Hi I've been on levo for 2 years, was 125mcg which gave me palpitations, I'm much better re palps on 100mcg however the rest of me isn't! But I've dropped to 100mcg the past 2 months as was too much again and whilst waiting for endo to sort out my T3 prescription (who also wanted me to drop levo to 75mcg but I wont).
I've been prescribed 10mcg lio by endo that I def won't see again, for various reasons like withholding trst results etc and also as its taken 6 months to get to this point especially as I needed it compounding due to mcas and other allergies.
Just about to start this weekend but thinking of starting with a few days of 2.5mcg to ensure I'm OK with new meds, then add a 2nd dose 2.5 for a couple of days maybe? Before doing 5mcg a.m and then add 5mcg 2nd dose abit later again. I thought I'd try this based on advice here to me and reading others' posts. Especially as I'm so sensitive to meds - does this sound a good idea please?
Only thing is I'm not sure when to take it? Was thinking morning dose with levo an hour before breakfast, but when should 2nd dose be? I have to take alot of high dose vits/mins as I self inject vit B12 daily due to P.A. So trying to fit it in where it doesn't interact with anything means either lunchtime or mid to later afternoon best. But still not sure how to do it as my sleep patterns are really bad atm (just moved out of mould and have M.E) and my breakfast is very late morning and lunch mid to late afternoon! Such a mess!
Any advice would be so welcomed please! Especially from those with knowledge of mcas etc but it also sounds like alot of thyroid patients are v sensitive to meds anyway. Thankyou for reading all this 🙂
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Opal79
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starting with a few days of 2.5mcg to ensure I'm OK with new meds, then add a 2nd dose 2.5 for a couple of days maybe? Before doing 5mcg a.m and then add 5mcg 2nd dose abit later again
Yes that’s what we normally recommend…..going slowly
See how you feel
morning dose with levo an hour before breakfast
Yes
2nd dose …..roughly 8-12 hours later …..whenever fits in
Thanks very much for your replies. Please can I just check, is it best to take lio away from food like levo? I hear different things so am unsure .
Also i didn't realise 8 to 12 hours levo lio gap is best, I may try to take morning levo and lio much earlier like 8amnif i can, and try to reset my system and mealtimes, so that I can take lio around 4pm maybe. Would that work?
Sorry another question but what would the symptoms be if it's all too much for my system please? Unsure if it will be much different to mcas symptoms or not. Hoping the gradual transition will alleviate this and maybe take 1½ to 2 weeks, does that sound long enough please?
Thanks so much for answering all my questions. I actually tried 2.5mcg this morning with levo at 9. I'd only had about 5 hours sleep and as it was from 5mcg compounded capsules it's hard to know how accurately distributed the meds would have been with filler when i split it.
Anyway, I felt quite anxious prior to it and not long after was a bit hyper hut again likely the anxiety. Also within an hour or so I was pretty tingly and hot all over. I was trying to go back to sleep but had weird lucid dreams every time i dropped off and it was abit scary. I guess this could've been partly due to lack of sleep but was odd. 2 hours later I had some breakfast which seemed to ground me and I slept really well for a couple of hours. I have felt pretty worn out the rest of the day too. Is this kind of thing to be expected please?
I do have mcas and just moved out of mould so my mast cells are extra sensitive right now and maybe found the T3 abit of a shock to the system. My whole sleep pattern has been awful for years a d particularly this week as i had an M.e relapse, I'm hoping with time my body will adjust or does it sound like a bad idea to keep going please?
No worries if you can't answer that if course 😊 and thanks very much again
Thanks so much for explaining all this, I get so confused so easily!
Please can I clarify you meant you only did 2.5mcg a.m dose then 5mcg a.m dose before you started 2.5 p.m dose then 5 for pm dose? Or could I do 2.5 a.m then 2.5 pm, then the same for 5mcg? Sorry I hope that made sense!
I've had my 5th day today of 2.5 and made it a little smaller since day 2 and didn't react like day 1 so I wonder if it was abit too big a half capsule or something on that first day? It feels like tomorrow I could increase but not sure whether increasing the morning first, or go for the afternoon first instead?
That's interesting to hear how different we all are with our dosing and the timings etc. I may eventually dose according to cortisol amd some Paul Robinson thinhs I've read, as I've had some lower readings lately but def want to go slow as you advise , I don't want to miss the sweet spot either, it's taken so so long just to get to this point. Which does make me impatient and I've put on so much weight the past year! But I'm trying to be patient lol.
Sorry not sure what you meant about dose was increased after next blood test before cutting, please could you clarify?
Ah thanks for clarifying, and no you weren't at all unclear, I'm extremely foggy! 😊
Endos don't seem to have any idea at all do they? The one I saw wanted 10mcg in one go, was surprised when I asked for 2x 5mcg doses especially as compounded which he didnt understand, which is largely why it took me 5 months to finally get this prescription.
