New T3 prescription help please

[candi1]

After 3 years my endo finaly prescribed a trial of T3....but, as some have mentioned on here...it seems like they almost set you up to fail. What I mean by this is that I've been on Levo for 25+ years and the Endo has prescribed 12.5mcg twice daily, making it 25mcg a day !!! which (I may be mistaken) but sounds a bit high as a starting dose. What I have decided is to start with 2.5mcg once then twice a day and then titrate up slowly over several weeks....once I get up to 10mcg a day then drop the Levo down by 25mcg....100mcg down to 75. I got no advice on this at all from the Endo ....he just said to start the T3 and immediately drop the Levo ...Hmmmm.

I would be very gratefull to hear from anyone else that has found themselves in this situation and how they managed it....I am aware also that we are all slightly different and that dosages may affect us in different ways. My aim is to take the gentle aproach....my body does not like aggresive surprises.

Finally.....do I take the levo and T3 together or at different times of the day, may sound like a simple question but I cannot find the answer

Many thanks in advance to anyone that can advise me on this

[greygoose]

I really think they do set you up to fail. They don't want to prescribe T3, it terrifies them. And they're looking for a way out. By prescribing too high a starter dose, and making you ill, they can say, there you are, you see, I told you so, T3 is not for you! And then they can stop it.

2.5 mcg, on the other hand, is probably too low a starter dose. It's usually 5 mcg, and best taken all in one go because it's so small.

What is your FT4 level? 100 mcg is such a small dose that it probably doesn't need lowering at all. Endos believe that they have to reduce the levo when prescribing T3, no matter what! But I bet if you asked them why, they wouldn't be able to tell you. A lot of people need their FT4 quite high in the range even when taking T3, so reducing the dose automatically can be counter-productive (or is it another ruse...). So, wait until you've had your first blood test before reducing to see if you need to - taking T3 reduces FT4 levels, anyway.

[candi1 in reply to greygoose]

Thankyou greygoose....I've had good advice from you in the past, I will have to search for the last test results in the morning....not sure if they even included FT4 though...I will post results.

What you say certainly makes sense and I most definately trust what you say over and above the Endo. It honestly boggles my brain, these people are supposed to be 'experts' and they are supposed to have their patients best interests at heart.....my experience tells me otherwise !! I feel very lucky to have this forum to come to for good advice and support....thanks again.

Oh...and do I take both the Levo and T3 at the same time ??

[greygoose in reply to candi1]

You most certainly can take them both together, yes. It's entirely up to you when you take either of them. I would say when it's most convenient for you. It's all trial and error, so start out taking them together and see how it goes.

[candi1 in reply to greygoose]

Good morning.....to follow up from yesterday, I have found the results from my last tests done 29 Jan this year and are as follows....These bloods where taken first thing in the morning while still fasting, and before any meds....as advised on here

FT4....15.0 pmol/L

THS...0.93 munit/L

T3....4.1 pmol/L

Vit D 124 nmol/L

Once again, thanks for helping me to make sense of all this.......hopefully with the new T3 some of my brain fog will lift 🙂

[greygoose in reply to candi1]

Sorry, but we need the ranges for those results.

[candi1 in reply to greygoose]

Sorry

FT4....15.0 pmol/L. . . . 11.9 - 21.6

TSH...0.93 munit/L . . . 0.27 - 4.20

T3....4.1 pmol/L . . . 3.10 - 6.80

Vit D 124 nmol/L . . .51 - 280

[greygoose in reply to candi1]

FT4....15.0 pmol/L. . . . (11.9 - 21.6) 31.96%

T3....4.1 pmol/L . . . (3.10 - 6.80) ) 27.03%

You are very under-medicated there. Why didn't your endo just increase your levo rather than prescribe T3? That doesn't make much sense - especially as your conversion looks good, even though you don't have much T4 to convert.

[candi1 in reply to greygoose]

I cannot answer that....I've long stopped trying to fathom out his thinking. All I know is that he keeps repeating that all my levels are good !!!...my T3 levels over the last 3 years have been lower than 4.1..... all through 2020...in 2022 T3 ...3.2 pmol/L.....3.1 - 6.8.....only more recently have the levels gone up to 4.1. This led me to assume that I needed to have T3 and I have been nagging and whingeing at him ever since. Maybe he gave me the T3 to just keep me quiet, anyway I'm glad he did, maybe this new approach will yeild better results than I've felt or had in the prevoius 10 years.

