I had a bit of a rough 2022. I got a new job after having been made redundant at the start of the pandemic, but really struggled to go into the office once a week and had an unsympathetic boss who thought I was lying about the condition and was a firm believer in presenteeism. I spoke to my NHS endo at my June appointment to tell him I was struggling with work and to ask for a dose change from 112.5 T4 and 10 T3 to 75/15. Instead, I got a letter for an appointment in Jan 2023. I had to quit the job.
Randomly, an old friend who takes NDT got in touch around this time and feeling desperate and in need of some meds to adjust my dose myself, I ordered NDT from abroad. I started taking one grain in the morning with a bit of levo so that I could stockpile my prescription T3 and take a bit of T3 in the afternoon. I start a new job in February and was worried that I wouldn’t be well enough again... In a fit of sod it, I took a second grain of NDT in the afternoon 5 days ago and since switching to this regime (whisper it) I feel well…
The way I see it, I’m effectively on 76 T4 & 18 T3… and it’s good, so far… I am finding NDT a bit more stable than T3; slightly less “whoosh”. Let’s hope it holds… If anything, I think long term it could be fractionally too high a dose, but we shall see…
I would be interested in any other experiences of NDT? I am find myself pondering why it seems to be working; it could be that 9 mcg T3 a time works well for me, it could be the split dosing, it could be all sorts of things…
I am trying not to think that I’ve finally cracked it, but it’s hard not to be hopeful!
Lotika x
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Lotika
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NDT (was prescribed from about 1892) saved many lives since it was invented and am sure the doctors prescribed due to the symptoms alone as there were no blood tests then.
It was the knowledge of the doctors who diagnosed/prescribed due to our clinical symptoms alone.
I have read a few months ago that in the UK NDTs have been withdrawn and I hope this isn't the case..
Did you used to split your T3 and T4 medication - am and pm ?
I failed to get either T3 or NDT prescribed - I'm with Graves post RAI thyroid ablation in 2005 - and started self medicating around 5 years ago.
I find NDT ' softer on my body ' and feel more like I'm wearing slippers all day than high heel stilettos two sizes too small - i know, imagine that for any length of time.
Could be I just didn't give myself enough time finding the right balance of Liothyronine and Levothyroxine - but whilst I can buy NDT I'm staying put.
As I understand it - the T3 and T4 hormones in NDT are contained within the hemoglobin molecules and more slowly broken down in the liver - hence the ' smoother ' ride.
No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are maintained at optimal levels.
Yes, I was splitting the T3 dosing, but this way, I figure I am also splitting the T4 dose, whether that makes any difference, I am not sure! Interesting that you also find it a bit more gentle than T3. I am not getting my old afternoon slump any more.
I am not sure where my vitamins are at right now, although I’ve been doing the right things in terms of supplements, so we shall see. My ferritin is rarely sexy, and I think I need to work harder at eating liver again!
T4 is a storage hormone whereas T3 is the active hormone that runs the body and some of us struggle to convert T4 into T3 :
Optimal vitamins and minerals help with conversion of T4 into T3 but conversion can also be compromised by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.
A fully functioning working thyroid would be supporting you daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg [lus a measure of T4 at around 100 mcg.
T3 is said to be around 4 times more powerful than T4 - with the average person needing to find / convert around 50 T3 daily just to function.
Some people can get by on T4 only :
Some people find that T4 seems to stop working for them after a while and need a little T3 added to their T4 prescription to restore hormonal balance and well being.
Some people can't tolerate T4 and need to take T3 - Liothyronine only :
Whilst others find their health restored better taking NDT which contain all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains.
Having no thyroid I found taking NDT was like restoring and turning back on my pilot light which in turn flicked a switch in my brain, body and metabolism.
Lotika, I’ve got no personal knowledge of NDT, but I just wanted to say that I’m glad you are finding it helpful. Long May the positive benefits continue!👍
I’d just say, a one grain increase is more than I would try in one go… remember that because there’s thyroxin in there you can’t bail out quickly if it starts to feel too much, due to the longer half life of t4. Now you feel an increase is the right thing, you could if you wanted to, go down a bit, perhaps reduce by 1/2 grain and see if the good effects continue, just to pre-empt potential occurrence of feelings of over treatment, which are really unpleasant.
Yes - the dosing regime with NDT is slow and low and it's generally recommended to dose in 1/4 grain increments, which I built up weekly and monitored myself on temperature, blood pressure and pulse symptoms.
There comes a week when you feel not as well the previous week, maybe a little edgey and uncomfortable in your skin - so you drop back down to the previous weeks dose and stay on that dose and take a blood test after 6-8 weeks and see where your T3 sits compared to where it was before you started the experiment.
Obviously you have swopped treatment options so I'd just suggest you play around with a 1/4 grain adjustment up or down now and it takes a good few weeks for the NDT to settle in the body so just go slow.
My blood pressure and pulse remained constant while I tracked my temperature rise from 35.4 to 36.6 where if hovers most days now, 5 years on.
NDT was the original treatment option for hypothyroidism and Big Pharma launched T3 and T4 on the back of the success of NDT in the middle of the last century but your endo may have little or no knowledge of NDT as I read Big Pharma sponsor the training in some medical schools though both NDT and Liothyronine are meant to be available on the NHS.
thanks, pennyannie; I have reduced the pm dose to .75 of a grain as that’s my instinct for wha my dose could be at the lower end, comparative to various T4/T3 combos. Resting HR has remained fairly stable but I was taking 15-20 T3 before and 50 T4. I have figured that the T4 sweet spot is somewhere between 62.5 - 75 for me and a grain and 3/4 works out at around 66, so it makes a level of sense, particularly as I’m worried that the 2 grains, once the T4 settles in 6 weeks, could be on the high side. 🤞
With NDT it's more about how you feel than blood test readings and the blood tests and guidelines were introduced to be used when Big Pharma's launched its T3 and T4 thyroid hormone replacement options.
If you want to track anything - you track on the T3.
NDT was used successfully for over 50 years before we even had the science of blood tests or know about thyroid gland hormones and you were simply treated to the relief of symptoms and dispensed various sizes of little nuggets of dried pig liver to chew on.
In my experience on NDT my TSH is low suppressed at 0.01 - my T4 is proportionately lower than it was when on T4 - Levothyroxine but my T3 is proportionately higher than when on T4 - Levothyroxine :
In fact after 6-8 weeks on the same dose of NDT my TSH remained the same but my T3 and T4 swopped places and my T3 came in at 100% with my T4 coming in at 25% through the ranges.
I am so glad you have found something that works for you. I likened changing to NDT as removing the cold wet overcoat and stepping into the sun. I even got some of my brain back which was lovely. Take any change gently and listen to your body - I find if I start worrying about silly things, I drop back a smidge, and if my tinnitus gets very loud, I up a smidge. This works for me but you will have different signals. It takes time, but it is SO worth it! Hug.
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Its a miracle ! well it is a bit odd anyway
