Is it just a case of reducing T4 and seeing how you get on?
I've been on T4 for 4 years and just continued to decline, recently added in T3 and hey presto life in the old dog yet!
Another post mentioned kidney pain whilst over medicated with T4 which I have, so was thinking I'll start to lower the T4...
Last test result 17.5 (12-22) 21.11.22 having been using T3 for 4 months had been at 21.7 (12-22) before starting T3, I've not changed the dose.
Any experiences to share would be very welcome
how much T3 are you currently taking
Are you taking this as divided dose , 2 or 3 times per day
Are your vitamin levels optimal
Ft4 tends to drop when T3 is added
FT4: 17.5 pmol/l (Range 12 - 22)
Ft4 is now only 55.00% through range
That might be a bit low
Perhaps retest in another 6-8 weeks and see if dropping further
Thanks SD,
Yes, I was anticipating a drop so didn't change my 100 mcg dose of Aristo, I split my 18.25 mcg T3 into 2 doses am and pm. Due to drop this down to 10mcg once the endo prescribes some lactose free... and drop to 6 days of T4
Since adding the T3 my TSH is has dropped to 'borderline' 0.05 (0.27-4.2)
Do T3 only people still manage to keep their T4 in range I wonder?
why on earth would you stop levothyroxine one day a week?!
Many, many people on small doses of T3 find they need BOTH Ft4 and Ft3 approx 70% through range
Suggest you try T3 as 3 x 1/4 tablet spread through the day
Either 6am, mid afternoon and bedtime
Or if T3 keeps you awake
6am, noon and 6pm
When do you take levothyroxine
Ah, the vagaries of the Endo mind, a small drop was requested to help raise the TSH.... so a bit of hoop jumping for my first visit 🙄
I take levo first thing with 2/3 T3, though when I first introduced T3 I found I got along better by taking it as one dose as it stopped the pm slump, like I say I'm due to drop to 10 mcg so started splitting my dose in readiness of this... I think it will be too low but alas hoop jumping to get things started 😬
Perhaps I should split my T4 also, though never found the need before?
I never split my levothyroxine before adding T3
But I have been splitting in half for about a year. Find it significantly smoother.
Plus 3 x 5mcg doses T3
Half dose levothyroxine with first dose T3 at 6.30am
2nd 5mcg dose T3……varies a bit in timing depending of food ….sometime between 2pm and 4pm
Remainder of levothyroxine and last dose T3 at 11pm
I shall give it a go, as I now split my T3 and have suitable little pots around the place...
It's all a bit suck it and see really isn't it 🙃
Definitely
Taken me 4-5 years tweaking timings and doses
I was initially (like many) put on too high a dose T3 and levothyroxine was reduced too much
On almost any dose of T3 TSH will become suppressed or extremely low. It’s irrelevant as long as Ft4 and Ft3 are not over range
Yes, I've learnt that here... Endo yet to be educated... I'll work on her 😋
same with my endo - I wonder if they have to be seen to be mentioning/trying to raise the TSH ?
He lowered my Levo to “possibly raise my TSH a tad”, felt so dreadful I put it back up and told him that was never going to happen again 😡
Great medical terminology “possibly raise my TSH a tad” 🤣
Being firm with them seems a good tac tic rather than discussion 👏
I’ve learnt so much on this forum and also know what suits me more now too, I’m not going to let anyone mess it up. I’ve had too many months of struggling and too many special occasions ruined, so I need to do what’s right for me (I try my best).
He also said “your GP should be prescribing your T3 by now”, I replied “it would probably be like pulling teeth and I’m not prepared for them to suddenly decide I shouldn’t be having it”. So I will continue to pay.
The T3 itself is not too bad, it’s the endo cost and the supplements I require that put the price up.
I also don’t want to change brand of T3 and I don’t think you can get Thybon Henning without a prescription of some sort (I may be wrong).
Good luck with sorting your levels.
I hear you!
I've recently read Hashiboy I think say to Hidden that he was able to get Thybon Henning via the NHS, think he is in the BANES area.... (don't know where you are as that is another lottery) I have requested it from my Endo in Gloucestershire but am still waiting to hear...
On T3 everyones TSH should be suppressed as thats just the way of things. Reading your comment about your Endo wanting TSH at a higher level and thus dropping your Levo dose would make me wary of this Endo as he isn't taking your symptoms into concideration and likely to make you unwell on too lower dose.