I will follow what you did, thanks so much for explaining again and your patience with me! Some others have suggested the same too and makes the most sense to me, I wasn't sure about doubling a.m dose.
Please could I also ask, it poss to get abit more heartburn due to starting T3? Mine has worsened but it could well be down to other things, just wondered if it's a common theme or not please?
Taking any dose T3 will usually reduce TSH quickly, so can make you more hypo if your own thyroid was still managing to make some thyroid hormones before adding T3
Ah thanks that's interesting, my TSH was higher last time I tested. This week I've actually been even more tired and needing alot of sleep so this could explain it. Thanks so much
Hi again @SlowDragon I'm sorry to bother you again, I just wondered if you could explain abit more please about the TSH reduction? Did you mean the T3 makes the TSH too low for a while, before things settle or something? My heartburn has been much worse in this 1st week of 2.5mcg which finally eased abit friday. I started another 2.5mcg yesterday afternoon and it's ramped up again.
I do have mild chronic gastritis (tho gets v painful) and Pernicious Anaemia which I self treat with B12 injections daily, following diagnoiss with a B12 doctor and and using the B12 society protocol.
This could be a flare for other reasons but it had got abit better with injections, so just trying to understand the TSH thing really as it was almost 2.5 last time I checked in Dec, and I'm usually better around or just under 1.
Also, I forgot to ask but is it OK to take heme iron, folate, quercetin and probiotics within a couple of hours of lio please? I leave 4 hours for levo but will be hard to leabe longer than 2 hours for the above, is that OK please?
No worries if all this can't be answered, just asking incase. Thanks very much for all your help 😊
Thanks so much for both your replies. I'll post about heme I think incase anyone knows.
Thanks for explaining about the TSH, I actually lowered levo to 100mcg going into winter as well while awaiting lio, knowing it would raise my TSH but above 100 I get terrible ectopic heartbeats and FT4 goes too high. So I guess in doing so I've not prepared myself as much as I would be, for the sudden TSH lowering! What a complex nightmare thyroid disease is!! I will have to ride it out I guess and hope by the time I get to 10mcg its enough (if its not I'll push to increase).
I actually use Roseway Labs (I'm in UK) to compound lio due to allergies and mcas. I couldnt find a suitable lio without problematic excipients so went for cellulose caps. I've never had their meds before but assuming I'm OK as ok with other cellulose caps for other things. I do have a nickel allergy too and unsure whether it's systemic as well as dermatological, and cellulose is high in nickel so there's a chance this is a problem I guess but I'm not sure.
My levo is Wockhardt which isn't ideal and always irritated me abit, but I didn't want to take anything with mannitol or acacia in, (I also have sulphite allergy which is in most lio hence eventually going for compounded lio) and this levo seemed the best. But I'm pretty sure I'm not ok with lactose, haven't had dairy for years (also gluten intolerant) and when tried to reintroduce milk recently my guts cant take much. I never eat sugar just fruits sometimes and theres sucrose in Wockhardt. I have been eating paleo for years which helped until mcas started a few years ago (due to mould) and now diet is more limited than I'd like. I've just moved out of mould after 9 years of it, thyroid and P.a pre-date mould tho I think, just dx far too late. So also having some kind of (unintentional) detox from that too atm. Sorry that was long but yes am extremely sensitive!
As I've never been great with my levo, is there anything with less excipients than Wockhardt but without mannitol, acacia, sucrose or lactose do you know please? Maybe that would help abit or is it best to keep levo brand the same while I'm titrating lio?
So sorry for more questions! And thankyou so much for your advice I appreciate it.
Oh thanks so much for that! I will look into ingredients, I've got a sulphite allergy which is in so much so will research and read the links too, thankyou 😊
Hi Opal. My experience is very similar to yours, and I am now 6 weeks into taking 10mcg T3 per day. Like you, I started with 2.5mcg once, then increased to twice daily after a few days. To be honest, I wish I had taken 2.5mcg once for a week, then increased to twice for another week, because I did have a few palpitations at first. I also further decreased my Levo because of this, but maybe that wasn’t necessary because it’s all settled down now, and I feel much better. I’m waiting for a couple more weeks to retest, then take it from there. Good luck 🙂
Hi Ukie, thanks so much for sharing. I'm glad to hear you got there in the end, are you feel more stable now? And can I ask how long the palpitations lasted and did you have any of effects? Wondering if I should do maybe a week of 1 x 2.5mcg and build more slowly.
I say this as I tried 2.5mcg this morning with levo at 9. I'd only had about 5 hours sleep and as it was from 5mcg compounded capsules it's hard to know how accurately distributed the meds would have been with filler when i split it.
