I’ve had a none too uncommon nightmare journey over too many years with Hashimoto’s..
Just recently dropped off all NDT after 8 years or so...prior to which Levo.
Could NOT seem to raise the NDT doses no matter what I put right..so felt time had come to try the t3 only...
Obviously ..I’d love a suitable doctor to guide me..but I have none.
Using Paul Robinson’s excellent books instead.....
Question to anyone who can identify...
I don’t feel very good at all...yes..only four weeks in...started on 10 mcgs then 12.5 ..
Last three days 20 daily...split...
I’m just pretty cold, thick head and very extra tired ..and a teeny bit spaced out and a lot lack lustre .
Anyone identify with this please ? Am concerned about whether I perhaps SHOULDNT have ditched my last half grain altogether ....
Would it matter..if I shouldn’t have.? Can t3 begin to work for you anyway?
Am so unscientific and struggle to keep up with the facts of it all...but plod on doing my best...but feeling I’ve rather gone further down hill is worrying...
Is it just a matter of time? My temps have improved ...and heart rate...temps were on the floor and heart rate was consistently 60 ...
Now HR is more like 72 and temps are climbing...but don’t feel right at all.
Help..to anyone who gets all this...maybe you have valid experience to share wirh me...
Very brief is very fine...don’t feel I’m wanting to take up your time and energy too much !
Thanks everyone.
Written by
Jollypolly
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Yes, I'm no T3 only. At the moment, I'm taking 50 mcg - came down from 75 mcg a few weeks ago mainly because I developed a tremor in my hands, but also due to fears of not being able to get supplies during lockdown. Not saying my dose is typical of anything, it's just me, but I can't imagine anyone feeling good on just 20 mcg T3 only.
With T3 one usually goes up or down by 6.25 ever two weeks, pausing at 25 mcg for six weeks and retesting. Although T3 doesn't build up in the same way as T4, it still does need time to get the full effects. But, you're not ever going to get well if you don't take enough.
PAI & Hashimoto’s Hypothryoidism- I am seriously thinking about trying T3 only. Has this helped you? And how hard was it to step up your T3 medicine to feel better? I am currently taking NDT.after having many problems with T4 only which includes adrenal crisis. Thanks so much for your assistance.
I cannot possibly reply without seeing all your results, with the ranges. Please start a new thread giving all the details, so that more people can see it.
When you say that you couldn't raise your NDT dose, was that because you were having symptoms of too much T3? Anxiety, fast heart rate, insomnia, that sort of thing? If so, this is what always happened to me when I tried to raise my NDT dose.
NDT brought up my FT3, but didn't do much for my FT4. I couldn't get my dose high enough to bring up my FT4 because I was sensitive to the T3. I couldn't even add 1/16 of a grain without feeling it! I am sensitive to supplements, as well.
I finally found tiredthyroid.com and I also purchased her book from Amazon. I did as the book said & I added Synthroid to my NDT dose. That way, I could bring up my FT4 without adding more T3. It has worked like a charm for me for the last 18 months. If you're having a similar issue, you could check out her website & see what you think.
Thanks for this...yes sort of...immense trouble raising t4 and NDT...
Was latterly in half grain only for this silly reason ! I always felt it was to do with the cortisol problem...so used to deplete thyroid meds to address it agin..ie..up the cortex etc...
And then found I could not raise thyroid meds back up again...
Anyway...this is a trial as after all these years I’ve run out of ideas ..yes..I have everything in place that I know of..
Anyway...I’m noting your own experience...am wondering if I should have stayed on the half grain and simply keep adding t3 ...I’d already got to half grain and 5 mcg.,,
Am wondering if I should reintroduce that NDT now 🤔
Hi there, sorry to hear that you are suffering still. However, I would highly recommend that you join Paul Robinson's Facebook Group for people who have brought his books. You can ask questions there about anything related to them and what you are doing with your meds. Albeit it isn't so much a group for support with dosing. He does comment personally and will help. There is also another Facebook Group which used to be Paul's but is now run by a lady who used to help him with it. That one is called T3 Support and you can get a lot of help on there with dosing T3 etc. That group is specifically for those using T3. Hope that helps. Don't give up. I agree you are probably on too low a dose but there are so many factors as to why you might be feeling as you are and not necessarily because of the switch to T3 only. Take care and stay safe. Claire. P.S. Paul also does private consults if you need a bit of extra help in addition to reading his books.
