Sorry if this has been posted before I have tried searching but can’t find it.
I have been on thyroxine for many many years but just felt in the last few years I have been struggling more.
Also my levels were always bottom of range for T3, higher in range for T4 and the gp had concerns over my tsh as it was just outside of range making him want to reduce my levo which was 150mcg
I have recently been referred to a thyroid consultant who in May put me on half grain (30mg) of ERFA NDT and to take 100mcg levothyroxine.
I am trying to get my recent blood results with him as I stupidly didn’t make a note at the time. He seemed to think it was ok but t3 still wasnt where it needed to be and tsh was still slightly suppressed so changed me to 1 grain of NDT (60mg) and 50mcg levothyroxine which I’ve been on for nearly 2 weeks now. I can’t say I feel any better in fact I’ve been so drained but I have just developed a virus and also work has been incredibly busy so it could be external factors. Does the conversion of reducing 100mcg levo and replacing with 60mg Ndt mean I would just feel the same or should I be feeling better with more T3? Assuming my T3 is a better level as still Awaiting the results but I’m assuming as ndt contains t3 it should be better???
Anecdotally I ran out of ndt around mid august whilst on holiday so reverted to just my original dose 150 mcg levo whilst I waited to get it back. In that period I had a thyroid test with nhs and the t3 level was 3.7 (range 3.1-6.8) but tsh 0.02 - as ever the tsh level was the only concern from my gp. My anxiety started getting really bad and when I restarted Ndt within 1 day my anxiety was significantly better - is that coincidence?
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NDT is a slow build and an option to both T3 and T4 thyroid hormone replacement.
NDT has a balance of T3 and T4 within each grain/tablet and the original treatment for hypothyroidism and used successfully for over 100 years and on which Big Pharma launched its T3 and T4 options in the middle of the last century.
No thyroid hormone works well until your core strength vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels so this might be an area that needs to be checked out.
I don't think there is a ' straight swop ' from T4 to NDT as we all absorb and utilise the medication differently - any swop will be a guess estimate.
The other issue to consider is that of dealing with the autoimmune component of Hashimoto's, and understanding you will be liable to erratic ' swings ' in own thyroid hormone production as this auto immune disease systematically damages and ultimately destroys your thyroid gland.
Many people find the research of Dr Izabella Wentz very helpful -
hi thanks so much for this and yes good point on hashimotos as I forget that this will impact. Maybe that explains why my t3 was so low when I reverted back to normal levo dose when I ran out.
My consultant said my vit d was ok as had increased from 30 to 60 following taking supplements.
He didn’t really spend much time going over my results to be fair (until I asked what they were) it felt like I was whipped in and out but I guess I should be grateful he’s trialled me on Ndt?
In terms of the other vitamins he didn’t test those but they were done on nhs in august and were as follows
B12 - 464 (range 200-960)
Ferritin - 148 (range 15-350)
Folate - 10.9 (range 3-18)
The gp didn’t see any issues with these results the only thing they were concerned about was my tsh at 0.02
GPs reference is the ranges, and if your results are in the NHS range the doctor is not obliged to offer a prescription - and some of the ranges, in all honesty, are too wide to be make any sense and vitamins and minerals are not taught at medical school.
I now aim for a ferritin of around 100 ; folate at around 20 : serum B12 500++ and vitamin D at around 100 : and around a good 50% through the range.
On seeing a TSH at 0,02 and under the range most doctors in primary care will -
assume and believe - wrongly -
that you are overmedicated and suggest a dose decrease in thyroid hormone replacement which is totally wrong and the biggest hurdle we all face.
You are only over medicated if your T3 goes above the reference range -
The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was not intended to be used is isolation to measure anything once on any form of thyroid hormone replacement.
Your dose must only be adjusted on reviewing a TSH, Free T3 and Free T4 blood test.
On taking T4 levothyroxine only we generally feel at our best when the T4 is in the top quadrant of the range as this should convert to a good level of T3 at around a 1/4 ratio T3/T4 .
When dosing with synthetics - T3 - Liothyronine and T4 - Levothyroxine your results will look different :
Similarly when dosing with NDT your results will look very different but what matters is how you feel and the relief of hypothyroid symptoms.
