This message is just a rant really. My heads so muddled, I can’t think straight, I feel disgustingly lethargic and weak 😞 this trial has not been a good experience. And I’ve come to realise I can’t take T3... more accurately.. I can’t manage it, it’s a far too disciplined routine with timings, dosage, diet and supplements. I’m not being lazy, It’s just too much to remember for me personally. I’m an extremely forgetful person as it it!
From the first 6 weeks losing so much hair, it then made be very cautious so been taking half the dose recommended. But with a smaller dose of T3 along side a smaller dose of levo I now feel lousy. And I’m too scared to increase either of them now. My periods have become very problematic as well. I’m out of my depth and don’t know what I’m doing. So if I don’t understand, and I don’t trust the guidance of my endo, then I’ve decided that I should go back to my 125 Levo and focus more on my vitamins, which admittedly I didn’t do before this trial (and I realise that’s probably why it hasn’t worked out) the endocrinologist isn’t interested in my vitamin levels or diet. He just let me do this trial knowing I’d fail. So without decent support and guidance, mixed with my unreliability/disorganisation I’ve decided it’s not right for me.
I’ve got a job interview tomorrow... haven’t worked for 2yrs... and I’ve been sat in tears all morning! I hoped I’d be ready and well by now, but I don’t feel I am. I’m so disappointed 😞 I’m still going for the job, but I think I should ring and ask for my old Levo script ASAP and get myself something like again.
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HollieBerry
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I can't really offer you much advice about your medication - there are many people here more qualified than I to do that. But as a fellow hypo, I know how hard it can be. I was the same when I was preparing for my wedding earlier in the year; I was really hopeful the thyroid meds I was on would make a difference, but they didn't and whilst I had an amazing day I was still in a clouded brain fog. Just gives me all the more determination to get my thyroid sorted, as I'm sure it does for you too.
All the very best for your interview tomorrow - let us know how you get on. 🌸
No, don't do that! Don't let your endo win and cheat you of your T3. Talk to us. Tell us about this 'disciplined routine'. Because that doesn't sound like the T3 I know. lol What exactly are you doing that is so hard to follow? In what way have you had to change your diet? And, more importantly, how much T3 did your snake-in-the-grass endo start you on?
I take T3 only, I take it all in one go, when I get up - at whatever time that may be. And, I continue to eat what and when I like. And it's fine.
There's no reason why you can't work on your nutrients at the same time as doing the T3 'trial', so please don't give up.
Grey goose Spot on. Interested you take your T3 all in one go. How much are you on, if you do not mind sharing. I am on 100mcg which I do take mostly 4 times a day. Yaking only once would be so much easier.
Have you tried taking it all in one go? Do you know why you're on such a high dose? If it's because you have some degree of thyroid hormone resistance - like me - you'd probably be better taking it all in one go so that you flood the receptors and force a bit more hormone into the cells.
Taking it four times a day, do you manage to always take it away from food/supplements/other medication, just like you would levo? If not, then you might find you need less by taking it all in one go, but absorping better.
Mine was non conversion of T4 to T3. 24 hour urine T3 282 ref range 800-2500. A later test on cortisol showed really high cortisol, with 2 of the tests above the highest limit, which probably says why I was not converting T4.
Well, a conversion problem wouldn't explain why you need such a high dose. It's not usual to take 100 mcg. When did you last have your FT3 tested? What was the result? Perhaps you have an absorption problem in the gut.
I have read a couple of researched articles that say 75-100mcg Liothyronine is what is needed, when just on Liothyronine. I was on 50 for some while and though improved I was still not myself. The relief as I increased my dose 2 years ago, and found me again was immense. I have had so many good benefits from the dose I am on, BP back to normal, skin changes on legs so diminished, eyebrows growing back, as has my hairline. So much more energy, enough that 2 years ago I started to lose weight and have lost nearly 8 stone.
Grey Goose I will certainly think about trying a dose all at once. Must admit to not having had a T3 blood test for some while. I will get one done and will try the Monitor my Health if they do it up this way be interested to see the process.