Anyway, I felt quite anxious prior to it and not long after was a bit hyper hut again likely the anxiety. Also within an hour or so I was pretty tingly and hot all over. I was trying to go back to sleep but had weird lucid dreams every time i dropped off and it was abit scary. I guess this could've been partly due to lack of sleep but was odd. 2 hours later I had some breakfast which seemed to ground me and I slept really well for a couple of hours. I have felt pretty worn out the rest of the day too. Did you have anything like this?
I do have mcas and just moved out of mould so my mast cells are extra sensitive right now and maybe found the T3 abit of a shock to the system. My whole sleep pattern has been awful for years a d particularly this week as i had an M.e relapse, I'm hoping with time my body will adjust or maybe go slower like you wished you had?
Before I took T3 I was getting some good nights, and some where I was awake for hours, then exhausted the rest of the day. It’s early days, but it’s been a couple of weeks since I had a bad night, so fingers crossed 🤞. I’m feeling less tired, and so warm, in spite of the cold spell. I think the tablets split fairly evenly, I haven’t noticed a problem.
The palpitations (which I had also been getting when on a higher dose of T4 only) involved waking in the night sweating all over, and I was aware of my heart beating really fast. Sometimes I would nod off, then wake hours later with it still going on. It frightened me when this happened, because it can’t be good for my heart. It hasn’t happened for about 4 weeks now. I haven’t noticed any weird dreams.
I don’t know anything about mcas, but I think for me it would have been a good idea to have a week on 2.5mcg once per day in the morning, then another in the afternoon for the next week. I was a bit impatient because I’ve been hoping for T3 for a long time, and I wanted to get going when I finally got my hands on it haha! Maybe try to take it extra slow at first if you can.
Hi Ukie, totally relate to the impatience and I feel the same! 2.5 years diagnosed but i suspect I've had this or at least the hashi for decades. I just don't thrive on levo, although up to 100mcg it made my Labs better but of course not my FT3 which was most important! I've put on 3½ stone in the past 18 months and I do think it's because I started injecting B12 which is a good thing obvs, but revealed how bad my thyroid was underneath my P.a diagnosis. It's so hard being patient when you feel so uncomfortable and hard to move your body around, but I must be patient!
Today was my 5th day of 2.5mcg in the morning and since day 2 I've been ok, I wonder if my 1st day I miscalculated the half cap and went abit over? Reduced abit and been OK the other 4 days. I'm wondering whether to now add 2.5 tomorrow afternoon or add it to morning dose instead? Is that what you did?
I hear you on the night sweats I have them badly atm but unsure if it's a mould detox, a dry house, perimenopause or levo effects, so hard to tell! I'm so glad to hear things are getting better for you,especially after so long struggling. I hope things continue to improve 😊 thanks so much again
I would add it in the afternoon, rather than hit yourself with a 10mcg dose all at once. I tried 10mcg in the morning early on, thinking that the night sweats were caused by the afternoon dose. The night sweats continued though, so I felt they must be caused by the T4, as the T3 should have been out of my system by then. I reduced T4 and returned to twice daily T3. No night sweats at the moment 🤞but I think I’m now a little undermedicated. I’m doing another blood test in a couple of weeks so I’ll see. Good luck with your journey 🙂
Oh that's interesting I wonder if the t4 has caused my night sweats too, they've only started since on levo I think? And def caused palps above 100mcg. I dropped to 100 a couple months ago as was unbearable, but once feeling stable on T3 will see if I can reduce t4 again but I've read here it needs to be one change at a time otherwise hard to tell what's caused by what. So frustrating tjo!I hope your bloods give you some idea of what's been happening for you, it's such a jigsaw puzzle dealing with thyroid isn't it? Still barely got my head round the basics! Thankyou so much for your help 😊
hi Opal I also have Me,so I take my Levo & first dose Lio when I go to toilet very early morning on waking as my next awakening could be anywear up to 8 hours or more later depending on how I am if I’m having a flare it could be so much longer so I always take it on my first toilet trip after going to bed and my next Lio I take 4pm late afternoon Hope this helps
Hi Nat107, thanks so much for sharing. I really hear you on the M.E and then with flares etc, I myself am in a huge flare/relapse atm.It's good to hear you have a system going depending on where your m.e is. I have avut of trouble as need to take high dose magnesium before bed which needs to be 4 hours away from thyroid meds. So if j go to bed really late then waking in middle of night isn't an option for early levo, as it would likely be dawn kind of time by then. So I'm abit stuck to about 8am for levo/lio and probably 4ish afternoon based on other supplements needed throughout the day. Such a nightmare!
I tried 2.5mcg this morning with levo at 9. I'd only had about 5 hours sleep and as it was from 5mcg compounded capsules it's hard to know how accurately distributed the meds would have been with filler when i split it.
