My new endo has started me on combi therapy (Yippee!), but proposes I take all of 20mcg of lio once a day and only reduce my levo by 25mcg from 175mcg to 150mcg.
Is this as crazy as I think it is? I think I have read a wonderful posts on here that suggest introducing 5mcg of lio at a time, a holding steady for at least one week. Only adding more lots of 5mcg at different times throughout the day.
I put it to her that lio is equivalent to 4 x its weigh in levo, and she said "take it as I say". Do you think that she is trying to have my trial fail, or is she just as ignorant as most endos? Am I correct, or is it only that the healthy thyroid produces 80% thyroxine to 20% thyronine, and some different ratio for the synthetics via the gut?
Why do CCG guidelines say a L-T3/L-T4 ratio of between 1:13 and 1:20? Presumably cost cutting and ignorance, or am I being too cynical?
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She is like most endos poorly educated on thyroid issues.Week 1 reduce your levo
Week 2 add 5mcg lio T3
Week 3 add another 5mcg lio either to first dose or as a 2nd dose.
Now you might want to stop there and wait 6 weeks and do bloods. Endos think that the dose of lio has to be 20mcg but some of us don't need that much.
If you don't stop, you add 5mcg lio every 2 weeks until you reach your 20mcg.
My endo wanted me to drop 50mcg levo and add in 20mcg lio. she was surprised when I did it gradually and not overnight as she suggested! Luckily I had known her for a long time and she had given me a trial of 6 months to a year so I had time to do my own thing as it were.
Anyway I worked my way to her doses and felt awful. I have slowly altered my doses and am on 100mcg levo and 7.5mcg lio.
I guess that means you get 5mcg tabs and halve some. I am not looking forward to trying to quarter 20mcg tabs, but eighths would seem to beggar belief.
I started by quartering tablets and found it ok with a pill cutter.The endo helpfully then decided that her prescription was 10mcg twice daily. Because she wrote her prescription that way she insisted I be issued with 10mcg tablets even though it was dearer for the NHS. Bonus! Top marks to endo.
Now that they think I take 10mcg total per day as 2 x 5mcg, the GP surgery (who have taken on the prescription) insists on me getting 5mcg tablets. Of course I am not telling them I reduced my dose as FT3 was just over top of range.
Yes bit of a puzzler. On 100mcg of levo and 15mcg lio I was ft4 43% ft3 74%. A year and several dose changes later plus the ranges have changed I am okayish on 100mcg levo and 7.5mcg lio. Ft4 45% ft3 105% on 10mcg lio it was 110%.I can't explain why my ft3 is higher on half the lio dose.
It must be coincidence that it happened with tests after the ranges changed.
I am awaiting phone consultation with useless endo and will ask her. Also due to get latest blood results from her so will see.
Do you think that she is trying to have my trial fail
Yes.
is she just as ignorant as most endos
Probably. Or she is a sadist.
Why do CCG guidelines say a L-T3/L-T4 ratio of between 1:13 and 1:20?
This is because of a poor interpretation of a research paper from the 1990s. The author was someone called Pilo, and his paper, and the problems it has caused, was discussed here :
Much more complicated than I had been led to believe. Good to know if somewhat bewildering.
Never mind a 6 month trial, I estimate that I will probably need to live to be as old as Methuselah to establish my own preferred ratio, and I am not sure I will know when it is optimal - my brain hurts!
I only started taking T4 and T3 together fairly recently. Previously I had been on T3-only most of the time, with the occasional foray into trying NDT. But in the early days (when I first took T4 only, as standard) I was very short of nutrients and couldn't tolerate T4 in any form. That in itself is a bit weird, because most doctors think that everyone can tolerate T4, and that T3 is dangerous and intolerable. And many patients do well on T4 alone, and are terrified of T3. But I only tolerated T3.
Over the last few years I have been gradually improving nutrients (iron is my bugbear), and changing my diet to be lower carb with higher protein. Early last year I felt very unwell and decided to try T4 and T3 again. To my surprise I tolerated the T4 very well, whereas 7 years previously it had made me feel like death warmed up.
I started on 50mcg T4 and 0 T3, tested, then raised to 75mcg, then tested. At 75mcg my results were not too bad but my conversion was poor. So T4 was reasonably good (a bit too low, but not bad), and T3 was definitely too low. Then I deliberately raised my T4 another 25mcg to 100mcg. I knew it would be too much and my Free T4 would go over range (which it did), and the experiment made me feel quite unwell, but having done this once I know I will never have to do it again. But I wanted to know what my upper limit was for T4, and wondered what it would do to my T3. Much to my amazement my Free T3 actually went down with too much T4.
