From NDT to T3 - Difficult going. : Hi Everyone... - Thyroid UK

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From NDT to T3 - Difficult going.

princess20 profile image
28 Replies

Hi Everyone. Sorry this is a bit long but I would like to share these results with you.

I gradually took myself of NDT (Thiroyd) to T3 only over a period of 3 months or so, from Jan 22 really because of stress, brain fog and anxiety issues.

I was on 2.5 grains of NDT dropping gradually 1/4 grain every week or so. 10 Feb 1.5 grains. 10 March 1 grain NDT intro T3 1/4 tab (25mcg). 26 March 1 grain NDT and 1/2 tab T3 split twice a day. Felt really good, less panic, mind fog and anxiety. By 2 April T3 only 1/2 tab in morning and 1/4 tab in afternoon. Still feeling really good and calm. By 6 April started getting headaches and constant adrenaline rushes, not sleeping well. Monday 9 April decided to drop to 1/4 tab am & 1/4 tab pm because I felt so unwell. I stayed on this dose until I had my bloods done on 20 April -

Anti-thyroid peroxidase - 41 IU/ml range - <34.00IU/ml

TSH 43.1 mIU/L range - 0.27 - 4.20mlU/L

T4 1.6 pmol/L range - 12.00 - 22.00pmol/L

T3 2.5 pmol/L range - 3.10 - 6.80pmol/L

I tried to get a blood test done before this but unable to get an appointment for 3 weeks as the surgery were changing the appointments system. Needless to say my Dr freaked out about these results and she managed to freak me out as well. Even though I knew my results would be weird l felt mentally quite well even though I was really tired. I asked her about adrenal support but she wasn't prepared to entertain this until I had seen an endo. She said that she had never come across results like this so I guess she didn't want to go it alone without further advice from someone else. She was concerned that my immune system was in failure. So I've now got an appointment with an endo on 15 June and further blood test on 1st June.

I wasn't able to get full bloods last time as I needed to get a Dr's appt to sanction this. But full bloods will be done in June.

By 30 April raised my dose to 25cg T3 - 1/2 am, 1/4 pm, 1/4 evening. and it's not going well. With headaches, constant stressors because of my adrenals. Taking T3 in evening initially helps with sleep but wake up 3 or 4 in morning, can't sleep then as adrenals kick in. No brain fog though, but confusion and slow thinking, constantly edgy and defensive. Significant weight gain and hair loss. Temp taken in mornings, average 36.5.

Any thoughts or advice would be welcome because I don't know where to go from here actually. Should I go back to NDT with a bit of extra T3 thrown in? I can't go on T4 only again, because I was so unwell on it. I know I need adrenal support but what would be the best to use. It's confusing. Thank you

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28 Replies
marsaday profile image
marsaday

What t4 dose were you on?

marsaday profile image
marsaday

A big clue is you felt well when your t4 and t3 were in a different ratio / level.

Try and work out how much t3 and t4 you were on when you felt good. This is the key for many people.

Nth comes in a set ratio and the t3 component is high for some people.

T4 on its own is not the answer as well but I am sure a good balance of t4 to t3 is going to give better results. What that balance is I can’t say.

But using t4 and t3 gives you much more flexibility

princess20 profile image
princess20 in reply tomarsaday

Hi Thanks for your reply. Yes I did feel better when I still had NDT i.e. the T4 in my system whilst adding some extra T3. I know how much NDT I was on when I added the T3 and felt better. I think what I need to know is, is it OK to use NDT and Liothyronine together, as I'm just not sure.

Thanks again

marsaday profile image
marsaday in reply toprincess20

Yes it’s fine but be aware of the amounts you take when using nth.

1 grain has 36mcg t4 and 9mcg t3 in it.

in reply tomarsaday

Very good post indeed! I think what you say is true for many people not feeling optimal neither on T4 only (where most doctors want them) nor on drugs with a fixed T3/T4 ratio, such as Novothyral or NDT. Pigs seem to produce much more T3 than humans, so those who do really well on NDT are most likely poor to lousy converters.

Princess20, I hope you find the optimal T3/T4 ratio for you, but since you felt good at one point I don't see why you shouldn't.

princess20 profile image
princess20 in reply to

Thanks for your reply and yes it is difficult to find the optimal dose and I feel I have to explore everything not just put up with feeling unwell. I don't have T4 only at the moment so I'll go back to 1 grain NDT plus a little T3 added in to the mix to see how I feel then. Best wishes

greygoose profile image
greygoose

Why did you want to go onto T3 only? I think your motivation to do that is key. And, why didn't you make a straight swop?

princess20 profile image
princess20 in reply togreygoose

Hi I wanted to try T3 because I wanted to lessen the brain fog, anxiety and stress factors. I didn't know I could do a straight swap from NDT to T3. I thought it had to be done gradually? Hence I was doing it slowly over weeks, so perhaps this was too slow and this is why I'm feeling unwell now perhaps?

greygoose profile image
greygoose in reply toprincess20

Yes, I think it probably is. You made yourself hypo again and confused your body. But, it should sort itself out given time and the right dose.

