Liothyronine trial update : 5 weeks into my T... - Thyroid UK

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Liothyronine trial update

HollieBerry profile image
29 Replies

5 weeks into my T3 trial and sadly, it’s not been beneficial so far. I don’t feel any better. (In fact my health is awful- but I’m putting it down to lockdown blues/inactivity/crap diet) but it’s a catch 22 situation. I feel so terribly low in mood, so not eating the best, joints are painful so exercise is not enjoyable, I’m getting out for walks but coming home completely wiped out, weak and tired. (Sorry, I didn’t mean this to be such a miserable post!)

I’m due blood tests soon so I’ll be sure to provide results.

Currently taking -

Liothyronine 20mcg

Levothyroxine 100mcg

Vit D and K2 - 5000iu

Vit C - 1000mg

Vit B complex

Magnesium glycinate 200mg

Also looking into getting some algae omega 3 dha/epa, also zinc & selenium - has anyone found improvements with these? 🙏🏼

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HollieBerry profile image
HollieBerry
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29 Replies

Which brand of T3 are you taking ?

They all differ

HollieBerry profile image
HollieBerry in reply to

Says ‘morningside healthcare’ ?

Hashihouseman profile image
Hashihouseman

Probably because that’s far too much t3. It’s super powerful. Some people can tolerate or even need such large amounts but that is statistically rare. Try taking no more than 5mcg per day in split doses and gradually increase if needed after a week or so but you are unlikely to need more than 7-10 mcg and split the doses into at least 3. The reason many of these T3 trials fail and why T3 is regarded with such scepticism in the medical community is that all too often the doses trialled are far too high. Medics seem to think that less than 5 µg is not of any therapeutic affect, well they are wrong. The healthy thyroid gland does not deliver these kind of levels of T3 and certainly not in one go! That said and speaking from personal experience much research and lots of blood tests, the difference between 7 and 8 µg for me is intolerable whereas anything less than five and I am verging on hypothyroidism again despite at least 100 µg of levothyroxine.

HollieBerry profile image
HollieBerry in reply to Hashihouseman

Thanks for the advice. I’ve decided to half my dose. So just 2 x 5mcg a day x

Hashihouseman profile image
Hashihouseman in reply to HollieBerry

Even 5 may be too much in one go.... it’s disruptive even if you need all of it over a full 24 hrs. Delivery of thyroid hormones should be as smooth as possible and you may get a better experience splitting so that slightly more is taken overnight than through the day. I take a small dose going to bed something larger whenever I wake in the night (it feels like my thyroid receptors tell me when) and then on waking in the morning and something between midday and 2pm. Yup I know it sounds like a nuisance and it is but the difference in establishing a no adverse effect level of dosing is worth it. As I am splitting the liothyronine doses I take the opportunity to split the levothyroxine too, taking 1/4 of the total with each of the 4 liothyronine doses, works much better, less side effects.

Hashihouseman profile image
Hashihouseman in reply to HollieBerry

Oh and by the way, I forgot to mention from your initial post in this thread , you say you’re thinking of taking selenium... selenium is probably the single most directly important supplement for thyroid metabolism bar none. If you are deficient it could affect conversion of t4 to t3. Yes we need good levels of vitamin d etc (for many important reasons) but these are more consequential issues of hypothyroidism rather than directly necessary for basic thyroid metabolism.

Hurtlocker profile image
Hurtlocker in reply to Hashihouseman

Good morning... I got selenium 200 but not sure when to take it.. well away from levo and Liothyronine !!or on empty stomach early am or with lunch!!!what do you think...bottle does not say...it is from America!!!

Hashihouseman profile image
Hashihouseman in reply to Hurtlocker

I usually take mine in half a dozen Brazil nits with chocolate and green tea;)

If I take a 200 pill I take it any time a few hours apart from any levothyroxine

Hurtlocker profile image
Hurtlocker in reply to HollieBerry

Hi Hollieberry...I am exactly in the same position as you are with Liothyronine..10mic knocks me sideways!!!reduced gradually to 5mic .(in obe dose) still felt dreadful after 5 weeks.. started again still 5mic per day.. split into 2.5 doses 1 when I wake up and second dose of 2.5mic at 1pm ish after lunch...seems to be ok..no side effects...so far...take levo at night and vits sups through day..more energy...not sleeping in day any more to date!!let you know !!! Just keep playing with timings of split doses till you feel well...thats all we can do!! Good luck...

Hashihouseman profile image
Hashihouseman in reply to Hurtlocker

Timing and size of individual doses of both liothyronine and levothyroxine have been scandalously neglected by the endocrinologist profession. The human body never ever secretes the amounts patients are prescribed all in one go. The best results I get are splitting both into 4, and taking the first three beginning middle and end of the night, the clinicians scoff but what do they know!

HollieBerry profile image
HollieBerry in reply to Hurtlocker

Thanks Hurtlocker. It’s hard work isn’t it 🙈 I wouldn’t say Liothyronine knocks me about, I’ve been on 20mcg a day and don’t feel a thing... except my hairs falling out 🤦🏼‍♀️ gonna try again on 2 x 5mcg a day and pray that helps improve my overall health rather than the high dose?