Don't give up you are at a very early stage, one of the helpful things I was told when I started T3-only was to be patient because it would take a long time to find my therapeutic dose. It did.....nearly 2 years from T4, to T4/T3 and then T3-only.
Don't give that clueless medic the satisfaction of seeing you give up, a hefty dose of sheer bloody mindedness did it for me!!
Totally agree with greygoose except that I take my 75mcg dose of T3 in a single dose at bedtime. That separates it from any food/drinks.
I also have a type of thyroid hormone resistance and took 200mcg of T3 at bedtime, for several months until I felt overmedicated and was able to slowly reduce to 75mcg. I think the high dose may have kick started some of the receptors so that I needed less.
I'm Dio2/homozygous but that only affects conversion....so no impact on T3 only. If you are T3-only you are not relying on conversion.
Keep going you have nothing to lose but poor health!
Thanks for the advice there DippyDame. Very helpful. I didn’t realise so many took their T3 at once, I’m so pleased to hear this! I’m going to give it one last bash and take at night like you said. Do you think I should take my T4 at night with it too? I’ve always taken in the morn but would be easier to do the lot in one go...... actually 🤔 maybe I should take them both in the morn. Why did you opt for night time as opposed to morning if you don’t mind me asking? x
Taking T3 at bedtime avoided all food and drinks.....seemed easier!Some people find that method affects their sleep, so I'm afraid there is an element of trial and error involved....and I had a fair amount of that along the way.
I self medicate so I didn't have a medic telling me to dose in ways I knew my body didn't cope with!
On the other hand some people can only cope with split dosing.
When I was still trialling split doses I took T4 and T3 together.
Taking both together can be OK.
Sadly there is no definitive set of dosing instructions, not everybody will take as long me to find their best dose
Time, patience lots of reading and determination worked for me.
I'm old (not in my head!!) and had a lot of damage (decades most likely) from low cellular T3 to overcome so mine was a long, bumpy road to improved health. I was 70 when I first trialled T3. Hopefully you get there quicker than I did!
I must have over complicated this way more than needed to be 🤦🏼♀️ I didn’t realise so many people took T3 in one dose! I’m truly shocked. I thought splitting it was best as it mimicked the natural secretion - but hearing you and others are fine in one dose has given me hope again!
The endo started me on 20mcg T3 a day but I’ve halved it now after losing so much hair.
I say ‘should’ because I rarely take them at the times I should and I often forget the 11am and 4pm doses.. so as time’s gone by I’m feeling more and more under medicated from missed doses.
Food wise, I suppose I’ve just become very self critical thinking I should be gluten free, and although I make some effort to get sourdough or GF I’m not completely, so I feel guilty! and I wonder if it’s been the cause of my symptoms all along. I had a celiac test and was negative though 🤷🏼♀️
I didn’t realise so many people took T3 in one dose! I’m truly shocked. I thought splitting it was best as it mimicked the natural secretion
I understand what you're saying, and it is best for some people, but not everyone. Mimicking natural anything is not always the way to go when hormonal things go wrong. And, we need to experiment to find out what works best for us.
The endo started me on 20mcg T3 a day
Yes, he did set you up to fail, didn't he! It should have been 5 mcg a day to begin with. But, you're not going to let him beat you, are you? You're going to go back to see him, your head held high, look him straight in the eye and say, pleasantly, "I feel soooo much better on T3! I do hope I can continue it."
Not a good idea to take the B complex at the same time as the magnesum. They don't sit well together. Maybe take it with lunch?
Don't stress out about taking supplements. If you miss one, you miss one. You'll do better tomorrow. It not the end of the world.
If you're going to go gluten-free, it has to be 100% or nothing. And, whilst gluten might be responsible for some of your symptoms, it's not likely to be responsible for all of them.
Even if you don't have Coeliac, you could still be gluten-sensitive. So, it is worth making the effort to see if gluten-free helps. But, don't stress out about it, it's not worth it. When you're feeling better, then you can think about things like that. One step at a time, that's the way to progress - and baby steps, at that. So, stop feeling guilty, and stop blaming yourself. Breath deeply and relax. You can beat this thing, hands down!
