Hi all
Thank you for helping me prepare for my Endo appointment. Really helpful!
The upshot is that I am going to be having a combo T4/T3 trial. 75 Levo/15 Lio. I understand that many people split the dose (which is what the Endo has said to do - 3 x 5) but others I see take the lot with Levo in the morning?
What are people’s experiences of these different approaches please?
I’m just trying to figure out if I have the wherewithal to organise myself!
Thank you
Jo
You will need to split the dose initially. Wether you need to eventually is trial and error what suits each person
Do you take levothyroxine waking or bedtime?
Has dose levothyroxine been reduced, and by how much
Hi SlowDragon - thank you. Yes Levo reduced from 100 to 75. Okay thank you. So I take 5 lio at 4.45 am with Levo then take next 2 doses during the day…I thought he said in a window of 8 hours but am not sure I heard that correctly? Maybe he said 12 which would make more sense. Taking it late in the day - would that make me more awake at bedtime though? 😊 thank you
I don’t understand how one dose would work, as everything I’ve read says it’s short lived. 🤷🏼♀️
The half-life of T3 in the blood is 24 hours, but what gets into the cells stays there for about three days. So, it all depends on your definition of 'short-lived'. Compared to levo, it is short lived. But, compared to aspirin, it isn't. Taking it all in one go works, I can assure you. 
Wow, I thought it was just 7-8 hours! I’m now sorely tempted to try taking it all in one go. Thank you
You're welcome.
I follow Dr John Lowe's advice and he was a scientist/doctor and a specialist in the use of T3 which he took himself.
He took a high dose as he was 'thyroid hormone resistant' - in the middle of the night when he awoke so that nothing could interfere with the uptake of T3.
I follow his advice which was to take one daily dose with one glass of water and wait an hour before eating. I didn't take it during the night but in day time. He stated that one daily dose (with a glass of water) lasted for up to three days. I tried this by taking T3 dose on day one, taking none on day two or day three and I still felt fine. I only did this trial once and swallow my T3 when I awake with one glass of water and wait an hour before I eat.
Dr L took his T3 in the middle of the night when he awoke to go to the toilet.
That’s so interesting. So why do so many endos say to split it, I wonder?
Endocrinologists aren't scientists so they have to absorb what they've been taught. Many 'assume' T3 should be split because it has a 'half-life'and because they're not scientists like Dr Lowe they do not understand much about how our bodies function optimally when hypothyroid. The following is also by another of the 'old school' of training doctors.
Dr Lowe was a very humane man and did not like to see suffering, especially when it was unnecessary due to either not being diagnosed or still not feeling well on levothyroxine. He also stated that the Endocrinology in the USA was paid to prescribe levo instead of NDTs. Dr L was a scientist/researcher and doctor.
He would never prescribe levothyroxine as he said that Endos/doctors in the USA were paid to prescribe it and instead of the very original thyroid hormone replacements which is called NDT for short (natural dessicated thyroid hormones) made from animals' thyroid glands which contain all of the hormones a healthy gland would do. From 1892 this was first invented and saved lives from then on as people died an awful death previously. No blood tests were available in 1892 so how much money would the NHS saved if we were diagnosed without blood tests?
NDT has been withdrawn in the UK due to False Statements!!!! being made about it and it was done without any notice or warning for patients.
They also did the same for T3. Obviously it was due to cost alone without any care for the suffering patients.
I think those who made these decisions should get the sack as people who recover on levothyroxine will not be on this forum looking for help to feel much better.
NDT also contains all of the hormones our healthy gland would do. Imagine in 1892 getting your life saved by being given NDT according to your clinical symptoms, i.e. just signs/symptoms and a trial of NDT. If NDT doesn't work for the person, they have the alternative of T3 alone (liothyronine). Again withdrawn due to exorbitant cost when it can be sourced from abroad at a fraction of the price.
I did switch from Levo to NDT for about 5 years, but because of the problems with WP Thyroid and I believe other brands too being reformulated or different production locations, and the cost buying it from the US, I gave up and my endo happily prescribed Levo plus t3.
