Hi, I’m currently taking 50mcg T3 split twice a day. Up until recently I’ve had the timings at around 730-8am for the first dose and 5pm ish for the second dose. Sometimes the second dose has moved in either direction by about an hour to no ill effect.
However, now that I feel so much better my activity levels are improving a lot. Over the last couple of months I’ve been doing longer and more strenuous activities and have now started the couch 2 5k as a route back to fitness. Don’t get me wrong, over the last few years of my ‘illness’ I’ve only out on about a stone in weight and apart from at the beginning I’ve been able to maintain my near-daily dog walks of around 3-4K but my cardio fitness and muscle strength is rubbish now.
I’m finding though that on days where I train my morning dose wears off by around 1-2pm leaving me feeling really weak, tired and cold. To be expected. But, if I take my full second dose then, it’s worn off by tea time. I’m trying to split it 3x per day but a smaller dose doesn’t seem to work. (The “wave theory” for anyone who has read PRs Recovering with T3 book).
I’m stuck. I briefly tried increasing my dose by 5mcg, making my morning dose 30mcg and 25mcg later but I couldn’t tolerate that.
Ideas??
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Murphysmum
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Don’t get me wrong, this has been a slow build up. I still felt unable to push myself at all several months ago. But I’m definitely getting places now - just can’t quite work out the best timings!
High energy activity is a tall ask and very tricky
Even after 3 years and being “fully recovered” I can only up the activity levels a certain amount.
Trying to do a even little too much can cause few hypothyroid symptoms return (typically I find headache, carpel tunnel and painful thyroid) .....if try do a lot too much you can feel rapidly feel extremely unwell.....
I think it’s always going to remain a balancing act
I can walk 15,000-20,000 steps a day and on same day do some relatively strenuous gardening for an hour or so ....but if I did that 3-4 days in a row that would be too much....
Yes! I can too. So before lockdown I would drop the kids at school(on foot) and take the dog approx 4-5k walk (up and down dunes, quite tough, not round the park!) and then do whatever the day required. So rarely under 15/17 thousand steps a day.
This is fine, no problem. So at the moment and given life is going to be home based for quite some time, Id like to improve my cardio. So dropping a walk day and adding in a 30 min couch to 5k session. Its meant for total beginners so while I realise I've lost loads of fitness over the last couple of years I figured it would be a good way to build up again. Except I seem to be using up my T3 by lunchtime and I'm not sure how to handle that!
I'm determined to find a way.... I wont be beaten by some damn antibodies!😂
Well when we take dose that suppresses TSH completely, and/or thyroid has been removed or it’s packed up completely......you don’t have a working thyroid to kick out a bit of extra T3 or T4, as and when required
I think of levothyroxine and T3 as the petrol, and the petrol tank only holds a certain amount.
Petrol Tank = equals the maximum dose you can tolerate.
On a full tank, if you want to drive all day ......you can potter along at reasonable speed without running out
But it you go flat out, racing up hills you’re going to run out of petrol long before the evening
I have been known to describe my struggles on thyroid meds to healthy individuals as "putting cooking oil in your car. It works but its not great and will do long term damage if not corrected".
A similar train of thought!
Thank you. Yes, you're right of course and I guess I'm inviting a "well be it on your own head" type response but I'm so sick of bowing to this disease when it gets tough. I'm determined to find a way..
We shouldn't overdo exerise as it is T3 that is necessary to permit us to do so. T3 is the active thyroid hormone. and we have millions of T3 receptor cells in our body and brain and heart have the most.
The scientist who was an Adviser to TUK (now deceased) only took one blood test for the initial diagnosis and would only prescribe NDT or T3 alone for those who were thyroid hormone resistant. He advised his patients to take one daily dose and I'll give you a link - just in case it is helpful for you.
I have tried one dose over the last year or so of trialling but I couldn't tolerate it. That would be the ideal solution. I think maybe I need to tip the balance in favour of a bigger dose pre exercise and less later. Ive always found that worked but maybe need to tweak it a little more that way.
I will not let this beat me. I will be able to do what I used to, I'm not growing older, less fit and fatter all because of this stupid disease!
well I've now dropped my levo again. Having reduced then dropped it before, I reinstated it but decided it really isn't helping much and on my last bloods it was at such a low level I decided to bin it again and try maybe splitting my T3 three times a day as my endo suggested.
Just need to balance it with the exercise too now!
Who knows, I may yet add it back in again but I want to try a couple of months without as I'm certain my cycle is affecting things more than I had given it credit for but can't tell with so many variables.