So, I switched to alternating 75mcg and 100mcg T4 and added 12.5mcg T3. (Don't forget that I'd spent years on T3-only and knew I had no problems with it, but this wouldn't apply to many people). It turned out to be a really good dose for me, although I did later drop my T4 to 75mcg every day, and kept my T3 at 12.5mcg.
In the end it took me about 6 - 9 months to find the dose I felt I needed, but I did have the experience of my own experiments over the previous few years. It would have taken a lot longer if I had needed 250mcg Levo and 40mcg T3 per day!
I think that people have been so mucked about by doctors and have been taught to be terrified of thyroid hormones. Doctors are frightened of them too. And they make huge, inappropriate changes in thyroid hormone doses. It isn't unusual for doctors to drop Levo by 50mcg per day just because the patient's TSH is low in range or under range. And some doctors have tried to kill their patients by taking their thyroid hormones off them altogether, just because they are scared of low TSH.
If you are only going to be given a 6 month trial of T3 then I agree you are going to struggle to find the right ratio.
Oh! and she tried to tell me that Synthroid is a (synthesis) combi tab. Not straight (synthetic) T4 - (more synth confusion than trying to overdub Rick Wakeman onto Ultravox). Could be a one-off mistake or could be an example of stupid. Sadist remains to be seen.
She did send me away with a prescription form for L-T3 that I cannot yet obtain locally, rather than send me to the hospital pharmacy.
I had better not be too critical, she did prescribe it, which is more than can be said of the weasels on my side of town. That in my book indicates a lady with some serious bottle.
Next time you see your endo show her the Patient Information Leaflet from your Synthroid. It is bound to say that it is 100% levothyroxine (T4) without any liothyronine (T3) in it.
I emailed her after I got home and verified what I knew already, that it is simply a brand of levo. tbh I could not be 100% sure, thinking on the hoof, which was which out of Synthroid and Cytomel - them being yankee-doodle dandy kit an'all, but I knew they are both mono.
There is only so much educating that one can do in a consultant's consulting room before one gets one's sweaty little mitt on a prescription form - Hallelujah!
I hope that I have not shot myself in the foot by correcting her. What was it that Bono sang, "Your dangerous, 'cause your honest". Wish me luck. I will let the community know how (or if) the trial continues.
As others have said, do as suggested here and build up to the whole tablet slowly [and feel free to stop if you feel great on a fraction of a tablet]. but get the next prescription as if you had been on the "right" dose from the off, so you build up a little "spare" [always useful to have]
I was started on - what seems now with hindsight - an astonishing 40 mcg of lio - and like a good little girl took it ... I must have the gut of a rhino becuase - very much to the endo's surprise, six weeks later I reported back that I was feeling great on it - but he promptly halved the dose and I'm just as happy on 20 mcg. BUT the initial (over)dose has left me with (permanent) vitiligo on my fingers and face, which is annoying, and I doubt my TSH will ever crawl back up from its right at the bottom of the scale position, which is also annoying, given how TSH-obsessed both GPs and endos are
Wow! Sorry to hear about the vitiligo. From my experience on T4 only, and reading on the forum, it is being on any significant amount that goes from "supplementation" to replacement, that keeps our TSH suppressed. However, you would probably know better than me if your feedback loop has been permanently damaged by that massive initially amount of T3.
At least my endo is not TSH-obsessed, she is adamant, like me, that you measure FT3 to get FT3. In fact, she even said she will not order TSH or FT4 as they don't tell her anything. Which is weird and worrying. TSH will only tells us that we are on replacement, and it will be rock-bottom (typically 0.00*). I would have thought it still very important to keep an eye on FT4. She could be right, since T4 is a supposedly inert, storage form, but I think that a patient's ability to convert, may fluctuate, and having a massive unknown reservoir of FT4 could be extremely disconcerting, if not dangerous. (A bit like trying to balance a bicycle with your rhino on the luggage rack)
I am unsure whether upping my L-T4 enables me to convert more, or if my converting ability is plain maxed out. I guess it won't be such an important question now I am going onto combi.
