It's been some time and I've been gradually adding t3 at 2.5mg per week. I now take 87.5mg per day of thyroxine, split morning, afternoon and eve. And with that, I take 10mg t3 morning,10mg t3 afternoon, and 7.5mg before bed.
I hoped I would get more out of this than I am, I've gotta say. I would say my sleep has improved to an extent, but otherwise improvements are pretty minimal. My hair is a little thicker. Maybe I'm slightly less foggy/flat?I dunno tho, I've just had a week from hell with a period that absolutely knocked me, so it's hard to say. I'm certainly not consistently better.
I know that any more than 7.5mg at night keeps me awake. I tried adding another 2.5mg to the afternoon, and felt a dense brain fog that to me felt like I wasn't tolerating the dose (worse than the usual headaches and brain fog that often comes for me with dose increases). I will try adding 2.5mg to the AM but I suspect it'll go the same way.
Is it normal to add so much t3 and feel such little change? My t3 was very low prior to starting combination therapy.. just below range if I recall correctly (I can dig up the results but I don't much see the point rn.. it was low and my conversion was poor).
My method has been to continue adding t3 until I a) feel better, or b) can't tolerate any more. And I guess the hope was that a and b would coincide?
I haven't tested recently because I haven't been on a stable dose for long enough. I will tho once I've stopped fiddling with t3 doses.
I guess I'm looking for some reassurance or thoughts or something.. I just would've expected more. And I'm small, like 52kg.
At what point does one ditch the t4 and try solo t3 therapy?
With thanks in advance for anything you have for me
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HornM
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Ahh ok. Yes mcg sorry! Everyone's different with their sensitivity to dose changes; I'm a go low and slow person because of the side effects I can experience. But also I don't want to miss my sweet spot, and for me 2.5mcg can absolutely be detectable.
What made you opt for t3 alone? Did you gradually increase your dose further once off thyroxine, or? Curious about this choice and what led you to it
Even though you're only increasing by tiny amounts, it's possible that you are increasing too fast, and not giving your body enough time to adapt to each dose change. I would give it at least two weeks between each increase.
Ok. I guess I thought I'd could afford weekly given how tiny the dose change is. I hear you tho - thanks grey goose. Do you mean to say I might be in a better position than I think? Im confused about whether the effects of t3 are felt immediately or not..
I think so, yes. You're now on 27.5 mcg T3 - which might actually be too much for some people, especially with the T4 dose you're taking - but your body probably hasn't had time to catch up with that. It's true that some people do feel the effects of T3 pretty quickly - although instantly is expecting a bit much - but not everybody. The body can be slow in reacting. Especially if you were hypo for a long time before starting thyroid hormone replacement. The body will have shut down a lot of T3 receptors and will only open the again when it's very sure that the dose is going to be constant. Your body is probably a bit confused, at the moment. Myself, I think it might be a good idea to stop there - or after the next increase to 30 mcg, as you wish - and hold for six weeks, and then get tested, to see where you are. Normally, one would do that at 20 mcg. It's good to listen to your body and give it what it wants, but if the body is confused, blood tests are a very good back-up. Sometimes, what you interpret as still having symptoms of under-medication, are actually symptoms of over-medication. The two can be so alike.
Thanks again greygoose. Your advice is on point with my intuition - I will pause at 27.5mcg and test at the 6 week mark. I'm really sensitive; and I don't just mean prone to side effects, I mean very perceptive when it comes to changes in my body. Because of that I highly doubt I'm overmedicated, although what I'm hearing now is that it might take my body some time to catch up with its receptivity. I was hypo for many years pre diagnosis and am in a sort of CFS state now. I haven't worked for 2 years and I just want it to work so bad.
I understand. And that can be dangerous because there's always the temptation to increase too fast. But, you know the old saying? More haste less speed.
Yes, I know. Because your increase were so tiny. But it's not just about the size of the increase, it's also about the amount of time you give the body to adapt.
Yeah.. I wish I had come to the forum with all this sooner. I've been wondering what's going on for a little while.I wonder, do you think it's worth my dropping to 20mcg and testing after 6 weeks? If it's possible im going to have an overmedication scenario on my hands...
No, personally, I wouldn't. Unless during that six weeks you start to feel over-medicated. Being over-medicated for a couple of weeks is no big deal. If your FT3 comes back massively high, just drop the dose by 5 mcg when you get the results. I take it they will be private labs, not involving your doctor?
I had increased to 30mcg about 2 weeks ago, taking 10mcg t3 am, arvo and eve. I started struggling to fall asleep, feeling stimulated for several hours into the night, and dropped back to 7.5mcg in the eve as I had been sleeping really well previously. Since then tho, now that I think about it, it hasn't been as easy for me to fall asleep at night, even tho I've returned to a dose that was causing me to fall asleep in a healthy manner before. And now of course I'm wondering if my body is becoming more receptive in general. Maybe it is too high a dose. Ah. I dont know.. is sleep a good marker?
