Hope you’re all well. Am about to trial T3 alongside the levothyroxine I’ve been on for 7 years (underactive thyroid / hashimotos) and would love your thoughts please.
My symptoms were getting worse so I tried upping dose from 75mcg to 100mcg last year for two months, initially felt worse, endo said TSH too low, then back to 75mcg and totally crashed energy wise and gut issues (SIBO) so much worse. On restrictive SIBO diet and am already underweight so probably doesn’t help energy levels!
Anyway endo has agreed for me to trial T3 liothyronine for 3 months. Hard to source and expensive but i really want to try it as my T3 always low so suspect I don’t convert well.
Endo has said to now take 75mcg levo 3 times a week and 50mcg on other days inbetween, with 20mcg of liothyronine daily, half in the morning and half in afternoon.
Does this sound ok as a starter dose?
Bit nervous to decrease levothyroxine but makes sense if taking T3 I guess.
Also - could I just take the whole 20mcg T3 in the morning with the T4, as I will no doubt struggle to remember to take half in the afternoon.( pharmacist also said pills v small and hard to cut in half, maybe somewhere else will have them in 10mcg’s)
Does anyone have any positive / negative experiences with T3? I am so tired and physically weak that I really need to give it a go.
Last bloods were in Jan after going back down to 75mcg:
TSH 0.38 (range 0.27-4.2)
T3 2.5 (3.1-6.8)
T4 14 (12-22)
Ferritin 46 (13-150)
Trying to optimise ferritin and other vits!
other results on earlier post
Thanks so much for your help and advice as always, so grateful 🙏
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Anyway endo has agreed for me to trial T3 liothyronine for 3 months. Hard to source and expensive
Why is it hard to source and expensive?
Is endo private and you have a private prescription? If so get prescription written as "Thybon Henning 20mcg" and use one of the pharmacies in ThyroidUK list where you should be able to get them for the equivalent of about 50-60p per tablet:
Try Smartway, Chemist4U and Roseway, compare prices.
Endo has said to now take 75mcg levo 3 times a week and 50mcg on other days inbetween,
This depends on how much Levo you currently take and your current FT4 result.
As these are your latest results:
T3 - 2.5 (range 3.1-6.8) lowest it’s been for ages!
T4 - 14 (12-22)
TSH 0.38
I agree with the reply by SlowDragon to your previous post where she said you need an increase in Levo (not added T3 at this stage), this is to get your FT4 as high as possible then see where your FT3 lies:
with 20mcg of liothyronine daily, half in the morning and half in afternoon.
It's not advised to start on 20mcg T3 for anyone. Most sensible advice is to start on 5mcg for a couple of weeks, see how you react to it. If all OK add another 5mcg. That might be enough so you'd stay on that dose and that is where I would be retesting 6-8 weeks after increasing to 10mcg. It may be that you need more so add another 5mcg so then I'd retest 6-8 weeks after being on 15mcg. If you need more then add another 5mcg, etc.
Some people split the dose, some are fine taking it all at once. It's trial and error to find what suits you.
Ferritin 46 (13-150)
Trying to optimise ferritin and other vits!
ALL nutrients should be at optimal levels BEFORE adding T3:
Vit D: 100-150nmol/L
B12: top of range for Total B12, if Active B12 tested then 100 plus
Folate: at least half way through range
Ferritin: some experts say 90-110ug/L is the optimal level for thyroid function
No thyroid hormone work properly with sub optimal nutrient levels, conversion of T4 to T3 needs optimal nutrient levels.
Thank you so much SeasideSusie for your very quick and helpful reply 🙏
I’m probably not supposed to say where I live, so I’ll just say I don’t live in the U.K. and we don’t have the NHS. It isn’t private, we pay for our prescriptions. I’m totally prepared to pay if it works! Desperately need energy back as struggling to function. Have been taking various vitamins for a long time now and also eat a super healthy diet, lots of meat, eggs, fish, veg, fruit, nuts, seeds. Am mostly DF and no gluten. It is rather dull but I suffer if I stray too much from this.
Ferritin generally bumps around at 32-46, can’t seem to increase it despite eating red meat and liver. So I feel like T3 is the missing piece to my puzzle!
Phew glad you said 20mcg is too high, terrifies me to start on that. 5mcg much better. Thank you for the Thybon Henning tip and also hope that it can be cheaper than I’ve told!
So when I was taking 100mcg levothyroxine I initially felt worse (weirdly fizzy inside and palpitations) and these were my results after more than two months :
Tsh 0.02 endo not happy it being so low
T4 17.9 - high for me!
