I started on a small dose of t3 (first 5 then 10mcg if that's the correct unit of measurement, in addition to my usual 150mcg t4) and felt good for the first month. I was pretty energetic and positive and lost virtually all the oedema I'd been struggling with. To be fair I was on holiday for most of it, but it was a very active holiday and I had the energy and ease to go camping and for lots of long walks and enjoy it instead of feeling tense and exhausted and not up to the challenge. Now about 2.5 months after first taking t3, I'm back to feeling tired and 'heavy' and I can't do long or quick walks without feeling out of breath. Still little to no oedema, which is great!
About six weeks after starting t3 my blood test showed I was a little hyper, though I felt okay. (I'm afraid I don't have those test results to hand but if I remember correctly my tsh was something like .03 and my antibody results were much better than they ever have been.) My doctor was not especially worried about it (because I was feeling good it was thought better to leave my dose where it was for a while rather than mess about with it) but I did have persistent diarrhoea, which I put down to having been on antibiotics for a sinus infection. When that didn't clear after three weeks on no antibiotics, I began taking 125/150mcg of t4 on alternate days, and now my bowels are back to normal.
Not sure what to do next. I guess I need another blood test and a chat with my doctor. I don't feel any better after the antibiotics (I hate antibiotics but sinus infections are brutal and I could barely keep my eyes open) and in fact I feel like I've got another sinus infection, or perhaps the first one never went away.
Disappointed.
Any supportive suggestions welcome.
xx
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Apologies all - I see in my original posting that I said I was on 125/150mcg t4 but I'm actually taking 100/150 on alternate days (which comes out to be 125 daily dose).
I haven't had them checked recently but last time vit b was over the top of the range and d was good (100 maybe?). I was very deficient in d but did a loading dose over three months and my levels eventually responded. I take b supplements and have done for a long time.
My last blood tests were over a month ago and I suspect that the levels continued to rise as I hadn't been on the full dose for very long.
....it is often a mistake for Docs to think you are Hyper because your TSH is suppressed. You are only Hyper when the FT3 is over the top of the range as well. FT3 is rarely tested so don't know how they know these things....plucked from out of the air I presume.
Were you told to reduce your T4 slightly once you started taking T3 ? Remember T3 is four times as powerful as T4 and is quick acting. Anti-b's could have upset your gut. Try taking natural yoghurt or Kefir when you next take anti-b's to restore the balance of gut flora.
Everything takes time to be correct - so be patient and keep posting. Yes we need those results with ranges and follow Marie's advice to have B12 and VitD D3(OH-25) tested....
My t3 was tested - doctor insists on it - but I don't have the test results to hand. I was told not to reduce my t4 when introducing the t3.
I was taking probiotics during and after the antibiotics but saw no improvement in my gut until I slightly reduced my t4. I wondered if 3 or 4 weeks of the runs might have left me feeling weak and tired.
Doctor isn't particularly worried about me being a little 'hyper' for a short time if my symptoms are better so I was told to leave my meds where they were for the moment unless I wanted to tweak them, which I decided to do myself when the runs wouldn't resolve.
I think that people normally reduce T4 when they start taking T3, so that could explain any hyper symptoms. I haven't done it myself, though, so I can't really comment!
Hi Zabby. I know there is usually a reduction in t4 before you add in the t3 but my doctor said not to reduce. Unlike most doctors, mine isn't worried about you going a little high if you're feeling better, so maybe that's why I was meant to stay on the same dose of t4. The confusing thing for me is that the symptoms are the same (for me at the moment) of under- and over-treated thyroid (what I mean is that it is very unlikely but possible that I'm being undertreated right now but you wouldn't be able to figure it out from my symptoms alone).
My doctor relies very heavily on symptoms but also frequent expensive tests. I'm hoping to figure this out without having to pay for another round of tests.
It feels like the levo is the cause of the diarrhoea (sadly not losing and weight over here). Fatigue is the same as it was before when I was not on enough meds - so in other words I don't feel hyper as such. Did you have any other symptoms of being hyper?
It is confusing!! My doctor is good, but based abroad and not immediately easy to contact. I may have a new round of tests before I ring.