No it's through my doc. He's pretty clueless tbh tho. I have the blood request, and if it comes back high I'll just tell him I'm lowering my dose. I think it'll be that simple. Last time my t3 was through the roof because I'd taken my meds in the AM (testing for other things at the time), and he just took my word for it..
I don't think sleep is a good marker, no. Because so many things can affect it. You may be going through a temporary blip due to other factors. I'm the same. My dose has been the same for years, but the past few weeks, what with the heat wave we've had, and an infection I appear to have this week, my sleep patterns have been shot to pieces. But, it will pass.
Most doctors are pretty clueless when it comes to thyroid. As long as he doesn't insist he knows it all, and you're just a stupid patient! So many of them are fixated on the TSH, which is going to be suppressed anyway, with your dose of T3. If he's one of those that just lets you get on with it, then you are truly blessed! lol
So, basically, it's up to you. If you think you'd be happier going back down to 20 mcg - although I think that's too drastic, 25 at most - then that's what you should do. Then, reset the clock and hold that dose for six weeks before retesting.
Yeah.. you're right re sleep. I know mine is very affected by emotional stress, and I've had a rough few days with hormonal/mood disturbance.
My doc initially tried on all the same old BS re tsh and such. He tried telling me adding t3 was a waste of time and t4 is perfectly effective, etc. I was like, 'um, I'm living proof it's not', and now I think he just accepts he doesn't really know what he's talking about tbh. So yes, I'm blessed in the sense you say!
Roger that. I appreciate your advice. No lower than 25, I agree. Now.. time for some waiting!!
Thanks so much greygoose.. I'm sure we'll hear from me again! I hope good sleep returns to you soon
Clearly we are all different but Increasing T3 every 2 weeks is far too fast. It takes 6/8 weeks at least for the body to adapt to a hormone change and at a faster rate you are very likely to miss your "sweet spot"....and confuse your systemI understand your haste ( been there) but it slows down rather than speeds up the process!!
I need high dose T3-only, my dose varies very slightly, currently 87.5mcg ( has been 212.5mcg)....I have a form of thyroid hormone resistance otherwise that high dose would be dangerous. Highly unlikely that this is your problem
Taking T3-only is the very last resort after all other protocols have been tried.
We aim to take the lowest dose that is effective, not the highest dose we can tolerate....there is a difference.
87.5mcg levo + 27.5mcg is a combo dose you should have some response to.
Is it normal to add so much t3 and feel such little change? My t3 was very low prior to starting combination therapy.. just below range if I recall correctly (I can dig up the results but I don't much see the point rn.. it was low and my conversion was poor).
It's not normal but not out of the question....but only for a limited cohort of patients
For good health every cell in the body needs to be saturated with T3, this clearly isn't happening for you.
T3 becomes active once it enters the nuclei of the cells via functional T3 receptors.....
If FT3 ( T3 in the serum) is low then cellular T3 will be low
Low serum T3 may be the result of poor absorption from the gut into the blood
Have you optimised Vit D, vit B12, folate and ferritin to support this
Do you know if your poor conversion is inherited from one or both parents ( mine is homozygous/both so worse than if heterozygous)?
It appears that T3 is having some impact on your health
It may be worth a trial taking it in a single dose ( I take my full dose at bedtime, others do so in the early morning)
The bigger dose can provide an extra "push" against the cells which helps it enter them....sorry that's a very basic quick explanation, it's actually very complicated
Splitting didn't work for me.
I take it you are self medicating.....or not?
It would really help if you could post your most recent labs ....and also your diagnostic labs ( pre medication) if you have them.
You really need to test while you are titrating / fiddling the T3 dose otherwise you have little idea of what is happening....it's not guess work!
We must also rely on signs and symptoms
Check resting heart rate daily
Fast rate = overmedication
Check for hand tremors....arms outstretched in front, palms down , hands together, sheet of paper over backs of hands will show tremors
Tremors = overmedication
How much levo were you taking before you added T3?
I was on 175mcg....I had tried 200mcg but that was even worse.
I think you need to be on a more settled T4/T3 combo for at least 6/8 weeks before considering T3-only otherwise it's not clear how the body is responding to the dose
It's frustratingly slow....it took me about 3 years to find my therapeutic T3 dose and after several years I still notice slight improvements! Others have found the same.
If interested my thyroid journey is related in my bio
I'm aware it's not guess work. I've tested a lot previously, and with time have come to trust the signs and symptoms my body gives me. I really don't think I'm overmedicated - but that said, it seems like it's time to hold off on further dose changes, test in a few weeks, and allow my system to adapt to what it's getting. I'll see where I'm at in a few weeks.
