New Thyroid Regimen being tested

[BlueGreenWordyDoc]

So, I finally saw an endocrinologist who knows more than the one chapter's worth of thyroid info most docs (at least in the US) have-- including endocrinologists.

My story (it's been a long time since I've been on here) is that I became hypothyroid right at the same moment that I developed an immune disorder (which is complex and multifactorial and of unknown origin & has almost killed me two summers in a row, but that's a different story).

So, I wasn't fully cognizant of the symptoms at first, until I looked down and realized I'd gained 50lbs in a month...

I was on levothyroxine at various doses for years and while my TSH looked "good", as most people on this site know, that doesn't mean I wasn't clinically hypothyroid, which I was.

I switched to NP thyroid and got up to a hefty dose--2 1/2 grains a day-- and was STILL clinically hypothyroid. With a TSH of about 4, to boot.

My doc switched my to all T3, liothyronine, first at 50 mcg and then at 100mcg and it took a few months on 100mcg, which for those who know is a HUGE dose, for even my TSH to get below 3 and for my clinical symptoms to subside (I watch the thyroid specific ones bc I have other stuff going on-- so myxedema, body hair and body odor).

Then I went into the hospital for a "mystery" fever (5 months later proven to be a serious bacterial infection which they accidentally saved my life from on my two hospital admissions by giving me several days of 'sepsis protocol' antibiotics before they decided to look for herds of Zebras (my labs, etc, don't "look right" when I'm getting septic)--- and everyone flipped their lid over my thyroid dose. Even tried to argue, some of them, that it was causing my fever, which I knew was completely not true and was belied anyway by my other labs but anyhoo...

So, I was kind of dilly dallying and taking 75mcg a day, all at once, which I've seen recommended on this site (the all at once part, not the dose).

The new endo explained (which I knew, but it was good to hear) why it's important to have T4 around, but she conceded that I have both a conversion problem (from T4 to T3) and clearly an absorption problem.

So, she started me on 100mcg of Tirosint, which I'd always thought was a bit of brand name baloney, but she explained that it is much easier to absorb and therefore gets around people's absorption problems.

With that, she prescribed 25mcg of the liothyronine (T3), to be taken TWICE daily, once first thing the am, like usual, but another dose a couple of hours after lunch. She is of the opinion that if you take all your T3 at once, the short half life makes it such that you don't have enough by evening and tend to crash in the mid afternoon. (I always crash in the mid-afternoon). For a total of 50mcg a day.

I had not heard that theory before, and I've just started this regimen about a week ago, but I will keep you informed of the results.

I was surprised she gave me that much T3 on top of the Tirosint, but she seemed to think I needed it based on my history.

Again, we'll see how it plays out. It's too early to say and I've been ill anyway, which makes TSH useless bc when you are sick your body suppresses TSH on it's own, mobilizing all of your stored thyroid to keep you alive (I guess it's the mobilization that increases your blood levels and decreases your TSH, but I need to look it up bc I can't remember my endo pathways well enough to be certain why that happens. (that's with serious illness, not something like a cold or probably even flu. ))

again, hope all are having a good day and night wherever you are. And I'd be interested to hear what other people's experiences with similar situations are, if any of you have them.

[RockyPath]

For some incomprehensible reason, your health insurance covers the Tirosint, while I would have to pay market price of $5 a day because I’m covered by Medicare and no Part D formularies include this special levothyroxine.

Nuts!

🌰

Thank you for sharing your journey here, BGWD. You’re the tops.

[BlueGreenWordyDoc in reply to RockyPath]

I'm sorry about that. It is baloney. But I'm simultaneously not 100% sure that Tirosint is actually any better. Drug companies have a lot of sway over docs.

[greygoose]

She is of the opinion that if you take all your T3 at once, the short half life makes it such that you don't have enough by evening and tend to crash in the mid afternoon. (I always crash in the mid-afternoon).

That is such rubbish! The half-life of T3 is about 24 hours. That means that if you took 50 mcg this morning, by tomorrow morning you would have about 25 mcg left (hardly catastrophic!) less whatever got into the cells. What gets into the cells - and remember, it's only active in the cells, it does nothing in the blood - stays there for about three days. So, your mid-afternoon droop has nothing to do with how you split your dose.

Also, not everybody needs T4. Several of us on here - including myself - have been taking T3 only for years. From time to time I try to reintroduce T4 but always regret it. It doesn't matter what brand or what dose, I'm just always very relieved when I decide to give it up and go back to T3 mono-therapy again. It's not that I can't absorb it, it's not that I can't convert it, it just makes me very unwell.

I've been on 75 mcg for about ten years, now. Before that I was on much higher doses, which I've always taken in one go. The reason for that is that I appear to have some form of resistance to thyroid hormone, and I need to flood the receptors in order to get just some of it into the cells. And whilst I still need to take it all in one go, things must be improving because my need for exogenous T3 seems to be reducing. From 225 mcg to 75, and now possibly 50, but we'll see how that goes.

Obviously I'm not your typical hypo. Which puzzles, irritates and annoys most doctors. They don't like T3 mono-therapy - for the most part they don't even like T3! - and they don't like huge doses. And they don't like you not splitting the dose! They are forever trying to force you back into the mold they feel comfortable with. Which is why I gave up doctors and now self-treat - it's much better for my blood pressure!

[RockyPath in reply to greygoose]

Perhaps different humans have different rates of clearance, GreyGoose. You are the revered expert and everyone looks to your expertise.