Haha ok, I think can manage another round 💪🏼speaking to people on here has defo given me some more hope.
I’m going to try taking 10mcg with 100mcg Levo once a day (possibly morn I’m thinking). Can I take B complex with iron? Then I can take the rest in the Eve? That’s only 3 doses to remember a day then.
I love that you say don’t worry about gluten free just yet, I did feel I was trying to take everything on at once and my little brain just blew a fuse! x
No, you can't take anything with iron except vit C. They have to be two hours apart.
Yes, it can be very overwhelming. I have the same problem. I have to ease into treatments slowly, one thing at a time. Otherwise, I get confused and unhappy, and give up. So, no matter how long it takes, just take it slowly. You'll get there in the end.
I don’t know if this is helpful but what I do is leave my levo and lio dose next to my bed when I go to bed. When I wake up - which might be 5am or 6am or 8am I take them. I then lie in bed a bit, sometimes go back to sleep, eventually get up and have a shower.
By then it’s been an hour at least and I have breakfast. At which point I take the b vitamins.
I then take iron at lunch. You could then take magnesium at dinner as you were. Does that help?
Try to keep going with the T3 as you are unlikely to be offered it again. I take T3 and levo - the levo part is more disciplined than the T3. T3 is not so fussy about being taken away from food. You are feeling lousy because you don't have enough hormones. There are many of us on here who have started out on combo like you and we can offer guidance.
Some take their levo and T3 in one dose. It is a case of finding what suits you and your lifestyle.
Very few of us have confidence in our endos. My endo halved my levo to 50mcg and added in 20mcg T3 when I was given a trial. she expected me to take that dose from day 1. Luckily I knew from this site that that was a non starter. Like you I felt awful as my levo was reduced and I hadn't built up the T3 dose.
It hasn't been an easy journey as I have slowly been increasing my levo and altering my T3 dose. I now take 100mcg levo and 7.5mcg T3. Way different to the endos idea of the dose I would need! I was all but bed ridden on levo but I can now walk into town (but ironically no shops are open!! ) and can do more.
To be given a trial of T3 you must have felt awful on levo only.
Very similar actually! I was on 125 Levo he reduced to 50 and added 20mcg T3 a day from day one!... and then I lost about a third of my hair in 6 weeks 😭
I’m really pleased to hear people take their T3 in one dose, this will take of so much pressure.
You made a very good point too, I doubt I’d get this chance again so I shouldn’t give up too easily.
Hi Hollie Berry, I’ve not been on the combination treatment long & have not had a eureka moment of feeling well like some members report. For some of us, the journey to better health takes longer. I’m only on a small dose of T3, as the dose my Endo prescribed was too much for me. I’m in the ‘slow& steady’ camp, making small changes 6 weeks apart, as medication changes really effect me. I think you posted earlier re vitamin tests.... why not wait until you get the results of those before changing your medication?
Yes good point. I’ve got a medichecks home test here. Just waiting till next week when I’ve got supplements out my system before testing. I’ll hang in a bit longer I think. Thanks for your advice x
Hi Hollie Berry. How do you know it is the T3 which is muddling you up? Hair loss is common with thyroid related problems as is brain fog. Endocrinologists seem to work on so many mcg per skin area, which means a larger person needs more.; but I still feel that they do not allow enough which is why people in research using T3 and T4 are not given enough to make the research work properly, and they just say it makes no difference.
Are you aware that Thyroxine (T4) does not do anything and has to be converted to T3. Sometimes the conversion fails and there are a good few reasons, one of the main ones is raised cortisol which is the hormone released in stress.
Stress is accumulative, and so when the level is high enough it stops the conversion of T4 to T3. T4 is also converted to reverse T3 (rT3) which is the way the body gets rid of excess T4. Reverse T3 is also inactive. The body now has more rT3 than T3 and the little T3 there is has problems getting to the cells, so you get Cellular Hypothyroidism. This is a condition not recognised by many endocrinologists, though it is quite well documented if you google it.