- Join Paul Robinson's facebook group the 'thyroid patients manual' & read the 'FILES' section.
- in it you'll find lots of useful stuff, like that lots of other things are also important to be able to process and absorb T3 e.g. cortisol (have you tested your cortisol levels?), B12, folate, vitamin D, iron, ferritin level etc
- how to monitor your reaction to the T3 (record measurements of 'vitals' at particular times - pulse, temperature, blood pressure - to see what your body's reaction to a dose or change in dose is. Bloods tests are also helpful, but it is the fT3 you're interested in - TSH and T4 are not helpful at all when on T3 only.
Pulse of 72 is fine, so is 60 it depends on what's right for you, how fit you are etc.
- the 'T3 support' Facebook group is also excellent
- you do seem to be trialling T3 without doing your homework. T3 is potent stuff and monitoring your reaction to it properly is essential.
Hello been here I tried for a while and seemed to be better then it triggered Heart Arrhythmia and all old symptoms came back - I now take both t3 175mcg and t4 125mcg
From my experience you need to mix it up when you feel yuk slightly change what your taking. Perhaps lower t3 and up t4 when your body gets used to certain medications they seem to stop being so effective
I was on NDT for 3+ years, and had to keep raising every few months; that being said, once I got to 180, symptoms of over-dose were happening. Yet my blood tests consistently were TSH .01, Free T4 lower than range, and Free T3 extremely low, and just in the range... The symptoms I was actually having, were of LOW thyroid. I started lowering the NDT by 60 (1 grain) and adding 12.5 of Liothyronine (1 grain of NDT contains 8-9mg of T3). After that, I raised by 6.25 every 2 weeks until symptoms subsided. I then added 15mg NDT back for 2 weeks, to find that it was not able to be raised more, and my body actually seemed to want less. So I then lowered it, but continued the Liothyronine as it was. I am now on 90mg NDT, and 50 Lio, and finally feel like I have found my "sweet spot," at least for now. My energy levels have greatly improved, and a lot of the "fog" has lifted. I'm still having a hard time losing weight, but clean keto is helping, albeit slowly. I'm not moody or depressive anymore. I feel I've gotten most of my life back, finally. If I had to guess, I'd say that down the road, I will likely be on T3-only treatment (my doctor doesn't seem to want that right now...).
Hi..what a story ! Well...everyone’s story is incredibly different...
Very few doctors would have the empathy and time and patience to deal with all these idiosyncratic bodily foibles !
It’s so difficult just sorting yourself out isn’t it.
You’ve done very well working this out so far..it does seem to be trial and error doesn’t it...you can only theorise so far..
Ultimately, experience seems to win the day.
Thnaks for sharing this...it all helps to see the very broad picture that it is, with it’s countless possibilities.🌝
Hello JollyPolly
I can sympathise (have hashi too). I was doing really well on NDT, although I did require about 9 grains of NDT and a 1/2 tablet of T3 to get the benefits, but never felt better. The NDT I was taking became discontinued, so I switched onto T3 only medication only, as I was told I don't convert, and I have had a terrible time.
I started with 25mcg and added by half a tablet every 12 - 14 days. I am currently on 225 mcg of T3, and do not feel good: all the weight I lost has come back in only a month and I feel tired again.
I know some T3 brands are better than others, just like with T4 so just I'm planing to experiment with a different one and see, this may be something you have to look into as well.
