I am self medicating and stopped taking levo, I am taking 37mcg early morning and another 12.5 at 1 p.m, I am feeling a little better, but wondered if I am taking it in the right way, and should I be on a higher dose? currently on 50mcg a day, I was taking 150 mcg of levo previously,
I would be grateful for any advice or experiences from anyone who has also given up the levo and is better now on the T3 only,
thanks, Sue,
You need to take it s l o w l y and not increase too quickly. Many people split their dose 3 times per day, myself included.
To be honest, that's a large first dose but importantly how do you feel?
thanks for the reply, I have been feeling fine but started to get a bit wobbly yesterday, could that be the previous T4 leaving me? and maybe I should spread my doses so I don't start with such a large one?
I appreciate your advice, its a bit scary self medicating, x
If you don't feel overmedicated (fast pulse, palpitations) on your first dose there's no need to decrease it. Some people take their entire daily dose in one hit.
Id be inclined to raise your 2nd dose to 25mcg & see how you feel. If its too much you çan split it. You can experiment with taking your meds last thing at night/1st thing a.m./one daily dose/split doses to determine what best suits you.
T4 can take 6-8weeks to leave your system.
I take T4 only now but for used T3 with the T4 for over 2 yrs. In that time i have seen how my body responds to the thyroid meds and have worked out the key thing is to "coach" our receptor sites back to life. Some key points you may find useful which i have discovered for myself:
1) Do one change at a time and let it sit for a week at least (dont increase thyroid meds and add in a few vits. Just do one thing at a time as you will never know what is doing what.
2) Increasing thyroid meds is not always the right answer. So you must add in a few days where you drop a dose after a while. This has the effect of confirming whether you really do need that level of thyroid meds. It works very well with T3. So say you start on 20 and after 3 months you get up to 50 T3. Before the next increase i would do a drop back down to 40 T3 to see what happens to you. You will either feel worse or better.
I did a very controlled change over from using mostly T3 to using only T4. In that time i was doing very well, but i hit a point where i was not doing so good and i couldnt work out what was happening. I was now taking 125 T4 and 20 T3. It turns out that after i went up from 100 T4 to 125 T4 my body was saying it needed even LESS T3, but i didn't know it was saying this. I discovered it after a few bad weeks. I had a blood test booked in the afternoon and so had to miss all my T3 that day until i had the blood taken. But by lunchtime i was feeling great so i realised i probably needed LESS T3 at this point. Ever since then i haven't really taken any more.
3) I also tried T3 only and it worked great at first, but i think as the T4 disappeared i felt worse. It only took a week for the T4 to drop off the radar for me (or a level my body was happy with). So instead of dropping all the T4 i decided to go onto a low T4, high T3 routine. I decided on a dose of 25 T4 and then held this indefinitely. I then upped the T3 until i felt good. The highest i could get to was 55 as anything past this point made me hypo. So be careful as too much T3 makes you hypo.
I held this dose of 25 T4 and 50 T3 for a year and did fine. However, i wondered if i may be able to shift the ratios around one day and maybe take more T4 and less T3. Well, it has taken me 2 1/2 yrs and i have done it and i only take T4 now (150 at present). In this time i think i have coached my receptor sites back to life (or the ones which were asleep). If i go back in time i was on 150 T4 only and i was still ill, so i know the T3 has done a job of getting my body used to the higher levels of thyroid which it wasnt experiencing due to a low functioning thyroid (i was actually ill for 16 yrs without treatment). So the longer you have been ill the longer it takes to bring everything back online.
4) i took my T3 in 3 doses per day - 20 / 20 / 10. As i decreased this dropped down to 2 doses
Hope this info helps.
thanks so much Marsaday, that's amazing that you are back on T4 but it works for you now! there is a lot of trial and error and listening to you body.
I think my body has started to react to not having the T4 now, so I will give the T3 a chance and split my doses more, but if that or a slightly higher T3 dose doesn't work it could be my body would want some T4 back,
you have helped me a lot with your experience, thanks very much,
I hope you continue to feel better, sue, x
Susie, you are mad taking that much t3 without really knowing what you are doing.... 50 mcg of t3 is equivalent to 200 or 250 levothyroxine, but its a completely different hormone..... And its much more dangerous to be over range with t3, which is an active hormone, than it is to be over with levothyroxine, which, after all is a storage hormone that doesn't do anything unless you convert it.
