I have managed to get some T3. But what do I do about my T4? How much should I reduce it by?
My results from 1st Feb:
T4 is at 25.5 and the top of the range is 22.
My T3 is 29% through the range at 4.2.
My TSH is suppressed at 0.01.
I’m on 125mcg of levo. I’d only been on that for two weeks. Before that, since October 2021, I was alternating 150 mcg and 125mcg. The blood test was unexpected but I hadn’t taken my medication the night before!
My T3 comes in 25mcg. I’m not sure I’m going to be able to split them into 5mcg bits. I have a pill cutter but it only does half, quarter, eighth. So what do I do about that?
Thank you very much. Everyone is always so helpful and I’m really grateful.
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I'd drop your levo by 25 mcg a day - do this first; wait a week
Then add 1/4 of a lio tablet [basically when you've seen 5 mcg in the context of a 20 mcg tablet before, you're working in 6.25 mcg portions ie 1/4 of 25 mcg] - take it with your levo.
After a week or two, add another 1/4 lio - well spaced from the first.
After a week or two, add a third quarter - either as a third dose or with one of the others
Then another week or two later, add the fourth 1/4 so you are taking 1, 2 or 3 doses. Hold for 6 - 8 weeks then re-test bloods.
If you feel great on less than a whole tablet, stop there - you don't HAVE to take 25 mcg. And if you feel jittery or over-medicated as you increase, go back to the previous dose for another week or so.
And once you're on a doe you like, experiment with how many doses you take - personally I take all mine in one go, with my levo because I find this easiest, but there are big fans of 2 and 3 doses too x
Thank you very much for your suggestions. I really appreciate it. How much should I bring the levo down by altogether? Should I end up being on 50mcg or 75 mcg or even 25mcg? I really don’t know. I will follow your suggestion regarding introducing the T3. I’m in the for the long hall and will experiment until I find my ‘sweet spot’. I have been wondering if I even have one. I have felt so kind of off for so long that I can hardly remember.
I think it’ll take a while to find the right combination and timings etc. I know that’s the way it is - so long as I get there in the end.
I'd just drop levo by 25 mcg - but when you re-take bloods (after getting to a full tablet of lio) you can see how it's doing.
ps debsmith60 is right - the patient leaflet WILL tell you to take a part-tablet by dissolving the tablet in water and chucking the bit you don't use - but (a) it doesn't dissolve easily and (b) that is, as suggested, just bonkers! Don't think anyone actually does that! We all use pill cutters or scalpel or craft knife
Always try and use up one tablet before cutting up the next, and lick up any crumbs on your finger. Good luck x
Thank you very much! I won’t be taking it like that. I will just use a pill cutter and take each bit before cutting the next pill. I guess dissolving it gets into into your system quicker but if the pills are not made for dissolving then it won’t work! How very strange. And what a waste!
Gosh that’s a lot of T4 for a little T3. So how much should I reduce the T4 by, do you think? I take my levo at night so will start reducing tonight. Thank you! The pill cutters came in a list rather than left and right!
You can't tell from here how much of the T3 will get to the cells. I'm currently on 55mcg T3 and 75 Levo. If I were absorbing all that T3 and Shaws numbers were right I'm sure I should be dead by now. I'm not. I can't tell I take it. There are people on a lot more T3 than me. It depends on your particular problem.
Just reduce by 25mcg Levo and wait for your next blood test to see where in the range your FT4 sits and then decide if you feel you want to try a further reduction.
The only way to do it properly according to our pharmacist is to dissolve the tablet into 25mls water and when it's dissolved you draw up the amount you need. They they tell you to chuck the rest. Ridiculous i know.
Thank you but I’m not sure I get that. So you’d dissolve 25mcg of T3 into 25ml of water. Then if you need 5mcg, you draw 5ml? Then you’d throw the rest of the solution away? Is there a reason for doing it like this? I have never heard of it!
Yes it's exactly that. And i don't know why but then said to chuck the rest away. It's such a waste. It's probably because the tablets are so hard to cut.
If you read all the advice, fully, I think you would be expected to collect all the part doses and return the solution to a pharmacy for disposal. But I wouldn't actually expect a pharmacy to be willing to accept any random clear liquid - it could be absolutely anything.
When I started on T3 in 2020, I just took 1/4 of a tablet as a dose, I didn't think it necessary to go with 1/5ths.
I increased it every 4 weeks or more if I was unsure. Once I was sure that I was OK with the dose I took 1/4 T3 25mcg 3 times a day.
I decreased my Levo from 125mcg to 100mcg when I started T3 and then about 6 months later reduced it to 50mcg.
I stopped Levo entirely last year, can't remember exactly when now though, sorry.
