22)

joziel profile image
joziel in reply to FallingInReverse

Yes, except you left off the rT3 which was

rT3 32 (8-31)

FallingInReverse profile image
FallingInReverse in reply to joziel

Here’s a good overview of why I left rt3 off:

healthunlocked.com/thyroidu...

The general view, although of course never a 100% consensus, but pretty close from those with more knowledge of pathology and cellular mechanisms - it’s not the most useful or actionable test for many reasons.

joziel profile image
joziel in reply to FallingInReverse

Yes, but that's debatable really - which is why I began this whole experiment in the first place. I did actually consult with 3 private thyroid doctors (don't know if I can mention names here, but they are GPs who are thyroid specialists and offer online consults in the UK only dealing with thyroid patients) and they all confirmed the validity of rT3 given the low T3 and the high free T4. The first dr offered a free 15min consult and suggested the rT3 test would be a good idea. The second doctor put my on the trial of 15mcg of T3 and the T4, then got sick and had surgery and the third doctor is much more liberal with T3 and I feel knows more and I trust him. He's in Ireland. I think I've said enough there to identify them without names!

It's a moot point now though, because I am on the thyroid meds and so I will try to get them optimal and see what it's like to be on T3 only (probably) and then will try to come off them and see what happens - so my original question about how best to come off them remains...

FallingInReverse profile image
FallingInReverse in reply to joziel

My thoughts.

1) I am having trouble following the exact chronology in your story, but is it correct that your symptoms started a few weeks after starting hrt. Just reading your post, the first thing I thought was - why not focus on that one thing.

Because

2) Pre t4/t3, your TSH was indeed good! You have no antibodies (assuming you had both TPOab and TGab tested) (which on its own isn’t conclusive but in context is also a good indicator)

Yes, T3 was low. But you did take a leap to suppress everything to raise that. Yes - the catch 22 is there is no such thing as a top-off dose of thyroid hormones.

My opinion - I would start by weaning off vs cold Turkey. You could always go cold Turkey later on depending how it goes.

I too would do T3 first with the goal of a less volatile transition back to natural thyroid hormone production.

T3 does have a shorter half-life and a more immediate impact on thyroid function compared to T4. By tapering off T3 first, you give your body time to adjust gradually to the reduction in exogenous hormone levels. Once T3 has been tapered off, you can then reduce the dosage of T4, allowing the body's natural feedback mechanisms to resume control over thyroid hormone production.

Of course you can only hope (I think) to return to your upper range T4 and your low but in range T3.

But when you said you didn’t want to take sleeping meds bc you want to address the cause, which is how I approach my own health, I can see the value of backtracking on this even as symptoms return. I do the same thing - hold out as I make small tweaks because we are all playing the long game.

When I first read your title as I bet lots of us did - I thought - don’t do it! But my layman’s opinion is above. I am not an expert, just a hypo sufferer managing the same balancing act. Take it together with all other opinions!

edit: reiterating other replies, if you are set on coming off, of course you will. But low T3 causes symptoms. The tsh and t4 create ambivalence. Greygoose has more supporting details for how to decide what to do.

joziel profile image
joziel in reply to FallingInReverse

Thanks, yes I understand that for most people it would be a bad idea to try to come off meds and people like to kid themselves they could manage without when they probably can't. But I'm in a weird situation where it was a push to think of thyroid as the cause of things.

Yes, I did fully experiment with everything to do with HRT for 1.5 years before going on thyroid meds. I stopped it for 5 months, as said, and then I introduced it very gradually and incrementally - before realising that actually I am a poor absorber and was just going very slowly and not getting anywhere, so more recently I have been focussed on increasing. I started out on patches but when 75 patch only resulted in 198pmol, I was switched to gel. Now I am on 7 pumps of gel with only about 334pmol I am probably going to be switched again to Sandrena (more concentrated gel) with the goal of at least getting to be 400-600pmol.

I have tried no utrogestan, 100, 200 and 300mg nightly of utrogestan. That makes no difference - I seem very tolerant of any amount of progesterone. It's the estrogen, I think, behind things.

The symptoms were so bad, I couldn't do one thing at a time or this whole thing would have taken 10 years (B12, iron infusion, HRT variables, thyroid.....) - I had to throw everything at it and then remove things once improved instead....