On taking any thyroid hormone replacement containing any form of T3 your TSH will likely be low, suppressed and under the range - this does not matter as you must track on your Free T3 reading and where you need your T3 to be to feel well and to relieve symptoms is the goal and that which we all strive to find and maintain.
really? I didn’t know that? So do you mean the results and ranges are really more associated to when taking levothyroxine ? Or am I reading this wrong.
My tsh levels rarely change with dose changes - I wish I knew what it was all those year back when I was diagnosed as I had a huge goitre so that’s how it came to light. I hadn’t realised I was sleeping a lot
What happened to the goitre - did you have your thyroid surgically removed ?
There is no mention of a goitre on your bio ?
What didn't you know - can I explain it another way ? ?
I don't wish to confuse you :
The TSH used in isolation is not an accurate measure of anything once on thyroid hormone replacement as then we must be dosed and monitored on our Free T3 and Free T4 readings ?
Especially if you haven't a thyroid as your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop - on which the TSH reading relies on - is broken as there is no thyroid there to complete the circuit and the feedback loop disabled.
The ranges were introduced alongside Big Pharma launching it's own synthetic T3 and T4 thyroid hormone replacements, on the back of NDT in around the middle of the last century.
NDT has been used successfully used for over a 100 years and long before the ' science ' of blood tests or ranges, or Big Pharma.
NDT is pig thyroid dried and ground down into tablets referred to as grains and historically you start with a 1/4 grain and slowly increase by 1/4 grains over a period of several weeks until you find the right dose for you.
My thyroid wasn’t removed and when i saw my consultant in June he examined my neck and concluded I have a small goitre still - I’m assuming that it reduced though from taking thyroxine as it’s not as big as it was 20 years ago (I was 19 at the time it was discovered) - the only thing they did was an ultrasound back then and confirm I had a goitre and that it was hashimotos.
I’ve got my results from my consultant.
So my vit D is 80. (Range 50-200) so that’s better as was 31 in April
TSH <0.01
Free t4 - 22.2 (range 11-26)
Free t3 - 6.6 (range 3.9-6.8)
So the Ndt has definitely improved my t3 levels as when I ran out it went to 3.7, and for the last few years had hovered between 3.6-4.8.
in all honesty I have been shattered lately but I’ve just picked up a virus and I’ve been doing 2 peoples work for 6 months so it’s difficult to say - hoping things will calm down so I can properly assess how I’m feeling energy wise. At the moment I’m so tired I’m asleep most nights by 8.30 - no energy for the gym etc. I did also run out of Ndt towards end of august for about 2-3 weeks and in that time my t3 dropped to 3.7 and anxiety got really bad.
Weight gain is about 2 stone over the last 2 years - and struggling like hell to drop it. But with following slimming world I’ve managed to lose a couple of lbs in the last couple of week so maybe the Ndt is kicking in and helping my metabolism.
I feel less reliant on citalopram having Ndt and whether it’s psychosomatic but my anxiety got bad when I ran out of Ndt and to the point it got awful (I got to the point where I had to take diazepam, codeine and have a couple of drinks it got that debilitating - I know that’s a really bad combo but I felt dreadful that night) and literally within 1 day of taking ndt again my anxiety had significantly subsided.
When I started taking Ndt again my t3 levels went from 3.7 which was measured on 20th august , restarting Ndt on 10th September and being at 6.6 on 29th September
The brain and cognitive functions need the lion's share of T3 and if levels of T3 are low the mental and psychological issues can be profound.
Is your specialist happy with these results or suggesting some adjustment ?
Apart from the already detailed vitamins and minerals having to be maintained at optimal levels to help in the conversion of T4 into T3 your conversion can also be compromised by any physiological stress ( emotional or physical ) inflammation, depression, dieting and ageing.
he seemed happy but he’s trying a different combo of 1 grain Ndt and 50 mcg levo as I’m still experiencing symptoms and the 3 months on Ndt with 1/2 grain and 100mcg levo wasn’t relieving enough of my symptoms.