"At least my endo is not TSH-obsessed, she is adamant, like me, that you measure FT3 to get FT3. In fact, she even said she will not order TSH or FT4 as they don't tell her anything. Which is weird and worrying. TSH will only tells us that we are on replacement, and it will be rock-bottom (typically 0.00*). I would have thought it still very important to keep an eye on FT4. She could be right, since T4 is a supposedly inert, storage form, but I think that a patient's ability to convert, may fluctuate, and having a massive unknown reservoir of FT4 could be extremely disconcerting, if not dangerous. (A bit like trying to balance a bicycle with your rhino on the luggage rack)"
I am on T3 only, but am in similar position. My endo is nice and while prepared to support T3 only treatment, he is absolutely terrified of it, especially the supressed TSH which he doesn't seem to understand and is very worried about atrial fibrillation and osteoporosis. At my most recent appointment, much to my amazement, (I only found out afterwards when I saw rept he sent to GP) he only tested FT3 and TSH. I couldn't understand why he didn't test FT4 at least to see if my thyroid was producing any.
Yes, it's odd the way they get so TSH-obsessed. Surely the active hormone FT3 is the one to look at to see if it is getting high as this might lead to adverse stuff like AF or osteoporosis. I have serious doubts that even over-treatment CAUSES OP I think it is a COINCIDENCE in many older women who have OP and a thyroid condition, either hyperthyroidism or a high level of thyroid hormones as a result of treatment for hypothyroidism. Doctors assume that the high levels of thyroid hormones cause the OP and not the older women's menopausal status.
Also odd how TSH seems to dive for the cracks between the floorboards once we are on sufficient replacement to feel well. That feeling well is usually only achieved by getting T3 and T4 into the upper parts of the ranges. This is very well understood to be the case on this forum, even if we are not sure why this is the case. It is a great pity that the endos, who one might think should be explaining this, are running scared of low TSH, AF and the, probably unconnected, OP.
Couldn't agree with you more, especially when TSH is such a flawed test in so many ways as so many things can throw it off [time of day taken etc] and so many other factors [like iron status] can impact it and yet endos and doctors have elevated it to the corner stone of whether someone gets treated and the way in which their treatment should progress. Sigh. I'd still like to know what is going on with my FT4 though.
Before considering adding T3 are your vitamin levels optimal
What are most recent results for vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
ALWAYS test thyroid as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Is this how you do your tests
What were most recent thyroid results
What is reason you’re hypothyroid, thyroidectomy, Hashimoto’s, Graves?
I have been remonstrating with my GP about FFB12D to no avail he fobbed me off in the direction of the endo. I saw the endo yesterday and could not discover whether her panel included any of the magical quartet, FFB12D. I hope to discover when she writes to GP and hopefully copies me in, or I will contact her to ask.
I take a bogo multivitamin, when I remember to as I try to avoid taking it with levo in the morning.
I test early morning, 9am, fasting and leave off taking levo till after.
Endo has said to take T3 4-6hrs before test in 8-10weeks time. I believe this should be 8-12hrs. Do you think that she is trying to fail my trial to save the NHS money? She has also told me to take all of a 20mcg T3 tab once a day and only reduce my T4 from 175 to 150mcg.
Do you think that this is ignorance or sabotage? Probably not a fair or useful question, but what would you advise?
I shall not be following her dosing advice, I shall be following the advice given to me above.
I am having trouble laying my hands on latest or previous results. But from memory, previous was FT4 - 23.0 well above top of range, FT3 a bit below whole day average despite being taken at 9am. Latest results on a slightly reduced dose due to lots of waking fretful, FT4 was about top of range and FT3 a smidge further below average.
From this and other results, I conclude that I am a poor converter (Not a diagnosis by a doctor). Sorry, I know this is all a bit vague without the exact numbers, lab ranges and exact doses, but that is how it is after 45yrs of being crippled. Hopefully, things will improve as the combi trial progresses.
I have probably been hypo since 1976, in 1987 I was given the non-diagnosis of PVFS/ME/CFS, but was only diagnosed and treated for hypothyroidism in 2005/2006. I think that I was once tested for antibodies which came back as present but low. I have never been formally diagnosed as Hashi's, but think that I probably have had it and it has done damage, but lately it is low, hence low antibodies. Does that make sense?
Endo has said to take T3 4-6hrs before test in 8-10weeks time. I believe this should be 8-12hrs. Do you think that she is trying to fail my trial to save the NHS money? She has also told me to take all of a 20mcg T3 tab once a day and only reduce my T4 from 175 to 150mcg.
....
Do you think that she is trying to fail my trial to save the NHS money?
Yes.
She has also told me to take all of a 20mcg T3 tab once a day
This would be too much for many patients who had never taken T3 before, and would be too much for many people who do take it (e.g. me - I take 12.5mcg per day.)
I am on 175mcg levo I struggle to get the same brand. I changed pharmacy after the last one played a significant part in getting me thrown out of my GP practice of 35yrs.
I have relatively recently come to this wonderful community, and only more recently started to investigate how different brands affect me. I had a change to Mercury as part of my dose and it seemed very poorly absorbed. It could have been some other life circumstance or change of season that caused me to need more, but I could not identify anything other than the move to Mercury.