In people with their Thyroid gland the TSH and T4 blood levels look normal in Cellular Hypothyroidism and it is only when T3 test is included that the picture may be clearer. I say may because doctors appear to think that as long as the level is within the normal limits all is fine, when in fact it is not. I have read a good few times T3 level needs to be in the upper third of the normal range for a person to function properly.
With help from here with information, and reading a lot, I had a private 24 hour urine test for T3 and T4. My T3 result was 282, the range it should have been in was 800-2500. No wonder I felt terrible. The vitamins I take one of the important ones is selenium as thyroid system works on selenoprotein pathways. See this article the abstract and bullet points below will be enough to read. nature.com/articles/nrendo....
Wow Judith that is so interesting! I do have periods where I research deeply but I always end up forgetting when the times comes to argue my point with the endo 🙄 I was struggling to split my doses AND vitamins whilst ensuring they didn’t overlap/interfere with thyroid meds. So trying to take 4 times a day, and often only remembering 2 of them 🙈 my memory is terrible it really is. I’ve even set alarms but that didn’t work.
I’ve noticed a lot more people than I realised take their T3 all in one go, so I might try that, but I’ll still have to split supplements cus iron’s awkward and has to be on its own doesn’t it? which leaves me magnesium glycinate, D3&K2, omega 3 and b-complex to take together..... hmmm so basically that’s still 3 times a day?
What I am hearing here is that you’re overwhelmed and poorly still.
It’s no wonder you feel like giving in, especially with an endo that set you up to fail (I think he reduced your levo a lot and got you on quite a bit t3?)
I started T3 recently too and I agree I felt like jacking it in too. I found it very hard to tolerate I had to introduce it VERY slowly. Like 1.25mcg twice a day right at the start. How small is that?!!! Ha ha.
I agree with GG. Don’t let the endo win. You’re just not on the right dose yet. Let everyone on here help.
What’s your latest blood results and dose?
As for timings and dose I’ve found through research and trial that I’m fairly easily able to tolerate whenever I take the t3. Only thing I do is avoid taking it after iron. It absorbs super fast - especially if you mash it up in your mouth with your teeth - then it absorbs really fast in gut. So you can take it before eating and before iron or calcium with only a very short gap. So when I realised that it made me far less stressed about my regime.
I take 1/3 when I wake, 1/3 before lunch and 1/3 mid evening. I don’t worry too much about the exact time. I have seen many take it all at once so you could try that although you might feel it more if you’re on a large dose
What are the dose / supplement bits you’re finding hard? X
Keep your head up chick. It is hard. And good luck with the job interview. I bet you’ll feel better just for getting that out of the way.
Thank you, it’s good to know I’m not the only one that’s struggling with it. Yeah the endo freaked me out from the start by reducing T4 from 125 to 50 and adding 2 x 10mcg Liothyronine from day one.. I didn’t feel anything at all physically, no jitters, nothing. Apart from losing about 1/3 of my hair 😭 after my 6wk review he told me to stay on the same dose but I was too scared I’d continue losing hair. So I’m now taking 5mcg T3 & 50mcg T4 two times a day. But I feel like crap.
I think I’ll hang in there. I’ve got a medicheck blood test to do next week so I’ll post results. Also I didn’t realise so many people took their T3 once a day! That would work so much better for me 🙏🏼 x
Quite strange that he asked you to stay on same dose. I can’t remember your levels but expect your T4 levels were pretty low with this?
Your current dose is more similar to mine. I’m now on 100mcg levo and 15mcg lio. Just done my bloods today so will see what they say.
Sorry you’ve lost a lot of hair. That must be scary and worrying. What’s your ferritin levels? I know below 50 and hair loss is likely as posted on this forum before.
I’m glad you’re gonna keep going. I definitely feel like I’m not at my ideal dose and I’ve had no eureka moment. Some symptoms improved but others have done nothing at all - just keep focused on the next review point - and check back on here when you have your numbers.