In adding T3 to my Levo I am aiming for the approx 70% through range result for both FT4 & FT3 and then review after a decent length of time on that dose along with optimal vitamins. What anyone else is doing isn't relevant to myself.
Yes, I was surprised at the request to drop T4 for the sake of TSH, didn't want to get off on the wrong foot though so bit my lip, I shall be less accommodating in future consultations, but I'll give it a try... I really wanted acceptance from the NHS that T3 is necessary and access to lactose free T3 so....
I hear what you say about it all being totally individual, vits and mins are all optimised now thanks to following the advise given here.... bloods hopefully still improving with the rise in ferritin... I have the wonky DIO2 gene so was quite surprised that the addition of T3 dropped my T4 quite significantly, though I do have a dodgy feed back loop also!
It really is all quite random
It was the bit about kidney pain and over medicated T4 that resonated though my numbers are as SD said around 55%
I've seen enough Endo's to know that all they care about is the numbers. Oh, except my latest private guy who so far hasn't shown any concern about TSH and happy to pretty much let me suggest changes. This is why I wouldn't personally bother going via the NHS for T3. Far too many obstacles and traps!
At 55% FT4 you're definitely not overmedicated, actually you're slightly under more like. Now you've gone the NHS route you can choose to see it through and looks like you'll suffer a lot that way, or go back to self medicating or try a private Endo who don't seem so much guided by TSH. Whichever you do it's best to see the plan/programme through until optimisation else you're wasting a whole lot of time jumping from one treatment to another.
To answer the T3 only question, yes people on that have about zero FT4 which is to be expected but that's not the treatment plan you're on.
I'm hoping this Endo can be educated... 🤷♀️ but aware that I might be on a hiding to nothing, I shall baffle her more with my Gene's next time 😉
Thankfully having experimented I'm getting quite a good feel for where my T3 needs to be, but less so with my T4...
To answer the T3 only question, yes people on that have about zero FT4 which is to be expected but that's not the treatment plan you're on.
This is really the crux of the question... how important is T4 to me and how do I find out?
Well if you're going to follow this new Endo's instructions then you're about to find out how important T4 is to you. It's a shame you hadn't got to the point of 'optimal' t4/t3 treatment before you saw this Endo.
I'm not sure how to find optimal with T4 without trying to drop it back, my numbers at the moment aren't far off?.... T3 has made me feel so much better, am I just going to start getting Hypo symptoms again if I cut it back?
I know what high T4 and low T3 feels like... a 90 year old! No idea what I might expect if I flip that?
It never really worked for me as I don't convert it very well at all... when my T4 was at the top of the range my T3 was at the bottom?
How do people find out that T3 only is right for them?
It may well be that I need to ditch this Endo but keen to investigate all avenues to find what fits me
I haven't seen where your FT3 is at currently but if it were me and my dose I'd be adding 12.5mcgs Levo and not reducing if aiming for optimal on current plan. I'm assuming this Endo isn't giving you more T3 to compensate for less Levo? So you're not on a T3 only regime.
Have you at any point had results of approx 70% both FT4 & FT3, if not then how is dropping Levo dose when you're currently at 55% of the range going to find optimal for you? I'm confused.
I know Levo only treatment is rubbish, inadequate, terrible etc but it does do 'something' and if you removed it all now you would know about it.
Dropping any dose of thyroid hormone whether Levo or T3 is going to make you more hypo.
Currently 80% T3, 55% T4.... felt sharper when T3 was 95%
This was the first time I'd seen an Endo so pretty standard starting dose of 10mcg Lio offered though I was on 12.5mcg though this a lactose one
With such a small drop in T4 dose I'll give it a go until next test in 6- 8 weeks and see what it has done to the numbers, I've yet to notice any difference (3 weeks in)... Then at least I can argue the toss with her.... SD suggested splitting the T4 along with the T3 which smoothed things out for her so shall implement that also.
How do people on T3 only manage with no T4?
Hi eye ore .. just to clarify a point .. when i was overmedicated and had the ?kidney pain which went away on lower dose... i did mean ' overmedication ' ,, not specifically 'high T4' had caused it.
I have no idea what my fT3 level was at the time . (and i only take levo) From memory, my T4 was about 120%..... however that fact alone does not explain it , as it has been much higher than that on several occasions when i didn't have any of the overmedicated symptoms i had on that occasion .