T3 3.6
But then I think perhaps it started to make me feel better as the following weeks I had more energy, but by then I’d returned to 75mcg on endo’s advice. But then I totally crashed!
So would you go back to 100 and take 5mcg T3? I’m worried it would be too much. Feel like 75 plus 5 might be a better starting point.
Thank you so much for your help 🙏 hope you’re well 🤗
Last dose of levo was at least 24 hours before blood test which was at 9am, that’s right isn’t it?
Endo said such a low TSH could lead to osteoporosis and atrial fibrillation- is that right? I’ve no idea how serious that could be if true? but it surely can’t be ideal to go through life with zero energy and shocking brain fog!
Any tips for strengthening bones?
Thanks so much SlowDragon, don’t know what I’d do without you and this amazing helpful and knowledgeable support group 🤗
Most people when on just levothyroxine need Ft4 at least 70% through range and Ft3 at least 50-60% through range
So on 100mcg levothyroxine you probably had room for slight INCREASE in dose in few months
But your conversion rate was terrible
For good conversion you need optimal vitamin levels
on just 75mcg results
FT4: 14 pmol/l (Range 12 - 22) 20.00%
Ft3 way below range
75mcg is very likely not going to be high enough dose levothyroxine
Adding T3 almost always results in Ft4 dropping
Most people when adequately treated on levothyroxine plus small dose T3 need BOTH Ft4 and Ft3 at least 50-60% through range….or often around 70% through range
thank you so much SlowDragon, yes I’m clearly a terrible converter! Any thoughts on why? I have SIBO, would any conversion happen in the gut? Or vitamin levels too low? January results below;
B12 758 (197-771)
No folate result
Vit D 131.8 nmol/ L >50
Ferritin 46 (13-150) I eat red meat, liver and eggs with vitamin C but it’s rarely much above this, often in 30s. Not sure what else to do!
Blood also shows low platelets, RCC & HCT
Yes I have hashimotos
TPO 27.9 (0-75) not sure if that’s ok?
So if T4 drops when add T3 should I go back to 100mcg levothyroxine daily? Endo said drop to 50 4x week and 75 3x a week (that was with them saying to take 20mcg T3 daily - i won’t, I’ll start with 5)
Thanks again SlowDragon, hope you’re feeling well & have a lovely weekend 🤗
Yes think I tested negative for H pylori in the last few years
Got food poisoning from an egg while living abroad years ago and wonder if it started problems as that’s when I started getting food hangovers. Heard that SIBO is quite common with hashis due to low stomach acid? I don’t know if mine is or not. Tried bicarbonate of soda test and that suggested it was
All I know for sure is my SIBO is tricky to treat, on my 4th attempt now with herbals and low fodmap, done once before, and antibiotics twice …
So many endocrinologists are “like bull in a china shop”
Ridiculous to chop levothyroxine too much or to start on 20mcg T3
The cynic would say …..that endocrinologists set T3 trials up to fail”
Slow and steady …….systematic changes
Can take many months tweaking doses and timings of doses to get best results
My own experience was. I was on 125mcg levothyroxine. This gave Ft4 about 18 (12-22)
Endo reduced levothyroxine by 25mcg (after 3 months Ft4 was at 13 (12-22) ……after much tweaking I have eventually ended up on 125mcg 5 x week and 112.5mcg 2 days week
Endocrinologist wanted me to start on 10mcg ….as 2 x 5mcg
I actually started on 2 x 2.5mcg (and that was noticeable “whoosh “ ……after 2 months was on 2 x 5mcg
Dose was then increased by endocrinologist to 20mcg per day …..as 10mcg, 5mcg and 5mcg .
took me 3 years and much messing around with doses to realise I actually only needed 3 x 5mcg per day
Don’t be in a rush to increase to 20mcg
Many members find they only need small addition of T3
2 x 5mcg common.
3 x 2.5mcg (only really possible if have 5mcg tablets)
thank you so much SlowDragon; that’s really helpful 🙏 yes in no rush to increase, even the slightest whoosh right now would be amazing!! 😄 Sorry your T4 dropped so much when endo put your meds down, and well done on all the tweaking! Tiring and takes time but sounds like you’ve cracked it ⭐️
Think I’ll start with 5mcg T3 and 100mcg T4 a day, taken once in the morning or 2x 2.5mcg. Worried I’ll forget the second dose! How many hours do you take it after the first? Does it affect sleep if taken in the afternoon? My sleep is ok at the mo but fragile so don’t want to jeopardise that!
