Testing T3/T4 Combo

[FancyPants54]

I've recently started the combo treatment.

I take 125 Levo in the morning with 10mcg T3 and 5mcg T3 at 3.30.

Initially I was told to drop Levo by 25mcg to 100 when I introduced the first T3. I did, felt great for about 2-3 days but immediately I couldn't get to sleep. Not a normal issue for me. I couldn't stand not getting to sleep so I put the Levo back to 125. My results were not high anyway unless I took 150 Levo as I tried once and went over range and felt weird. (Results in profile).

Now I'm feeling more hypo than ever. Really tired, weak aching legs and feet, sore bones, bad fluid retention and inability to pee much and stiff all over. My face looks hypo puffy. My hair is falling out more quickly I think. I feel worse than I did on just 125 Levo really except that my permanent atrial fibrillation loves the T3 and is calm for hours after my morning dose. Mostly OK after my afternoon dose and more strident at late evening/night when the T3 depletes. So much for the scare stories.

I'm wondering if I should now try dropping the Levo by 25, now that the T3 has got a bit established. Any thoughts? Before I try that, I have a finger prick test kit on standby to see what is currently going on. Given that I take 10 T3 at 8am and 5 T3 at 3.30pm, what should I do about the T3 for the sake of an 8.30am blood test on Monday?

[DippyDame]

How long ago is "recently"?

Perhaps you've added far too much T3 too quickly ....10 + 5mcg is a lot for the body to adjust to in a daily dose. I'd be inclined to leave the levo dose and only add 5mcg for a couple of weeks then try adding another 5mcg. Only change one hormone at a time.I added only 6.25mcg (25mcg tabs) to start with and that was ok

Splitting didn't work for me and I'm now T3-only which I take at bedtime....we are all different.

I take it your FT3 is still within range

Trial and error is often the way to go!

Hope things improve soon.

[Hashihouseman]

Too much t3! What on Earth were your actual blood levels of t4 t3 and tsh to indicate that much t3 was appropriate? Is there evidence from blood testing that you do not convert t4 into anything like adequate t3? The excess t3 will be jacking your body’s thyroid feedback loops around so the system won’t know if you’re hypo or hyper. Way more t3 comes from conversion, even poor conversion than you may think and getting combination dose right is a process of very subtle gradual adjustments. The best place to start is aiming for normal physiological thyroid gland production, because that’s what replacement thyroid therapy is seeking to do e.g. 100mcg t4 with 5mcg t3 both taken together in roughly equal split doses. Both t4 and t3 are cumulative so if you are taking even slightly too much of either levels will gradually build to excess.

[FancyPants54 in reply to Hashihouseman]

15mcg T3 a day is not too much for an almost 6ft woman who is very overweight. I have done the Dio2 genetic test and have inherited the polymorphism from 1 parent. My heart feels like it likes the T3 and goes back to struggling when it wears off. T3 makes my permanently fast heart rate reduce for a while. I stuck with 10mcg T3 for 2 weeks and by the end I felt in need of the increase. What I need to find out is if I need to reduce my Levo now. It might be too much T3, but perhaps it's not enough. There are plenty of people on a lot more T3 a day than 15mcg.

I did also try splitting my T4 just the once and felt awful all day. But what I need to know for tomorrow or Tuesday is when to take my T3 today to fit into the test window. I want to do the test to see where my levels are sitting now to determine if I lower my T4 or not.

[SeasideSusie Remembering in reply to FancyPants54]

FancyPants54

But what I need to know for tomorrow or Tuesday is when to take my T3 today to fit into the test window.

We always advise that last dose of T3 should be 8-12 hours before blood draw. So if you're doing your test at, say 9am, then delay your afternoon 5mcg until between 9pm and bedtime

[FancyPants54 in reply to SeasideSusie]

Thank you. Would you split the 5 and take 2.5 at 3pm and 2.5 at bedtime? I've seen that kind of thing mentioned.

[SeasideSusie Remembering in reply to FancyPants54]

Fancypants54

Would you split the 5 and take 2.5 at 3pm and 2.5 at bedtime? I've seen that kind of thing mentioned.

No, personally I wouldn't. You are already splitting your dose. Some people split their dose into 2 or maybe 3. Like you, I split mine into 2 and just adjust the timing of the second dose the day before the test. If you want to split the dose then I'd suggest you take 3 x 5mcg doses spaced evenly throughout the day rather than just split the second dose.

[SlowDragon Administrator in reply to FancyPants54]

On day before blood test

5mcg waking, 5mcg mid afternoon and 5mcg at bedtime

Personally I would try that everyday for 6-8 weeks, then retest

It’s too long a gap between 3pm and 8am

[FancyPants54 in reply to SlowDragon]

I'm seeing my endo on 7th January so I'm not going to make any further big changes until I've had a test and seen him. But I did try 5 in the morning when I started and felt much more tired and depressed. The 10 in the morning makes me feel much better in my head. I'm just physically tired. I think I will need 10-5-5 eventually I really feel I need some at bedtime. Got to be sure what the FT4 is doing first though, as I might need to reduce my Levo now I have T3 circulating. My mistake was doing as told by the endo and reducing Levo at the start. I never had high T4 readings.