Without meaning to sound like a Marxist, big pharma is clearly run by capitalist pigs making a good old profit from people’s misery. I bet it all comes down to a few good ole boy handshakes during a game of golf somewhere…
Big Pharma only wants to treat the symptoms not cure the patients so as to keep the customers coming back- and they are the ones with marxist tendencies not the other way around.
Yes, I’d concur with that, having gone without T3 for 7 days, it took 48hrs for me to feel it and from the 3rd day onwards it felt like I was slowly winding down. I describe it like a clock needing wound up, I worked but I was getting more and more behind as each day came and went.
Yikes! Did you go away for a week and forget to take your medication with you? Not a position I would fancy being in. How long did it take you to regain normality when you started up again?
It was just a bit of fannying about really. And getting it from the new pharmacy took longer. I was back to normal within a day of receiving. I seem to be one of those straight forward patients and don’t need to tweak or worry too much. All that happened in the last 4days was that I felt a bit low, had afternoon naps and slept for 10hrs instead of 7 at night.
These symptoms are so mild in comparison to my pre T3 days that I recovered quickly 🤗
Do you know what blood levels you need of T3 to feel good? I'm on 25mcg now with Levo and feel no better than before I started it if I'm honest. It drastically lowered my T4 and hasn't raised my FT3 much. So fed up of having no energy.
@FancyPants54. It varies. My last blood test in May, my FT4 was 35% through range and my FT3 63% through range. My Endo had told me to lower my Levo because my Christmas bloods were 63 and 83% through range and he worried I was taking too much. I reluctantly agreed and after 6wks I was not happy. Also when I was on the lower Levo I got an inner ear problem which left me with vertigo and surrealness. So I put it back up.
Again in May he said he was concerned about my extremely low TSH and osteoporosis and AFib. This time I politely declined his counsel that I should lower Levo, stating that I was extremely optimal. This back and forth dialogue delayed my prescription (also the fact that I didn’t start the dialogue sooner, allowing time for fannying about) and I was left T3 less for 7 days.
Anyhoo, I feel good and I’ll get bloods done in Sept and I’m guessing those results will be in the upper range again.
That's good. Taking T3 has dropped my FT4 down to just 37% of range with FT3 of 48%. I tried to add in another 25mcg Levo a day but after about 10 days I felt horrible and stopped. Now I've increased by Lio to 25mcg and feel no better. In fact, more depressed I think. Also very swollen feet. I've never been comfortable with Levo over 125mcg a day. But that has given me wildly different readings from 75% of range, several in the 60's and one in the 40's. I don't know what to do about it. It's rubbish. I can't understand why I can be taking the same amount of tablet every day and get such huge fluctuations.
Adding 25mcg per day is probably too much. Look at your weekly intake. For example mine is 950 per week. Which works out at 135mcg per day. But I do 150X5 and 100x2. Raise your weekly intake, not your daily. Maybe you only need 25 -50mcg added each week. 🤷♀️ 25x7 is 175mcg per week but what if you only need 100mcg per week added? DYSWIM?
Tweak but give it a full 6wks to settle before you make changes (unless ofcourse you get some extreme reactions, then ofcourse cease and rethink)
You could well be right. I didn't think of that at the time. 25mcg seemed so little when my FT4 was so low. When I decided I needed to back-track from that adventure, I had a day with no Levo to let the level sink a bit. I took T3 only. That was a much better day. But I've tried T3 only in the past and it didn't work either so I guess that was a nice one-off.
I'm disappointed that adding in another 5mcg T3 a day hasn't helped either. At least no adverse effects other than a slight right in BP, but very slight and it's only been a week. I'd best stay like this as I see my Endo soon and want to do a quick test just before I do that to see where I am. I don't understand why I've lost so much hair though, and continue to do so. It's so alarming. It started when I tried reducing my Levo, to see if I needed less with more T3. But it's carried on despite coming back up to where I was and adding more T3. Oh well, if I have to be bald, I'll be bald. Hopefully it will be temporary.
