After 28 years of not feeling right on thyroxine unless my TSH is suppressed (which my endocrinologist isn’t happy about), I have had a prescription for T3.
I can’t quite believe it! But I was referred to a different consultant who isn’t interested in my blood results at the moment so I don’t have a copy of these. He said he just wants me feeling well. I’m currently taking 150mg thyroxine so this is being reduced to 125mg with 10mg T3 added.
My question is for those who are taking combined T4 and T3…how soon after you added T3 did you start to feel better? What were the differences you noticed first? Did you find it easier to lose weight or did this not change?
Thank you in advance
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Cathrd
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I felt a difference almost immediately.The constant headaches,constipation,bloating and brain fog greatly improved in just a few days.It will help with the water retention.Before T3 I was walking every day and couldn’t shift any weight whatsoever but I’ve lost a stone since starting it and now have loads of energy.Are you splitting your T3 dose up?
This is so good to hear! Thank you for your reply, I’m glad you feel so much better.
Oh the bloating, it’s been constant for as long as I can remember. I definitely hold water weight, no matter what I eat or drink I look pregnant. I lift weights, do strength training 3-4 times a week and track my calories and still have lost nothing, so I’m hoping to drop some weight.
The fact you felt a difference almost immediately goes to show it’s the right medication for you and your body needs it. How long have you been taking T3? I’m really hoping for the same and can’t wait to pick my medication up from the pharmacy tomorrow! The endo who prescribed it has said to take it once in the morning, although I have read that it can be better to split the dose throughout the day. It would be easier to take it just once a day but I will have to see which feels better.
Yes really frustrating when you are active and the weight just wont shift.I’ve probably been taking T3 about a year maybe.As you probably know it is quicker acting than levo and doesn’t hang around as long in the system.After some tweaking I’ve settled on 125mcg levo and a quarter T3 pill(6.25mcg) first thing on waking and then a further eighth pill of T3 at 2.30pm.This extra eighth made a great difference to me.It stopped my midday slumps and kept me going until following mornings dose.I really hope it works for you.Keep us posted of your progress😀
Thank you so much for this info! I’m glad you’ve found a dose that works for you. I’m prepared for a lot of trial and error! Will keep you updated and very grateful for your help 😊
Congratulations 😎. I would personally recommend splitting your dose initially and also start small and work up to the full dose. Once used to the T3 I take it in the afternoon as one dose as I’m just too lazy to faff with multiple doses but that’s just me! Good luck x
Thank you so much! It’s been 28 years of knowing I don’t feel right and a lot of ‘debates’ with my doctor! So I felt quite emotional being given the prescription. It may not work for me but at least I’ll have tried it. Thank you for your recommendation, I will try taking half in the morning and half in the afternoon. To begin with. I’m like you though and don’t want to faff with too many doses as I have other medication I need to take too! Hope you feel well on T3 😊
I feel so much better than I used to feel. If I hadn’t have gone down the private route I’d be a complete wreck by now
I cried when the Dr said I needed medication, sobbed with relief that someone had finally said it wasn’t all in my head so I and many on here will understand feeling so emotional. Take care xx
As the saying goes go low and slow I started at 2.5mcg until I got to 10mcg, everytime I try a higher dose now I have splitting headaches and dizziness so go.back to 10. It suits me so i don't push it higher and I have been on t3 for a few years now.
Thank you for your message! I’ve noticed quite a few of you have said to go low and slow so I’m surprised my doctor has prescribed 10mcg each morning. I thought I might cut the tablets and take half in the morning, half in the afternoon but I’ve been given capsules with powder inside. So it’s a bit more difficult.
I’m glad you’ve found a dose that works for you. I hope you feel well on it.
personally I would not take 5mcg in morning and 5 in afternoon until you can tolerate a lower dose. Once your body has got used to 5mcg then you can increase to 7.5mcg or 10mcg then you can do 5 mcg twice a day. I started I think I said on 2,5mcg and was on that for a while and then went on to 5mcg and then 10mcg but slowly, but we are all different I can’t take more than 10 but others can tolerate a higher dose. Good luck.