Boots are fairly unhelpful, just yesterday I took them my treasured ,shiny, new prescription for lio and explain that I won't accept Advanz - the monopolists of 10 out of the last 14yrs. I will not accept Teva as their levo fillers disagree with so many. Do you know whether Teva use the same fillers and fixatives in their lio as their levo?
They ordered Alliance or Accord and tried to supply Teva today, which I rejected and asked for an explanation of who goofed, the manager who I dealt with yesterday, or the supplier who may have inflicted a substitution and may or may not have been told Teva is unacceptable. I am going back tomorrow afternoon to hopefully collect Alliance or Accord but I won't be holding my breath, more likely biting my tongue. - Do you just love this knit your own healthcare?
Thanks for the info that Mercury is Advanz. Things change so fast it is not 4 yrs since Concordia changed its name to Advanz.
What of Alliance, I believe that they are a joint company with Boots. Do they manufacture T3 20mcg or buy it in from one of the three and put their name on it?
What of Accord are they a new licencee, or perhaps Boots are giving me false info?
Good to know that Teva T3 does not contain the troublesome mannitol. So I sent it back on grounds of caution and need not have done - Doh!
If I have already wrongly rejected Teva and there are only 3 players, it is a 50% chance that they offer me Mercury today. However, on Weds they were calling that Advanz and I rejected it. So, it could be Morningside, we reckon?
I wrote this for someone else earlier today. You might find it helpful :
Take quarter of a tablet every day with your dose of Levo.
Assuming there are no ill effects and you adapt to the pills, after a couple of weeks, add another quarter of a tablet about 6 - 8 hours after (or before if you take thyroid hormones at night) your first dose.
Depending on your response to T3 you might find half a tablet daily is enough. But if you need more, after a couple of weeks start taking half a tablet with your Levo and keep taking the quarter tablet separately.
Keep doing this... adding quarter of a tablet after two weeks, but after you reach a whole tablet you need to stop increasing for 8 weeks and then do a private test which includes Free T4 and Free T3. Post your results on the forum and ask for feedback. Depending on how close to optimal you are and how you are feeling, you may have too stick to adjusting dose up or down by no more than quarter of a tablet from that point onward.
Some general comments...
1) To cut tablets, some people use pill cutters which you can buy easily from a pharmacy or online. Others prefer a scalpel or hobby knife. Don't buy knives with funny-shaped blades. Many scalpels come with spare blades which is useful. Something like this might be suitable :
2) Some people split their dose of T3 into 2, 3 or 4 doses. Some people take it all at once. This is something that we all have to experiment with for ourselves, and what is true at the beginning may change with time. In the early days of me taking T3 I had to split it. Then over a period of several years (I struggled a lot with iron) I improved my nutrient levels. Then I discovered - hey presto - that I could tolerate T3 all in one go with T4.
3) Some people take T3 immediately before settling down to sleep and they find it helps them to get a good night's sleep. Some people hate taking T3 at bedtime because they say it keeps them awake. Again, it is up to you to experiment to make the most use of your T3 to your own advantage.
4) Please note that taking T3 will usually lower TSH, which upsets doctors. Avoid them as much as you can. Ask for advice about what to do if you are forced to see a doctor about testing. You may end up having to treat yourself with both T4 and T3 if your doctor gets too excitable about your TSH.
5) Please note that the body absorbs less(?) or excretes more (?) T4 when it has adequate amounts of T3, so your T4 level will drop. I don't think you need to alter your T4 dose when you start T3, but it may be necessary later.
6) Never change both T4 and T3 at the same time. If it backfires you won't know what caused the problem.
7) Please note that T3 (in amounts that people usually need it) is not dangerous.
8) Some people get palpitations when they start T3, but the body does adjust given time. Quarter of a tablet of T3 won't last very long in the blood (it gets absorbed by the cells.) When it "runs out" in the blood some people get palpitations again. This usually only lasts a short time, then it disappears (until the next quarter of a tablet). But over time the body adjusts and speeding up of the heart or palpitations doesn't happen at all.
Hello @Humanbean, I have a strange thing going on and yes, I am afraid of T3. Doctors have scared me. I live with atrial fibrillation all the time too. I'm currently reading a book by a US doctor who claims we need tiny doses of T3 with T4 and makes up slow release capsules for his patients. But the dose level per day is less than 2mcg I think. That's freaking me out.
