I’ve been doing amazingly well since day 1 of introducing T3, no complaints. If I felt some hypo symtoms I’ve raised T3. I started on 15mcg and now I’m on 25mcg. Levo was lowered initially at endos request upon starting T3, I then realised that it didn’t need lowering and put it back to almost original.
All good for this last year and half.
My results in Nov 2020 were :-
FT3 5.73 (3.1-6.8)
FT4 20.5 (12-22)
Endo said he was worried I was now overmedicated. 😩 I suspected he’d say that even though I don’t think it feel that that’s true. So I said I’d experiment with the Levo dose because as it goes my FT4 is higher in range than others who are on combo treatment and if I’m not a good convertor then maybe the high FT4 is just an unnecessary waste of Levo. Who knows 🤷♀️ and perhaps the high FT4 is down regulation.
I lowered the Levo on the 1st of Dec. Within a week my sleep pattern was disturbed. Instead of a steady 7hrs of refreshing sleep I now fall asleep earlier and wake up in the early hrs (around 3am) and find it difficult to get back to sleep for an hour or so.
My funny leg is back. When not optimally treated I had this funny left leg. While I’m lying still in bed my left leg feels like it has a Boa constrictor wrapped round it and it gets tighter and tighter until I move it, it’s painful but not like normal pain, very uncomfortable and I either have to try and constantly rotate my foot or put a tens machine on it 😩 (magnesium cream helps too)
I also have pins and needles back in my arms and wake up with fat swollen fingers.
And last but not least I have a couple of facial spots and a cold sore.
So it can’t be coincidence that I lowered my Levo and within 18 days I have historical symptoms that plagued me for the first 10yrs of my condition??
I’m not dying, I’m managing, it’s not pleasant but I can wait till Jan to do a blood test to see if the results match the symptoms but I’m pretty sure I’ll be raising my Levo again and telling my Endo my findings.
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NWA6
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This is fascinating to me. I have had ‘unexplained’ sleep issues that match this description for years: I fall asleep within 5 minutes and sleep soundly until 3am-ish and then I’m awake for an hour or so before falling back into light sleep.
I’d never connected my sleep problems with thyroid issues, but since being diagnosed earlier this year and starting on levothyroxine, I do think my sleep is gradually improving. My levels aren’t where they need to be yet, but this gives me hope!
At times, I wouldn't get back to sleep long before the alarm was due to go off.
Yes, the fall asleep easily, wake up after half an hour, an hour or longer, and be unable to get back to sleep is, in my case, clearly connected to thyroid.
Took many months, maybe more than a year, to really get over it.
In contrast to helvella, I had some poor sleep before starting Levo (I can’t say before diagnosis because I never was diagnosed) but my sleep got far worse for the months I was on 50 Levo, waking at 3 or 4am and not getting back to sleep at all. Since being on 75 Levo my sleep has improved, and more so since taking magnesium.
I had 6mths before diagnosis of falling asleep at 6pm, waking up at 7/8am and feeling like I’d been hit by a truck. Then I got Levo and felt soo much better. Throughout the next 10yrs, I’d been ‘normal’ then go through a couple of months of hypo, sleeping earlier at night, having a nap or two in the day. I’d raise Levo and feel better.
Then 2018/19 it’s like I just stopped, Levo wasn’t working for me anymore, like I had a tolerance to it. Slowly I became more hypo, however there were no daytime naps, insomnia at night, absolutely wired with tiredness, the world felt surreal. I was on the sofa, my whole body in pain. Then I got T3 and slept like a baby that night.
For the first 6mths I dreamt. What’s weird about that is that I can’t remember ever dreaming. This tells me that I’d never had a normal sleep pattern, ever, not even when I was a child. I suspect that I had enough T3 for my body but not my brain. My body was alive enough to survive but the brain activity was as seriously depleted. This really fits for me as I had suffered with low mood, perhaps at time depression. Since T3, I have had soo much stress in my life and yet at no point have I suffered with low mood or depression. I can cope.
The differences I see is that I’ve gone from feeling optimal but reducing based on Endos concern at higher in range FT4 to slow Intro of hypo symptoms.
I think I’ve reduced my Levo intake too much.
I was on 950 per week and I went down to 850 per week. Far far too much of a drop but at 20.5 (12-22) thought that that wouldn’t have been felt as significantly as it had.
I think I’m actually going to increase Levo. I’m going to introduce 75mcg again, I see no point in waiting for blood tests when they are already in range. I’m going on symptoms.
When I feel good I’ll get a blood test to confirm the numbers. I say this because I firmly believe that the medical professionals are too driven by numbers and is patients need to listen to our bodies.