Thanks again, your help is very greatly appreciated x
thank you SlowDragon, sorry I meant to reply! Very helpful. I’m now about 3 weeks into my T3 trial and taking 5 in the morning and 5 in the afternoon, along with the 100mcg levothyroxine (I had lowered it to 75mcg following to endo advice as they said TSH too near zero but I crashed completely after that so started taking 100 again, they don’t know that.. )
I must say I don’t feel much different yet… perhaps the odd burst of energy which is novel and most welcome!
Endo advised 20mcg T3 and reduce levo to 50 and 75 on alternate days (she thinks I’m on 75…) Shall I start reducing my levo a bit (maybe by 12.5) every other day and add another 5mcg in the morning to make it 10 in the morning, then 5 in the afternoon?
I haven’t noticed much difference in energy etc nor signs of being overmedicated.
Last bloods in Jan as mentioned earlier
T3 was 2.5 (3.1-6.8) and T4 14 (12-22)
TSH 0.38 (0.27-4.2)
I’m due an update blood test after another two months (three month trial)
Thanks SO much I’d be lost without your help 🙏 hope you’re keeping well 😊
thanks so much SlowDragon for your very quick and helpful reply. Endo wasn’t going to test me for a while but you’re right, better to test sooner so I can see what’s going on. I don’t want to keep increasing T3 dose without that knowledge. I suspect endo won’t like the inevitable very low TSH! Thanks again 🙏 and best wishes
Hope, your ft4 is low in range. Taking t3 will lower it slightly as that is an effect t3 has. I wouldn't reduce your levo dose at all.My endo reduced my levo dose when she added t3 and it took my ft4 to the very bottom of range which made me ill.
You need to start t3 slowly. 5 mcg daily added to your levo for the first week.
Then if all ok add on another 5mcg as a second dose.
Wait 2 weeks.
Add in another 5 mcg either as another dose or added to an existing dose.
Wait 2 weeks and add in last 5mcg.
Wait 8 weeks and do bloods.
You can stop before you reach the 20mcg daily total dose if you want. Doctors don't know what our dose needs are as we are all different. We need to find out our doses by trial and error . My endo told me to go on a dose of 50mcg levo and 20t3. What I have found suits me is 100mcg levo and only 7.5mcg t3.
thank you so much lalatoot, much appreciated. So sorry you were ill after you had to lower your levo, it’s awful isn’t and makes life a real struggle.
Your advice is super sensible thank you.
So I’ve been mainly on 75mcg last few years, then 100mcg trial last year - felt worse then better but hard to know as switched back to 75mcg after two months on 100. Not sure whether to stick on 75mcg and add in the 5mcg or go to 100 plus 5. Trial and error I guess but it all takes so long to tweak and feel the results, good or bad 😔
Stick to 75 and add in the 5. Only change 1 thing at a time otherwise you won't know which change is causing symptoms or benefits. It took me 2 years of slowly and methodically changing 1 thing at a time waiting 8 weeks doing bloods till I arrived at doses that suit me. Now 18 months on from settling on those doses things are still improving. It is a long and slow process but keeping hopeful helps.
thank you so much Lalatoot 🙏 that gives me hope! Well done being so patient!
So I’ve enquired about a 5mcg dose and it’s £600 a month 😣 weirdly 20mcg is only £80! Oh why so hard for us thyroid folk??!! Sadly we’re not on the NHS
I get 25mcgs and cutinto 1/8th to get 3mcgs. It’s fiddly but I’m finding T3 very powerful so I’m taking it low and slow as advised on this forum. I only started a week ago.
you can buy a pill cutter on Amazon. It’s a bit fiddly but doable🤷♀️. I believe Thybon Hemming supply 20mcgs. I’m using Uni Pharma from Greece, which are 25mcgs tablets. They split 4 ways easily. Then I use my fingernail to split it again. It crumbs but I think by week 3 I will be using the quarters.
I think there are ways to buy online with prescriptions.
Low and slow is what I have been advised here.
Today I needed another 3mcgs in the PM. But felt good again 1 hour after taking the extra.
Is this a private or NHS Endo and why isn't he/she writing you a prescription?
It looks to me like your Endo is trying to keep your TSH within range which is likely just not going to work as soon as you add even a small amount of T3 your TSH willlikely get suppressed and go below range. Your FT4 is already very low in range so really no need to drop that in my opinion.
As far as T3 starting dose it is recommended here to go in no more than 5mcg stages at a time every 2 weeks. 20mcgs is far too higher dose to start on and if you did that you would probably think you are intolerant to it when you are not. Endo's have no idea how this stuff pans out in real life, just what they've seen in text books and they never listen to their patients anyway.