SlowDragon profile image
SlowDragonAdministrator

How are you taking your T3

As small split doses through the day?

Did you start on just 5mcg for 1st week and work slowly upwards in 5mcg steps

Splitting dose into 3 doses at 8 hour equal gaps

Do you always get same brand levothyroxine at each prescription

Was levothyroxine dose reduced when T3 added

If yes, by how much

For levothyroxine or T3 to work well we need OPTIMAL vitamin levels

Cannot see any recent vitamin results

7 months ago you said vitamin levels were poor

Do you have Hashimoto’s?

If yes are you on absolutely strictly gluten free diet

Suggest you get FULL thyroid and vitamin testing done after 6-8 weeks on constant unchanging dose levothyroxine and T3

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

So taking last 5mcg dose roughly 8-12 hours before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

endomad profile image
endomad

We have all been there, I remember how ill I was, at one point the pain, exhaustion and anxiety made me think it wasn't worth going on. It's a slow process getting better as many of us were ill for years. I have been fairly balanced for 6 years, I am on huge dose of t3, I still crash if I over do things. So much if it is trial an error, that alone exhausted me ☺️ it's hard when you feel rubbish, I did a detailed journal for years, food, meds, supplements, sleep, mood everything, I found patterns that I slipped into, mood triggers etc but it's tedious. I still find exercise hard, just gentle walk, yoga and gardening. Anything more and I can't move for whole week. Old saying it's a journey not a race is so annoyingly true with thyroid. I just read people's experiences and looked for similarities and copied what they did. I can't say I am symptom free but I am about as good as it gets for me.

I would deff try what hashiman said split the dose just to see if it helps, you've nothing to lose. Lockdown has been hard the daily bombardment of doom is depressing. Lots of people find t3 is a bit rough and jarring on the system. I wish I had the answers for you and for me ☺️ it does get better it just takes some patience xxxx

jgelliss profile image
jgelliss in reply to endomad

I love the way you said thyroid dosing is a journey not a race. Very true. Many of us even after TT don't necessarily need T3 and do well with T4 sole. You are the only one that knows /feels what feels best for you and for you only. Trust what your body /gut communicates to you.

Lotika profile image
Lotika

Ugh poor you! It’s so frustrating isn’t it?

I guess you need to grit your teeth and hang on in there for the next test results, see what they say and then think about how to move the dosage when you have some concrete info.

In the meantime, try not to be too hard on yourself with exercise and diet. There will be plenty of time for that when you get closer to the correct dosage, whatever that is.

I tend towards lunch shortcuts like bulk cooking some quinoa and sprouting broccoli with a lemon, olive oil and herb dressing which stays in the fridge and then you can throw random leftovers on top of it for your lunch, as mood on the contents of the fridge and cupboards dictate: tuna or salmon, a leftover chicken thigh, some crisped bacon or sausage(!) toasted seeds, capers, sun dried tomatoes, olives, a bag of salad leaves... the odd boiled egg, so that it doesn’t get too boring but stays relatively quick and easy.

The other thing I am noticing is that my low-ish ferritin means I get a massive uplift from (shudder) liver... I really do feel instantly brighter after eating it.

HollieBerry profile image
HollieBerry in reply to Lotika

Ahh you’re right ☺️ thanks for reminding me that I shouldn’t worry so much about exercise at the minute, you’re so right, the time for that is when I’m feeling better! I push my body to walk hills and resent myself when I struggle... I think because people around me don’t appreciate how debilitating this illness can be, I don’t either.

Food wise I’m sure I’ll get back on the healthy eating streak, I’m just inconsistent 🤦🏼‍♀️ (adhd thing as you know) it’s crap times at the min so I’m trying not to beat myself up so much.

Hope you’re doing well, how’s your trial going? x

Lotika profile image
Lotika in reply to HollieBerry

I get what you mean about how we somehow dont realise what a mess we are in... with the dose changes you sort of feel weird to start, hope it will get better and then can’t remember what it felt like to feel any different... and then you do the test and it confirmed what you thought you felt earlier- I looked at my last test and thought, well, yes, fT4 is too blooming low!

I’ve upped the levo a fraction, so that is helping but think I need more of it to get a better balance. I’m still quite tired and not really firing on all 4 cylinders. Not back to my ADD self!

In other news, The Husband got a hashis diagnosis with a TSH of 10, he has another blood test soon and then we suppose they should start him on levo, so that is... um, weird! It is as if we nearly get me sorted and but we are starting from square one with him now!

HollieBerry profile image
HollieBerry in reply to Lotika

Oh dear. At least you’re full of experience and advice to help him by now! That’s a blessing ☺️

HollieBerry profile image
HollieBerry

Please don’t think I’m being stubborn, or rude, but I need to understand something this, and I’ve looked online but can’t find the answers....