Anyway, I felt quite anxious prior to it and not long after was a bit hyper but again likely the anxiety. Also within an hour or so I was pretty tingly and hot all over. I was trying to go back to sleep but had weird lucid dreams every time i dropped off and it was abit scary. I guess this could've been partly due to lack of sleep but was odd. 2 hours later I had some breakfast which seemed to ground me and I slept really well for a couple of hours. I have felt pretty worn out the rest of the day too. Have you had anything like this if you dont mind me asking please?
I do have mcas and just moved out of mould so my mast cells are extra sensitive right now and maybe found the T3 abit of a shock to the system. My whole sleep pattern has been awful for years and particularly this week as i had an M.e relapse, I'm hoping with time my body will adjust or maybe go slower?
Hi Opal i feel what your going through and totally understand, it is so hard trying to fit in patterns same each day for medication with ME when your not sure when you will wake up in a flare, I myself have had one for over 4 weeks myself and then it’s just as bad when you start to feel a bit better it does t last long. Taking levo t3 on my first trip to toilet through the night sometimes changes to 7am dependant on how I am but I can always take it before 7am if not through the night as my hubby is up for work early so it’s my cue to take it if my pill dosette box is still full for that morning as I only take levo & t3 together all other medication is spaced out through the day often as I’m up n down most of the night as my sleep is also very poor. I was also taking magnesium before bed around 9pm but have now changed to magnesium spray on my legs knees arms and I have just purchased a face body sleep mist which even though Iv only used over a week I find it has been really helpful to sleep a tad longer in my first part of sleep, I have had some really strange and weird dreams also and really vivid and quite scary too, woke up quite upset a few times l. I found lowering dose of my t3 has stopped the anxious feeling of like being hyper and settled down better to make me feel more comfortable so it may be your dose needs tweeting a bit either levo or t3, I hope you find help for this so to settle better x
Hi Nat107 thanks very much for your reply. I'm sorry to hear you've been in a flare, its really so hard to steer that ship around isn't it, and so frustrating. Hugs.
Yes the timing is quite tricky due to my P.A diagnosis I'm on a vitamin B12 protocol which is slowly healing me but I have to be on it with the accompanying vits and minerals. So there's little wriggle room with magnesium, it's 600mg a night! And I can't absorb it via skin so has to be orally, but yes the sprays are good aren't they I'm glad it's helping you. I could take mag malate 4 hours after levo but then gotta wait another 4h for lio and that feels too pressurising with times I'd never stick to it!
It seems 8 or 9am is the only time and setting alarms etc, my partner us my carer atm which makes it abit easier but I have issues with my oesophagus too so hard to sit up and start swallowing loads of stuff! Honestly no fun all this is it lol. Hope you're doing better on your lower dose and things improve for you soon. Thanks very much again
I’ve had good success by taking 5mcg T3 at 7.30am then again at 3pm. I’ve found 2 doses of 5mcg a day is more than sufficient. My latest T3 bloods was 5.6(3.7-6.00). I get my bloods checked ‘2hrs after’ taking my T3 as I don’t want it to go over level.
Hi McPammy sorry I've only just seen this. Thanks very much for sharing, I was under the impression we needed to stop T3 for 8 to 12 hours before testing or something like that?
Yes I would find taking 2 doses easier each day too, just need to build up to it it seems, as I'm super sensitive with mcas too. Thanks very much again!
I put together a piece on starting T3 based on my own experience and some of Paul Robinson's suggestions thyroidcanceradvocates.net/... The timing is different than what is often suggested here but has worked well for me and others – "4x4" meaning 4 to 6 hours between doses and at least four days between changes. Because of the shorter half life of liothyronine, it can be pretty flexible for experimenting to see how you do with it. And if an increase feels like too much (palpitations, anxiety) you can simply drop back a dose for a few days.
Some people switch their levo to bedtime when starting T3. I feel taking them at the same time wastes any benefit from what you might convert from the levo.. (I.E. if we didn't get some conversion benefit from the levothyroxine we take, we might as well throw it away and just take T3. However many of us on the cancer boards have tried this and not done very well.)
I' ve always encouraged folks to print it out and share and discuss with their doctor - this has seemed to work well in the US (even some who intially questioned the benefit of T3) but I doubt it would go over well with docs in the NHS.
Hi Poniesrfun, sorry I only just saw this. Thanks very much for app the info I'll have a read. That's interesting about the 4 to 6 hours thankyou, I was going to leave it more like 7 or 8 but as yet not even gone beyond 2.5 in the morning! (I've been so sensitive to it). I've actually just bought Paul Robinsons 1st book too but haven't been well enough to read yet (I have other illnesses), hopefully soon! I'm happy to take levo with lio and see how it goes for sure. Thanks v much again
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