FallingInReverse profile image
FallingInReverse in reply to joziel

I just thought of one more thing - opinion for consideration - you do have t3 on the low side. T3 is indeed the most correlated to symptoms of the things we test. You know this.

Was thinking about you saying - symptoms so bad, had to do lots at once. The reason we don’t recco that approach is exactly the situation you are in now. Whether you feel good or bad - you have zero way of knowing why, and therefore zero chance of making an informed decision on what to do next.

Further - thyroid hormone adjustment done right is a series of single small changes done in 6-8 week time frames. Multiple 6-8 week time frames.

Of course anyone can change as much as they want in as short a time as they want. But there’s a good chance that haste just lengthens the process. Backing out of things, starting again, not being able to get back to where we started.

Thyroid issues and menopause/hrt issues are a double whammy. Just pick your time carefully. Set aside 6-8 weeks for each little change.

You’ve already taken so long on the thyroid hormone suppression, you prob owe it to yourself to get your T3 up before you take MONTHS to reverse out of the whole experiment. And although “debatable “ as you say, this post goes into further detail why you should ignore rt3.

I have learned along with most of us that doctors - however willing and well intentioned- somehow know very little about the thyroid.

joziel profile image
joziel in reply to FallingInReverse

Thanks I understand it's problematic to change many things at once, but when you are basically getting 3 hours of light sleep a night and can't function, start to hallucinate and can't work, then feeling functional becomes more important before figuring out what the cause is. I can only optimise everything and then try changing back and taking time with that, when I'm not suffering...

I agree I've gone so far with the thyroid stuff now I need to see it through and try everything with it before I back out of it all. My T3 should be at the top of the range though - as it was 5.1 in the last test (6.8 top of range) and since that test I've doubled my T3 from 15 to 30 mcg. Despite that, I'm still eating basically one meal a day. Which is why I can only think that the T4 is converting to rT3 and acting against the T3 in some way. To rule that out, I probably need to try T3 only and at least see if that enables me to eat more normally - whatever else it does.

FallingInReverse profile image
FallingInReverse in reply to joziel

Well to be practical, I hope you study the info about rt3 in this post and otherwise on this board. One can say it’s up for debate, but there isn’t anything to debate about the things happening in your blood that Greygoose explains.

I only eat one meal a day still. That has nothing to do with rt3 either.

Also - when you T4 dropped to ~9, that was after being on your first small dose of T3 only? As gg said - when t3 begins, and metabolism improves , many (most?) people see a drop in T4 and increase Levo. So that’s as expected.

Also, even if you are a poor converter - it doesn’t mean you should be on T3 only by default. Anyways, now that you are on T3, as I’ve been told, you cant actually say whether you are a poor converter or not.l so you just have to carry on.

Your goal (generally) to start can be to target Upper range about 75% through for both T4 and T3.

Is this your current dose - 50mcg of T4 and T3 15mcg?

You asked how to come off the T meds. You got some input for that. But also I’m not sure there was anyone here who would do that if in your situation.

If I was you (actually it’s very similar to what I DID do), I’d be increasing Levo first. It’s more stable and it’s also likely you are converting at some rate.

Although it’s true that you don’t “need” a mid-high T4 once on T3, in my situation I’m aiming for it before I optimize my t3. T3 is short acting and to be honest a bit of a hassle for me. I don’t know if I need it, I’m not sure if you do either. But I am losing track of the sequence for you so maybe you do know for sure.

The other issue is that you are still mixing up your hrt, so whatever change you make and however you feel - you won’t know what’s causing it, good or bad.

joziel profile image
joziel in reply to FallingInReverse

Yes, I study all the info on rT3. Including this kind of info: neuroendocrinology.org/what...

And also take into account my own situation and what seems to make most sense.

My metabolism hasn't really improved much at all. My current dose is 50mcg of T4 (bringing my only just into the bottom of the range) and 30mcg of T3.

Since adding in 50mcg of T4 caused my rT3 to increase from 15 to 20, I don't really want to increase T4 more. I will end up just where I was before I was on any thyroid meds - if I can have high natural T4 and low T3, then adding more T4 isn't going to help because clearly I'm not converting it. (Whether or not we buy the rT3 thing.)

