NDT Only ? (success or not?): My FT3 is... - Thyroid UK

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NDT Only ? (success or not?)

Cola4444 profile image
11 Replies

My FT3 is consistently at 65-70% thru range with TSH 0.4 to 1.5.

NOTE: I feel pretty good on NDT only... apart from weeks of diarrhea ... probably due to a quicker metabolism or taking NDT on its own.

In a quest to reach perfection (target FT4 at 50%) ... as FT4 is consistently 0% to 11% ... i've attempted to add 12.5 mcg / 25 mcg / 37.5 mcg over the past 3 months... which has resulted in no shift in FT4 above 11% thru range... whist providing bad side affects (headaches, zero lebido & joint aches).

QUESTION: Do others in this community function well on NDT / T3 only with low FT4 readings ?

Thank you.

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Cola4444 profile image
Cola4444
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shaws profile image
shawsAdministrator

I wouldn't try to fathom out what the ''perfection' would be. It would be different in many people

What we do is add small increments every six weeks (approx) untli we are symptom-free and feel well. Any signs of 'too much' go back to the previous dose.

Blood tests were introduced for levothyroxine alone i.e. T4.

If we take NDT - and as it contains all of the hormones a healthy gland would do - the results cannot correlate with levothyroxine. (NDT was first introduced in 1892 and lives were saved from then on).

When our older doctors prescribed NDT - no blood tests had been invented and small doses were added gradually to the original dose until symptoms resolved and we felt well.

Cola4444 profile image
Cola4444

Thanks for your comments Shaws.

Very helpful.

I will work up on Thyroid-S only again... then revert to the previous dose as you suggest when i feel i'm overloaded (for me thats constant tummy upsets).

Thank you !!

June25 profile image
June25

Hi Cola4444,

I'm very interested in this thread because I also had my FT4 drop from mid range to under range over 3 years on NDT. The trouble was that eventually on the same dose of 2.5 grains NDT my FT3 dropped too, from the top of the range to around 40%.

I am still seeking answers as to how this happened. I can't answer your question directly but I have learned a few things along the way.

- My body does not like it when I increase T4 above around 90mcg. My heart rate goes up too much.

- Forget everything you've read about what 'perfection' is. Go by your symptoms. If you feel good enough to carry out your day and do everything you want to do then you have reached your 'perfection'. Then be vigilant as you may have to tweak your dose in order to stay there.

- It's ok to experiment with a mix of NDT, T4 and T3 but go small and slow and only change one thing at a time. Sounds like you are there or nearly there. I'm still working on it.

June

Cola4444 profile image
Cola4444 in reply to June25

Thank you for this valuable information June. I will tweak when needed & go slow on changes as you suggest. Thank you !

June25 profile image
June25 in reply to Cola4444

When I saw on my blood test that FT3 had dropped below range I was very worried. I self prescribe and I thought my treatment was going terribly wrong because my results did not in the slightest correspond to the 'perfection' that is purveyed everywhere, ie. FT3 in upper quadrant of range and FT4 mid range. I was a newbie and didn't know that this happens to others on NDT alone.

Looking back on it now I actually didn't feel that bad on lower levels. I accomplished moving house, which I had not felt able to do before starting on meds, and pretty much got my life back. I wish now that I would have known to thank the gods for feeling as good as I felt and just tweak my meds a little from there. Instead I've been all round the houses with changing my meds. Lucky for you, you can avoid this mistake.

Each person has a unique 'setpoint' for the combination of their FT3, FT4 and TSH. I think your body tends towards that setpoint in the long term no matter how you dose with meds. I don't know a lot about this but I think it's probably futile to argue with it. You have to work with it and pay close attention to the feedback from your body on each change you make.

June

Cola4444 profile image
Cola4444 in reply to June25

Again, thank you June.

And this is encouraging.

pennyannie profile image
pennyannie

Hello Cola ;I switched overnight from 125 T4 to NDT and slowly built my level up as the T4 left my body.