Thank you and to you. You are absolutely right, we are all individual's. I don't even use blood tests anymore, I just go with what my body tells me, and I have to admit, it has not failed me yet
T3 is not an easy ride. Are you attempting it on your own as I suggest you get regular blood tests to check you are going in the right direction. You can do this with medichecks. It takes patience to find the right dose and I would increase very slowly. It can be hard to work out the correct dose as taking too much can make you hyper which has similar symptoms to hypo. I take 17.5 per day which is my perfect dose but it took lots of pill cutting and trial and error to get there. Also thanks to this forum my symptoms improved greatly when started taking the whole dose each morning instead of spliting it. But others need to split and feel better taking it at night whilst I cannot sleep if I take it at night. Patience is required with T3 only. I could not take levo it made me feel terrible. Remember with bloods you are aiming for a within range TSH, within range free T3 whilst feeling well! Your T4 will be very low and often freaks GPs out. But all that matters is that you feel well.
Your reply to my post has stayed with me, because I’ve been on a very hairy ride since you wrote, and I honestly can’t believe it’s only 17 days since !
Can you give me a bit more detail of your situ ...I’m interested ...
..
I don’t reckon many people could survive on 17.5 mcgs t3 ! Don’t you take anything else at all? No NDT?
I have Hashis..had it all my life I reckon...I’m 70 ..and so sick of the lost years really trying over and over with this and that..
.it’s only fairly recently I’ve had enough of it all and decided to try the t3 only route.
Thing is.....people who DEFINITELY know what they’re talking about have said quite strongly I’ll not get well on such low doses as 5 mcg at a time...
But cutting a longish story down to the bones...in the last few weeks I’ve gone from 5 to 10 and then 12.5 and then 20
Oh my word it caused havoc ! I’ve learned an awful lot from the experience and from scouring Paul Robinson’s books alongside ...
one or two counterintuitive things showed up..
.ie ..that if taking too much t3 you CAN......possibly uncommonly .....get further HYPO symptoms...which is exactly what happened..
I’ve had symptoms of extreme stress AND extremely low adrenals,,,,
Been very unwell....but everybody and all the books intimate you’ll certainly need at least 20/25 daily....
So YOUR REPLY STOOD OUT...AND HAS GIVEN ME THE SENSE IM NOT GOING MAD !
I stopped everything for two days and then restarted last week...
today got back to the 12.5... and wonder if THREE DOSES OF FIVE may be my answer....do you use three or four doses ?
..maybe I just don’t need much....
I’ve always had a gut feeling it could be so....
YOU obviously like things on this low dose...it must be quite unusual..
I wonder if it’s because I’m only 5 ft 2 and 9 stone ! And very sensitive to everything...AND....eat very healthily....
I am on T3 only and only 25mcg and feeling better, better than I did on NDT or levo. It sounds like from you post that you stopped the NDT completely before starting on a very low dose of T3. I wonder if you might be feeling better if you had tried to convert your T3 dose to try to match it to your previous NDT dose or thereabouts and if you might feel better if you tried to ajust you T3 now to more like something our body is used too.
Actually ..was latterly on half a grain..couldn’t seem to raise it more..and then added in 5 mcgs t3.for a fewweeks before I decided to go with t3 to try...started on 5 mcgs snd built it up
Now on 20 mcgs.
It’s funny..but I find the t3 seems to make me feel a little extra tired in the day...or am I imagining it ?
In the earlier hours it definitely sends me back to sleep...
I don't know why you think you have to be on minimum 25mg which would roughly equate to
100 mg levo. 17.5 equates to roughly 75 mg
levo which is the dose both my sister's take who can convert T4 to T3. I wouldn't follow everything in Paul Robinson's book as I felt better once I took my meds once a day in the morning. When I took too much I felt very tired
which is also a hyper symptom. Use ablood pressure machine and thermometer to take your temperature but also go up very slowly.
Use medichecks to see if you are taking too much. Use increments of 2.5 mg a day. If T3
is making you tired you are either taking too much or not enough. You need to adjust one thing at a time is time change or splitting of code or dose amount. And each change you need to give at least a week to see if you are going in right direction.
I hope this helps. Try not to change too may things at the same time. Be patient and wait at least s week to access how you feel
Still felt a bit rough after several very poor days
But at 10.30 I added in a new 2 mcg and after that started picking up
Then I took the other 5 at 5
If In coming day or two I start feeling worse again I’d want to adjust doses down immediately back to 10 say but would you suggest that’s right or should I wait a week feeling ghastly ?!
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