Me too.... have grown some extra bit's that weren't there before, as a result of my 'experiment' despite eating sod all for most of this year.Unfortunately Winter is not the best time for my self motivation, but i'll do my best.
I'm glad you said you were going back up on the Levo. No point suffering. And you will know quickly if the symptoms resolve that you were right.
Interestingly, as you know I have weird results but my FT4 falling by my lowering Levo gave me instant sleeplessness. But FT4 falling by adding the T3, even though both results are really sub-optimal, didn't do that. I'm sleeping fine on low FT4 numbers for me.
Cheat your next endo blood test. We've talked about how to do them. Do them so that it records less FT3 in the test.
It doesn't matter, you could still cheat the next one to tell him the results that he'll be comfortable with. You just need to adjust when you take the T3. It's so annoying that they know so little how to help us and yet trust us so little too.
I recognise the boa constrictor that demands you move the leg, i have had a long 'friendship' with one of those too.
I have 2 slightly contradictory (and therefore unhelpful!) bit's of advice .
1) don't be too quick to decide how you feel on new dose, things take along while to adjust and settle down again 8-10 weeks minimum.
2) don't get stuck on dose that makes you feel less good than you did for too long ... it's hard to get back to where you were before , even if you put the dose back up.
Yeah I’m of the same opinion just pissed that I allowed an Endo (even if he is a ‘top’ man in his field) to influence my decision. I was perfectly happy with my dosing and life. I felt optimal. It’s just another example of not relying on blood tests but also how ‘scared’ these Endos are at relying on patient input and I guess in some ways scared of what ‘the neighbours will say’ ie other endos who do not endorse combo treatment.
I wish there were more pioneers out there who want to monitor but don’t feel like they have to have more input than needed. My only hope in all of this is that my experiment will give my Endo food for thought and more data on ‘what’s right’.
Yes . that is the one positive from these sort of 'do as your told' experiment's , at least you know which way NOT to go next time , and they can't argue because you tried it, and know the result. And you feel much more confident in your own thinking afterwards, so it's easier to make your views heard in future.
I've been playing the same game as SlowDragon this last year , from 125 Levo to 112.5 to 100 and back to 112.5.
I think my body is very fussy about Exactly how much i take, if i'd left it up to the doctor i'd be stuck on 100, and probably less , because my fT4 is still over the top , (but oddly my TSH has gone up to nearly 2 when it's normally been 0.05 ish .)
My bloods have been so illogical recently, that i now feel much more confident going by how i feel, moving in VERY small adjustment's and waiting a decent time before deciding what to do next.
My fT4 says~ lower Levo ,
My TSH say's~ raise Levo,
My body say's ~ i'm feeling better than i have all year, so wait till spring , when i'll be more active, and see what happens then , but for now leave well alone.
Oh good god tattybogle! So complicated! Touch wood 🪵 I’ve been so blessed to not be so sensitive. Sure I had a terrible time for 10yrs but this last year and half as been easy. I didn’t even slowly introduce T3, just took the whole 15mcg in one day and never looked back!
You sound like you’ve got a great attitude to all this. I was a whinny moany women, throwing daily tantrums, well until the batteries went full dead anyway. Not being optimal just made me angry and cry with frustration 😭😬
My T4 levels are in the same percentage of the reference range as yours but still too low for me as I have to be over the range to function on Levo only. My doctor time and time again told me they were too high and I repeatedly fought a decrease. Puffy fingers and skin issues are always the first signs to pop up. I currently wake around 3-4am due to low T3. I'm encouraged to try T3 again after reading that you feel well with a larger amount of T3. Did you slowly add the T3 each week and did adding the T3 lower your T4 levels ? *edit just read above that you did not slowly introduce T3!
Again another interesting response to thyroid replacement and different to mine. I raised my Levo to be higher in range over the 10yrs from when I was diagnosed. I once got to close to the top (12-22) and I felt hyper and experienced hyper symptoms (wired, anxious, disrupted sleep pattern, need to be on the go) and yet my FT3 was still 0% through range, like it always was. This was the final straw, I’d gone as far as I could with Levo.
And no, I did not introduce T3 slowly, I disregarded all advice and some would say I was lucky that it worked out. I say that as we are all so different, it’s not unusual for one person to feel instantly recovered and others to find it more challenging. In some instances, slow introduction is best and for others a flooding is needed and that slow introduction is just teasing ones body of what it could have. The difficulty is that you don’t know which type you are.