On T4 only medication my T3 was generally around 25% with my T4 around 110%:

On my first blood test on NDT my T3 was now at 110% through but my T4 at around 25% through the range and I read that this is how NDT presents :

Obviously, not necessarily over range but with the T3 being higher in the range than the T4 - which as I see it shows that conversion of the T4 to T3 in happening.

I did add in a little T4 thinking I needed this to be higher but it did nothing for me.

I do read of people a little T3 or T4 to their NDT to find their " sweet spot " - I've given up looking for mine as I find dosing with NDT quite subtle, but very effective, and I should imagine, as I age, and life gets in the way, I shall need to review my dose accordingly.

I have just a yearly blood test, more to track and maintain my ferritin ,folate, B12 and vitamin D as these four, at least, need to be at optimal levels to assist the thyroid hormone conversion.

So I'm now 3+ years into taking NDT and am much improved and have back my independence.

I'm with Graves post RAI ablation in 2005 and managing lingering Graves, thyroid eye disease and hypothyroidism.

Cola4444 profile image
Cola4444 in reply to pennyannie

Wow pennyannie this info has helped me so much... if only to validate that NDT only can be 'good enough' for me as it was a few months ago.

I chased the Levo path recently because my FT4 is stuck around 10% & reading that FT4 at 50% & FT3 around 70% was optimal. But 3 Months on Levo (37.5mcg) did not move my FT4 bloods & in fact made me feel more tired, joint pain & headaches.

I will continue life on NDT (Thyroid-S) for the foreseeable future because it makes me function (upset tummy when too much).

The people on this site are amazing & it's priceless resource.

THANK YOU !

pennyannie profile image
pennyannie in reply to Cola4444

So, I stopped 125 T4 and the following day started on 1/2 grain of NDT :

But before i started this switch I made sure my ferritin, folate, B12 and vitamin D were optimal and I took bench readings of my T3 and T4 - so I had some results to compare to.

So, week 1 - was 1/2 grain - away from food - in the early morning @ around 3 suits me :

Each following week I increased by 1/4 grain :

My plan was to get to 2 grains and then hold that dose for 6-8 weeks and then take a blood test to see if the T3 had moved:

When I reached 1 + 3/4 grains I didn't feel as good as the week before - edgy, nervous and just not right for me :

So I dropped back down to 1 + 1/2 grains and waited the 6-8 weeks and did a blood test:

The result was an over range T3 but I had no symptoms of over medication and felt fine and my T3 and T4 had literally swopped places from when on T4 - levothyroxine.

Though out this experiment I monitored my blood pressure, pulse and temperature twice daily and both my pulse and blood pressure remained stable and my temperature slowly rose from 35.4 to 36.6 which is where it sits today.

Some people split their NDT dose - others do not - it's just something else to look at :

I am still with some hypo symptoms despite an over range T3 - and think if I wanted a blood test to please my doctor I'd likely have to wait 24 hours between blood draw and last dose.

These blood tests, ranges and guidelines were all introduced to be used with synthetic thyroid hormones when Big Pharma launched its own medications to compete with NDT which was the existing treatment of choice and had been used successfully for over 100 years throughout the last century.

P.S. A loose bowel , can be caused by too fast a metabolism, and could be a symptom that you have taken too much medication - just drop back 1/4 and see if it resolves.

Cola4444 profile image
Cola4444 in reply to pennyannie

Interesting how the FT3 & FT4 numbers switched when you swapped to NDT. Also, 3am might be worth a try (typically a toilet visit time for me).

I'm back on 2 grains ... 1 at 7am then half around 2pm & then the last half around mid evening.

I did see someone saying with Food may be ok if a sensitive tummy... but i think that may negate the dose, so not trying that for now.

Yes my tummy was bad on 2.5 grains with upset tummy most tea times.

I am learning that the NDT sweet spot is very individual & that Thyroid blood panel result interpretations are centered around FT4 treatment and not NDT.

Thanks again !

Cola4444 profile image
Cola4444

Great information & useful for me to try multi dosing throughout the day.

Thank you Bouveri

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