I didn’t drop to 50 Levo straight away I just reduced by 25 then another 50 so by the time I did the 6wks bloods it hasn’t been on the low dose of 50mcg for too long. These were what he put on a letter to my doc TSH 0.33 - FT4 11.1 - FT3 3.2 (he didn’t put ranges) but I don’t really know what to make of them? I used to understand what was good/bad levels when on just Levo but with combination don’t have a clue what they should look like? 🤯
I was anemic back in September actually, given 3mth course of ferrous sulphate but they didn’t check again before I started the trial. I’ve got a medichecks one to do next week though so all will be revealed! x
Ah well it could definitely be iron related. It takes a long while sometimes to improve those levels and you might need to supplement long term. I’m battling that myself. Also keen to see the latest results since taking very high dose for past few months of ferrous fumerate and iron bisglycinate.
I guess it’s hard without the ranges but potentially those FT4 and FT4 numbers look very low and could potentially be very low in range. Hard to know without the ranges. Medichecks to the rescue! Keep us posted!
Hollie Berry your T3 is really low if the reference range is 3.1 -6.8 pmols as was quoted on my medicheck. So you are really low if that's the same on yours. This is probably why you feel awful. The T4 being low as well will also reduce the amount of T3 being converted if you are converting that is.
Again I ask what makes you think all the symptoms are from T3. Too much T3 would give rapid heart beat / palpitations ++. I started straight on 20 mcg, and within days my breathing which was terrible improved. So stop thinking it is T3 and try and log what is happening. Write things down so it makes more sense for your brain fogged mind.
Oh gosh, HollieBerry, I am so sorry. My ADD brain is so not coping with the trial too. I don’t forget to take the medicine - hyper-focussed on anything to do with hypo, heh. But mentally, I’m really struggling - I’m in tears most days because I’m under medicated and because I need to get well to get and hold down a job, but it is not entirely within my control because it is at the endo’s whim. Like you, I’ve not worked in a long time - 1.5 years since I had a proper job and just a tiny bit of freelance writing, tiny bit of volunteer writing since. And I can’t go back to my old career unless I can get well as I need a ton of energy and to be able to think on my feet for that. Sorry - that’s all about me, isn’t it?! I guess I relate to you a lot between us both being unemployed, hypo on an NHS T3/T4 trial and on the AD(H)D range.
This sounds a bit bonkers, so it might not be a goer, just something I am thinking about... what about taking a week off and not telling the endo?! I mean it’s better than officially throwing in the towel as it gives you time to think it all through a little whilst you are back in your old dose. You could get hold of a little T4 under your own steam, I’m sure. It seems a shame to suffer through for as long as you have and not get there somehow. I really struggle with the idea of giving up completely personally, because then I have suffered this under medicated schizzle for 3 months for nothing... no way!
Yes Lotika! I hear ya! 🙌🏼 No, please do talk about you, I’m interested to hear others experiences to help me understand better. I keep forgetting the second dose of T3 so with less T4 I feel as you say, under medicated. This sounds daft but I can’t even drink alcohol because it knocks me about for about a week after. And as I said my periods have been horrendous the last few months. I’m sorry to hear you’re struggling too! What’s your plan of action? After hearing people take their T3 in one dose that’s bought some hope back... I had in my head it wasn’t possible! So many people split doses, some 4 times a day... but I’m ashamed to say I struggle just twice 🙈 I might have one last bash and take it once at bed time.
Either way, you could take the T3 all in one go with your levo in the morning - some people even say it is better than doing it separately! Worth a shot?
My plan of action is to do as I’m told by endo, which is carry on with this dose for another 3 weeks (gah!) and then of nothing changes he wants to add another 5 mcg T3 in the morning, which is fine with me. I took some antibiotics about 3 weeks ago and I’m now barely absorbing my meds because they trashed my gut! I am eating probiotics, probiotics, tablets, powders, avoiding sugar, just trying to repair some damage as I can’t take much more of it either! I found my hangovers are less with T3; can’t work out why that would be the case, but I’ll take it. Sounds like you are under medicated by a long shot as I was cut from 100 mcg levo to 50 mcg + 2 x 5 mcg T3 and then endo upped to 75 mcg levo when he saw I was under medicated... still need more of something I think... anyway, maybe I can have it in 3 weeks. Endo also insisted I take second dose at 2pm not bedtime... I am calling it the “deckchair intervention”, as, well, rearranging the timing of the dose won’t matter if I’m under medicated, but maybe I’m under medicated because of the antibiotics, so I’m going with it. No choice anyway, really... they’re in charge!