I'm going to keep a diary (she says, having never been that organised in my life) to see what happens. My motivation levels and muscle strength seem to plummet around ovulation and never recover until day 1 again.
Not sure how to fix that but at least I'll know...
Dr JohnLowe was an expert in the use of T3 - T3 for patients who were 'resistant' to thyroid hormones. He would only prescribe T3 but NDT was prescribed for patients who were not Resistant.
Never would he prescribe levothyroxine as he stated it was through payments to doctors (In the USA I believe) from pharmaceutical companies to prescribe it instead of NDT.
He stated that one single daily dose of T3 saturated all of the T3 receptor cells and then it 'sent out waves' throughout the day. One daily dose suits me and have a normal life - forget I have hypo.
Dosing T3 with an aim to increase exercise level doesn 't sound like the way to go.
Would it not be an idea to aim to be at least close to symptom free first....with perhaps some gentle exercise.
My body would have gone on strike if I'd asked it to work too hard!
When your T3 dose is optimal you should be able to lose weight - I lost almost 3 stone but it took well over 2 years!
I'm afraid the T3 -only route can be very long and very slow, the frustration of trying to rush the body into working faster than it is capable/prepared for will only be detrimental.
What symptoms were you experiencing when you felt you could not tolerate extra T3? It is possible that happened because you are still undermedicated. I take it you check heart rate, pulse and BP daily to avoid overmedication
Trial and error rules!
I reached a point when I wasn't sure if I should increase or decrease my dose....I tried an increase with no signs of overmedication.
There is no quick fix,
I started T3 only in Feb 2018 and I can only now say that I'm almost there! That is, I can now function....no chance of marathon running!!
I take a single huge dose around 6am
I'm 74 and have had problems for decades, now evidently the result of a type of thyroid hormone resistance most likely an as yet undiscovered genetic variant (that from a geneticist)
Hopefully you've had a head start on me!!
I feel your frustration but experience has proved to me that the body cannot be forced to do something when it's not ready.
Listen to your body!
Going T3-only can be a very lonely place (it has been called the last resort) For the most part nobody around you really understands how you feel, or what you need to do. They can only offer support....thankfully I have a very supportive husband who kept me going.
Knowledge is your other weapon. I'm sure you will have read extensively.
Those two factors should help to give you the support to keep going....and the confidence that you are doing the right thing. We all have wobbles along the way!
Finally, had it not been for the chance discovery of this forum I doubt I would be writing this today. The knowledge of experienced members here has helped me function again. You will find no better thyroid advice, guidance and support anywhere than on this life saving forum.
Keep going...you can do it
My rant over!
Best...
DD
PS are you sure you're not changing dose level and timing too quickly
I am now symptom free at last. Its taken me nearly three years and almost 18 months with
T3 to get here. AND lots and lots of reading a research, thank you.
Like you, I wouldn't have made it without this forum. I had decided that I wasn't satisfied with my GP's diagnosis of ME prior to finding it though, and began my own research.
I've been asymptomatic for about 5/6 months now but have been playing about with the levo aspect. On it, off it, very much reduced on it, back off it! The only reason I can see for taking a teeny tiny amount is to level out the troughs of T3 - though Im determined to see if I can do it without it.
I can lose weight if I try hard but my issue is it has to be very hard. Like, eating low cal, low carb meals, no rubbish and walking about 6/7K a day sent doing anything. As I said to SlowDragon , my other hormones are out of whack and I suspect this has a lot to do with it. All my weight is around my middle and hips and I have estrogen dominance problems. Id like to try to lose some of this weight to see if it helps but in the main, its cardio fitness I'd like to regain.
Och, I know its a slow burn. I've advised newcomers to the forum of this myself!And I probably have been guilty of changing dose too quickly in the past. But now I'm definitely at the tweaking stage. If I have a normal, low intensity active day then the current 50mcg is perfect. No symptoms, no tiredness etc etc.
But when I add in the extra exercise (the cardio that is, cycling, long walk, heavy gardening all good) my T3 runs out early. So by lunchtime I'm cold, ready to sleep and my limbs feel like I'm climbing out of the pool after 50 lengths!
I honestly don't feel like I'm attempting too much... I'm hoping its a case of dosing properly though goodness knows what that is!
It really does sound as though you're being awfully hard on yourself physically. If ever I need to exert myself more than usual (which I try not to do, because I have poor mitochondrial function), then I have to take extra T3, otherwise I will collapse, and recovery will take days or weeks.