If I don't take my daily dose my body starts to malfunction.
greygoose , when you first started to take your T3 all in one go, were you changing that from a split dose?
I currently take a split dose. But I would like to move towards taking it all at once in the morning at some point soon. I currently take 15mcg T3 with 125 Levo when I get up and then another 10mcg T3 at 3pm. Not sure if I should work towards the single dose by taking 20 T3 in the morning and 5 at 3pm for a while and then move it all to morning or if that's not necessary. What do you think? I'm quite sensitive to changes it seems, but not desperately so.
Not exactly, no. I was taking NDT in a split dose. Then started taking the NDT all in one go. So, when I changed to T3 only, I carried on with the all-in-one-go. But, I can't remember all the details, it was a long time ago.
Maybe you might find the following to be helpful as Dr John Lowe was also a scientist/researcher/doctor/expert in the use of T3.
Personally I agree and have to split as 3 doses at 8 hour intervals
I was originally told to take mine in two well-spaced-out doses, but find it easier to take it with my levo first thing. So agree absolutely with SlowDragon : start with one 5 mcg dose anyway for the first week or so, and build up slowly adding another 5 mcg every week or two until you're on the full 15 mcg - then see what's best for you. I'm too disorganised to do mine in 3 doses - could barely manage 2!
And if they're 5 mcg tablets, it's all quite easy, but if you are quartering 20 mcg tablets, remember it's always best to finish one completely before cutting up the next, and you may need to lick up the crumbs if the tablet doesn't split smoothly x
I’m on 100mcg Levo and initially was put on 20mcg liothyronine but this has been reduced to 15mcg. I split it into 3 doses: 6am with my Levo, 2pm and 9pm. Tbh, I’m not sure if I should take a nighttime dose, as I wake a lot during the night. I may experiment with taking 5mcg at 6am and 10mcg at 2pm. I’d also like to take magnesium at night but can’t because of the nighttime dose.
I found when taking Liothyronine all at once in the morning I would have a major slump in the afternoon so was advised to split the dose. I split it into Three or four doses spread evenly through the day but my last dose is always 6pm which gets me through the evening and then I sleep well at night. I set my alarm on my phone to go off at 6am 10am 2pm 6pm when it is four doses (or 6am 12 noon and 6pm when it was three doses)
I found I felt well all day with no slumps and slept well at night
I initially split my 10 mcg by taking 5 in the morning and 5 at bedtime. The endo was dismayed and wondered how I was sleeping so well… When I told him I was experiencing a massive slump in the afternoon his response was “I’m not surprised - take the second dose around 2pm” so that is - sort of - what I do. I sometimes forget and take it at 3 or 4, which all works well enough. But it staves off that slump.
My endo increased to 15 mcg at one point and had me taking 10 mcg in the morning, which was quite nice until it banjaxed my fT4. Someone else’s endo said that taking a little more at once means it is more likely to get into the tissue.
As others have said, it’s a completely personal thing.
On one hand, I would like to take mine in one go as life is easier that way. But then I have a theory - which probably wouldn’t hold up under an endocrinologist’s scrutiny - that taking a massive dose in one go is more likely to send the TSH into free fall. But I totally made that one up, albeit based on my reading of a scientific journal where the writers suggested it could be why TSH gets low on T3 generally: because the body is taking a bit hit of T3 which wouldn’t happen naturally - another reason why we need a slow-release T3 preparation in the future, perhaps. They didn’t discuss whether the amount taken in one go would be relevant… I put 2 and 2 together there and have likely come up with 31. The other potential reason not to take it in one go is that you’re likely to have fT3 way above the reference range after. It makes sense that by splitting it, you’re not sending fT3 through the roof in one massive peak.
All that having been said, once I get to my correct dose, I probably will experiment with taking the whole lot in the morning because I’m a dozy cow who likes to keep things simple!
I take 20mcg. 10mcg at around 7am and then 10mcg and Levo at around 10pm. Vits and minerals about 6-7pm.
