I guess I’m asking anyone who has tried combo T3/T4 or anyone who started on T4 of some sort and is now T3 only.
I’m currently on 55mcg T3 and 12.5 T4 a day (having recently reintroduced T4) and I’m just wondering what people’s reasoning was for either keeping the T4 or dropping it?
I was originally on 175mcg levo when I began to have issues. When T3 was first introduced I immediately felt better but felt great at around 25mcg plus around 100mcg levo.
I gradually dropped levo and increased T3 in response to returning symptoms but I’m not sure that I’ve ever actually felt better than then. I’m not sure if I just think that though as I was the first time I felt normal again.
What I have found is that too much levo seems to stop my T3 working now. When I initially dropped levo completely I felt amazing for around 12 weeks then started to get head pressure. I put back on a little levo and it stopped but as it gradually built up I felt unwell again. It was still only at around 25% if that, of range.
So I just wonder what prompted people to make the decision they have and if they’re settled on a dose long term now? Though I won’t adjust my levo at the moment until I think I’ve optimised T3 (god knows when that will be!) I am curious.
TIA 😊
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Murphysmum
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I found that I didn't have any improvement at all on levothyroxine from the first moment I took it.
I had constant palpitations and felt very unwell and even the cardiologist couldn't figure it out and was thinking of putting an implant in my heart 'to see what was going on'. Fortunately T3 was added to T4 and it made a huge difference to how I felt and I didn't need to consult the cardiologist again.
So, from T4 to T4/T3 then I went onto T3 alone and have remained on it but I now take a reduced dose and it suits me. Sometimes I think our bodies can change in its thyroid hormone requirement.
I was ok (not great in hindsight) on levo for about 15 years. Then after a period of prolonged emotional stress I became very unwell. At that point I seemed to just stop converting T4.
Introducing T3 has helped enormously. I feel energetic and pretty much symptomatic. I am struggling to get it to be consistent though. A big part of this is every time I feel better I increase my activity levels therefore needing more!
So the week before last I felt awful. Right back to square one. After looking back at my diary I realised about two weeks before I had split my T3 from 2x a day to 4x. It seems taking a smaller split dose is as good as not taking it at all for me. As soon as I increased one dose over 20mcg I instantly felt better. I’m back to 2x a day!
Hence me questioning T4. It definitely helps even out the peaks n troughs of T3 but at the same time, it seems to cause me just as many issues!
I used to take 50mcg of T3 once daily but now take 25mcg.
I follow Dr John Lowe's method (he's now deceased) of one daily dose and I have now reduced to 25mcg. He stated that (and I'll give you a link) a once daily dose is preferable as it saturates the T3 receptor cells that then send out 'waves' throughout the day(he took his in the middle of the night so that nothing interfered). He was an Adviser to Thyroiduk.org.uk before his untimely death.
Thanks. I may try this at some point. At the moment, I’ve never taken more than 30mcg in one go and that’s when I’m due to go for a run soon after. Any less and I feel I’ve ‘used up’ my T3.
My question would be if you feel overmedicated when taking one, bigger dose, what happens later in the day? Does it wear off as mine does at the moment? How do you know what works and not?
Dr Lowe stated that one daily dose of T3 saturates all of our T3 receptor cells and it then sends out 'waves' throughout the day (as far as I'm aware we don't have T4 receptor cells as it's supposed to convert to T3).
He also recommended one daily dose (he took his in the middle of the night so that nothing interfered with the uptake) and said that that one dose lasted between one to three days. I've tried it myself, i.e. I took one dose, took none for the next two days, then took T3 again as usual, daily. I had no ill-effects on my trial.
I definitely respond to taking it once daily shaws, when I tried to split, I had peaks and throughs, was more hypo, tried splitting 2x a day, which was better than 3x a day, but 1x a day is the answer for me for both t3/t4.
In addition, I’d say that my blip I had last week I found out to be Caused by taking a lower dose!
I had split my then 60 mcg to 3x15 which clearly doesn’t work for me. It seems so obvious now as I knew I felt better when I took 20mcg or above for each dose!