The only indicator from bloods was that my TSH had fallen a little from my previously very stable 0.05 ...to 0.018.
So i think my experience is better translated as " too much hormone overall" caused the ? kidney pain , rather than 'too much T4'.
Ah, ok sorry to misconstrue, I did kind of mean too much for that person I suppose, so I'll put T3 in that pot too! Thanks for clarifying
Did you know that some level of progesterone is needed for the conversion of T4 to T3?
I had no idea it is so intrinsic to the whole cycle!!
Hi there! I feel for this as it is an experiment I have been doing on myself recently. Like you, on T4 only, my conversion is absolutely naff - one of the worst I’ve seen. So, I came to the conclusion that I probably don’t need very much, given that my body hasn’t a clue what to do with the stuff. On levo only, I’m a 100 mcg kinda gal but it gives me T3 at 11% through range and it doesn’t improve at higher doses. Anyway, the crux of my experiment is that I need more than 50 mcg levo a day, if I’m adding 15 mcg T3 split, but less than 75 was OK too, so I felt good on 62.5. I’m currently messing around with NDT and my current dose equates to 66 mcg levo and around 15 mcg T3, which is Ok. Instinct tells me that I will probably need another .25 grains, but I am playing the endo game and don’t want to scare the pants off him with TSH at my appointment in a couple of weeks, as I’d like to keep my NHS T3 prescription for the short term, in the instance that my NDT experiment doesn’t work.
It all suggests to me that I’m not a T3 only sort, but neither do I need both ft3 and fT4 towards 70% of range. It’s all so individualised. I think if you can get away with less T 4 - and have an endo-pleasing TSH - then that’s no bad thing. I would only adjust in 12.5s though. Good luck with it all!
NDT always gives much lower Ft4 levels
Yes, I’ve noticed it in others results over the years. Maybe it has something to do with the high T3 ratio so perhaps the body doesn’t need it and throws it out of the proverbial window somehow?! Who knows!
I think it’s because hormones in NDT are “bound”
healthunlocked.com/thyroidu...
Thanks for this - I think it helps to explain why I find NDT a smoother ride than T4/T3 combo dosing so far. We shall see!
Thanks Lotika,
Sounds like we walk in very similar shoes! 😉
What do you notice when your T4 drops too low? It might give me some clue what to look out for... it's the whole thing of being guided by the results but actually listening to yourself to find your own sweet spot.
I thought with T4 being long acting missing a day wouldn't make a huge difference but maybe I will split my T4 and lose the 100mcg over the week.
Having an Endo on side would be a happy outcome but I shan't agree to anything that makes me feel worse, now I know I can feel pretty good!
NDT's a tempting step but it seems to come with a whole new set of issues so I'll stick with the flexibility and relatively well regulated route of T4 & T3 see if I can't find the elusive sweet spot!
Good luck to you too, keep us posted 🤗
yes, I think there is a bit more flexibility in T3 / T4 combo dosing so def worth persevering. Re T4, I just start to feel sluggish and under medicated on too little even if I am taking 20mcg T3 as well, which ought to equate to enough medication for someone floating around the 9st mark!
Ought to ask, how has any of this effected your TSH numbers?
TSH @ 0.72 - on 62.5 T4 so it rose on dropping T4 from 100 and I felt no worse, until I dropped it to 50 to add more T3! Just thinking it through, TSH is probably ugly again in time for endo appointment 🤦♀️
FT4 was 14.5 on a range of 11 - 22, so I make that somewhere around 35% through range of the top of my head…
Initially felt good for dropping to 50 and adding more T3, but worse as the dose settled and presumably fT4 dropped too low.
Hey, time for a catch up? Did you stick with NDT or did you revert back? How's it going have you found the elusive sweet spot 🤗
I seem to have settled on 100 T4 and 15 T3 a little adrenal support with some glandular and 5mg hydrocortisone along with of all the other supplements 😏
Things are pretty good and so far I have the Endo onboard (sort of 😬)
Be wary of the Endo governed by TSH. My endo sadly retired now focused on Ft4 & Ft3 levels. He told me that once on thyroid treatment the thyroid hormone levels are what count, the TSH isn't relevant. He also considered my signs and symptoms.....something none of the medics seem to bother with anymore.