It's now recognised, even by the mainstream, that exercise will not help people lose weight. And for women with UAT and oestrogen dominance, weight loss is even more difficult.
All hormones need to be optimised for the individual - something I have reluctantly come to realise, several years post-menopause - so perhaps one of your next steps could be to try a safe form of body-identical progesterone, e.g. the micronised oral capsule form, Utrogest. Of course, you'll need to find someone to prescribe it. (If lockdown ever ends, I intend to find a sympathetic menopause specialist myself.)
I'm in complete agreement with DippyDame about T3. I'm also on T3 monotherapy, after decades on levo, followed by a supervised experiment with T4/T3 combo, then NDT (under Dr Peatfield), and finally realising that only T3 would help in any way at all.
It was a looong, slow process for my body to adapt to a hormone it desperately needed. A lot more time passed before I realised that I needed the T3 in a) a much larger dose, and b) all at once, on waking. It's likely I have a form of tissue resistance to thyroid hormone - hence the need for a massive single dose - and I think this problem must be much more common than is currently understood, since most endos aren't even aware of it. It's something that's discussed in some textbooks and research papers, not in clinical settings.
I realise it must sound like I’m training to run a marathon - trust me, it’s really not.
Yes, it’s an increase in intensity maybe, on that day, but it’s not really an increase in overall output - if you see what I mean.
I feel I’m doing well physically now and the recent things I’ve reintroduced I’ve been able to manage easily and with no adverse symptoms.
I just feel I’d like to try to increase my cardio fitness a bit and any weight loss would be a bonus! I’m perfectly sure the weight around my hips is cycle-driven but any fat loss would only potentially help my estrogen dominance issues.
For the second day this week I increased my morning dose to 30mcg with no ill effect so I’ll see how that pans out. Maybe that’ll be all that’s needed. I previously tried taking all of something like a 45mcg dose (can’t remember) and couldn’t tolerate it but we’ll see how that goes.
I am learning that this is a long road. I knew within days of finding this forum that was the case so I’m under no illusions.
Certainly now though I am at the tweaking stage and whilst I don’t want to jeopardise that, I fo want to try to return to as hear a normal life as I’d like, and have my meds suited to that as well as I can.
Day two tomorrow so I’ll see what happens. I’m feeling no lasting ill effects (so far, it’s just the start) it just seems my T3 runs out too quickly and a split dose thereafter isn’t enough.
You reminded me of my doctor who phoned me after a blood test. He stated your TSH is too low and your T4 is too low and your T3 is too high. I said that's what keeps me feeling well.
He said (knew I was taking T3 and no T4) but T3 converts to T4. I said 'I'm sorry doctor, it is the other way around. He had no answer to that.
Whilst I’m on, thoughts on this SlowDragon shaws DippyDame ...
I’ve had a couple of cortisol tests over the last two years and they’ve been “normal”. However, I still find when I get a fright (like I just did earlier on, I won’t go into details) I’m very shaken for quite a while afterwards.
Does this mean there might be issues? It’s ridiculous. Tonight was minor, I had a near bump (not my fault) in the car a couple of months back and it was the same, as if I’d had a major accident. I’m not easily scared or worried.
Wondering also if the circadian method might be worth looking at? All in time obviously but just to throw something else into the mix! 😂
The more you exercise the faster T3 will drop. I suspect, from personal experience, that a fright/shock will do the same.
Might that suggest you need an increase.
I agree with shaws about a single dose....her advice was very valuable to me
I suspect that people who only need a small dose of T3 can tolerate splitting, however, when on a supraphysiolgical dose (which only people with thyroid hormone resistance can tolerate/needs) a single dose seems more effective.
The large single dose (e.g 50mcg plus) appears to act like a battering ram against the cellular resistance enabling some of the T3 dose to be pushed into the cells. The remaining T3 is excreted by bladder and bowel. It's the only way to get enough T3 into tissues.
Clearly I'm not a medic so I can only refer to personal experience...and I'm probably telling you what you already know!
Sounding like a broken record... in your shoes I would trial a single slightly larger dose
You’re not telling me what I already know but even then it’s useful to be reminded sometimes. I think most of us have read so much that it’s all jumbled up in our minds sometimes until someone mentions it and you pull it back out!
So, 25mcg in a single dose is fine for me. I don’t recall what I took previously when I didn’t like it but I’ll try 30 tomorrow and see what happens.
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