Why did I not think of this? Goodness knows but with hindsight I realised. Duh!
So maybe a single, higher dose would work for me 🤷🏼♀️
I used to take NDT all in one go, up to 150 mcg t4 and 36 mcg of t3 always that way. Got overdosed long story, but some GP told me to split my 114 t4 and 27 t3 into 3. Boy I was so sick for over a year and couldn't figure out why. Then I did split into 2, bigger dose in the morning, smaller in the afternoon, that was better, but still was quite sick. Went to levo only last year, stuck to taking it once a day and same when added t3, went up to 112 and 22.5 at some point, which I wasn't able to do before when splitting, it felt like it was always too much and uneven. So yeah, for me, I cannot split.
Hi, that's really interesting. I have had hypothyroid and been taking levothyroxine for a couple of years. I had a rash and myalgia initially, although I had improvement with levothyroxine, still have recurring symptoms.
Including fatigue, swollen tongue, headache s and brain fog.
I also have bipolar and am taking lithium.
I am reading this thread and am curious because many of you are taking T3 or combo.
I have been told that I cannot access this on the NHS?
Is it different in different areas or are you private patients?
I feel like I am getting no where with my go.
Today I have a swollen tongue, and neck and chin. It's making me anxious.
The BTA insist on levothyroxine alone and I think that may be due to those 'at the top' who really have not experienced what we experience when hypo.
It's well seen the majority are male and most likely have never experienced a dysfunctional thyroid gland themselves. T3 has shot up in price and that's what the excuse was for withdrawing it. Well seen the majority at the top of the tree seem to be male.
Levothyroxine is an inactive hormone and it has to convert to T3. We have millions of T3 receptor cells and brain and heart have the most.
The fact that many seem to be o.k. with levothyroxine doesn't mean that others will also.
In the past Doctors used to be trained in clinical symptoms alone and we were diagnosed upon them and given NDT = Natural Dessicated Thyroid hormones = that contain all of the hormones a healthy gland would have. It was in use since 1892 so safety well proven and we were diagnosed upon clinical symptoms alone. No blood tests then. In order to get this very popular replacement withdrawn False Statements were made. It was the very first replacement that saved lives and was a favourite with many patients.
Is it not incredible that the "experts" did the same with T3 - withdrawn without notice and at that time the rising cost gave them the excuse. So instead of us having options we are down to T4 only i.e. levothyroxine. Where did humanity go? that some cannot improve at all, may lose their jobs or relationships through no fault of their own.
Doctors who prescribed NDT or T3 could lose their livelihoods.
Many members source their own but no information is permitted on the forum. Private messages can be sent.
I am sorry you also have bipolar - have you had Free T4 and Free T3 checked? You may have to get a private test. T3 is the Active Thyroid Hormone and all of our T3 receptor cells need T3 and brain and heart contain the most.
I was too ill on levothyroxine and, when it is first prescribed you wonder why you feel far more unwell before being diagnosed. I had to diagnose myself as not one doctor or anyone I paid did. I even underwent an operation to remove a 'web' in my throat and was told I'd choke to death if it wasn't removed. I had an op but did not see the doctor afterwards - which is usual - so the following week I was alone in the waiting room when he popped his head in and out and I wasn't called. After a while I went to find out why I was still waiting. He said there was nothing there - what was on the barium swallow ? I asked and he couldn't answer. The more familiar I became with hypo, I realised that it was probably a swollen thyroid gland he saw. I didn't get my money refunded and I was still very unwell.
Some members put up a post asking where they can source T3 or NDT but information must be totally private.
T4 made me far more unwell but when some T3 was added to T4 it seemed as if my body had come back to life. Eventually I went onto T3 alone.
Quite a number of research has shown that many who don't improve on T4 only can benefit from a T3/T4 combination but now that T3 cost went sky high, they withdrew it from being prescribed, meaning that many patients had to try to souce their own. The Organisation also made False Statements in order to get NDT withdrawn and with the high increase in cost of T3 means that levo is the main hormone to be prescribed. The professionals don't add into the mix the 'extras' prescribed in order to try to relieve symptoms.
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