I can tell you that I erred on the slow side but I am on a large dose of T3 to what most people take on here, but I feel well, and that is fine by me, BP, pulse and temperature are normal.
Hair regrowing from about early summer last year and weight is better, though not easy to lose still, but I feel fine which I never did on Levo, ever since diagnosis in 1999.
Thank you very much for your reply. The more I read about it and the more I can see from here, the more I realise how hard it is to get it right - and that it takes a long time in some cases. I can see that it needs to be done slowly. Your reply is so clear and I will use it as a guideline. I realise more than ever now that everyone is different and that works for one may not work for another. But what you have said can be applied in principle.
I will start by reducing to 100mcg in the first instance and see how it goes. How long did you wait before starting T3 after decreasing to 100mcg?
Ideally what should my body temp, blood pressure and heart rate be? And when should I measure?
I measure my body temp two nights ago and it was 35.3. My resting heart rate right now is higher than it usually is because I’m still recovering from covid. I’m more than three weeks in and still get breathless at times. But I’m feeling a lot better than I was. At least I can get up now! I’m sure part of it is thyroid too.
Thank you so much again. I have copied your reply so I have it handy.
I was actually on 125 mcg Levo, my GP had been reducing my Levo because each year after my blood test, he kept telling me I was over medicated. So he had already got me down from 200mcg to 125mcg Levo - which was mainly Teva too!!
At the end of 2019 I decided that I was not going to take it any more.
I joined Thyroid UK and started to learn how I could be treated in a better way, because as my Levo was being reduced each year I couldn't see how I could possibly be over medicated 3 years in a row.
I was diagnosed in 1999 and never before had I been told to reduce Levo, until this GP bought out the practice. I had his card marked but had to learn how it all worked before I could tackle him. First he wouldn't agree to me having only Accord Levo in future, but I had the Chemist on my side and he always got Accord brand for me and the GP had to agree after that.
Then I decided to go onto T3, initially along with Levo. I asked him to help me with a trial of T3. He didn't like that one bit, told me that T3 was an illegal drug and I was never to mention T3 again to him!
He did give me a full thyroid check though, it came back again and he was back again with the argument that I was still over medicated!
I was to reduce Levo to 100mcg. I refused and asked why he wanted me to decrease my Levo again and he said my TSH was high! So that was it!! I had to explain why I wasn't over medicated if my TSH was high and I refused to decrease my Levo.
So I had to go It alone. I figured as I by that time realised I knew more than he did, I decided to do my own thing, because it couldn't be very much worse than under his care could I?
And to be honest, I felt so ill all the time that I thought that I was then 67 years old and to be honest I would rather have died trying to get myself right, rather than let that tin pot little Hitler keep treating me!
I had been on anti depressants for 4 years by 2018 and I was in ICU for 10 days after trying to kill myself in June. No one put 2 and 2 together then, and neither did I! I thought my GP knew how to treat my hypothyroid, but he is still treating his hypo patients in the same way - killing them be degrees.
So after starting my T3 in 2020 - and at first I started on too high a dose which scared me silly with headaches. T3 doesn't stick around in your system too long though, so I soon realised that I had to take it slow.
I kept to 100mcg Levo until about early 2021 and dropped Levo to 50mcg.
I was on a good dose of T3 by summer 2021 then I noticed my hair was regrowing - I was surprised how much I had lost to be honest, I didn't know until it started growing back. T
I carried on until I decided one day to try stopping the remaining 50mcg Levo and I never noticed I had stopped it! So that was gone too. I haven't felt so well for years since I stopped it. It was no good to me at all.
I never had to worry about Levo in the end, though it wasn't any good for me even though I was on it for over 20 years!
I now take my T3 in 2 doses, one in the early morning, ideally around 4.30 am but I often miss my alarm and take it when I wake up instead. And I take the 2nd dose when I go to bed. I used to not be able to sleep for so many years but it is very rare that I don't sleep well now.
I wish you the best of luck, I hope you feel as well as I do on T3. Just go slowly, you can always go back a step if you have to, but if you increase your dose only after 3 or 4 weeks, until you know you are doing well at that dose, you probably won't notice the increase. Once I learned that lesson I was well away.
I forgot to answer your first question about when I reduced to 100mcg Levo. I think I reduced it in the first month that I started T3 to 100mcg Levo. Then about 6 or 7 months later I reduced Levo again to 50mcg.
I was only having 1/4 of a 25mcg tab of T3, once a day, so I didn't drop it to 100mcg until I was starting to take my first increase of a second 1/4 of a tablet.