[SlowDragon Administrator in reply to FancyPants54]

Even if you don’t change to do this dosing everyday, suggest you change to 5,5 and 5 the day before testing

Yes, I have ended up on 10 at 7am, 5 at 3pm and 5 at 11pm

Moving 5mcg to bedtime was a revelation, great sleep

[FancyPants54 in reply to SlowDragon]

I would love great sleep. For years I've gone out like a light bulb but it's sort of unconscious not sleep. I don't dream and I don't wake up refreshed. I have had a couple of small dreams since starting the T3. I am looking forward to being able to try adding some at bedtime when the time is right.

[blondpalomino in reply to FancyPants54]

Hi Fancypants,No I don't think you are taking too much T3 either. I am 5ft 2" and 9 stone and I take 20mcg T3 a day with 75mcg thyroxine.

I have all the thyroxine in the morning when I get up with half the T3 with the other half at lunch time, the dose that was prescribed for me 20 years ago after my thyroid removal.

You mentioned a permanently fast heart rate - I had that when I was taking too much thyroxine, I never felt that it was the T3 causing it. Maybe you need to reduce your thyroxine, sometimes it's getting the balance between the two drugs right. Post your blood test results when you get them.

[FancyPants54 in reply to blondpalomino]

Hi. Thank you.

I didn't have a fast heart rate until I went into persistent Afib in Feb 2018. But the interesting thing was that when the NHS eventually, and I mean eventually, got around to giving me a cardioversion to see if I could be reverted to normal sinus rhythm (which worked for a while), it remained the same high rate. I was not able to reduce the beta blocker and I stayed in the 90's. I wasn't on T3 then so I know it wasn't that.

I definitely feel calm when I take the T3. I would like it to be 2 doses a day only, but if it has to be 3 I don't really mind. The time of day my arrhythmia is most noticeable now is late evening/bedtime when the T3 level from the day has dropped again but I'm still up and trying to do things. I think I would like to take some at bedtime, to have a good level in the system overnight to allow my body to repair.

It will be interesting to see what my results say about the T4. It may well now be time to try reducing it. It just wasn't right for me to reduce and introduce T3 at the same time.

[blondpalomino in reply to FancyPants54]

Hi, yes you shouldn't try to do too much at once as you won't know where you are!Maybe you need more T3 and less T4, hopefully you will learn more when you get your blood tests.

[NWA6]

Hey Fancypants54 👋 In my humble opinion you have not added too much T3 or added it too quickly. I would stick to what you’re doing and not lower Levo. Your Endo appointment will come round quick enough, let’s just hope they are going to be helpful and not confuse you!

The day before your test I’d take the Levo in the morning (24hr gap), take your 3pm dose and then take your 10mcg T3 in the evening (8-10/12hr gap before test) I know that that might seem tough because you’ll miss having it in the morning but I think it’s the only way to get an accurate picture.

I think you’re doing really well and it’s great news about the AFib especially! You are a tall woman and so it would not be unreasonable to be on the dose your are with the potential need to raise that aswell.

Taking T3 may lead to Levo not being converted and so you are missing some of that conversion and the fall in T3 (from conversion, even as you say you are a crappy convertor) is not filled by the amount of T3 you are taking. I find it so hard to describe but eventually you will probably lower your Levo because you’re taking more T3. Not because T3 is replacing but because it just doesn’t work aswell. Is that complete double Dutch? 😂

[FancyPants54 in reply to NWA6]

No, that's not double Dutch to me. I feel as if I need 10, 5, 5. The gap between 3pm and 8am is too long. The heart speeds up again and gets more bumpy around midnight and beyond after levels have dropped. But I won't be doing that until after the endo visit. I am taking my own test this week for my own purposes and will then have the GP run tests my endo has asked for which are being run on NYE so I will be able to see quickly what's happened in the past few weeks and then I'll run the NYE test the way he asked and we'll have the 2 tests to compare when we meet. I do think I probably need to reduce Levo a bit now. I feel rather like I used to feel if I tried to take 150 Levo, which took my FT4 to 22.8 over range (20 being the top). I used to feel more tired and unsettled then. And my blood tests show that pushing the FT4 up caused the FT3 to drop, which is your theory. When I first added the T3 and dropped to 100 Levo from 125 it was too soon and I couldn't sleep. Putting the missing 25mcg back in gave me my sleep back, but I am more tired in general, so I certainly see where you are coming from and will be interested to see what my results show.

Not sure I should bring the test days morning dose forward and take 10mcg before bed though. Mind you I could sleep like a log! Perhaps 5. I wish it wasn't so close to Christmas. Work is busy and the post will go to pot next week so customers are getting everything in now. Plus all the business uncertainty of 1st January. I need to be on the ball right now.

[NWA6 in reply to FancyPants54]

Fab! I think I would worry that only taking 5mcg at night before the test will not give you an accurate enough picture? Although there’s no clear right or wrong answer here as the blood tests are only a guide to be used with ‘how do you feel?’ 🤗