The transition to NDT: I thought I would make the... - Thyroid UK

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The transition to NDT


I thought I would make the move in an effort to rid myself of all 10 symptoms I am currently suffering. My GP said she would support me by doing the 'fancy' bloods I requested however the hospital wouldn't so them for me just TSH (3.0) and Free T4 (15.5). I was hoping for a baseline before starting NDT. My GP wouldn't prescribe this and said she only knew of 1 other patient (12K patients at this surgery). So I purchased Thyroid S from Amazon (waiting delivery) and I am feeling a bit scared to take it as I have read you can feel worse before better especially if the dosage is wrong. So I imagine I start at 1 grain (2 doses) then increasing by .5 grain every 2 weeks. Given I am only on 75mg Levo I assume 2 grains might be the optimal amount? Should I have private bloods to get the levels or just go with my symptoms? Also buying meds from Thailand seems dodgy have I done the right thing?

20 Replies

Gillybean... lots of questions and no right/wrong answers particularly. First, it is suggested that one start off on NDT with 1/2 - 1 grain of NDT and then, as you said, raise by 1/4 - 1/2 grain every 10 - 14 days. It is strongly recommended when one is self-treating that one keep a daily log of body temp/heart rate taken about 3 - 4 pm each day along with dosage and how one is feeling. If body temp and heart rate stays low those first two weeks then you will know it is alright to raise NDT dosage. By the same token, if you get anxious, elevated heart rate and body temp, you will want to lower your dosage to a previous level because you are taking too much NDT. A log/journal just gives you a little insight and control.

You may have to get some of those labs done privately. Do remember that in order to determine optimal NDT dosage, you should probably test and tweak levels of iron, D 3 and B 12 as you supplement with NDT.

I had been on T 4 only for a year and transitioned to NDT because I was miserable. Within a week or so, I was on cloud nine with utter joy as my symptoms began to be resolved and I was feeling so much better. My only problem was my inability to convert T 4 to T 3. Once my body was given the T 3 (NDT), I was good to go. Others aren't so lucky and may have other problems they need to work on before they realize the full benefits of NDT supplementation.

Hi Phoenix, I'm seriously considering self-treating with NDT as I am taking T4 but my T3 levels are very low and my doc won't prescribe T3 or consider that I may have a T4 toT3 a conversion problem. Therefore, can I please ask where you are getting your NDT? Many thanks!

in reply to Deborah31

Should have mentioned, I want to trial NDT to alleviate all of my horrible symptoms on T4: serious weight gain, aches and pains all over my body, fatigue, hair loss, very poor memory and concentration. Really hoping to try NDT!

Deborah... I am in the US and my doc writes me a script for NDT.

Lucky you!

Does NDT replace Levothyroxine T4 completely? That is, do you just have to take NDT without having to take Levothyroxine? Does NDT include both T3 and T4? Thanks!

Deborah... NDT (natural desiccated thyroid) is a concentrated thyroid extract from pig thyroid. It contains all the hormones etc that our own thyroid produces. The main thyroid hormones that it contains is T 3 and T 4.

Levo is T 4 only. The theory is that our liver should convert the T 4 into all the T 3 that our body requires. T 3 is the 'active', short-term thyroid hormone. The problem with some of us is that our liver does NOT do the conversion and we can't utilize all the T 4 that levo provides in a productive way and we are stuck with being under medicated even tho our labs often indicate that we are 'fine'.

There are some folks who will take some levo along with the NDT as they are transiting to NDT only. I went from levo right to a small dose of NDT and dropped the levo all together. I too suffered horrendous hypo symptoms while on Synthroid (levo) for a year. It was awful. NDT alleviated almost all hypo symptoms in short order.

Some aren't so lucky in transiting. They often suffer from low iron, low B 12, D 3 and/or stressed adrenals. If any of these things are a problem, they also need to be addressed. Study and research all you can. We often have to self-medicate because a lot of docs can be clueless. Knowledge is power.

Don't make any assumptions about dose, the equivalence figures assume both types are equally effective, and they most definitely are not. In any case your 75mcg are equivalent to one grain.

Start with half a grain and work up gradually. You don't need a baseline, it is how you feel that counts. Once you are close to optimal I would go in quarter grain increments.