Thank you! I’m not even sure if 10mcg is a high or low dose but that’s what the doctor feels is right to start on. So I will give it a go. Thanks again 😊
Thank you very much for your reply! I have a feeling I may be a tortoise too but I’m pleased you’re not feeling the full benefit. I hope you’re feeling much better now and it was worth the wait to feel the benefits! 😊
Thank you very much for your advice, I appreciate this. I was a bit disappointed when I picked up my prescription as I’ve been given capsules with powder inside, so sadly I can’t cut the tablet and split my dose. My doctor has said to take the 10mcg in the morning so I’m hoping I am still awake by the evenings!
With regards to vitamin results, I’ve had B12 and ferritin tested and they’re well within the normal range. In fact, my B12 is towards the high end. But I haven’t had my vitamin D tested for a few years - they don’t seem to test this in my local health board. So I will look into a private test. I have been taking a vitamin D supplement for a few years, 1000 IU daily.
I have never been told that my hypothyroidism is autoimmune or not - my doctors up until now have not given me much information at all. But that will be a question for my next appointment.
Hi congratulations on getting T3. I remember that feeling so well. It felt like winning the lottery!! I had a TT in 2015 and was put on just T4 meds. I felt awful for another four years. Thyroid levels still not shifting to my optimal levels for me. However, adding the T3 was a game changer. Just as little as 3 weeks my levels started to shift for the better. I was put on 125mcg T4 the same as you and put on 20mcg of T3 medication. I had to start low and build up listening to my body, checking my heart rate etc. If I felt it was making me anxious I'd just stay on the lower dose until my body accepted that dose and then increase to the next. I think after 2 to 3 months I was up to the full 20mcg of T3. However, I split my dose now to 10mcg in the morning and 10mcg of T3 in the afternoon. As you may know already T3 is very stimulating. I really had to take it slow. My pregnancy weight dropped off it was brilliant. However, looking back at pictures the rest of my weight loss was due to autoimmune Gastritis and Pernicious Anaemia, as that was the next battle on my hands I had to deal with, witch has a close connection to thyroid issues too. Best of luck with it. Take it slow and listen to your body. I would start on 2.5mcg and listen to your body on this and if all okay move up. If in doubt stay on dose a bit longer and then see. People can be so sensitive to T3. Best if luck.
Thank you so much for your reply. I’m so glad that you’ve found a good dose for yourself. I’ve had quite a few replies like yours saying it’s better to start slowly, so I’m grateful for this info. Sadly I’ve been given capsules so can’t split my dose between morning and afternoon. So I’m hoping I’m not starting on too much too soon. Still, willing to give it a try! Thanks again and wishing you all the best with your health journey 😊
Within hours….and my brain first! All I can say is every cell in your body needs this combination. I had 20 or so symptoms, including a trigger finger, weak bladder, hot flushes, neuropathy in my feet, the list was endless and some resolved completely like my trigger finger, bladder issues and others much reduced.
Weight dropped off me and now I have to eat to keep my weight acceptable!
Wow, this is amazing to hear! Funnily enough, I took my first T3 dose yesterday and my brain felt a bit clearer after a few hours. I thought I was imagining it!
I also have a weak bladder and never associated it with my thyroid issues. It’s amazing how much is linked to it and affected.
So glad to hear your symptoms cleared up and you feel better! Plus the weight - I know it’s not everything but when you find it impossible to lose any, it’s got to feel good.
So pleased to hear you now have an Endo interested in getting you feeling well.
For me it wasn't a quick fix but I was very very ill by the time I got go see a specialist eho knew his stuff about hypothyroidism Liothyronine I found hard whilst my symptoms improved a lot my heart rate was up and down on lio. I split it in three. NDT was a very different matter. I have felt well since I moved across to it. Been on ndt for 17yrs now.
Mine was more complex as it also tuned out I am gluten intolerant and have long term b12d requiring regular injections. So this might well be why .....more complex!!
So it's like all things in the thyroid world you need the balance just right!! And the co factors in place too.
I’m glad to hear that you’ve found something that works for you despite it taking longer and I hope you feel much better now. Like you, I’m a complex case. I have a mechanical heart valve and I’m under a cardiologist so my endo has always been a bit nervous to give me T3. I’ll have to keep an eye on my heart rate and hope it doesn’t increase too much.