Ive just posted in the questions about my T3/T4 experience. Im not gonna hijack your post but Im confused as to why I feel so bad after taking on 5mcg of T3. I have a really stiff neck, my legs are like jelly and my head feels like Ive been woken in the middle of the night. Really confused
Gosh, that sounds awful! I didn't feel bad on the t3, but the neverending gut problem led me to believe I might need to tweak my dose.
So it's interesting that I also had that problem of feeling like I'd been awakened in the night - which I described in exactly the same way - but I'm putting that down to a persistent sinus infection (which was not helped by a course of antibiotics so maybe it is a side effect of the t3 - ?).
Don't worry about hijacking the post! I'm mainly looking for some compassionate discussion of what might be wrong and what to do next. I will need a test soon to see what's going on but now that I've reduced my dose I guess I'll have to make some decisions about what dose to stay on and for how long before I have the blood test (ie I don't want my levels to be going up or going down when the test is taken).
I am in my early 70s and had a really rocky time until I was 65 never being able to get the correct dose of Thyroxine( T4) . I had gone up gradually to taking alternate 150mgms / 175 mgms daily but was definitely a bit hyper at times on that, but less made me feel awful one or two days every month, headaches and generally no energy at all when I thought I was otherwise okay. Finally saw Dr Toft Endrocrinologist at the Royal Infirmary in Edinburgh and he started me on 125mgms T4 with 10 mgms of T3 daily. For the last 7 years I have been pretty stable on that. I with the current consultant there, have the okay to up my dose very occasionally if I feel flat by 5mgms a day,I do this perhaps about 4-5 times a year. I have just come back from a 3/4 day trip ,driving 100 miles with a car full of ladies and viewing some wonderful gardens. Like you I have experienced diarrhrea but after having a gut infection and I have started taking probiotics which seem largely to sort the problem unless I take lots of fruit, but it isn't continuous. I still have a sleep problem which I have decided is old age, my husband who also has hypothyroidism although fine could sleep for Britain which is most infuriating. Hope that you can get your levels sorted, it takes a lot of persistence.
Hi maggiew. I'm on exactly the same dose! 125mcg t4 and 10mcg t3. Interesting that you can sometimes boost your t3.
Even though I may be hyper (not sure as I don't have my test results to hand) my symptoms are not of the speedy/heart pounding variety, but they're virtually the same as when I was hypo: lethargy and hair loss. The main difference is that my oedema is gone (hurrah) and instead of having constipation I have the opposite issue (though that resolved when I slightly reduced my levo).
On the issue of sleep, can I ask, do you ever take your t4 at night? That has helped my sleep a lot. I accidentally missed a dose one night so I took it in the morning for a few days and I didn't sleep half as well. And I take my t3 around 4:30/5am, and go back to sleep and really sleep well for another five hours or so. I had been taking my meds an hour or two before I got up but it just meant I lost two hours sleep lying there awake. This works better for me. I was told I could split my t3 dose but that didn't really work out.
Thanks for your support. I hope it will just take a little tweaking.
A few ideas to think about. Sounds like the T4 is the problem? Perhaps you could discuss reducing T4 and increasing T3 a bit? Could there be a filler in the T4 which upsets your stomach? What time of day do you take your doses? Do you take the T4 with water and hour before food?
Thanks MaryMary. Yes, I'm reducing the t4 ever so slightly (150/100 alternating days, down from 150). I've been on the t4 for over a year and never had this stomach problem before, so it seems like I might have been on a little too much. I can test this theory by raising it again to see what happens - ?
I take my t4 at night on an empty stomach and t3 about 4:30/5am.
I don't understand why you need all that T4? I don't know but if you really improved on T3, I would say T4 is the fault. I remember you but not all your facts, so if you had low T4 levels and also very low T3 levels, I guess I can understand why you are doing this but remember that the receptors for T3 may have cleared out by now (if they had reverse T3), I know I've read that after a while you might be overdosing on T3. Is that a possibility? But I'm thinking if you had reverse T3 to begin with, all that T4 might also be crowding receptors with more reverse T3.
According to tests my conversion and general results were thought to look good but I was so persistently unwell on t4 alone that my doctor felt it would be a good idea to add some t3. Unlike most (all?) other doctors I've come across, mine tends to err on the side of more meds to see if there is improvement in symptoms. Obvs there are blood tests as well, but treatment is guided by symptoms.
