QQ Asking for a friend - TSH/FreeTs target on NDT the same as Levo or Levo/T3?

[FallingInReverse]

Hi a quick question from me today. I have a friend with hashis on NDT. I’ve stepped lightly as I observe her symptoms just aren’t getting any better, but she puts a lot of faith in her doctors… who say her thyroid panel is “normal.” Hasn’t wanted my opinion and experience, until today.

Since I’m on Levo/T3 - just want to ask if the upper quadrant ~75% through range guidance is the same for NDT.

I don’t want to apply what I know of combo therapy to NDT.

I don’t know her dose but her TSH 2 (.4-5.5) and her Free Ts are both only 30-40% through range - what’s standard for NDT dose increases?

If we do 25 Levo (or 12.5 twice over) - is there an equivalent for NDT dosing?

And before you ask her to write her own post, I’m just happy she’s replied to me, after a long time for her and doctors (of course) who are unaware that “normal” isn’t good enough… I am just hoping to open her eyes to consider the concept that she should look closer.

[pennyannie]

Hello FallinginReverse ;

I do not think NDT presents in the same way as synthetics - going by my own experience -

I would think when optimally medicated on NDT - the TSH will be low suppressed :

The Free T3 will likely be higher in the range than when on T4 monotherapy -

the Free T4 can appear much lower in the range than when on T4 monotherapy but this does not matter if the patient has relief of symptoms and feels well -

I take a low T4 to mean that conversion is good as the majority has been converted to T3 :

1 grain NDT is said to be around 75 mcg - 100 mcg T4 - but if you can't convert T4 - how would you know ?

I'm Graves post RAI thyroid ablation and switched to NDT from T4 monotherapy -

My bench readings prior to switching from 125 mcg T4 = TSH 0.01 - T3 @ 25% T4 @ 110% through range :

NDT readings after 8 weeks on same dose TSH 0.01 - T3 @110% with T4 @ 25% through range.

Fasting blood tests 10-12 hours after NDT dose :

If I eat breakfast T3 falls into range though high at around 80/90% through ;

Ferritin, folate, B12 and vitamin D were all at optimal levels prior to switching and now on maintenance doses.

[FallingInReverse in reply to pennyannie]

Thank you Pennie!

So as I step lightly with my friend - I’ve asked what her dose is. Noted that her TSH of 2 is too high for someone on NDT. And noted that both FT4 and FT3 are lower quartile/half but that it’s the FT3 at 40% through range that makes me think it’s no wonder she feels terrible.

I’ve asked her dose and dose history. By the looks of it - her last blood test was from January 2024, which leads me to believe her doctors (also, no surprise) think “in range” means “nothing to see here.”

I know we all have friends/relatives like this - suffering but not wanting to depart from the established healthcare system and can’t even imagine “the internet” could possibly be helpful. For those who haven’t joined us yet - I don’t blame them either. So I’m not pushing, just suggesting.

If I get more info I will kindly ask you a follow up. Again - there’s no way she’d come on the forum herself at this point. It’s just hard to hear her stuck like she is… having three doctors all agreeing and none of them flagging her actual results and not even testing in the last 8 months.

[Rapunzel in reply to FallingInReverse]

I know we all have friends/relatives like this - suffering but not wanting to depart from the established healthcare system and can’t even imagine “the internet” could possibly be helpful.

This is the really awful bit. You don't expect to have to do this; then one day, when you may have spent a good deal of time on "the internet", they will say something, such as, 'You are in range, therefore you are well', 'this isn't a symptom of your thyroid condition', 'your T3 is (slightly) elevated and this will cause heart and bone problems...' 'levothyroxine is the only replacement I can give'... and a light comes on and a trust is broken and a move away from TSH & levo seems the way forward, but you don't feel enabled to discuss it with your GP, because they had previously belittled your denial of improved health since starting levo, sitting there four stones heavier than you were before all this sh*t started and I thought...

