Sometimes I Wonder: When I was diagnosed, my gp... - Thyroid UK

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Sometimes I Wonder

ZenR1 profile image
9 Replies

When I was diagnosed, my gp immediately went to levothyroxine, as to be expected. But I never felt great on it. My TSH did go down quite a bit, though my hormone levels only got slightly better.

I eventually went over to NDT and everthing (symptoms and levels) got way better. But in addition to being on a different kind of medicine, I'm also just on a lot more of it because for some reason, my gp was willing to dose me higher on NDT. So while I only got up to 137mcg of levo, I eventually settled at 4 grain (260mg) of NDT. So just the T4 alone I'm on with NDT is more, and there's the addition of the T3 as well.

That's a lot more thyroid hormone than when I was on levo. Could that alone be the reason for the improvements? If I just got on a high enough dose of levo, might I do just as well?

Truth be told, I'd love to be able to be on levo in order to avoid the issues with NDT.

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ZenR1
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shaws profile image
shawsAdministrator

4 grains of NDT is equal to 400mcg of levothyroxine. 1 grain is approx 100mcg of T4 in its effect.

Some people may have a Resistance to thyroid hormones, meaning that they need larger amounts than an ordinary person who takes about 100mcg of levo.

ZenR1 profile image
ZenR1 in reply toshaws

I've heard, and my experience seems to be, that the conversion chart isn't really accurate. For instance, I don't think I could handle 400mcg of levothyroxine, whereas I do just fine on 4 grain of naturethroid. I've actually never heard of anyone being on that much levothyroxine.

shaws profile image
shawsAdministrator in reply toZenR1

Due to NDT being more conducive to the human body, being made from animals' thyroid glands and also contains all of the hormones a healthy gland, would suit many better. Lives were saved since 1892 - no blood tests then to dictate dose and it was all about relieving symptoms.

The BTA made False Statements about it in order to get it removed from being prescribed in the UK.

One of our Advisers (now deceased) wrote a Rebuttal to them and despite three yearly reminders they never did respond before Dr Lowe died. I doubt anyway that they could argue with someone who knew far more than they do, because he did all his research as a very young man and found out how important hormones were to relieve our symptoms. He'd never prescribe levo only NDT or T3 for patients who were 'resistant' to thyroid hormones' who need larger doses to restore their health. T3 restored his life as he was thyroid hormone resistant and it enabled him to study and research.

in reply toZenR1

Hey - I totally agree! I share the same experience - I was on 4 grains of NDT at some point and a lot on 3 grains, and my levo dose now is around 150 . Personally NDT didn't suit me, but it seems you need to go up it quite a bit. It's also because you're suppressing your thyroid.

ZenR1 profile image
ZenR1 in reply to

So you prefer levothyroxine then? What made you try NDT in the first place and which brand did yoo try?

in reply toZenR1

I was on Armour originally, started small and felt pretty good for 2 years I was on up to 2 grains. Then switched to Nature Throid because of the cost, in 2016, didn't feel NT was strong enough, and then in 2017 felt pretty bad and was overdosed, then thought it was a matter of dosing, but I tried every possible dose, cutting pill into 8 pieces etc. I have developed some weird t3 reactions, started to feel spaced out and anxious like never before. Everyone was saying it's normal to have low ft4 and high ft3 on the pill, but this didn't suit me at all. I'm not yet ideal on levo, but much much better than on NDT. Everyone is different :)

ZenR1 profile image
ZenR1 in reply to

So interesting. I felt that spaced out feeling on synthetic T3.

in reply toZenR1

Yeah I have it on both, synth and natural. Also as increased t3, I found my hypo symptoms getting worse. I personally think I was on too high dose, but the difference in how I felt and labwork was so huge by 1/8 of the pill I had to switch.

in reply to

Also my two cents..many people say synth is stronger than NDT and synth is bound to sodium, while NDT to protein so another reason why we need different dosing possibly :)

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