I know I need to make that phone call, I just thought I'd see if anyone here had had a similar experience, thinking maybe it was a passing thing.
My doctor isn't perfect. There are some communication issues probably due to a very ambitious plan for expansion and possibly world domination. But I do feel like this is a relationship I can trust, if only because of the willingness to listen and to trust me to tell the truth about my own symptoms. I don't feel like I'm always having to prove what I say is true.
Yes, someone who will only use their powers for good! And who is willing to prescribe t3 and Armour! (And maybe if world domination is on the table they could be persuaded to hire a receptionist.)
Hi PB. Pardon the length, hopefully a more comprehensive picture better communicates a message.
It's to my mind quite difficult at times to decide without a few trials whether it's the T4 or the T3 - or too much or too little of either or both that's causing an issue.
The trots can be a sign of a little too much hormone, but more typically in my own case T3. It's not typical from what i've seen that it would take a month for the effect to show though - although maybe starting from not taking any it takes time to build up. (?)
It's also possible that you could have some gut and broader health issues which in their own right might be causing your symptoms, and which could underly whatever hypothyroid issues you might have.
Repeating sinus infections can be a symptom of hypothyroidism - it was in fact the first after fatigue in my own case.
While it may be necessary to take antibiotics in an acute situation, they are very hard on the gut (especially long term), and risk worsening both gut and thyroid issues.
This by encouraging candida and a reduction in the bugs we need - which may further reduce ability to take up key vitamins and minerals the thyroid needs, may reduce our ability to use what hormone we have available and feed into a negative spiral where thyroid and gut problems become mutually reinforcing.
If the gut ends up dysfunctional enough it starts to leak, and can often trigger auto immune disease - which may also as well as causing more generalised effects like food sensitivities attack the thyroid and lead into Hashis and the like. Unresolved it can eventually lead to serious immune based diseases.
Eastablishing whether or not you have a replacement dose issue is probably a first step.
Depending on whose number you apply T3 is x3 to x5 more active than T4. So adding even 10 mcg of T3 is equivalent to increasing your T4 dose by 30 - 50mcg. Which is enough to tip a person into being hyper if previously fully replaced.
While a first move could be to reverse any change in medication, it sounds like the T3 is helping you and a small dose like that seems unlikely to of itself be a major problem. (even the 10mcg starting dose I first was able to get helped me enormously though) So if you are a bit overdosed you could be on the right track to try reducing the T4. Maybe even reduce the T4 some more, and replace it with T3 using the appropriate mcg conversion factor as above.
It's going to be trial and error without bloods though, and your doc sounds helpful - maybe best to work with him?
On gut function which most docs haven't a clue about - it usually takes a good holistic practitioner.
When patients present with hypo symptoms there can be a tendency to dive straight into hormone replacement - but it may be that it's better to undertake some gut and more holistic treatment in an attempt to restore a broader balance in the body before starting replacement.
If only because it gives the thyroid a chance to recover. Starting hormone can suppress it further and end up being a one way trip.
Restoration of correct gut function is it seems enough on its own in some cases to restore proper thyroid function - as a result of restoring the ability to properly absorb/take up nutrients (including the above vitamins and minerals the thyroid and thyroid function need) and process hormone. Adding some hormone may too be necessary (at least for a while) to get the gut kick started in more seriously hypothyroid situations.
If the gut is significantly dysfunctional then piling in lorry loads of hormone and supplements may well be of little assistance because we can't absorb and/or use them - the gut is ultimately the engine room.
This (along with lifestyle, toxicity, and adrenal issues and consequent deficiencies in vits and mins like B12, D, copper, selenium and the like) seems likely to be a significant factor in why some with hypothyroidism don't necessarily benefit from taking hormone - they are simply not able to use it effectively.
The 4Rs is as before a standard approach used by holistic practitioners to work on the gut. Here's a link to a description, but it's all over the web: optimumwellnessclinic.ca/Re...
Switching to a low sugar, additives and carbs diet that seeks to reduce candia and foods triggering gut irritation is normally an important part of this.
My thyroid disease was too far advanced to recover this way (4Rs still helped enormously for about six years), but it's returned my 27 year old daughter to apparent normality after it looked like she had developed hypothyroidism in her late teens. Best of all it's put her on a path where she is conscious of her body, diet and lifestyle, and is actively managing it all to maintain her health.