Another reason for my wanting T3 is that I read somewhere...I think ,in the BTF guide to thyroid function tests that if the TSH and the T4 where low.....this was an indication of failure to convert properly. I am getting more and more confused.

I forgot to add......before, I was taking 125mcg Levo at the time my T3 was at the lower level of 3.2

[McPammy]

I started T3 alongside my usual levothyroxine dose of 75mcg a day. I was prescribed 5mcg T3 twice a day 8 hrs apart. That dose worked for me and still does 5 years on except I have lowered my T4 levo from 75 to 64mcg a day. I can lower t4 by the smallest margins as I’m prescribe levothyroxine in liquid form. My TSH is usually around 1.00, my T4 in the middle of the range and T3 top of the range now at 90% after taking my morning dose before the blood draw. So, 5mcg twice a day can lift your T3 level quite well. My t3 was only 8% now it’s 90%. I do and have felt great since starting T3. I’m a poor converter of t4 to the magical t3. I have the faulty gene DIO2. T3 has given me so much energy, I can now exercise with ease. I’m 66 soon and feel much younger than I ever did in my 50’s when I was grossly under medicated. My cholesterol has really improved, it’s magical if you can get your balance right for you

I aim to reflect a healthy persons thyroid blood results which is a TSH around 1.00 and in range t4 and t3 results with taking medications. Luckily for me my TSH never gets suppressed. I do feel it if it does in a negative way. And also importantly my endocrinologist never queries anything and happily prescribes my t3.

[arTistapple in reply to McPammy]

We have corresponded before on this McPammy. Can I just check, were you always on 75 mcg Levo before attempting T3? Or had you tried higher Levo and (if you did) obviously found that not OK for you?

[McPammy in reply to arTistapple]

I had been on higher doses over the 10 years previously on levothyroxine. I was over medicated mainly on t4. . I found 75mcg was enough and brought my blood results to the top of the range. At that point I was only converting 8% to T3. My private endocrinologist suggested leave T4 at 75mcg and add T3 5mcg twice a day. That brought my T3 to 90%. I lowered my T4 from 75 to 68 a couple of months after starting T3 as I felt something was too high. I settled and felt much better lowering the t4 to 68 a day but I also have to split my T4 34 then 34 later in the day. I feel splitting doses avoids spikes. I’ve never lowered my t3. Once I did think I needed more t3 but that was a mistake. I realised that after trying doing my bloods ‘with’ taking my T3. It was already 90% so I didn’t need any extra. It seems I don’t need much t4 or t3 to get my bloods to optimal point of their ranges for myself. And my TSH reflects this at being 1.09 (0.35-5.50).

[Clara9 in reply to McPammy]

May I ask what your levels of ft3 ft4 and TSH was when you were taking 75 and 5 twice a day? Did you split your dose then

[McPammy in reply to Clara9]

Sorry for late reply I needed to look back through my patients access.

75mcg levo and 5mcg T3 twice a day

t3 4.9 (3.7-6.0) without meds prior

T4 10.4 (7.86-14.40) without meds prior

TSH 0.46 (0.35-5.50)

This was April 2019. I’d just started about 2 months previous splitting my levo dose

As my TSH was pretty low my levels must go higher once meds taken. I now also get bloods tested with taking meds 2 hrs previous. My t3 jumps to about 5.6 or 5.7. When on no T3 it was only 3.9. T4 is roughly about the same in the middle of range.

T3 for me was life changing. I don’t know what went catastrophically wrong for myself. I’d been taking levothyroxine for over 10 years. My GP increased my dose as my TSH was too high. Next thing I couldn’t walk. Even when dose was lower back to 75 I still couldn’t walk. Within a couple of days of starting T3 I could walk again and boy have I walked since. I can’t stop walking, exercising, dancing. Now I feel 25 years younger. I also lost 4st without trying. My metabolic rate was now actually working. I always ate well and healthy options but it wasn’t getting burnt off.

[Clara9 in reply to McPammy]

Thank you! Do you have the results from before splitting levo?