I started T3 in November last year. I started at 10mcg a day and I didn't lower my T4 because it wasn't high (Endo told me too - I ignored that bit). But apart from the first few days when I had some energy and excitement back briefly, I've just seemingly got worse over time. My results are on my profile if you are interested. But the more T3 I take the lower my T4 goes until now it's frankly ridiculously low and the FT3 has barely moved. I have now increased to 30mcg T3 a day with 125 Levo and feel even more tired so I imagine my FT4 has dropped even further. I have no idea what's going on here as I've never seen anyone say this. On the day I went up to 30 T3 3 weeks ago I have a bit more energy. I could walk normally for a short way and my legs and feet hurt less. But it was just that day. Now I feel slightly better in the morning when I take 20mcg T3 but I seem to run out before 3pm when I take the next 10mcg, which doesn't have a lot of effect.
I have switched taking Levo until bed time just in case it might ease the drop in numbers. It's inconvenient and I don't like it. But I will see if it does anything. I'm really struggling now. It's really having a debilitating effect on my life. I'm afraid of increasing T3 because where is all this T4 going?
Did I read that the body converts FT4 to RT3 if it senses it has enough FT3. I am not suggesting that you genuinely have enough FT3. Maybe something wrong with how your body regulates conversion of T4 to T3 or ReverseT3. I am sorry to hear that you are feeling so bad, but it might explain why FT4 goes down as you increase T3. Just a thought about where all the T4 might be going.
Another thought, at bit off the wall maybe, but can you be sure that you have not raised T3 higher than your system wants, even if it is below population average. I guess the fact that you feel briefly better after an increase might argue against this, and that the increase does not relieve all your hypo symptoms. T3 is the body's natural pep drug, so more of it is probably always going to give you a hit, before something else says, steady.
I think I would be fairly sceptical of the doctor treating at 2mcg unless you can find any supporting work or others doing the same.
Have you checked and optimised ferritin, folate, B12 and vitD?
I guess you have looked into the possibility of other systems out of whack.
Sorry this response is a bit vague, let me know if anything strikes a chord, or if it is all fanciful pants, FancyPants
I was told to take my Liothyronine T3 spaced out throughout the day. I take 5mcg twice a day 8hrs apart. I didn’t lower my Levothyroxine as it was at the right level. If you’re a poor converter this is why you should stagger your dose throughout the day. T3 lasts about 8hrs snd peaks about 2-4hrs in. It has a half life of 2-3 days also.
To me it sounds like you’re being set up for a fall and then they’ll stop prescribing. I’d stagger it snd see how you feel. No matter how you feel I’d tell your Endo that you feel better otherwise the prescription might stop. I was informed to stagger by the best endocrinologist in the country privately. I know some take it in one hit but have they got the conversion from T4 to active T3 issue.
I am not sure why you suggest one should stagger T3 as a poor converter. Only poor converters are supposed to get it on the NHS, or have I missed something? Surely it is the faster absorption of T3 and shorter half-life that make split doses throughout the day a good idea?
The difference is a good converter who tolerates T4 is getting more T3 delivered throughout the day from conversion. If they are taking T3 at all, they will most likely be taking rather less T3 than a poor converter needs, so it would be less detrimental to them to take this lesser additional amount all in one go, but surely still advantageous if they can manage the complexity of multiple doses in the day?
Someone who takes T3 only, probably taking more of it, and surely more important to spread it out?
If one is a poor converter they don’t get much T3 converted from Levothyroxine T4 throughout the day. That’s why they need a dose every 8hrs or so as T3 only lasts 8hrs but does have a half life 2/3 days max. Yes, poor converters can get it on the NHS if they are lucky. As the NHS range is so wide NHS Endo’s will say it’s in range even if it’s evident the conversion is very poor. So they use this as a get out from prescribing even if the patient is showing hypo symptoms. I got mine privately but eventually also from the NHS after my NHS Endo was reprimanded. My private only Endocrinologist explained why I need to dose T3 every 8hrs and it works extremely well for me. We are all different and some do it once a day for their own reasons I guess.
I personally would always recommend spreading it 8hrs apart from my own experience.
I know some take it in one hit but have they got a conversion disorder??
I'd be very careful in using that phrase "conversion disorder". It is a name for a condition beloved by doctors and psychiatrists that dumps patients in the psychiatric wastebasket where they are assumed to be malingerers and hypochondriacs.
I completely understand your point. I am one of those people who was diagnosed as having neurological functional conversion disorder by the Walton Hospital in Liverpool. It has since been rectified in a letter I received after them seeing I have a DIO2 gene fault. Which means it’s difficult for myself to convert Levothyroxine T4 to active T3. The DIO2 gene test is now scanned on my NHS file.
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