It might be worth considering taking a more holistic appraoch to your symptoms - whether working on your own, or with the help of a practitioner...
I just re-read your reply and it did take a month on the t3 to get the trots, but perhaps only two weeks from taking the full dose daily. I was on about 5mcg of t3 daily for about two or three weeks just to see if there were any side effects (and there were not).
The gut problem coincided with a course of antibiotics, which I assumed were the culprit. However, having been off the antibiotics for a month-ish, and supplementing with probiotics, when it continued I got kind of desperate to do something about it. I already felt like a wet noodle and a month of the runs wasn't going to be helping! So with the nod from my doctor, I reduced my t4 slightly. My gut is back to normal now.
I've got myself in a pickle because I want to be on a stable dose for at least a month before I shell out the dosh on a test, so I need to make a decision about what to do, but I should probably ring my doctor and ask.
PS 'On gut function which most docs haven't a clue about - it usually takes a good holistic practitioner.'
I should have said as well - 'or a determined patient willing to read up on the topic, get tested as is necessary and sort out a healing regime for themselves'.
Before attempting any thyroid replacement I went on a fresh food diet (to Chinese principles) along with herbs and acupuncture for about a year. Whether it was this diet or just coincidence, my tsh went right down but I was still very symptomatic so I went on t4 and sought the guidance of a thyroid specialist.
My doctor (who trained with Dr Andrew Weil) started me on a programme of nutrition, adrenal support and a gf diet, which I have followed for a year. I was already dairy-free for a long time before (dairy doesn't suit me) and I eat small amounts of organic meat. While this is not an anti-candida diet, I feel well-supported in terms of nutrition and a general holistic perspective.
At the moment, I am not that determined patient you speak of. I haven't got that kind of energy. For better or for worse, at the moment I rely on being able to trust my doctor, and for the moment I feel that I can.
NP problem PB. Great that you're looking at the big picture, and happy with your doc.
After that it's always our own call.
For what it's worth my own experience has been that there's no substitute for just grinding away at the issue. Creating movement so that stuff gets tried.
I went through the hands of numerous doctors and a few endos too - including a number of holistic practitioners. The sad fact is that i never met one that followed a truly rational process - each tended to just roll out their stock version of the story.
There's always a dialogue to explain the scenario, but who knows what's really going on?
My breakthroughs have almost universally arisen as a result of circumstances....
Yes I agree with you 100% about the lack of rational process and the explanations!! On one hand sometimes my doctor makes decisions that I think are kind of mysterious and counterintuitive (in fact I have had to take some time off the nutritional programme as it was making me feel unwell). The whole Dr Weil connection is, for me, not necessarily a big thumbs up; I'm not a lover of 'gurus' of any persuasion. On the other hand, I feel at least that I need to enter into this process with some faith that this person is an expert, and I am not. Otherwise I find myself questioning every part of the process and feeling anxious about it. I already have this acrimony/mistrust with my gp and I need to feel - and act - like someone is on my side. So for the moment, I trust that this doctor is on my side, and I truly do believe everything that can be done is being done to help me. But that doesn't mean that this is the road to wellness!
Like you I just keep plugging away, keeping my mind (as the saying goes) open enough to let things in but not so open that my brains fall out.
Pardon my using agreeing with your reply as an excuse to fly a kite PB, but i guess it's always a 'walking betwen the raindrops' sort of deal.
We're very heavily conditioned to touch the forelock and defer when advised in assured enough tones/in specific circumstances that we should do something.
The key step it seems is to get beyond this conditioning. Rejection of everything a certain category of person says is just another form of conditioning - as in (as in life in general) it starts to be about trying to figure the other person's view, how best/most wisely to respond.
Intuition backed by lots of reading and hard work seems to work best for me - the more work i do the better my intuition seems to be. We can waste £1,000s, lose years and end up sicker by allowing ourselves to be led around in circles. Against that others may also (even accidentally or indirectly) lead us to try stuff that helps.
I'm also convinced that there is illness that we ourselves and for very good reason at some higher level (to learn life lessons) have decided to take on, and that isn't amenable to healing.