I always planned to write down every step that I made along the way, but I failed miserably once I knew that I wasn't having any problems from T3. I honestly couldn't have cared less about the Levothyroxine after that, because I didn't need it.
Can i ask what dose you are on please. My Endo thinks 15mcg 3 times a day is sufficient but i absolutely believe i will feel better with more. I have SAI so am a bit worried about whether it's that or hypo symptoms. Do you feel really well now?
I am not medically trained in Thyroid treatment unfortunately - though I did once deliver 9 babies in Stoke on Trent as a pupil midwife.
If I was and medically trained and treated my hypo patients as individuals, who would all need individual meds and individual doses of those hypothyroid meds, the government would have kicked me out by now for not towing the line and not treating my patients according to a TSH result alone.
Dr Peatfield and Dr Lowe had to resign after all and I would be surprised if there weren't more who have been pushed out of medicine to be. Surely there are more medics who suspect that something is wrong in hypothyroid treatment in the UK aren't there? They can't all be morons as my GP was and is.
I am on more T3 than you debsmitch60, but I know that lots of people on here are well on much lower doses too. Hence the need for individual treatment.
I have worried about whether I was taking too much, because I usually read that people are on much less T3 than either you or me, but I have no problems with it to date.
My basal pulse, BP and temp are normal and so I don't think I have anything to worry about because of that. I just increased it slowly as I went along my journey. So I don't think any of us should get hung up on our doses of T3. You either feel well, or you don't that is how I think of it now.
And I haven't drawn the line yet, if I thought I should increase it for some reason, I would increase it and see how I was on a higher dose. I have never felt that I was out of control, I have never had to top up my T3 from the meds I keep in my handbag when I go out anywhere either. I know that my ex GP would expect me to be in the morgue by now!
I have never seen an Endo, but I have read the stories of their paranoia about 'high' doses of T3 - AF and God knows what else, but all I can say is that I have been on this current dose for a few months now and I have no palpitations - I did used to have an odd pulse at times when I was continually on Levo alone, more so as my GP took my dose lower and lower. The itchy ears, hair loss, weight gain, insomnia, etc etc etc and more have also gone.
I have a life now and it is only because I was forced to take my own life into my own hands.
The fact that I don't need to get a prescription each time I increase my T3 has left me free to do as I please. You are stuck with an Endo I presume for your scripts?
I can see her side too. If I caused myself damage because of the way I treat myself, no one could take me to court for it. I suppose it is as simple as that.
If you want to talk more about this I think it might be best if we do it through PM, do you think?
I follow Dr John Lowe's method and he was a scientist/researcher/expert on the use of T3 and he was also an Adviser to Thyroiduk.org.uk before his accidental death. I will give a link - just for information.
When he was a young boy his father committed suicide and so did some of his father's brothers and that sent Dr Lowe onto a search when very young teenager into why some people take their own lives.
That's why he was also such a good doctor in that he knew the suffering that went on within families who had members who did the same and probably were shocked to the core.
Dr Lowe would never prescribe levothyroxine. He prescribed NDTs (natural dessicated thyroid hormones ) the very original from 1892 but now withdrawn in the NHS without any warning to patients who were well upon it.
He also resigned his Licence as he knew he would be pursued as if a criminal for helping patients recover their health.
It is a terrible thing for Dr Lowe to have discovered that he lost his family because their thyroid wasn't working properly.
I am lucky up to now anyway to be the only hypothyroid person in my family, though I am worried about one of my daughters, her face is getting puffy and she is 48 now, and going through menopause, which was when I was diagnosed. I am trying to get her to have a test done, but she is very reluctant.
Your daughter is probably a bit cautious and if she's feeling relatively well will be reluctant to have a test. Maybe when symptoms begin to appear she will have a test.
Unfortunately I can only tell the story from my prespective, even that came about because I really had come to the end of my tether as far as hypothyroid treatment and the NHS. I had to go it alone, they would never refer me to an Endo and until I started to educate myself about hypothyroid treatment, I really hadn't got a clue what I was being treated for or with, except loosely that it was thyroxine. I was just told that Levo was the only choice available to me.
I did join British Thyroid Foundation in late 90's early 2000's and visited their site often, but I really never got anywhere. I saw Barry Peatfild too at that time, but after that I just came to a full stop and took the tablets/had the blood drawn when told to. I put it out of my mind until 2019 when I just decided that it was now or never.
There are differences of opinion about how much T3 is "worth" compared to T4. As someone who take T3 and T4 I don't think T3 is "worth" four times as much as T4, I would say it is three times.
So 20mcg T3 would be equivalent to 60mcg T4, and 25mcg T3 would be equivalent to 75mcg T4.
As there are differences of opinion on this people really just have to try T3 and decide for themselves.
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