Key to this will be having OPTIMAL vitamins and as you know your ferritin isn't quite there yet. Keep working on that and all the others.
thank you so much Jaydee, much appreciated. I don’t live in U.K. so no NHS. Endo isn’t private but have to pay for prescriptions.
Yes I feel same, don’t want to drop levo when T4 so low. Unless the T3 makes up for it?
Yes 5mcg sounds much more sensible as a starting point. Don’t want to shock my system! Maybe I do need 20mcg eventually but rather take it slow.
Really trying to optimise vits and ferritin but doesn’t seem to help. I have SIBO (working on that too!) so interferes with nutrient absorption 😬 I have never eaten so healthily and felt so rubbish!! Gut did feel better and less bloating after two months on 100 T4 but I didn’t connect it to my gut until I went back to 75 and gut got worse again. All so complicated and issues not connected by medical profession, have to do a lot of research and trial and error, so tiring when already exhausted. Thank goodness for you and other forum friends 😃
if anyone can recommend where to source T3 in 5mcg pills that would be much appreciated thank you. I am not in the U.K. or part of the NHS. Would thyroid U.K. have a list? Or is international pharmacy websites any good?
Also any brands of liothyronine you can recommend? Thanks again wonderful people 🤗
wow that’s amazing, finally something affordable thank you SlowDragon! So the list on the link will only supply a pharmacy, or do you know which ones supply individuals? Thybon Henning the best brand to go for?
Hi Shaws, I had no idea one could have quarterly or monthly injections of T3, that sounds so, so much easier than taking little doses through the day. Where can I find out more please?
thyr01d .... pretty sure that was just a typo by shaws and she meant to write " T3 restored health , and gets B12 injection " ...., not T3 injection .
T3 injections are only available for hospital emergency use , and T3 has a very short half life ... making one T3 injection last 3 months is impossible.
it has a half life of about a day ( which is why it need to be taken daily/ or more often .. it is all gone within a few days , no matter how much you injected.
As well as being limited to hospital / emergency use, the price of T3 injections on the NHS price list is also extraordinarily high ,, can't remember what exactly , but it had an awful lot of 000000's in it....
Hello, answering from my own experience of T3, I was under a good endocrinologist and started on 5 mcg per day gradually increasing to 20 mcg per day (splitting the dose ideally into 3) over 2 years, so very, very slowly. I take nothing else, no Levo or anything. So my thought is that you'd be wise to start low and increase slowly. I also agree with Seaside Susie recommendation to increase ferritin levels, first ideally, if you can. I tried and still do try but can't raise ferritin (because I'm vegan) which I find very frustrating because I think in my case that's what interferes with the conversion of T4 to T3. These are just my thoughts, no medical qualifications, and I wish you the best of luck.
thank you so much thyr01d, very helpful advice. Did you split the 5mcg or just take once in the morning?
Interesting that low ferritin can interfere with conversion, might explain it for me. I am very carnivorous but ferritin remains stubbornly low! Do you take an iron supplement?
Thanks again and wishing you good health and happiness 🤗
Hello again, I think I've misremembered now you've asked about splitting, because I was given a pill-splitter so was definitely splitting pills (sounds like a tongue-twister!) so think I must have been taking 10 mcg per day. Could also have been cutting the 10s in half to take 5 each day - I think that's it, it must be because the small dose tablets cost so much more we are given higher dose to cut. As for ferritin it's not good taking any advice from me on that! Like you, mine scrapes along at the bottom of the range even after 2 years of prescribed iron - GP answer is to stop being vegan but I can't. I often drink coffee just after a meal which I know interferes with iron absorption and did you say you do too? I know we need sufficient vitamin c for absorbing the iron and that nuts, seeds, caffeine, spinach and apricots contain something that interferes with absorption so best avoided. But, like I said, don't take advice from me, that would be like taking advice on the best glasses from a blind person!
I'm hopeless, I sent you a long reply but failed to answer your question clearly!! I don't think I split 5 mcg, I think I was prescribed10 mcg tablets and took 5 mcg each day to start off with. My endo advises half of the full day's dose at the start of the day then the remainder split into two doses the last one not taken after 4 pm to avoid disrupted sleep. However I know there's great variation in what works for people with some taking their whole day's worth in one go at bedtime for instance.
thanks so much thyr01d, very helpful (not hopeless at all!) and much appreciated. Interesting how differently people can take their meds, I’ll start with once in the morning, worried I might forget otherwise! Awful brain fog/ memory!
I don’t drink caffeine apart from green tea at breakfast, but I do eat a lot of seeds and nuts, so thanks for mentioning that as maybe not helping!
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