In paul robinsons book he takes his T3 at 3.30am, 11.30am and 3.30pm. Not the 8 hour equi spacing that is sometimes suggested which I found interesting. Just goes to show it is a case of different things for different people. And you can trial it yourself.
I. am fit and well and take T3 alone. I take one daily dose when I get up with one full glass of water and wait an hour before I eat.
I feel well and I much prefer a single dose as I can have an ordinary life. We have gradual increases until we're symptom-free. Many GPs don't understand much about how thyroid hormones work and levothyroxine (T4) should convert to T3 (liothyronin) which is the Active Thyroid Hormone needed in the millions of T3 receptor cells - heart and brain have the most T3 receptor cells.
Also we need B12, Vit D, iron, ferritin and folate to be checked.
Hi Shaws how much T3 do you take all at once, because I might try that, but there was always great warnings in Pauls book about not too much at once sort of thing.
You start on a lower dose of T3, and take it with one glass of water and gradually increase by 1/4 tablet about every 2 or 3 weeks. Always taking into consideration of how 'we feel'.
I shall give you a link to Dr John Lowe (RIP) who was an Adviser to TUK, before his accidental death and he would never, ever prescribe levo.
He only prescribed NDT or T3 (T3 for those who were Resistant to thyroid hormones). Never levothyroxine as he stated that it was due to payments to doctors (in USA) to prescribe levo instead of NDT that levo became the No. 1.
Dr L was also a scientist/researcher and was about 17 years of age when he began to study about thyroid hormones and the necessity our body has for them so that we can have normal health and symptom-free.
At present I take one daily dose of 25mcg of T3. I used to take a higher dose but (going now by how 'I feel' )I take a lower dose i.e. 25mcg once daily with one full glass of water,when I get up and wait an hour before I eat.I have no clinical symptoms and feel well. It is always trial and error at first.
Dr Lowe took T3 himself, in the middle of the night when he awoke, so that nothing interfered with the uptake. He stated that food could interfere with the uptake of T3.
You take the dose with one glass of water. The first link is Dr Lowe's called "safely getting well with thyroid hormones'.
He didn't have hypothyroidism but 'Resistance to Thyroid Hormones'.
BTW I am on T3 only and I don't really bother keeping T3 away from food etc - it doesn't seem to make much difference. I do split my dose into 3 as it seems to suit me better. I started very slowly and find that I need less when the weather is good. I tried 4 times a day but it was too much hassle; 3 is quite easy if you don't worry too much about food. I'm not even very good about keeping to the same times each day - just approximately the same.
This excerpt from above makes me think you don't really have many symptoms that are bothersome:-
" I don't really bother keeping T3 away from food etc".
Not allowing a sufficient time lapse between dose and food can interfere with the uptake of thyroid hormones. So some people would be assuming that the dose wasn't sufficient and may increase it, instead of taking it on an empty stomach and waiting an hour may 'do the trick'whilst taking note of any symptoms. Also everyone is 'free' to do as they wish but wont be searching the internet for help/advice.
A Researcher/scientis/doctor wont recommend something he hasn't studied extensively and Dr Lowe's main aim was to assist people to recover their health. The fact, too, that he was a scientist and Researcher and doctor particularly on thyroid hormones and his main aim was to help people recover and be symptom-free.. He'd never prescribe levothyroxine whatsoever, He took his T3 in the "middle of the night when he awoke" so that nothing could interfere with the uptake. T3 sends out 'waves' throughout the day.
A once-a-day dose means our lives are as natural as possible. I would imagine that to take a dose around the very same time, every single day for life would be more beneficial as I would think it impossible when splitting doses ,
p.s. the action of T3 is that it is absorbed into millions of T3 receptor cells and it 'sends out waves' throughout the day. Also the brain and heart have the most T3 receptor cells.
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