Yes, it's good to know how to come off the thyroid meds if I want to try that. It's some months away even if I do it. But first I have a few more things to try...

greygoose profile image
greygoose in reply to joziel

OK, I see the real problem: idiot-endoitis! What is she blathering on about rT3 for! RT3 is not the problem, it's a normal function. Anyway, let's take things is order and try and sort this out...

(Hypnic jerks - every time I began to fall asleep, I'd startle and wake up again. My body didn't want to let me fall asleep.)

Hmmm… Reading this and your other symptoms made me immediately think: adrenals. But, you say that our cortisol levels are ‘normal’. But, it does depend on your definition of ‘normal’. But, it wouldn’t be surprising if it wasn't 100% ‘normal’ due to your low FT3…

(tested B12 and did EOD B12 injections after ordering them from Germany (B12 was 495 but that was when taking a B complex)

So, what was your B12 level initially? 495 is still a bit on the low-side. Should be at least over 550. But, you still need to take a B complex even when having B12 injections, because the Bs all work together and need to be kept balanced. But, make sure you get one with methylcobalamin and methylfolate.

(I had a quick chat on the phone with a private thyroid doctor who said he'd suspect high rT3 with my high T4 and still lowish T3. And that I should test rT3.)

Well, who’s a genius then! If your FT4 is high then your rT3 is obviously going to be high. That’s how it works. You always have some rT3 in your system because only about 30% of T4 is ever converted to T3, 30% to rT3 and the rest excreted. But, if your FT4 goes too high (and ‘too high’ is different for everyone) more will be converted to rT3 and less to T3. BUT the rT3 itself is not a problem. It is inert, doesn’t cause symptoms and is quickly converted to T2. This happens to prevent too much T4 being converted to T3 and causing you to go ‘hyper’.

The real problem is the low FT3, not the rT3. And it’s not even worth testing rT3 because it doesn’t give you any information you can’t get from the other tests: to know how well you convert just test FT4 and FT3 at the same time and compare the results as percentages through the range. The FT3 should be just slightly lower than the FT4 percentage-wise. If the gap is wide then you are a poor converter.

There are many, many causes of high rT3 and only one of them has anything to do with thyroid. So, there are millions of people walking around out there with high rT3 completely oblivious because it doesn’t do anything to them.

(It seemed that I had a conversion problem - but I'd done everything listed on the conversion list (iron, taken selenium for ages, iodine).

Well, iodine has nothing to do with conversion. Quite the reverse. In fact, conversion is the removal of one iodine atom from one molecule of thyroid hormone. T4 is called T4 because one molecule has 4 atoms of iodine, and one is removed to make T3. But, taking extra iodine is probably the worst thing you could have done because excess iodine is anti-thyroid, and would have made the problem worse.

Seems my reply is too long so will have to continue below.

greygoose profile image
greygoose in reply to greygoose

(By the way I should add that I'd had a slow metabolism for over a decade, sometimes could eat only a banana a day and still not lose weight, dry skin, dry eyes, cholesterol on the high side despite being slim - I was determined not to gain weight but it has been a battle.)

All symptoms of low T3. Which is what hypothyroidism is.

(So as an experiment and due to the severity of my symptoms, I was put on 15mcg of T3 to 'clear the rT3'.)

Such rubbish. The rT3 wasn’t causing the symptoms, the low T3 was.

(This did what I described above: It tanked my free T4 and I felt awful.)

Of course it did. That’s what T3 does. Quite why it does that, nobody knows. But it’s debatable whether or not it was the low T4 that made you feel awful. T4 is basically a storage hormone that doesn’t do much until it is converted into the active hormone T3. Some people – like me – are perfectly fine without any T4 – sometimes they even feel better without it. Other people need varying levels. It’s an individual thing.

(Results then were:

TSH 1.15

free T3 4.3 (3.1-6.8) Low for someone taking 15 mct T3

free T4 9.7 (12-22) To be expected.

Total T4 54 (59-154) Pointless test.

rT3 15 (8-31)

By the way: Even taking no T4 and even with my own T4 below range, I still managed to rustle up 15 on the rT3. Of course you did! As I explained above, but that’s fine, no problem.

(NB: The rT3 went up to 20 with the addition of 50mcg of T4.)

Irrelevant.

(I was told I could increase my T3 up to 30mcg (still on 50mcg of T4).)