[McPammy in reply to Clara9]

t4 14.2 at the top

TSH 5.37 far too high

T3 never tested at that point

I always needed t3

[Clara9 in reply to McPammy]

Thanks was this with the added or only t4? Do you have any results on same dose so you can see difference in levels on split vs not split dose?

[McPammy in reply to Clara9]

the above results are when on T4 only

I haven’t got the results you’re asking for. I started splitting T4 when I first started T3.

[Clara9 in reply to McPammy]

Thank you. What dose were the T4 only results above?

[McPammy in reply to Clara9]

75mcg

[arTistapple in reply to McPammy]

OK offhand I don’t think we clarified that before. My experience at 75 mcg was not good. Acquired pulsatile tinnitus which remains. Hence my jumping to 100 mcg perhaps too quickly, it just did not work anyway. SlowDragon has mentioned 75 mcg is sometimes a difficult dose. It’s a kind of transition dose (in some people) between your own hormone levels and the ones brought about by the medications taking over. I have seen others report they were unhappy on 75. Anyway, with experience I live and learn. Recent blood tests showed getting very close to top of range, even with tiny increase to 106.25 mcg. Now reduced to alternating days with 100 mcg but honestly apart from heart symptoms (SVT) almost disappearing (thankfully) I think I am worse, can’t get about etc. Anyway I am looking at your experience (newly) and thinking it could be mine. I am due a blood test in about two weeks (might wait a bit longer) and will make another decision then AND I have an NHS endo appointment coming up in a month too. So still let’s to think about. Very interesting your experience. I got caught up in increasing when really it’s not proved that great for me. Thanks for getting back to me McPammy.

[candi1 in reply to arTistapple]

Thank you all so much for sharing your experiences....it is such a help while trying to navigate the unhelpfull (in most cases) NHS system we have to battle with in the UK.

I've been hypo for decades and been diagnosed with just about everything you can think of.....rather than deal properly with the one big issue that I do have. Been seeing this Endo for four years and it's taken till last week to finally and rather begrudgingly get a prescription for T3.....Since then I've come on here to get proper advice on how much, when, and how often to take it......Endo just said to start on 25mcg a day and drop Levo by 25mcg....Hmmm !!!

[arTistapple in reply to candi1]

Yes. I was speaking to someone recently very much more articulate than me. She described this as ‘unexamined’. Anything, is a more attractive a route for GPs and endos than treating hypothyroidism itself. We constantly hear “it must be something else”. From now on I am going to ask what the something else is and what makes them think that, rather than they could be completely wrong about thyroid issues!

Unexamined is a brilliant word and things are not going to improve for this extremely common condition until it is indeed examined!! This means questioning the Holy Grail of TSH and making some effort to listen to patients.

I have been reading absolutely loads of research just the last few days. TSH is NOT being examined and therefore leading to very bad (and no doubt expensive) science underpinning thyroid treatment. Now I understand what the likes of Bianco is up against. How can it be good science if it’s very basic premise is never re-examined?

[Pixielula]

hi I said this before on here many years ago I was on 250mcg levo my doctor prescribed 60mcg liothyronine and told me to stop t4 the next day and start the 60mcg t3 so that’s what I did. Apart from feeling like someone had plucked me out of a vat full of thick treacle and set me free I had no ill effects what so ever! I have never taken levo since that was almost 20 years ago!

[candi1 in reply to Pixielula]

WOW...that certainly shows how we are all so different....that quick change and the amounts would have terrified me.....but I'm glad it worked for you and thanks for posting....very interesting 🙂

[arTistapple in reply to Pixielula]

Again WOW! Pot luck or real knowledge on the part of the practitioner???

[Pixielula]

I think my body was just screaming for T3, so when I did the switch every cell just sucked it up and got on with its job! The transformation was virtually instant for me. It was very much a life changing experience. But I don’t think my GP had any idea what she was doing she had never heard of T3, my brother had been put on it a few months earlier and I was desperately struggling with symptoms even though on very high dose t4 so I suggested it to her and she had to look it up, it gave me my life back!!

[Pixielula]

my own thought are that people who really need t3 are bad converters ( I know this was the case for me) so by the time I got it I was so deficient that even a dose of 60mcg didn’t give me any adverse effects. If my T3 was any way near the normal range it may have been a different story. These are only my own thoughts on the matter and I have no scientific evidence to back it up so always interested in what other people think!