So the result of my appointment with NHS endocrinologist is that I have offered a trial of T3.
My current dose is 125mg levo a day and I am actually ticking along okay. I defintely am still more fatigued that I would like but other symptoms are all managable, though I also know I have felt more well in the past and obviously would like to get back to that. Blood results are attached, I reduced dose from the most recent test because I felt lost weight I didnt need loose and my TSH was very suppressed. I will test again and see if it has come up a bit.
I am a bit anxious to mess with things, particularly adding in t3 because I have a lot of health anxiety around heart rate and palpitations.
The proposed new dose is to reduce levo to 75mcg and add in 10mcg x2 a day of lio.
Does anyone haave any thoughts on this, my initial reaction was I would like to make a smaller change, ore levo and less lio.
I didn't get to speak to the consultant but the registrar I spoke to over the phone was quite unhelpful and mostly also concerned about my low TSH and tried to tell me the fatigue was long covid despite suffering with it for the last 10 years, so I am worried this treatment plan is with the aim of bringing that in to range and leave me unwell again.
Would be very grateful for any thoughts or input as I ponder my next step.
Thanks!
History is Graves with RAI in 2008
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Lilacsocks
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I defintely am still more fatigued that I would like but other symptoms are all managable, though I also know I have felt more well in the past and obviously would like to get back to that.
You shouldn't have to 'manage' symptoms, you should get rid of them. You have them because you are a poor converter and your FT3 is too low. So, adding some T3 to your dose of levo is the obvious way to go.
I reduced dose from the most recent test because I felt lost weight I didnt need loose and my TSH was very suppressed.
A suppressed TSH is not a good reason to reduce your dose. And it's highly unlikely that the high FT4 was responsible for your weight loss because you are a poor converter. T4 is basically a storage hormone that doesn't do much until it is converted to T3, and your T3 has always been low.
That said, your FT4 was too high and still is. And that would make your conversion even worse.
I am a bit anxious to mess with things, particularly adding in t3 because I have a lot of health anxiety around heart rate and palpitations.
Raising your FT3 will improve your heart health. Palpitations can be a hypo symptom.
The proposed new dose is to reduce levo to 75mcg and add in 10mcg x2 a day of lio. Does anyone haave any thoughts on this, my initial reaction was I would like to make a smaller change, ore levo and less lio.
You're right, reducing your levo by 50 in one go is too much. It's always suggested on here that you reduce by 25 mcg, wait a week and then introduce 5 mcg T3 for a couple of weeks. If that goes OK, then increase your T3 to 10 mcg.
Taking T3 will reduce your FT4 level, anyway, so reducing by 50 mcg would probably be too much. Taking T3 will also supress your TSH, so stop worrying about that. It's suppressed because you don't need it.
When you say '10 mcg x 2 a day', do you mean a total of 20 mcg? That is certainly too much to start on. So, continue increasing by 5 mcg every two weeks until you get to 20 mcg. But, even if you find you don't need the full 50 mcg, just accept the prescription and keep the extra. It's always handy to have a little spare T3 to fall back on, in case of emergencies.
I am worried this treatment plan is with the aim of bringing that in to range and leave me unwell again.
If it is, it's doomed to failure, because taking T3 - especially a dose of 20 mcg - will suppress your TSH, that's what it does. And, if he doesn't know that, he has no business prescribing it.
I think I will give a call and ask to keep levo at 100 and start with less lio.
Is 25mg levo about equal to 10mcg lio?
I believe the 10 X2 a day means 20mcg total, yes. But not completely sure because I didn't actually get to talk to him and ask any questions.
Should I expect my TSH value to just drop off entirely then? Is this generally accepted by drs prescribing it or is it likely to be used against me?
I am aware of the studies people have shared on lower but not supressed TSH for patients on Levothyroxine, is there anything similar for those taking combination therapy?
No, don't do that. Take the prescription for 20 - or 10, or whatever it is - but start yourself on 5 mcg for two weeks and then gradually work up to the full dose. The endo doesn't have to know you're doing that. And you can keep the extra T3 for emergancies - always good to have a little stash.
Is 25mg levo about equal to 10mcg lio?
Who knows! That's what they say but it's a little silly to make comparisions like that, because it depends on your absorption and your converstion. If you can't convert at all, 25 mcg levo isn't equal to anything - of course, you'd be dead, but you see what I mean. There are too many variables.
Should I expect my TSH value to just drop off entirely then?
Probably, yes. But the ways of the TSH are many and mysterious!
Is this generally accepted by drs prescribing it or is it likely to be used against me?
Unfortunately no, it isn't. Very few doctors seem to understand that. They have little understand of thyroid - especially T3 - and little to no logic. Given that the whole purpose of TSH it to stimulate the thyroid to make more hormone, why would they expect it to still be hanging around when you're adequately dosed? The trouble with TSH is that it can't go below zero. But it can sometimes be at zero when your thyroid hormone levels are still too low. Oh, I could write a book called The Trouble with TSH! It is not a test to dose by.
I'm afraid I have no idea if there is such a study about T3 and the TSH. If I were you, I would write a new post asking just that in the title, so that those that know can respond.
OK, well, no matter, take the 75 and see how it goes. But, if you can manage to take 100 mcg until you get your dose of T3 up to at least 10 mcg, that would be less of a shock to your body than dropping it by 50 mcg in one go.
When you have your next test, the odds are they will say your FT4 is now too low and want to raise it, anyway.
Oh dear. They really don't have a clue, do they. Perhaps you can wriggle your way out of that one by keep making excuses why you can't go for a blood test? Say you have a very bad cold.
Thinking about it, I'm wondering if your endo hasn't set you up to fail...
I had severe palpitations when first taking levothyroxine. The cardiologist couldn't understand why and I had a number of overnight records taken.
When I was prescribed T3 (liothyronine) my palpitations ceased and I no longer took levothyroxine (T4) and haven't had any more awful palpitations. I also feel well.
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Dr changed t3/t4 dose? How do i do it? 
Confused about need to raise tsh.
Starting T3