The endocrinologist in question stated unequivocally “T3 has a half life of 12 hours,” and although I’ve heard other endocrinologists say “take it all at once,” my own experience with the effects of experimental over medication does lend credence to T3’s ability to fade within half a day. There is a class of pharmaceutical agents that my liver metabolizes so rapidly they’re totally ineffective, And I’ve read posts here from people who take their NDT twice daily. So after hearing that I started to split my NDT intake and experienced better sleep maintenance. There was a book written about a man’s experience living on T3 only and he described a complex protocol that was the only way he could function fully. I gave the book to an endocrinologist but recall that he began with his first dose at an ungodly hour before dawn and then more later.

I’m glad that the one a day works for most. And glad for this forum and the exchange of experiences with treatment.

[TiggerMe Ambassador in reply to RockyPath]

24 hours life is pretty easy to test (mine is more like 24-48 hours as I find it halves over 24 hours) what is hard is knowing how much has been taken up by the cells which is the important bit, just travelling around in the blood does nothing

You are talking about Paul Robinson CT3M method

[greygoose in reply to TiggerMe]

Half-life.

[TiggerMe Ambassador in reply to greygoose]

I was meaning testing 24 hours after last dose rather than 12 hours after as is the norm to see how much remains in the blood

[greygoose in reply to TiggerMe]

Yeah, that's a bit obscure, though.

[TiggerMe Ambassador in reply to greygoose]

Well, if you want to know how long it stays circulating in your system it's an easy option 🤷‍♀️

[greygoose in reply to TiggerMe]

True.

[greygoose in reply to RockyPath]

Well, maybe we do have different rates of clearance, but not to that extent! Not a difference of 12 hours. And the endo may have been unequivocal, but that doesn't make her right. It just means she thinks she's right. It was diogenes that told me about 24 hours, depending on how much your taking - and other sources have backed that up - and I'd take his word over any endo's any day of the week.

But it's not really even about the half-life, is it. Because half-life refers to what's in the blood. And hormone in the blood is inactive. It only becomes active when it gets into the cells, and it stays active in the cells for about three days. And as it's being topped up every day there's always some active hormone available.

What's more, I never suggested that no-one needed to split their dose. I was saying that not everyone does. Some people are better splitting it, and some need to take it all in one go. But this has nothing to do with the half-life of T3.

Are you talking about Paul Robbinson's book?

[RockyPath in reply to greygoose]

Yes, that was the book I read when an endocrinologist prescribed levothyroxine and T3 and I was failing miserably. Then he moved me to NDT two times a day and then referred me to a tertiary care center whose endocrinologist thought I didn’t need any replacement hormone 🙄

BGWD had been through a worse ordeal but keeps on ticking ⌚️

[greygoose in reply to RockyPath]

Never trust an endo. They don't know as much as they think they do.

CT3M works for some people but not everybody. It wouldn't do much for me. We have to find out what we need by trial and error, and not be dictated to by endos who have never had any practical experience of taking thyroid hormone - or being hypo - and want to force everyone into the same box.

[BlueGreenWordyDoc in reply to RockyPath]

Yeah, there seems to be little of anything about thyroid that the medical community has any agreement on-- except that the majority of primary care docs here (equivalent to GP) truly know nothing and will only ever check TSH and will tell people with TSH's of 10 that they don't really worry until it's over 20. blah blah blah.

It makes me wonder how many people, especially women as we are both more disregarded Re symptoms and get hypothyroid more often, are just sitting around completely hypothyroid all the time. It's awful.

[BlueGreenWordyDoc in reply to greygoose]

Yeah, I wondered about that logic (the take the second dose in the afternoon) logic myself. As "two or three hours after I eat" is a hard time for me to keep to-- I don't always eat lunch at exactly the same time and I'm napping in the later afternoon-- and you're right, probably not because of thyroid, I end up forgetting the second dose more often than not. So, I'd probably do better taking it all at once again.

[greygoose in reply to BlueGreenWordyDoc]

Thing is, they like to be in control and dictate the times of taking doses. When in reality there is no right or wrong time, only the time that suits you best.

[BlueGreenWordyDoc in reply to greygoose]

I'm not your typical hypo (or typical anything) either, and yeah... good luck getting good care on ANYTHING if you lie even one standard deviation, let alone more than that away from the mass of people. Statistical outliers are actually part of statistics. We aren't defective, we just don't act in a way that makes most docs comfortable. (well, in the case of my immune system I am defective, but the trouble it leads to is outrageously worse--up to very nearly dying level worse-- bc no one will believe the words that are coming out of my mouth if my labs and X-rays don't look textbook)

[BlueGreenWordyDoc in reply to BlueGreenWordyDoc]

GrayGoose, I just did a quick literature review and it does state that the "biological" half life, which, as you were saying, is what matters, not how long the T3 is in the blood, but how long it is active in cells, is between 2 & 3 days.

From reading these posts in response to my post, it is clear to me that how thyroid hormone affects each of us is pretty different.

Almost makes me wonder if the reason every endo and half the people disagree about the right regimen is that "hypothyroidism" is simply not a monolithic diagnosis. I mean, we obviously know that already in a crude way--- Hashimoto's vs. not, thyroid ablation hypothyroidism, etc etc. But I mean what the various replacement drugs do in our bodies.

More research, a lot more research, clearly needs to be done.

As a follow up, I forgot to take my second dose more often than not since I started, so the last few days I've started to take all my T3 -- 50mcg -- at the same time, when I wake up.

I'm too globally sick right now to have much of a clue about how my thyroid is doing. My. TSH is still suppressed, but that's not meaningful given that I take T3 AND I've been very sick the last few months.

[Regenallotment Ambassador]

how refreshing to meet an endo who listened and used your history!

Hope it goes well 👍