Once you feel good you can test to keep your doctor happy, or as happy as you can. And remember that once you are on enough NDT your TSH will probably be below range.

I got and take the other Thai ndt from the giant online warehouse with no problems so I'm sure it'll be fine! I was on 75mg levo too and started on 1 grain increasing every other week. It's nearly 6 weeks and now on 2 grains.

Heart rate (I use a free phone app) and bp (same time daily) is useful as phoenix said. Remember you're in charge now and there's no right way/ wrong way of doing it, only the right way for you! Play around and as long as you don't suddenly take a TON i think you'd be OK. There might be days where you'd do something silly (currently I have palpitations because I took adrenals and ndt simultaneously...I woke up late! Silly me), but you live and learn to live another day!

Best decision I've made since...well, since going off the playbook for PCOS but the benefits are so much more enjoyable than the suspect claim of having a regular cycle (urm, yay?). I felt awesome within days so best of luck to you!

Thank you all for your responses. I'll be honest GP doesn't seem to care what I do, I have been going for TSH levels every 3 months and they are up and down, probably the Hashis.. I will let them know when I go on the NDT. I will probably be back with a ton more Q's!

Excellent advice here, they express the right way to do things. I was not given that advice when I switched to NDT, I just took the equivalent dose of the Levo I was on (to 1.5 grains Armour) and I suffered no ill effects. I do not recommend you go "cold turkey" as I did but just saying, the extreme did me no harm.

in reply to LAHs

Thank you, this is helpful, I have been told to gradually increase from 0.5 grain to 2 and see how I feel

in reply to Gillybean129

Yep, that's the right way to do it.

So on starting this, I normally take Levo at night time (75mg), should I take as normal and start NDT (.25 or 0.5 grain?) in the morning, or should I skip this dose and start NDT in the morning?

in reply to Gillybean129

My very non medical advice about when to take NDT is to take the full dose in the morning. The reason I say this is because the T3 you will be getting will make you lively and energetic so taking it before you go to bed is a bit of a waste. It might also keep you awake. So, my vote would be to take it all in the morning. Of course, remember to take it one hour before breakfast with plenty of water - don't take it with tea or coffee, that will affect absorption.

in reply to LAHs

LAHs, Do you take NDT yourself? And if yes, do you take it all in one go in the morning an hour before breakfast?

I ask because this particular regime does not work for me, but if it works for you then it adds weight to the argument that we are all different and what suits one does not suit another.

I take my NDT in two equal doses. Once when I wake in the a.m., and then again mid afternoon. I have tried every possible dosing regime variation and this is the only one that works for me.

Occasionally I need to increase my dose for a day or two. On those days, I often take the extra at bedtime. Doing this does not keep me awake, more likely it helps me to sleep. Being under-dosed on thyroid hormone usually stops me sleeping properly, not the other way around.

in reply to RedApple

Yes I take NDT, yes I take it all in one go in the morning, and yes I realize that "we are all different…….." that is the beauty of a forum like this. If everyone writes in and says don't do such and such because this is what happened to me then it causes people to be very careful before they try "such and such". And , of course, the alternative: If everyone gets great results from, say, taking more B12, then it's worth trying it out.

I think we all realize that this is statistical and there is a possibility that what works for everyone else, may not work for us. That's why we have a forum, to help us make decisions.

in reply to LAHs

Both levothyroxine and liothyronine cause peaks in T3 around one and a half to two hours after ingestion. (And around 48 hours later for levothyroxine.)

The ongoing effects of both T4 and T3 continue for at least several days.

My personal experience was that levothyroxine improved my sleep pretty much from the first dose I ever took - and that was (and still its) at bed-time. If I do get a T3 peak around 2 or 48 hours later it certainly doesn't wake me up and make me feel lively and energetic.

I told my friend today my plans to take ndt, she's also hypo and was staggered I'd take an unlicensed drug from Thailand of all places. I felt judged and doubted myself but if I am careful I'll be ok won't I?

I transfered from 8 years on 125 mg T4 levo, to Nt 1/2 grain of 65 and i feel a lot better, i have one month taking this dosis, because ,even i feel better i feel "something" on my hearth ...if i increase the dosis also I feel a little more of anxiety, so i am waiting more time to increase a little more the dosis ...(.excuse my english i speak spanish)

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