T4 keeps dipping and Endo says levels are still “good” (but I feel exhausted)

[hormonaljunkie]

Hi all,

I used to be on:

-150mg of Levo

And

- 1.5 grains of ERFA NDT

which was very suitable for years. My T4 would usually come out in between 18 to 20 pmol/L (range is 9.0 to 23.0 pmol/L), and my T3 whilst on the upper end of acceptable, would come out in between 4.6 and 6.5 pmol/L (range is 2.4 - 6.0).

3 months ago I switched from ERFA to Liothyronine (T3 pure), and kept the same 150mg Levothyroxine.

I’ve been exhausted, and funnily enough was telling a friend last week “I haven’t had this level is exhaustion since before I had been switched to NDT (at the start of my treatment when I was on T4 only for a few months).

That was 10 years ago and I remember the heaviness of it it, I’ve been far from perfect in between then and now, but this latest fatigue is ramping up.

My T4 is now on the lower end of the range, and I wonder if the mistake was to not also increase my dose of Levothyroxine, given that when taking me off ERFA into T3 only, it means missing out what was some added T4 from the ERFA being a combination medication.

my T3 is now slightly lower, but still in middle to upper range, which doctors prefer as I was running high before (even if I never had heart palpitations or signs of excess T3), but for me to have a T4 of 15.6 pmol/L (tested a few days back), when it was 19 and 20 the 2 last times I was on ERFA still, makes me wonder if my Levo dose needs increasing?

Endo says 15.6 isn’t low…would a difference of about 5 pmol/L be felt as dramatically as I’m feeling it? (Trying to determine which hormone could be responsible, i replace all pituitary hormones but haven’t recently changed any of the other ones).

Trying to see if I need to fight this one or accept that a level of 15 couldn’t be responsible for my symptoms

[TiggerMe]

Certainly if I let my fT4 level drop below 50% I feel totally exhausted even though I take T3, it absolutely makes sense that you need to replace the T4 that was contained in your Erfa which I think would be around 50mcg? (though I'm not really up on Erfa hormone levels)

[hormonaljunkie in reply to TiggerMe]

Thank you, that’s reassuring to see I’m still thinking somewhat straight!

[greygoose]

Never accept that anything 'couldn't be' responsible for your symptoms! There are a lot of people that have to have their FT4 up nearer the top of the range no matter what their FT3.

But, how much T3 are you now taking? 1.5 grains of Erfa would give you about 13 mcg T3. You can't take the exact amount so did you round up or down?

And the only way to find out which hormone is doing what is to try changing it. It's all trial and error, anyway. And it might not be about the missing T4 - although it would have seemed logical to me to replace that - or a change in FT3 level. It might just be that some people feel better on natural than they do on synthetic (and vice versa!). Why did you change?

And it's not about what endo's 'like'! S*d them! It's about what makes you well. And if your presents levels aren't making you well, then you need to change them.

[hormonaljunkie in reply to greygoose]

thank you, and I didn’t realise people could be as sensitive to not enough T4 as they are to T3. But proof seems to be in my pudding clearly!

I went from 1.5 grains to 20mcg of Liothyronine (split into AM and PM 10 mcg doses), and the reason was because the doctors thought I might be getting unstable amounts from the ERfA, as in sometimes my body absorbs more or less of the same dose. Now not sure I agree with them on that, but as I can see that T3 is usually well accepted in patients, I was happy to try to switch to see if I get a more stable T3 result. I’ve only tested it once since 3 months (did a repeat yesterday, will be interesting to compare).

I think I’d probably need 200mg of Levothyroxine now to replace what’s missing from the ERFA (I had found the exact chart with equivalents and noted it as such but forgot to save the name of website I used!)

[hormonaljunkie in reply to greygoose]

I saw my NHS Endo Friday and he denied with full conviction that T4 would impact my fatigue. Even though he went “ahhaaa” to me telling him that my now none-fasting FT4 is lower than what used to be my fasting FT4 when I was taking more overall T4 medication… but he said he’s very happy with my FT3 (5.6) and that was the end of the conversation for him.

I can’t afford the private Endo as regularly as I’d like, but thankfully I was already due to see him next week and I’m praying he’ll be more understanding. Of course that would mean I have to pay out of pocket for the extra 25/50mg of Levothyroxine… feels like you can never win with pituitary conditions!!

[greygoose in reply to hormonaljunkie]

he denied with full conviction that T4 would impact my fatigue.

Yes, but what would he know about it? He's not the one with the thyroid condition. And given that they're not taught about symptoms, that just sounds like an uneducated guess to me.

he said he’s very happy with my FT3 (5.6)

I don't think he'd be so happy if it were his FT3. Besides, as I said, it's not about making him happy, it's about making you well, and that FT3 is too low to make you well.

feels like you can never win with pituitary conditions!!

If it's any consolation, you can never win with any kind of endocrinological conditions.

[greygoose]

the reason was because the doctors thought I might be getting unstable amounts from the ERfA, as in sometimes my body absorbs more or less of the same dose.

Well, that's a possibility. But exactly the same thing could happen with synthetic T4 and T3.

I had found the exact chart with equivalents

That sounds pretty bogus. The equivalents depend on the person, and is probably not the same very day, anyway. There are so many variables, such as how much you absorb in the gut or in the cells, or how well you convert. It's all very well saying that in theory x mcg T4 = y mcg T3, but it is only a theory. Not fact.

It might be ok as a rough starting dose for the change over. But the important thing is being flexible adjusting doses according to need afterwards. And not all doctors are very good at that!

[hormonaljunkie in reply to greygoose]

Ahh I see, thanks for clarifying that hadn’t thought about it that way. But I did mean the conversion of the T4 in ERFA desiccated form, to T4 synthetic Levo form. Which I’m sure is also not fully clearcut as someone can absorb more of one than they do of the other, but at least it’s comparing one form of T4 to another.

And you got that right! Everything is always a debate at best with them. Including the better doctors I’ve seen about 13 endocrinologists by now and probably only 2 of them would agree without trying their hardest to just keep me on the lowest dose they can get away with giving me. It’s like they get paid to keep doses low (reverse big pharma?! 🤣)

Thank you so much for replying so fast 🙏🏼

[greygoose in reply to hormonaljunkie]

With the NHS, that wouldn't surprise me!

[hormonaljunkie in reply to greygoose]

Want to hear something else super logical? My NHS endo who refuses to prescribe the Liothyronine (even though he advised me to be on it too, he didn’t support me being on ERFA, and I have a private Endo to prescribe) because apparently he’s not permitted to prescribe it…

Yet I was in hospital on a ward last week and in the medications they manage to get for me (as in my regular medications) they had…liothyronine. I was in the same hospital where I see my endocrinologist!! Same pharmacy…

So whilst and endocrinologist “supposedly” can’t prescribe what he agrees for me to take, a random ward is able to just get it for me no questions asked… make it make sense!!

[greygoose in reply to hormonaljunkie]

There is no sense in endocrinology. They make it all up as they go along.

[hormonaljunkie in reply to greygoose]

Absolutely! You’re just lucky if you find a dr that’s willing to accept that without taking it as an attack on their ego! 🙏🏼

[greygoose in reply to hormonaljunkie]

Isn't it?