This all sounds very familiar. Thanks for taking the trouble to write. In sept I was on 100t4/10 T3. I wanted to raise T3 so agree with Endo to flip to 50/20. After a month, Levels were down on both t4 (now way under range) and T3, so I unilaterally went to 75/20. Two weeks later I decided to go all in as had still so many symptoms (including the annoying sleep you're talking about) so went to 100/20. I'm sure I need all that t4. Now I'll give it five weeks and test before my late jan Endo appt. Hoping by then I'll be feeling good and will have blood results that back up my wish to stay on 100/20. Sleep is a solid 7.5-8 hours. Pain and muscle weirdness inc eyes not fixed yet.
I've restarted T3 (again) after letting myself get settled on my new Levo brand for 6 weeks. I'm taking it slow with 5mcg per week but I need more than a little T3 so I may have to lower my Levo. I don't seem to benefit as much from the T3 with higher T4 levels. I'm thinking I'll build up my T3 levels before I do that. T4 depletion is rough.
Why do so many think the problem is the t4 balance? I gave up all levo and am on 75mcg lio and not felt so good for long time.
Seems I don’t convert so why would I need t4 in my blood? My tsh is around .02 but t3 still not in mid range.
So I go by how I feel. And I source lio from outside Europe now, so don’t need prescription - around £10 for 25mcg Tiromel. Gradually Losing weight that I put on. Taken nearly two years to lose 1.5 stone without trying. Another stone to go to 8.5. Was always around 8 but could look too haggard as a short 76 year old. We’ll see. Was previously 36 22 37. Don’t think I’ll get back the waist, but...
I guess in my case I am ‘going by how I feel’ I felt perfect before I was asked to drop my Levo so it must have been doing something.
Therefore there must be a balance that works for me.
I do convert just not very well. I suspect that my thyriod has shrunk so much or perhaps dead so therefore I don’t produce T3 and so that’s the back up I need.
Scientifically there seems that there should be no need for my FT4 to be so high 20 (12-22) but I’m certainly feeling the affects of not taking that higher dose. So for me it seems logical, just put it back up again.
I guess this highlights the problems that we all face. Endos knowledge based on studies and what they know biologically versus what the patients say just doesn’t always add up and can’t yet be reasoned. There’s a gap.
A 12.5mcg reduction of Levo with T3 added results in severe debilitation for me but mentally I feel better for it. I sleep better and my stomach bloating goes away. I think it would take a mountain of T3 to make up for the loss or maybe it never will. I also think that the rest of my thyroid has been destroyed because I need over the range T4 levels.
If I read this correctly: in your case, you have to shove FT4 almost to range top, to get high-quality sleep. After finally recovering from long-term T4 intolerance, I have brought my FT4 up to mid-range and assumed that was high enough. But, still have sleep issues. From what you say, it sounds like I need to increase my levo until I reach range top, before assuming that my sleep issues can't be solved via thyroid hormone.
‘High enough’is different for everyone. That’s why we talk about ‘optimal’ and not ‘normal’.
Honestly I don’t know what to say to this reply because I’ve had high FT4 once before introducing T3 and I felt awful, as if I was hyper (and yet my FT3 was 0% through range) I’ve had FT4 at 40% (but with 80% FT3) and felt fine.
I just can’t give you a definite answer. Who knows what factors are involved. All I can say is that if you still have symptoms, factors that need resolving then tweak, but if like me you feel good , leave damn well alone and don’t allow yourself to be influenced 🤗
I realize there is a connection between T3 and sleep, because T3CM seems to work for some people. (Although it didn't seem to work for me.) But your story about T4 and sleep is the first time I've heard anyone describe a possible T4-sleep connection. So I was curious. So far I have yet to encounter any MD who knows anything about the effects of T3 or T4 on sleep.
For me it's the low T3 that gives me disturbed and poor sleep. For ten years my T4 was anywhere from 82-113% in the reference range yet I never felt overmedicated because my T3 was low thus poor sleep when my T3 fell below 70% in the reference range. If I lower my T4 I'm completely dysfunctional but I sleep better. High T4/low T3 poor sleep but when the ratio of T4 to T3 is lower I sleep better.
Hi NWA6, I know this post is 5 months old, but could I ask you about the boa constrictor feeling? I have that on my right lower leg, I have water retention and now especially when lying down can feel like someone is tightening my calf and shin. Sometimes it hurts below the calf, and it is also hard to walk. Is this similar in any way to your experience know? I know I'm still undermedicated, my ft4 was 27% on the last blood test, ft3 was 70%. Also have a myriad of other hypo symptoms like pins needles,.dryness, waking up at night etc..
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NHS guidelines - interesting
Just thought it interesting 
Interesting study on T3 and vasodilation
OT :Interesting study of CFS 
Interesting graphs from Spectracell.com