I'm not self medicating, no. My doctor is trusting my process, go figure. He knows I'm adding 2.5mcg at a time and am very aware of symptoms of overmedication. To be fair tho, he did ask me to choose a point at which I'll stop. I will do that now.
Your advice about taking the dose all at once is interesting indeed. I have had to split the t4 since adding t3 as it's the only way I can tolerate it. I suspect t3 will be the same, but I haven't tested that. Can there be any negative repercussions of taking it all at once? Like, can I be dangerously overmedicated? What's the worst that could happen?
I've posted labs in the past. Next time, when I have labs reflective of my current state, I'll post again to allow for analysis.
My vits and mins are all optimal. I take all the supplements and prepared well before taking T3.
Oh and I'm not sure as to whether my poor conversion is inherited. My dad had hashis but he died when I was 19 (I'm 36 now). I've not looked into it.. should I? Is it worth knowing?
I dont test my daily heart rate but im very sensitive to any changes in my system. I notice my heart rate rising ever so slightly if I've left it too long between t3 doses. Once I take the t3, my sense is that it normalises. Definitely no tremors or anything like that.. I would be so very aware of it.
Though some find it easier to get T3 prescribed if they have the genetic varant!
But....you are past the post there!
Good...your doctor is more open minded than many....though perhaps also fairly clueless!
Good...you are listening to your body...very important.
To a large extent your body will tell you when your dose is right.
Re single dose....I followed the protocol of the late Dr John Lowe, a T3 expert.
He took his T3 in a single dose, early morning.
See the link(s) I gave you, above
However dosing is very individual and can involve some trial and error to fine tune and discover what suits you best
I've had no problem with taking a large single dose but again I've been dealing with thyroid hormone resistance which requires a large dose.
Depending on how much you eventually take your reaction may vary, but....
Your body will tell you if you are overmedicating.....racing heart rate, raided temp, tremors, anxiety ( the all important signs and symptoms)
Just be very aware of any symptoms of overmedcating which are undesirable.
Tho' slight overmedicating in the short term may happen during titration....just drop the dose again and it should be fine.
Been there and live to tell the tale.....at age 77!!
So, suggest you hold your current dose then test after 6 weeks, you really need to allow your system to settle
Post your labs with ref ranges and add any signs and symptoms you notice and members will comment.
I also strongly advise when asking T3 that you monitor your resting heart rate. I use a fit-bit ....my RHR is around 65bpm. I also advise the you keep a diary detailing all med changes, symptom changes, negative issues and resting heart rate, blood pressure, temp before rising....it's a faff but builds up a clear indication of what is going on.
There are no "set rules" for dosing....we need what we need. Finding that dose takes time.
My GP nearly had a fit when I started to self medicate, she was convinced I was killing myself but after some discussion she now sees the benefit and leaves me to get on with it.
Thanks for all your time and attention here DippyDame, and apologies for such a slow reply.
Yes.. my doctor is leaving it up to me in a big way, which is good for the most part.. if not a bit clueless, it's true!
I have stopped at 27.5mg. We shall see what next. Interestingly I have already noticed improvements in my toileting. Fingers crossed for more benefits.
I have heard of Dr Lowe. I'll contemplate a single dose in due course.
Im sure I'll be back with more after the 6 week test.
HornM Finding the sweet spot isn't only about altering 1 dose at a time in small increments; it is also about doing it slowly so the full effects of any increase is apparent before any new adjustments are considered. I was on 100mcg levo. My endo decided that following the laid down protocol, my combo dose would be 50mcg levo and 20mcg lio T3. I worked my way to that dose and felt awful. Over the next 2 years I slowly adjusted doses and dosing patterns for levo and lio; changing 1 thing at a time and waiting 8 weeks then doing bloods. I know the body doesn't like changes and prefers stable doses so once I felt reasonable and my thyroid bloods levels seemed ok for me I stopped changing to see what the longer term healing would be like.
The dose I stopped on was 50mcg levo x 2 per day and 5mcg lio and 2.5mcg lio per day. so a lot different from what the endo thought.
A year on the stable dose has continued to show steady improvement. I still have a way to go with stamina but instead of being housebound I can walk a couple of miles and enjoy a few days away on holiday.
Thanks lalaloot. Gosh.. it requires an enormous amount of patience, doesn't it. Im glad you have a better quality of life. I really want to be able to work so I can regain my independence.
That is such a small amount of t3 you're on. I hope I don't suddenly get hit with a bout of being overmedicated!
I hear you. I will hold off on dose increases and test in 6 weeks. In all likelihood ill post again then!
Yeah, I appreciate that. But what exactly do you mean? Don't you just need the amount you need to be well? I'd like to think I can function completely on an optimal dose..
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