You have to go slowly when introducing T3 for the first time. But, as your body was used to T3 - there being T3 in NDT - you could have made a straight swop.

princess20 profile image
princess20 in reply togreygoose

As I was feeling really well on a lower dose of NDT i.e. 1 grain plus 1/4 tab i.e. 6.25 mcg T3, is it ok to mix these long term. If it is what dose of NDT should I start on again. Sorry for all the questions and everything, I just want to get it clear in my mind what I have to do without the worry.

greygoose profile image
greygoose in reply toprincess20

Are you saying you want to go back onto NDT? There's absolutely no problem with taking NDT and T3 together, as long as your FT3 doesn't go over-range.

You taking 25 mcg T3 at the moment, right? Just add in 1/4 grain of NDT, and see how you feel. You can increase the NDT by 1/4 grain every two weeks until you get to one grain. Then retest. If you feel you're on too much T3, you can reduce by 6.25 every 2 weeks. :)

princess20 profile image
princess20 in reply togreygoose

Yes I am taking 25mcg T3 and yes to go back on to NDT but with extra T3 if that'll work. I feel that I have to explore all the options in order to feel well. NDT was ok, but when I added a little bit of extra T3 and reducing down to 1 grain I felt so well in myself. I thought that perhaps with T3 alone if i got my adrenals sorted, I would be myself again. But clearly I have to look at other combinations. Guess I'm one of those that needs T4 in the mix as well.

I've got an appointment with an endo in June so I shall cancel that. Also I'm moving to Bulgaria in July for good so I'm trying to source good Dr's out there.

greygoose profile image
greygoose in reply toprincess20

That sounds exciting! :) I hope going back to NDT + T3 works for you.

princess20 profile image
princess20 in reply togreygoose

Thank you for your help, it's very much appreciated. I don't know what we would do without this Forum, it's a source of hope and positiveness for so many people.

Best wishes

greygoose profile image
greygoose in reply toprincess20

You're welcome. :)

princess20 profile image
princess20 in reply togreygoose

I've been thinking overnight what we discussed here and I'm not clear on why I cannot do a straight swap from 25mcg of T3 to 1 grain of NDT which is basically where I want to be and then gradually introduce straight T3 at 1/4 tab. I don't want to stay on 25mcg T3 and introduce NDT but to go back to 1 grain NDT straight away and then gradually introduce T3. Would there be a problem with this?

greygoose profile image
greygoose in reply toprincess20

I just thought it would be easier on your body the other way. If you go from 25 mcg T3 to one grain of NDT, it will be a massive reduction in T3, and you might say that the T4 will make up for it, but it depends how well you convert. Plus it will take six weeks for it to fully convert. It just doesn't sound like a very kind thing to do to your body.

princess20 profile image
princess20 in reply togreygoose

Ok, that makes sense now, but would probably like to adjust every 10 days instead of 14 if that would be ok to do?

greygoose profile image
greygoose in reply toprincess20

No, it wouldn't. You're in too much of a hurry and you're just going to make things worse for yourself. You can so easily over-shot your sweet-spot if you increase too fast. Hormones take time to settle down and do their stuff. We're not talking aspirin, here. If two weeks is recommended, it's for a reason. :)

princess20 profile image
princess20 in reply togreygoose

I get it. That's what I'll do then. Sorry for all the questions here but just one more thing. Add 1/4 grain NDT over a 2 week cycle, can I also at the same time reduce T3 by 1/4 tab as I don't want to over-medicate on T3. This could create issues as well. What do you think?

greygoose profile image
greygoose in reply toprincess20

Yes, that's fine. But there's not much likely-hood of you over-medicating on T3. We're only dealing with tiny doses, here. :)

princess20 profile image
princess20 in reply togreygoose

Ok. Thanks for everything you've been really helpful. I'll keep everyone updated:)

greygoose profile image
greygoose in reply toprincess20

You're welcome. :)

Wishingwell profile image
Wishingwell

Well your labs show you are undermedicated ... TSH is very high and both t3 and t4 are low ... are they free t3 and free t4?

Could the symptoms be from being undermedicated?

Is your t3 prescribed or self sourced?

princess20 profile image
princess20 in reply toWishingwell

thank you for replying to me. Yes the results were a bit frightening really. Yes, it's free T4 and T3, Well when I had these bloods taken I was on 12.5 mcg T3 and felt ok, but very tired. Now that I am on 25mcg I feel quite poorly and T3 is self sourced. Perhaps silver fox is right and that other things arn't in place for me.

silverfox7 profile image
silverfox7

May be other things aren't in place for you to take T3 only.

princess20 profile image
princess20 in reply tosilverfox7

Perhaps you are right. Perhaps I need to look at NDT or T4 with T3 added in. How quickly can I start doing this? Do you Know?

silverfox7 profile image
silverfox7

I've always thought that adrenals need to be sorted first if can't raise meds of T3 but not sure on that but thought looking at levels of Vit D B12 folate and ferritin wouldn't go amiss as when optimal they help the Thyroid to work better

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