The other perspective that's seemed to help is to go forward knowing that these health issues are all about balancing multiple medical, lifestyle, mind, behavioural, nutritional, diet, energetic and other factors. The typical single issue/focus on/treatment of a single symptom can help if it happens to be the right issue by the right means, but more often than not it's a waste of time.
It may even do harm if the medication required to suppress the symptoms is (as is often the case) of that nature.
Mind state, the thyroid, the gut and the immune system seem so often to be in the mix...
I can only add that I find it helpful to turn to people - when possible - who want to be helpful. The only reason I initially went the acupuncture route is because I know an incredible practitioner. She uses acupuncture and deep-tissue massage and she's just a great help for allsorts. She wants me to feel better and I want to feel better and I feel like between us our accumulated momentum will help.
My current thyroid doctor is helpful - no forelock-tugging required - and wants to treat what is wrong with me. The ways in which I improve or don't improve on various treatments are noted and treatment changes according to how I feel. We are both on the same side.
I do not find it helpful to waste energy running up against someone who thinks my problems are caused by moral failings or some personal lack of stiff upper lip, or who treats me like my presence is putting a strain on resources. People know when they are being disrespected, no matter what party line you put to them, and it is hard to support your own self-respect against a barrage of this behaviour. (Without an endless stream of money I have to put up with some of this treatment from my gp, but it matters less if I am dealing with other - better - people as well. Having a choice/not feeling helpless helps support well-being.)
You're on an important one there I think PB. Healing seems to be a natural consequence of wholeness - and we can be reminded that this is our natural state.
In an age where many think the body is a machine it gets lost sight of.
Think too that whether or not this is present it's a very big part of whether or not doctors and other practitioners or indeed the people we know can help. Many heath professionals are focus on illness, and at a deep level persuade patients to see themselves as ill....
ian
Not sure I get your point there Ian, I spent 60 years getting up everyday and never giving a second thought to my health, I assumed it would always work for me. When it didn't I turned to those who 'focus' on illness, it would be what I would expect them to do. My doctor doesn't have to persuade me I am ill, I am, and I need his help to put it right.
As we all know thyroid issues are complex and individual and the physical symptoms often impact on the mental because feeling ill is not our natural state. Once the physical symptoms are dealt with the rest will follow, surely it is part of the human condition to want to feel well and the first chance I get at feeling good again I am off to conquer the world.
Not that I want to speak for ian, but the way I understood his comment was that sometimes the gp will focus on only one physical problem at a time ("It's not your thyroid; you have fibro/cfs") and the patient has to jump through the hoops to get anywhere ("Maybe if I go the cfs route, I will finally get the treatment I need") and in the end you become a patient rather than a person.
This is a problem especially when the doctor is embroiled in whatever political thing makes them so resistant to treat thyroid problems, so you're directed down this long road of alternative problems (are you depressed? anxious? fat/lazy? do you have fibro/cfs/reflux/high cholesterol/heart problems, etc, etc ad infinitum?)
My experience with depression left me a career patient. I once asked the locum psych when I could get back to work and she said, sympathetically, "Some people never get back to work." Well, this was a double-edged sword for me because I was pretty miserable and the prospect of going back to work (which had sent me off the deep end to start with) was an albatross around my neck, so it was a relief for someone to say I didn't have to. By the same token, there was no positive alternative. The alternative to work was to become a career patient on the dole, which is what I did. I never again was in full-time employment. I wish I had left my job earlier when I still had all my marbles, because if I had been looking at my life holistically, I would have saved myself before I became a patient with a medical problem.
Perhaps you're getting good 'holistic' treatment from your doctor. If everything was fine for 60 years and life is largely good except for your thyroid problem and symptoms, and your doctor listens to and treats what is wrong with you so you can pick up where you left off, that for me is good holistic care.
So I guess what ian said resonated that way for me, but that's only my take on it.
Hello PB and thank you for your reply and explanation. I know everyone's situation and experience is different and there is resistance from most GP's to adequately treat thyroid issues due to the constraints placed on them by higher authorities and their own basic lack of knowledge.
But, I still don't entirely understand your meaning of holistic in terms of treatment from doctors. My thyroid has been managed from the beginning with thyroxine and not until I ran into problems 2/3 years ago did the treatment become inadequate /inappropriate. At no time did my doctor suggest another cause. Now perhaps I don't understand the meaning of 'holistic' but not looking for other causes would seem to me to be the exact opposite.