I'm treating her with caution but hopefully she can be enlightened, how else will they every learn, need to do what we can to change the current thinking even if it is just one Endo at a time 🤞
Good luck.....hope she's open to learning. 🤞🤞
I found taking T3 as only 2 doses caused kidney(adrenal) pain …..and single dose was even worse
For me…..3 doses per day is essential
Interesting.... I had only heard of T4 causing kidney pain... right I'm off to get my pill cutter, I found I was slumping between T3 doses but that was early days and one hit did the trick but as I'm better saturated now and on a slightly lower dose perhaps spreading out further is well worth a try 🤗
Any clever suggestions for carrying a small stash for the days when you get caught out? I wondered about a capsule necklace or a poison ring 🤣 as I'm just not a handbag kinda person, though not really a jewellery type either.... or perhaps I should stash some on the dogs or every coat pocket...
I use a weekly pill dispenser for levothyroxine
I take an odd dose ……125mcg 4 days and 112.5mcg 3 days ……half dose morning and half dose bedtime
And separate pill dispenser with at least 4 compartments (I use another weekly pill dispenser)
Cutting T3 into 1/4’s
Spare 1/4’s go in forth compartment
I take out in handbag if out for the day
But you can get tiny pill box for your pocket
Eg
navafresh.uk/products/opret...
These look neat, thanks... I have to avoid the bedtime slot as that is for progesterone and magnesium, so I'm slightly limited by that and generally aim for mid/ late afternoon which catches me out
Life just has a habit of getting in the way of this pill popping regime 😅
Found some similar pots amazon.co.uk/dp/B0BFQL1L8J/...
I find T3 at bedtime gives great sleep
I take magnesium 4 hours before bed
Interesting, but I don't think T3/T4 and progesterone mix well... though they work together? Need to revisit, had to take it a night as it made me punch drunk to start with!
try progesterone in middle of night?
That could be a go'er couldn't it, what else does magnesium have to avoid?
nothing
I'm not actually finding any reason to keep progesterone and T3/T4 apart... looking at BNF... perhaps I have been overzealous keeping them apart 🙄
you can’t take progesterone within 4 hours of levothyroxine or T3
I struggled to tolerate Levo, T3 and NDT when I first started taking thyroid hormones. I decided that T3 was the one I tolerated best, but it didn't actually make me well - nothing did at the time. I still felt dire. I did re-try NDT and Levo, alone and in combination with T3 from time to time over the years.
I have no proof of this but I am convinced that my long-term supplementation of iron (which I have now stopped) and my long-term supplementation of Holy Basil (which reduces cortisol - I think mine was over-range for a long time ) had the most effect on my tolerance of thyroid hormones. I decided to switch to Levo alone, for yet another experiment in 2020/2021 and this time I tolerated it. I still take Levo and have added T3, and I now feel better than I did during the time I was taking T3 only.
My own pet theory (about me)- and bear in mind I have no medical training... Suppose the body needs iron/ferritin for 100 different purposes. I think I've been low in iron and ferritin all my life. All that work and housekeeping that iron is required for in my body probably had a HUGE backlog. I took iron for about 7 years (and also did regular testing), and then one day a test showed that my ferritin had suddenly shot up to top of range so I gave it up. My ferritin levels have stayed above mid-range ever since - although it is dropping very slowly. In other words, I think I've more or less caught up with the housekeeping and work that iron is needed for. And because of that my body can now tolerate thyroid hormones.
I had a similar experience with melatonin. I couldn't tolerate it for a long time, but as my iron rose and my cortisol dropped I found out that I could tolerate melatonin for the first time. Previously melatonin would give me dreadful headaches, and if I took it for two or more nights on the trot it would make me almost suicidally depressed.
My experiences are obviously unique to me, and others shouldn't assume that the same things will happen to them. We all need to find out what we lack and repair the deficiency or shortfall if at all possible.
Thanks for the insight Bean, it is so good to hear others experiences, it helps us all feel our way along.
I think it is excellent advise, that you can't expect your body to cope well with new additions whilst it is still dealing with a deficiency in another area and we all have changing needs that need keeping an eye on
Do I need t3?
Results after T3/T4 trial...is this it?
T4/T3 combo fine tuning - what would you do next?
Low T4 still T3 improving
T4-only; T3-T4 Combo, T3-only or NDT? How do you know?