Most people on here are saying my T3 dose is too high, but when I google the symptoms of too much T3 I don’t fit the list? I’m not jittery, sweating, anxious, my heart rate is normal... I literally don’t feel anything from the dose I take (10mcg at 7am & 10mcg at 4pm both away from any other medication or supplements) I need to understand how taking less will work better please? Genuine question not meaning to sound patronising, honestly 🙏🏼

McPammy profile image
McPammy in reply to HollieBerry

I started onT3 with 5mcg twice a day plus 75mcg Levothyroxine. 20mcg would push me well over the range. I know we are all different. When I have been over medicated I went very weak and tired. My heart was not racing it was the opposite and only 43bpm. I’m normally about 55bpm testing. You can feel weak and tired being over medicated. Why don’t you try cutting your 20mcg tablet into 4 snd take 5mcg twice a day leaving 7/8hrs between each dose. Do it for a week and see if you feel better. I’ve not had to increase my T3 only if I’m exercising for a prolonged period then I take 5mcg three times a day.

HollieBerry profile image
HollieBerry in reply to McPammy

Right ok thanks. That’s kinda what I needed to hear. Again, not being stubborn against others advice, because I LOVE advice 🙏🏼 But I’d not read anywhere that t3 over medication could make you feel weak and tired (which I do terribly) all I’d heard of what this jittery ‘hypo’ like symptoms.

Right, that’s it. I’m lowering my dose. Thanks for the advice x

McPammy profile image
McPammy in reply to HollieBerry

It makes me so weak I can hardly walk. Feels like I’m trying to drive with the handbrake full on. Makes me feel very heavy too. I took a blood test while I was feeling this way. My T3 was over the limit so I definitely know it was that. I kept a spare blood form off my GP just in case when I started T3. I was taken to the hospital blood clinic and I was over medicated. As soon as I lowered my dose I was ok again. I hope it works for you. Maybe do what I did and have a spare blood form off your GP and go to your local blood clinic to pin point.

HollieBerry profile image
HollieBerry in reply to McPammy

Yesss! Heavy!! Oh wow I’ve never felt anything like it. I thought it was just because I’ve put on some weight since lockdown. I’m 34 and my 71yr old mom was shocked the other day, watching how hard it was for me to get myself up off the floor 🤦🏼‍♀️ she said Hollie that’s not right at your age. Haha

Aww I’m actually looking forward to losing my dose now 😂 thank you so much x

McPammy profile image
McPammy in reply to HollieBerry

Let’s hope dropping the dose helps. Also take 7/8hrs apart. Let me know if it improves. I can take a little while to stabilise. T3 has a half life of 2/3 days so that half life at the higher dose will still be in your system. You’ll need a good week to feel any benefit of the reduction. Don’t be tempted to increase. Keep it steady and same amount.

thyr01d profile image
thyr01d in reply to HollieBerry

Hi HollieBerry, I'm going to talk about myself but only because this might give you a better understanding which you've asked for. Without T3 my TSH is over 95 with 95 being coma level. I take no Levothryoxine at all and rely on the T3. I take 2 x 20 mcg per day or less, 50 mcg is the maximum my endo says I could risk taking but I have a physically demanding job and sometimes need that extra. But that, as I said, is with my thyroid producing virtually nothing.For you, I think the same as others, maybe your T3 was started much too fast, too high a dose too soon. If I remember rightly I began with 5 mcg and this was gradually increased over 2 - 3 years. Starting on too high a dose has a negative impact. I hope this helps and best of luck, it's ghastly feel so awful.

HollieBerry profile image
HollieBerry in reply to thyr01d

Thank you for the advice, I’m going to half what I’m on. Its so frustrating that the endo put me on a high dose to begin... and call me paranoid, but I feel like they set you up to fail! Either that or they genuinely don’t have a clue. Thanks again x

HollieBerry profile image
HollieBerry

Endo started me on 20mcg a day so Been taking 10mcg at 7am and 10mcg at 4pm.

But I’ve finally accepted that I should take less 🙈 going to reduce by half. People were saying it was too high but because I felt nothing from them, like they may as well be sugar pills, I couldn’t get my head round that. If I’d felt jittery and ‘hyper’ like symptoms I would have sooner. But with feeling nothing I didn’t get the logic of taking less if you know what I mean?

Endo also wanted me to reduce my levo from 125 to 50 from the start 😱 which I didn’t do. I kept the same for 4 weeks and have only now reduced to 100.... because of my short supply rather than his instructions!

I haven’t had my vitamins done recently. I will do though as the 6wk blood form the endos given me is just for Thyroid function, not vitamins.

So It’s just a case of paying for it myself when I’ve got the money.

Will have bloods done soon thankfully. Then I’ll know where I’m at x

Cat013 profile image
Cat013 in reply to HollieBerry

Dropping 25mcg of levo and dropping your t3 at the same time may make you feel rubbish. If I were you I’d keep the same levo dose while you trial the t3 reduction.

If it’s of any help 20mcg did nothing whatsoever for me. I felt nothing. I’m now trialing 50mcg. We’re all different 😊x

MiniMum97 profile image
MiniMum97

What are your ferritin levels like? Low ferritin makes me feel how you’ve described - wiped out, weak, tired, exhausted by activity, breathless.

Do you have a recent thyroid blood test and test of your vitamin levels?

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