I'm due to see an endocrinologist privately tomorrow for the first time. I've been on levo for 13 years after a TT for ThyCa. I've never taken T3 so I'll be asking to try it since I've felt rubbish for 13 years! So my question is what kind of dose of T3 would I expect to take initially? I'm on 150mg of levo a day and 125 at weekends. How quickly will it help with energy levels?
Any questions I should ask the endo or anything else to be aware of? Thanks.
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DarkStar85
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Just for reference - a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T3 is said to be around 4 times more powerful than T4 :
Depending where your T4 is ' sitting ' your T4 might be reduced to allow ' space ' for the T3 :
If your TSH is already suppressed and below range - some consultants are reluctant to prescribe T3.
No thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels which we can advise on if needed.
I think it’s not only about t3 dosage but also ensuring your T4 dose is reduced if it’s currently over range. With thyroid cancer you usually need a suppressed TSH so your dose currently of T4 will be high and over range. You need to get your T4 just within range and add T3 when your T4 level is dropping to just below the top of the range. My sister who had thyroid cancer has recently been through the same process. Her private only endocrinologist, who is my endocrinologist also, advised on lowering T4 and adding T3 5mcg twice a day 8hrs apart. Take your T4 reduced dose as normal and add T3 twice a day 5mcg 8hrs apart. Then get your bloods checked again after 6 weeks. This will give plenty of time for T4 to reduce and T3 to rise. You’ll still need to keep your TSH suppressed. You may have felt awful for all those years due to too high T4. My sister feels much better now her T4 is in range and T3 higher. She has more energy and her many symptoms have virtually disappeared after 4 months of adding T3 and reducing T4. Her TSH is still suppressed but that lowering of T4 has made as much positive impact as adding the T3.
The thing is to reduce your T4 levothyroxine so it’s well within range and add the T3. With thyroid cancer you need to ensure you take your levothyroxine before your blood test so the test reveals how high it is and then the Dr knows how much to reduce it by. It’s getting the balance right for T4 in range and T3 and ensuring your TSH is still suppressed.
Depending on there understanding of T3 they might issue anywhere between 5-20mcg but we always recommend starting low and gradually building up, for some it kicks in quickly for others who have been low for a long time it can take quite some time for your body to adjust, important to have all your vits and mins optimised and really useful to know where your cortisol levels are
Has your fT4 dropped back into range since you last lowered your dose?
My appointment went well, my endo was excellent. She has prescribed me 20mg per day, 10 in the morning with 100mg levo and 10 an hour before dinner. I did ask if this was a bit high, but she said a lower dose wouldn't touch the sides for me. 13 years with low t3. I hope I don't experience side effects when I start, but I'm so excited to get on it!
That's great... but I would suggest taking 5mcg to start with to see how you feel for a week or two before adding another 5mcg to make it easier on your system and reduce the chance of a bad experience...then you'll see how you react as it is strong stuff, like you say 13 years of low fT3 it's going to come as a shock and though fast acting it still takes your body a good few months to adapt.
Fine tuning to find your optimal dose is much easier if you work your way up slowly, see how it effects your heartrate, BP and temperature... for many that go too high too fast end up having to start over as it is just too much for the body to cope with and too much is as bad as too little 🙃
Great advice thanks. Pill cutter ordered and I'll start at 5mg twice a day. I wonder if I should keep levo at 125 whilst on the lower t3?
I've had heart palpitations with levo too high which I hate and increased heart rate. I really hope it doesn't happen with the t3. I'll update on my progress when I get started! Hoping to have the energy to live normally soon 🙏
If your fT4 is back within range I wouldn't rush to lower it as often when you add T3 it lowers fT4 🤷♀️ and for many if you let it go too low you feel utterly awful again even with better levels of fT3
For some even starting on 2.5mcg is a kinder option but you are going to struggle to cut a 20mcg that small... some people are very sensitive to T3 so you won't really know until you try a little which way it will effect you
In that case I'll stick to 125 levo and just take 5mg t3 once a day for a week or 2 and see how it goes. Thanks for all the help and advice.
I had a TT for ThyCa in 2012 and struggled endlessly to get help when Levothyroxine failed me. I eventually got T3 when an enlightened Endo agreed that no one without a thyroid could function without the addition of exogenous T3
Thanks for replying. Mine was 2011. How long have you been on T3? What dose of T3 and T4 do you take please? How long did it take for the T3 to improve your energy levels? Actually can't believe I've struggled on like this for 13 years and with 3 young kids to run after.
It took a long time for Endo to get the balance of Levo and T3 correct as my bloods (and me!) were in such a mess. Eventually progress was made on 75 mcg Levo and 20 mcg T3.
It then became difficult to source T3 at all as NHS, CCGs and GPs were going through their ‘hissy fit’ phase about prescribing T3. I don’t think that it’s much better now tbh. As a result, I changed to 2 grains of NDT and have been settled on this since 2018. Although I didn’t set out to take equivalent amounts of T4 and T3, it’s interesting that the amounts in my daily dose of Thyroid S are roughly the same: 78 mcg T4 and 18 mcg T3.
As I had a fully functioning thyroid before it was removed for ThyCa, I had the benefit of knowing what my levels were when they were tested before surgery. My blood results now run at about the same levels.
Tha ks for the info. I'm not looking forward to a fight for T3 today and a 3 hour round trip drive as I'm so tired 😴
TT in Glasgow, UK. It's so unfair we need to fight for meds for a chance of a normal life. I may come back to you to ask about the meds you take. Ti.e to leave for my appt. Wish me luck.
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