Really you ought to have dropped the levo by 50 mcg and replaced that 50 with 10 of t3. S you would have been on 100 levo and 10 t3. If it dint make you feel any better after a week or so. You could have maybe raised the t3 to 20 and held the dose for a while....... Ten after a few weeks perhaps drop the thyroxine a little bit more......... All the while monitoring and recording the daily averages of your temperatures, so you can see what is happening. As per. drrind.com
Do you know at the moment what your average daily temperature is? Is it the same every day or is it fluctuating wildly?
What was you reason for wanting to go on to t3 only? Do you have high reverse t3 and all the associated problems? Do you know for sure that you don't convert the t4 into t3? Have you made sure you are taking selenium? Is your iron good, your d3 and your b12?
Sorry if this sounds harsh, but just taking the t3 without really understanding it can lead you into all sorts of trouble. I self medicated with t3 and then got my doctor to prescribe and monitor.... I now self medicate with NDT, But it took me years of constantly monitoring and adjusting. Please don't just jump in and hope for the best, which is what it sounds like you are doing.....
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hi Galathea, I was having terrible joint pains and the usual symptoms that seem to come with T4, including vast weight gain which has lead me into being pre diabetec,
I reduced my Levo down before starting the T3, I take selenium, ferritin, D3, B12, magnesium, vit C, zinc and folic acid. I also read the book recovering with T3 and I am following DR Lowes writings and advice.i have also read everything I could find about reverse T3 etc as I think that has been a problem going by what I read by Dr Lowe, I take my temperature about 5 times a day and its pretty steady on the low side, I am grateful for your advice and help, but I haven't just jumped in, I promise. Sue, x
whew! That goodness for that. Ok, sorry to have jumped in there, but it just read like you were guessing..... Good luck.. Hope you sort it..... xx
I found this very interesting Marsaday. It was similar to what I have done. Have been hypo for almost 19 years and taking T4 only 100 to 150mcgs. Then I bought privately T3 Mexican Grossmans. Took 4 small doses daily and reduced T4 down to nothing. Seemed ok but then wham atrial fibrilations and not doing to good. Had bloods and TSH gone upto 29 instead of 0.07. Back on T4 worked upto 100mcgs and T3 only 12.5. Still do not feel good so after bloods next week (to see if tsh has come down)will recheck. Having bloating and lots of weight gain. Just found out I have low vit D only 23 and bloods to recheck again this week and doctor will give me Vit D. Have read and studied a lot and know it is important for Hypos for vit D. Could anyone please give me further experiences with vit D.
Hi Marmaris
So you went from 150 T4 down to 25 T3 ? Is that correct? How long did it take you to come off the T4 fully ? How long before you became unwell ?
What was life like on 150 T4 compared to 100 T4 and 12.5 T3 ? Is it better or worse.
The aim is to try and get as well as you can and stable on the T4/T3 mix. Then you hold for a long time - 6 months possibly. I held for a year.
I would try and take a smallish dose of T4 and then use the T3 to try and make you really well. Looking back at my own experience my body needed the T4, but it needed the T3 to make everything work perfectly. As time moved on and i stayed well for longer the body adapted to the new hormone level. It was obviously able to process the T4 much better than before and so i was able to give it more T4 slowly and then drop the T3.
It is really surprising as i thought i would need to take the T3 forever.
I really think those of us who have been hypo for just a little while can get straight on the T4 and get their full lives back, but those who have been ill for years and messed around by the terrible diagnosing process have to reeducate the body how to use thyroid hormone effectively again.
Sorry but i dont have any info on vit D.
Hello marsaday. I was originally on T4 100mcgs then I started taking small doses of T3 on a small dosage four times a day. While doing this reducing gradually down the T4 to nothing over a period of about 8 weeks. By then I had worked upto 50mcgs of T3 and I got atrial fibrilation for two days, so I stopped it. Tested and found tsh now 29 from 0.07 supressed to high tsh. Doctor ordered me to start back on 50mcgs of T4 which I did and now back upto 100mcgs T4. Restarted T3 but only 12.5 dose in the morning. I am waiting to retest this week to see what is going on. I have researched Vit D (hormone), and it plays a crucial part in thyroid metabolism ie for the nucleous of the cell to be absobed by the thyroid. This is where it takes place apparently. So testing and hoping to get Vit D from doctor. All swings and roundabouts and because I have had this for so long I feel even harder to repair.
thanks for your reply, I am taking supplements for these because I had this test done firstly 3 years ago, after being on the Levo, for nearly a year, I was never well on it even with the supplements, hence my decision to try the T3.
Ta for advice and sharing Really, it's awful the way we are treated, or rather not treated by our doctors! I hope your daughter feels ok soon, x
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