In one go?!? What’s she trying to do, kill you? T3 should never be increased by more than 5 mcg every six weeks.

(From my symptoms (slow metabolism etc), I think the rT3 has gone up further now I've increased my T3.)

False deduction. rT3 has nothing to do with your symptoms. And it can only be made from T4, not T3.

As I explained above, T3 is made by removing 1 atom of iodine from 1 molecule of T4, which has 4 atoms of iodine on it. But it has to be a specific atom in a specific position. If a different atom is removed, it become rT3. You cannot convert T3 to rT3.

(It's as if my body wants to burn slow and not fast,)

Because of the low T3.

(so now I've given it exogenous T3 at a higher dose, it's like 'aha, I'll just turn this T4 into rT3 instead'...)

Nope. That’s not how it works.

(It costs a fortune to keep testing rT3 by the way.)

I know it does. So stop testing it. It’s irrelevant. If your FT4 is low, your rT3 will also be low. If it isn’t, it has nothing to do with your thyroid or your symptoms.

(Symptom-wise, I am the best I've been - but far from perfect at night. But I am now getting about 5hrs sleep on a good night, and it's good restful sleep - then I wake early and can't go back to sleep.)

That does sound like adrenal fatigue – which wouldn’t be at all surprising.

(This is why the final thing to experiment with here, is T3 only - by stopping the T4 and increasing the T3 a bit more.)

Indeed. But you’d probably have to increase it quite a bit more. Probably to about 60 mcg – but in 5 mcg increases only!

(Whilst I'm better than I was last year, I don't know if it's due to the thyroid meds or increasing the estrogen.)

Increasing the T3 has surely had a positive effect, but it could be a combination of both. How is your progesterone?

(I don't want to end up superstitiously on thyroid meds (especially T3) for the rest of my life if I don't need it.)

Superstitiously?

But you do need it! Your FT3 was ridiculously, dangerously low. Every single cell in your body needs T3 to function correctly, and if they don’t get enough – or none at all – all sorts of problems can arise. You cannot live without it.

Whether or not the night time symptoms are due to thyroid,)

More likely to be adrenals.

(I do believe that my slow metabolism, dry skin, eyes, even heavy periods, have been due to this low T3 and high rT3 situation.)

Low T3 yes, high rT3 no.

(Oh, I did some googling and read some experiences of body builders who go on and off T3 fairly frequently in preparation for competitions. Again, the same 2 schools of thought were there: That if you wean off, you are just suppressing your own thyroid production even if you are taking a tiny dose of T3, so will feel worse for longer than if you stop cold turkey and your thyroid can kick in more quickly. That seems to be upheld by my first set of results on 15mcg of T3. (Not sure how that relates to taking/stopping T4.)

Not at all the same situation. But I can’t see how they work out that weaning off slowly would suppress your thyroid production. Whether you go slowly or cold turkey the TSH should (I say ‘should’ because it doesn’t always) slowly rise and stimulate the thyroid to make thyroid hormones. I think there’s a bit of misunderstanding going on there.

And as I said, it depends on the person which method is best…

joziel profile image
joziel in reply to greygoose

Wow, there's a lot of info there....

Let me see if I'm understanding right... So, it's my free T3 level which is important - not my rT3? I've read around rT3 quite a bit and come across the various opinions on it and the jury (in my head) is still out a bit really.

But all I can say is that there does seem to be a connection with symptoms and rT3 - and it's not just about free T3. I mean, my free T3 level on my last test was 5.1 (top of range was 6.8). Since that test, I increased my T3 from 15mcg to 30mcg, so we might think that my T3 now is pretty much at the top of the range. Despite that, I am battling slow metabolism issues. I'm going out for Valentines Day lunch tomorrow and today I've basically eaten breakfast and a snack midday. Yesterday I ate the same. After going out for lunch it will probably take me at least a week to get back to my 'normal' weight.

Last year, before going on thyroid meds, I learnt that one cause of high rT3 is fasting. But because my metabolism is so slow, in order not to gain weight, I basically *have* to fast. I can eat normally for a day (not binge or eat too much, just what a normal person might eat) but then I will put on weight and need to reduce food intake for several days afterwards - which is essentially fasting, and could drive up the rT3. So I decided that I would let myself put some weight on, to see if I could somehow get out of this vicious cycle. I put on a stone. (I was 9 stone 4lb.) At which point, I stopped, because I was going to end up obese.