It’s been prescribed on the NHS…finally. It took 28 years of asking mind you. I didn’t go private to see the new endocrinologist either, my existing one referred me as he wanted a second opinion. Hope this helps 😊
I bet you are delighted that finally, finally!, after 28 years you’ve now got the T3. I can identify with it all. I also had years of asking for T3 to no avail, knowing I did not feel well, until I too got a new Endo who took one look at me and handed over the prescription. My TSH is extremely low but the Endo looks at the patient and not the test result. I now feel, probably, as I always could have done. So to answer your question of how long until you’ll notice - with me it was almost instant, and I mean that. It was the equivalent of having that first cup of real coffee. As if my body finally woke up. Each day was then an improvement. I no longer dragged myself through the day, putting on the ‘brave face’ as there was nothing else to be done. The weight came off, had to be dieted off of course but at least it stayed away. Also, I no longer had that awful grinding headache that had become a permanent fixture. And no more weird heart rhythms. I am so much better. I have never understood why, when our original thyroid gland goes to the bother of making both T3 and T4, the experts consider we don’t need one of them. I don’t split the dose, take it all first thing. I did try splitting but found no difference and it’s easier for me in one go. I let them dissolve under my tongue - no particular reason, just what I’ve always done. I do hope you feel vastly improved very quickly.
Thank you so much! Yes, finally! It’s been a long road to get here so I’m really hoping to feel the improvements that you do on T3.
You do sound like you have a similar story to me and I’m so glad you felt better almost instantly. I took my first dose yesterday and within hours my head felt clearer - I thought I was imagining it and making it up!
It’s good to know you take the whole dose in the morning and it makes no difference, as I’ve been given capsules which I can’t split. Do you feel tired by late afternoon at all?
I agree with you, when our body makes both T3 and T4, why do they just give us the one? I’ve been told for years that T3 is too expensive which is why the NHS won’t prescribe it. When I told my pharmacist this yesterday, he said it’s not that expensive!
Thanks again for your reply and hope you as well as you can 😊
Dear Cathrd, quick reply here, I do feel a bit tired by late afternoon, but that is probably more to with my activity levels. I walk a lot, dance a lot, travel a lot. I do remember someone years ago told me that when you’ve a thyroid issue (hypo type) you really need to divide the day into three - morning, afternoon, evening. You can be active for two portions, the third should be restful. I do try to follow it, ie an evening out dancing means a nap in the afternoon. A day out walking/shopping/socialising means an easy dinner then either the sofa and a movie or an early night and a good book. Travel needs a day to recover. When I follow the 2/3 rds advice I definitely feel better. I hope you feel enormously improved very quickly.
Thank you once again for taking the time to reply. That’s good advice and when reading it, I realised that this is something I do automatically. If I have a busy day, I need a quiet evening and vice versa. Like yourself, I’m busy and active but try to pace myself and find I need time to myself quite often and if I overdo it, I definitely feel it!
That’s brilliant to hear, I’m so glad you felt better so soon and losing weight was easier. I’m prepared to ‘try’ to lose the weight and don’t expect it to drop off me but I’ve never been able to lose any no matter what I do.
Thank you for your reply, really appreciate you letting me know 😊
Hi Cathrd, first of all congratulations ! 🎉Absolutely agree with the feeling of relief and joy to be given an opportunity to feel well again. I'm nearly two weeks into my start of taking T3 and am not yet up to the full dose, low and slow is definitely sound advice. I am in the slow to feel the effects group which I have to confess is a little disappointing but knowing that this is how some people respond is reassuring. This gives me the confidence to remain patient!
Thank you so much! Congratulations to you too on starting your T3 journey! I agree, it’s definitely a relief.
I’m sorry to hear you’re a bit disappointed so far but hopefully things will start to improve for you. I guess we are all different and I may be the same as you. It’s good to know and this is why I asked my question, to see what other people’s experiences are. Hopefully if things don’t improve for you, your doctor will increase the dose.
I hope you start to feel much better very soon! Good luck 😊
Hi I was eventually referred to Endocrinologist to be told I had been under medicated for years. I was prescribed T3 &started taking it in Dec 23. With the help from this group I started very slowly with 2.5 mcg twice daily. I would say it took a few months to feel better although if you asked my hubby he would probably say sooner. My problem was that Endocrinologist lowered my T4 to 75mcg which was a bit too heavy handed so am currently trying to address this. Either way I’m a lot better than I was but not quite there yet. It’s a real balancing act but worth it.