Do one, you smug, deluded creep. Oh for you to spend a mile in my moccasins, you effing asshat. Now jog on whilst I go my own way...

2 .5 grains Thyroid S 12.5 mcg T3. All self-sourced with help from the internet; more specifically, TUK and TPAUK contributors. I feel good, for me.

The vast majority of medics so misunderstand this hateful condition. And they don't care. Read Caroline Criado-Perez. It's overwhelmingly a woman's problem and so is continually kicked into the long grass. There are more 'solutions' for freaking 'erectile dysfunction' than there are for thyroid issues. That's where we're at, thyroidies. Welcome to the freaking patriarchy. 🤬

[FallingInReverse in reply to Rapunzel]

I am sooo channeling that anger these days!

[Rosebud1955 in reply to Rapunzel]

We’ll said🙏🏻

[FallingInReverse]

hey pennyannie - is 30 mgs of Armour a starter dose just like 50 mcgs of Levo would be?

My friend says she’s on 30 mgs….

[FallingInReverse in reply to FallingInReverse]

Answered my own question I think…

Patient insert Armour

[pennyannie in reply to FallingInReverse]

Well no - and now you've found a source suggesting starting on 1/2 a grain and slowly increasing in 1/4 grains every 2-3 weeks - so there you have it :

Being with terrible brain fog and my dyslexia really challenging at the time I read the instructions wrong that I was following - but got there - none the less - with a clear head and my dyslexia back in it's box - most of the time.

I started on a 1/2 grain and increased by a 1/4 grains every week and monitored myself on blood pressure, pulse and body temperature AM and PM :

First two physical symptoms remained constant from bench readings and my temperature rose from 35.4 to 36.6 where it hovers now 6 + years later -

after around 18 months on NDT I realised my body shape had changed - I'm still a big person 5.10 and size 9 shoes but now had a waist and had dropped around 2 dress sizes from where I was -

I only take NDT once a day - at a toilet break in the middle of the night - I seem to only need 1 + 1/2 grains - probably as I haven't a thyroid and do dip in the PM - but at 77 - I'm not sure this is to be expected or not - but a catnap solves that issue -

NDT has given me back mental clarity and psychological and emotional stability -

physical strength and stamina were never my strong points as I realise now that I have been hypothyroid since a child and blame RAI thyroid ablation for everything else - rightly or wrongly - ncbi.nlm.nih.gov/pubmed/306... - details on my Profile page :

[Rapunzel]

Now I envy you, there, Falling. I'm still uselessly frothing at the mouth, stamping my foot and swearing like a trooper. And if my family ever talk of my GP?

Danger! You have lit the blue paper. Move away from the fireworks...

Still, as my DH says, 'There's nothing wrong with your heart, lady!' 💥

[FallingInReverse in reply to Rapunzel]

❤️ awwww!!!!! Love our DHs ❤️

[Brightness14]

Everyone is different. After my TT in 2015 I started on NDT and my TSH was always low, supressed. My FT4 was always higher than most at around 70% and FT3 at around 80% through the range.

For years I was on 2.5 grains per day but as time went on I reduced to 2.25 grains 1.25 at 6.30am and another 1 x pm one hour after lunch.

I was only reading yesterday that someone had the bright idea of testing people who have no thyroid issues. The results was surprising being that nearly all of the hundreds tested had a high FT3 % result than FT4.

Good luck with helping your friend.

[Brightness14]

Sorry I forgot to add that I started with 1/2 and found I could increase every 10 days by another 1/2 I got to 2 grains and six weeks later had a blood test.

[FallingInReverse]

Thank you everyone! I woke up feeling so sad. Knowing she is feeling weary and confused… like I was for that first year I was stuck on 50 Levo.

It’s like - increases are IN THE PATIENT INSERT.

I know we talk about uninformed and ego-driven doctors … but… why is the basic prescribing info right in the patient insert not understood and followed.

Seems like an easy one?!!!! Why is having hypo like living in the episode of the Twilight Zone. No one would believe this is actually happening.