That way of 'being' is still in operation now, with a pretty high free T3 level - I can only assume because the rT3 is high. Every now and again (unpredictably) for some unknown reason, this shifts and I can miraculously eat like a normal person for a few days.

As for adrenals, I've done a 4 point saliva cortisol test which was completely normal. By that I don't just mean in the normal range, I mean optimal. High cortisol in the morning, low at night, right where it should be. I've also done two AM blood cortisol tests which showed high (in range) cortisol, where it should be. I've just repeated the 4 point saliva test again with a different lab, just in case - but mainly to placate the thyroid doctor I'm working with.

But you do need it! Your FT3 was ridiculously, dangerously low.

When it was 3.9 (3.1-6.8)?

So essentially, you believe I do need thyroid meds, to increase that T3? I can tell you that increasing the T4 will only see the situation I had before thyroid meds, when my free T4 is nice and high but the T3 isn't, so whether conversion issues or rT3, is a moot point really - because the answer - more T3, is the same right?

In one go?!? What’s she trying to do, kill you? T3 should never be increased by more than 5 mcg every six weeks.

No, not in one go. In 5mcg doses, each week. Two doctors gave that same advice.

greygoose profile image
greygoose in reply to joziel

So, it's my free T3 level which is important - not my rT3?

Exactly.

my free T3 level on my last test was 5.1 (top of range was 6.8). Since that test, I increased my T3 from 15mcg to 30mcg, so we might think that my T3 now is pretty much at the top of the range. Despite that, I am battling slow metabolism issues.

Even if your FT3 is at the top of the range, it may not be high enough. Ranges are only rough guides, not to be taken as imovable. Could be you need it higher still. In any case, changes are not going to happen instantly, it takes time for things to change.

Last year, before going on thyroid meds, I learnt that one cause of high rT3 is fasting.

The occasional fast isn't going to hurt, it's long-term food deprivation that does it. Because we need calories to convert, so if you cut out the calories your conversion is obviously going to suffer, so more T4 is converted to rT3. And it does that to preserve energy, because calories are energy. People are always talking about things like calories and rT3 and antibodies as if they are the enemy. They aren't. They exist for a reason.

That way of 'being' is still in operation now, with a pretty high free T3 level - I can only assume because the rT3 is high.

Another false assumption. rT3 is inert. It doesn't do anything. Besides, you don't even know if your rT3 is still high.

As I said before, there are many, many reasons for high rT3 and the majority of people who have rT3 are totally unaware of it because it doesn't do anything. If it made people put on weight, 95% of the population would be obese! (I just made that number up, I don't really know how many people have over-range rT3, but given the number of reasons for having it, it wouldn't surprise me if it were 92% of the population.)

I've just repeated the 4 point saliva test again with a different lab, just in case - but mainly to placate the thyroid doctor I'm working with.

So, does he suspect adrenal fatigue?

But you do need it! Your FT3 was ridiculously, dangerously low.

When it was 3.9 (3.1-6.8)?

But you do need it! Your FT3 was ridiculously, dangerously low.

When it was 3.9 (3.1-6.8)?

Yes.

I can tell you that increasing the T4 will only see the situation I had before thyroid meds, when my free T4 is nice and high but the T3 isn't, so whether conversion issues or rT3, is a moot point really

I never suggested increasing T4, or even taking it. It's the T3 you're having problems with.

when my free T4 is nice and high but the T3 isn't, so whether conversion issues or rT3, is a moot point really -

The rT3 is the result of the conversion problem, so it's not either or.

No, not in one go. In 5mcg doses, each week.

That's still too fast to increase. Two weeks at very least.

joziel profile image
joziel

Thanks, yes, I'm in Paul's FB group and have both his books. I've read that and similar about rT3. The fact remains that even with high fT3 levels as I now have, I can eat very little without gaining weight - and this is correlated with high rT3 levels. (Since my body is hellbent on converting any and all T4 I have to rT3.) When my rT3 drops, I can eat normally. So, whether rT3 is cause or effect, it is a marker of the process affecting me. Until now it has been random (seemingly) when my rT3 drops, but I am hoping T3 only will get around this stupid situation and let me eat more than one meal a day...

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