Thank you for your reply! I’m sorry you’ve been under medicated for years but so glad to hear you feel better now you’re on T3. It’s good to know that it can take a while and I imagine finding the right dose can be difficult. I hope you find the right dose of T4 for you and feel much better very soon 😊🙏🏼
Hi I have a similar story and have gone from 150mcg Levo and suppressed TSH now to 118mcg Levo + 15mcg T3, TSH still suppressed. My brain function - memory in particular - improved by 6 weeks and then my mood lifted. I started on 5mcg twice daily and then I added the last 5mcg a few weeks later. Then I dropped Levo to 125mcg and last year I dropped it again by 50mcg over a week. TSH still suppressed. I’m still overweight but mentally I’m me again which weighs quite a lot. Good luck.
I’m so glad to hear that you felt better within weeks, that’s so good to know. You were on the same dose of thyroxine as me, 150mcg. My doctor has given me 10mcg of T3 to start with so I’m hoping that’s not too high. Like you, my TSH is suppressed and I imagine it will stay that way.
It’s really good to hear from others in similar situations and to hear you have noticed improvements. So thank you for your reply 😊
I had to go private, I started on 5+5+5mg T3 early Dec (early morning, noon and 3pm)and reduced T4 from 150 to 125. After 8 weeks and a blood test I felt no different so the doc increased the T3 to 10+10+5. It`s been about 5 or 6 weeks now and still no change. I have another video call with her mid march, and another blood test. Perhaps she will put the T4 back up.
bloods after 8 weeks were
T3... 4.6 (3.1-6.8)
T4...18.4 (12-22)
TSH was of course 0.02 as usual
My private doc has written be a letter which includes the following paragraph as i am moving area so expect a battle with new GP.
`Low TSH when on T3 medication: Please note this patient is on a medication that contains T3 hormone. This means that the brain does not need to produce TSH to stimulate the thyroid gland. A low TSH in this instance therefore does NOT mean the patient is being overtreated, provided their T4 and T3 levels are within the normal range.`
Thank you for your reply! I’m sorry to hear you haven’t noticed any difference as of yet but hope the doctor will adjust your dose at your next appointment and you’ll be feeling better soon 🙏🏼
I love what your private doctor has written! It’s really interesting yet frustrating how different doctors have such different opinions. My endo told me that if I go on T3, my TSH cannot be suppressed and if it still is, I would need to stop the T3. My new doctor seems to not be bothered that my TSH is suppressed and neither does yours. I will keep this as so many doctors seem hung up on TSH.
Thanks for sharing and taking the time to reply, I appreciate it 😊
Thank you so much to you all for your lovely, helpful replies! I didn’t expect all your responses but so happy to hear all your positive experiences. I’ll try to reply to everyone individually but apologies if I miss any.
Thank you, that’s good advice to start another thread. I have had one reply and they say to pour half the capsule on to my tongue and then use the other half later on in the day. So I will try that for now and see how I get on. Not ideal but I’m just grateful to have the prescription at the moment!
I was put on a split dose with capsules and wrote up on this site how I split them. It read like I was splitting opium. Mine come from a his pharmacy and it says on the pack ‘throw the unused half away’….. they must be joking given this is like gold dust.
But, check this out….it has a short half life so if you take one big dose then your body does without for long periods. I take 2.5 x 3 a day so technically I would be throwing 3 half pills away every day - no way!
I take 2.5 at 6 am, 2.5 at 2pm and 2.5 at 10pm…. So use 1.5 pills a day and next day use the left over half and split another pill.
With the capsules, once you empty one - just empty the half capsule on your tongue….it tastes of nothing, then you can decant another one into the empty half…. It requires dedication but this med brought me back from the brink, so I use it meticulously!
Ha, yes of course! I wouldn’t throw any away either!
It’s the short half life I am concerned about as I’ve been told to take it just in the morning. I will try emptying half on to my tongue, that sounds like the easiest way to split the capsules. I was hoping I’d have tablets that I could cut.
But I don’t want to complain as I’m grateful to have been given the prescription!
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Finally T3 prescribed by my Endo
