I am about to try some experiments to get to optimal treatment now that my private Endo has effectively concluded that he’s “fixed my thyroid” and probably won’t be interested in any more tinkering.
The first experiment is to try once a day Liothyronin. This is easier from a dosing point of view and means I don’t need to remember the second dose.
I am currently taking 5mcg on waking and 5mcg at 2.30pm - giving a gap after lunch.
I also take 150mcg of Levo in the morning. Not planning to change this.
If I instead start taking a single 10mcg dose of Liothyronin in the morning what signs and symptoms should I look out for that tells me this is not right for me?
Alternatively what might be the positives of taking the single dose in the morning?
Part 2 of the experiment I may try taking all 10mcg at night before sleep and see how I fare on that.
I’d be keen to hear of other members’ experiences of making these kind of changes.
We are all different and owe it to ourselves to do sensible experiments to see if we can get to optimal.
I know some people take T3 once a day, some twice a day and some 3 times a day. We are all different so let’s see the range of views.
Some of you will have seen my last post with recent blood test results:
I think definitely worth trying taking the T3 all in one go in the morning. If it has the same effect as the split dose, then life got simpler, which is great and if not, well, nothing ventured, nothing gained. At least you know. Someone mentioned on a thread I started when the endo wanted to move my second dose that their endo said we can get more T3 in the tissue by taking it in one dose, so worth a shot from that perspective in my view.
I would look for a raised heart rate (if you use a Fitbit or similar) and palpitations as a sign to stop and rethink. Or any sense of extra grottiness. But not at all “expert” in these matters. I use a Fitbit so I feel like I can safely say that the HR hasn’t moved during my T3/T4 trial, which makes me feel that I have an objective measure of how things are going.
Sounds like endo thinks you are fixed, but you’re not so sure? I have been dwelling in this conundrum. I mean I last felt well in 2014, so I struggle to remember what “well” felt like. That having been said, I know *this* isn’t right. I felt exhausted after a 3 hr walk yesterday and quite often do 26 mile hikes in a day in the summer. I can’t even believe it was possible a year ago and I wasn’t right then! I think we need to rely on instinct as “normal” will have been different for all of us. But it’s been so long, I worry that I won’t recognise it when I see it. And I suppose maybe it is an argument for staying put longer on a dose. Maybe the meds get right and then we don’t feel right yet because the body isn’t used to it and we’re not yet using the body the way we used to, so of course we feel “not right yet”? I don’t know but it is definitely bothering me! I feel like we’ve all been gaslighted by the medical profession a few times by now, which doesn’t help the confidence either. And I’m horrifically impatient and a bit of a perfectionist, so I can’t see myself sitting still and not tweaking things when discharged as “all fine” by an endo if I don’t quite feel it.
Taking my dose as you are currently doing (am and around 2pm) has improved things a little for me versus am and pm, but obviously, as I tried to point out to the endo, it doesn’t suddenly mean I feel like I’m taking enough medication, mind!
Gosh, what a long-winded way of saying I would try it too! I guess your endo would hate it as they would argue peak fT3 would be too high. On that subject, I would say that such research as they have comes - I believe - from people naturally hyper, rather than hypos on meds, which are slightly different animals, of course. Hypers probably have sustained high fT3, where as we have a short burst after we take our pills. (NB - speculation on my part. I’ve read a couple of journal articles and some books but still know very little. On the other hand, the consensus document for future research on combination therapy shows very clearly that the science knows very little as things stand.) Edit: I realise this isn’t entirely correct as they do have research on long term use of T4 only and low TSH. But again, I don’t think anyone is going to have high peak serum fT3 on LT4 monotherapy.
Hi thanks for the reply. This is exactly the kind of thing that I needed to know.
The endo suggested trying to experiment to see what works best but did not give me a lot of detail hence I want to see what others’ experiences are and also what to look out for.
First need to measure my HR with a smart watch a few days to get a baseline and then start experimenting!
I hear you when you say you don’t know what normal is. For me I think I’ve been somewhat mild Hypo since the age of 14-15, was diagnosed when I was 26 as by then I was completely dysfunctional and couldn’t get out of bed in the AM. Even when I did get to work I couldn’t get anything done. No surprise I lost my job!
The problem with using heart rate as an indicator of whether or not you are doing the right thing is that people can raise their heart rate with excessive T3, when T3 is absorbed normally and your dosage is right, and when T3 is too low.
So, as well as doing your experiments on how you feel taking T3 at certain times, note down the onset of faster heart rate (and what that rate is) and/or palpitations compared to when you take your T3, and also note down when the palpitations and faster heart rate stop being noticeable (which is very hard to do!)
For example...
1) If I'm taking too much T3 my heart rate might rise 50 - 70 beats a minute within an hour and stay above my comfort level for 5 hours.
2) If I'm taking the right amount of T3 my heart rate might rise by 10 - 20 beats a minute within an hour and last for 20 minutes.
3) If I'm taking too little T3 my heart rate might rise by 30 beats a minute and stay that way for 2 hours.
The above descriptions apply to me. Your experiences will differ. And you have to try and identify what each situation is telling you about your dose.
Note as well that low iron/ferritin can cause tachycardia (fast heart rate).
And also note that eating a lot of sugar may raise heart rate a lot, too.
After doing this for a while you will start to understand what messages your body is giving you without keeping notes.
That was really helpful humanbean. I will have to make sure I take my doses at exactly the same time - or write it down - so that I can analyse properly for myself...
So well said and explained humanbean. I would add in addition in my experiences that coffee and chocolate would cause palpitations too for me. Thank you for your great knowledgeable posts you share with us. Very informative and helpful.
The heart rate thing is very complex. A good few years back now I tried Paul Robinson's T3 only method and carefully monitored all the signs and symptoms at least 4 times a day. My HR never rose, but I did become over medicated and couldn't function. As my temp remained low, my HR remained good, I had nothing to work with. I just got more and more exhausted.
Having been on Levo in the intervening years, I started combo treatment in November 2020. By this time I am in persistent/permanent atrial fibrillation which increased my heart rate from mid 70's to high 90's with a beta blocker! That has really bothered me, especially as it didn't come down even when I had a cardioversion which lasted several weeks in normal rhythm. But now I'm adding T3, I notice that 1-1.5hrs after I take T3, my resting heart rate comes into the 80's. Still too high, but it's a start. As the T3 effect wears off the heart rate goes back into the 90's.
I just wish I could get well on smaller doses of T3. Yesterday for the first time I went up to 30mcg a day, split into 2 doses. I woke up slightly in advance of my alarm this morning and got straight up, rather than taking meds and collapsing back into a sleep of the dead for 2 hours more. But the total amount of 30mcg really worries me when I see others on here using 5mcg a day or 10mcg and getting fit, active and well on it. My illness has turned me into a fat old lump stuck to the sofa! I did drop my Levo from 125 to 100 last week and felt dire by yesterday so assumed it was time to increase the T3. It's so hard, but lowering my heart rate and calming the misfiring atria is my goal.
I’m going to try consolidating into one dose a day first as I find it will be easier to take. If no joy then will consider thrice a day.
My Endo discourages the thrice a day regime and his favoured approach is twice a day.
Docs love to put us in easy boxes but the experiences on this forum show there is no one size fits all approach. Hence we need to try all possibilities.
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