At 70 my life is probably not unlike everyone else's at this age, family deaths, husband with cancer, but to some extent this is what happens when you get old and I feel I have no choice but to ride the storm. However, riding the storm is difficult with thyroid issues and I am confident that when the underlying problem has been resolved, life will become much easier. Just hope it happens before I end up in the cemetery, time is not on my side.
I do understand your comment about leaving your job earlier, not getting satisfaction from something you spend a great deal of time at can seriously grind you down.
I wish you the best of luck and thank you again for your reply.
Gosh jan, it sounds like you have a lot going on and I really feel for you. Life is tough - sorry for the terrible cliche - and those losses take their toll on you. I'm so sorry to hear about your husband's health. This must be a worry for you and as you say the thyroid issues make things so much harder.
(I wish I could remember where I read it - here I'm sure - where someone said that their doctor or a doctor they had read about said that when thyroid patients are bereaved they often require more treatment/higher doses. I'm musing on this myself as I feel pretty awful after two bereavements in the last three years. Not applying this to you necessarily - just musing.)
I guess I interpreted Ian's comment (and his idea of 'holistic') to mean that the doctor and patient would look at all aspects of life to see what can be healed and made better. Sometimes due to bureaucracy (I'm guessing), funding and whatever, it seems like thyroid patients get shunted down prescribed routes (fibro, cfs, obesity) instead of considering nutrition, digestion, feelings, whatever else might be affecting health. It sounds like your doctor has just kept plugging away at the t4 treatment without looking at anything else, which hasn't helped you (though you can read on this site that the other choices - cfs, etc - aren't necessarily helpful either).
On the other hand, I see a therapist who wants to talk about how I feel after the bereavements and how it may have been affecting my health - I guess this could be considered 'holistic'? - and I can only think that in a way it doesn't really matter because 1) these beloved people are gone and not coming back and 2) I feel unwell. I will talk about it because I see her for a reason and this is the reason, but for now I can't really see how it will improve matters, while plugging away at the thyroid issue will hopefully get me somewhere in the end.
Sometimes I wonder how 'holistic' treatment would have to be for thyroid patients if they were offered a variety of thyroid treatments - t3, t4 and ndt. If we were allowed to try other variations instead of just being given exclusively t4, maybe a larger percentage of people would just plain old feel better and wouldn't have to look at everything else.
Good luck to you jan and best of luck to your husband on his journey with his health.
PB, thank you so much for taking the time to come back to me and your good wishes.
I have no doubt that my husband's health has had its effect on me, the last thing we UAT's want is stress, especially the kind we can do nothing about. Nearly 5 years on he is not doing too badly and his treatment is keeping the cancer at bay (for the moment).
From a personal point of view my doctor is doing what I would expect him to do. He referred me to an endo and is being very helpful with doing all the tests on the NHS and prescribing T3, so I can't really fault him. However, I wouldn't have got T3 if the endo hadn't prescribed it, because he admits the finer points of thyroid disease are out of his area of knowledge. I think doctors do what it says on the tin, they look after your 'general' health and quite honestly I don't think this is unreasonable. Anything that needs specialist knowledge should be dealt with by someone qualified in that area.
The last thing I would want my doctor to do is to go into the area of mental health and prescribe antidepressants. I don't think stress is a mental health issue as such, it often just needs time and of course the best cure would be to take away the thing that causes the stress but this isn't always possible. You are quite right in seeking an alternative therapy, I might even try it myself because as you say it is nice to have someone to talk to about how you feel about bereavement and illness and how it impacts on your life as a hypo.
I lived in the sticks as a child and remember the days when the doctor would call at your home and have a cup of tea!! Those days have long gone, my doctors surgery looks more akin to a cattle market these days, so busy I hate going there. But that is probably a hypo sign, can't bear loud noises and voices.
Thank you again PB, best of luck to you on your journey and thank you for your support, it is much appreciated.
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But I do feel like this is a relationship I can trust, if only because of the willingness to listen and to trust me to tell the truth about my own symptoms. I don't feel like I'm always having to prove what I say is true. 
has anyone felt not great on T3?
Is anyone else still having trouble with nhs t3?
Is anyone else taking slow release T3?