I do not split T3 and take one daily dose when I awake with one Full Glass of Water and wait an hour before I eat.
This method was advised by a TUK scientific adviser who stated that a one daily dose will saturated all of our T3 receptor cells and the 'effect' will last between one to three days.
He himself, Dr John Lowe, was an expert in the use of T3 and he also took his dose in the middle of the night so that nothing interfered with its uptake.
I have an odd question! How do you take your T3? I have just managed to get mine back on prescription but the instructions state for a 10mcg dose dissolve a 20mcg tablet in 20 ml of water (takes ages to dissolve) and draw up 10 ml to take and throw the rest away.
I have never heard of dissolving in water. I think that sounds like a 'made up' statement from a person who's no idea what or how thyroid hormones actually work. To throw away half of the dose sounds to me that the person who has suggested this needs to get both his Free T4 and Free T3 checked as his statement has something missing? i.e. it's a nonsense statement.
I take mine with one glass of water and wait an hour before I eat.
According to Dr John Lowe who was an Adviser to TUK before his accidental death stated that one daily dose (he took T3 himself in the middle of the night) of T3 saturated all of our T3 receptor cells which then sends out 'waves' for between one to three days. He was also a scientist/researcher and doctor.
I trialled this by taking one dose T3, taking none on day two or day three - and I still felt well and proved that one dose lasts longer than one would think.
Sorry to all who replied to me but I missed the comments.I really couldn't believe it when the hospital told me but it tells you to do that in patient leaflet. I am splitting them as I'm not willing to get up an extra hour earlier just to dissolve a flipping tablet! It is also extremely inconvenient when you are out and about. If I'm out I just swallow (or chew) and eat much later.
I did notice the price of them seems to have gone down but if they are advising (and people are doing it) dissolving and throwing away then they are still keeping hteir excessive profits on it.
My endo will do a prescription directly to the hopsital pharmacy every 3 months as CCG/GP probably won't do it.
Dr John Lowe was an expert in the use of T3. He was also a scientist and researcher and was an Adviser to Thyroiduk.org.uk before his accidental death.
He stated that we should swallow T3 with one glass of water and he took his dose with one glass of water when he went to the toilet in the middle of the night. Nothing else interfered with T3's uptake. He also said that the one daily dose saturated all of our millions of T3 receptor cells and it then sent out 'waves' throughout the 24 hours of the day and could last up to three days. I trialled that myself by taking one dose, took none on day 2 or 3 and my first dose did last for 3 days. I only did this once and take mine when I get up with one glass of water and wait an hour before I eat.
Certainly don't do that! It's a conspiracy by the manufacturers to make you (or the NHS) buy more than you need ... and as you've found out, they don't dissolve well anyway.
Just cut in half with a pill cutter or scalpel or craft-knife and take each half
But if I were you, I'd still cash in at least one "extra" prescription so you've got plenty of "spare" (in case you need it later on) - but make sure you always use the oldest ones first x
Anyone who suggests throwing dissolved T3 away, presumably down the sink, should ask the local water board what excess T3 does in the water system. Besides being an expensive exercise, patients are advised to return excess medications to their pharmacy for safe disposal. It makes you wonder where these people keep their brains - definitely not in their heads 🤔
Definitely don’t dissolve in water
a) it’s a waste (invented by pharmaceutical company who suddenly found most of the NHS patients were having T3 prescription stopped after same pharmaceutical company put the price up by 6000%
b) T3 definitely shouldn’t be tipped down drain
Thank you everyone! My question (and more!) has been answered. Really appreciate this as I would have waded into 15 mg immediately. Just taking 5mg with 25 reduction in Levo. This my be in my head but I think I feel the benefit already on day 3. I had the best sleep last night without having to need 10 hours (only needed 7!), and I have much reduced foot pain this morning… although I’m a bit wary of getting too excited after the whole ‘better!…oh worse again’ rollercoaster of increasing Levo experience. Thank you again 😊
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