So far I feel ok on 1 grain and hoping when work calms and I kick this virus I will start feeling more energetic. I’m guessing my t3 will go above range with 1 grain if I’m at the top with 1/2? Or will the reduction of levo stop me going over?
That makes complete sense in terms of mental and psychological issues as I can manage much better on Ndt without taking citalopram whereas when I stopped Ndt my anxiety went through the roof - so interesting
Good - your T4 needs to come down and reducing this and compensating with a little more NDT might do the trick :
Some people just need a little T3 to kick start their conversion of T4 whilst others need more - it's a fine line and may take some time getting the balance right for you.
Are you splitting you dose or taking it all at once, first thing in the morning with a glass of water, and then waiting around an hour for maximum absorption before eating or drinking anything ?
It is said that 1 grain NDT is around the power of 100mcg T4 - but if you can't utilise the T4 and convert it to T3 it's a bit of a pointless comment anyway.
I take NDT and switched from 125mcg T4 overnight - and slowly built up my dose in 1/4 increments weekly.
I monitored my pulse, blood pressure and temperature twice daily - my pulse and blood pressure remained constant and my temperature slowly raised itself from 35.4 to 36.6 where it hovers today some 5 years later.
Maybe you might like to do this as seeing improvements in physical symptoms gives you some idea and control over your own health.
thanks a good idea actually keeping an eye on some other stats - I have been keeping an eye on my heart rate via apple health - it’s usually around low-mid 50 though looking at the last few months it’s crept to mid 50.
I keep getting worried being on NDT what if bupa won’t continue letting me see my consultant as I can’t see I’ll ever get my gp to prescribe it. My levels on paper are definitely improving.
I take mine every morning when I wake up with water or sometimes squash and then I don’t really eat breakfast so there would be at least anhour before eating and generally an hour before drinking any caffeine - sometimes it might be nearer 30 mins but I try to avoid it too close to taking my tablets. I always take any other tablets separately so vit d generally when I go to bed and citalopram (which I’m taking way less frequently now and convinced that’s due to Ndt )
I don’t split them so take the Ndt and levo together are there benefits splitting?
Did you struggle then getting level on levo? Are you under a consultant or gp?
I just take NDT and self medicate, buying my own thyroid hormone replacement - and Doing it For Myself:
I don't know about the BUPA set up :
Yes try and kick the anti depressant and look to eat good fats and no processed foods - if you did have Hashimoto's - did you get the antibodies run - you may need to look at food intolerances as per Dr Izabella Wentz 's research as previously linked.
that’s interesting to know. Are they easy to obtain yourself? My sister is under active too but they only ever test her tsh and she feels under prescribed. She’s finally doing a private test. She works for the nhs so I can’t imagine she’ll get any referrals to an endo so I count myself lucky.
In terms of hashis - it was confirmed going back 20 years ago alongside the goitre but it’s never been brought up since. I had a private thriva test 18 months ago and my TPOAb was 29 (range <34) and my TgAB was 1391 (range <115) and I shared with GP but they didn’t really look or say anything. Haven’t retested as didn’t know if this kind of thing needed testing regularly
Once established that you are dealing with a thyroid AI disease there's no need to repeat a blood test for the antibodies - as they tend to wax and wane throughout this process until the gland is fully disabled.
It doesn't actually change anything anyway, but it can help getting acknowledgement and a prescription if your TSH, T3 and T4 ' look ' ok - and sitting in the range somewhere - as thyroid knowledge seems very poor - with some doctors not clued up on how to read blood test results and/ or understand thyroid hormonal imbalance.
There is no way of halting the progression of this AI disease and the treatment is to start the patient on Levothyroxine as the gland becomes less and less productive and with the patient experiencing symptoms of hypothyroidism.
There is said to be a genetic predisposition so yes, your sister may well have thyroid antibodies as well - I've Graves Disease another thyroid AI disease diagnosed through different antibodies being over range and positive and my sister 13 years my junior developed Hashimoto's after the birth of her fourth child.
Many people seem to be undermedicated on T4 - Levothyroxine and why in some part why this forum and Thyroid UK - the charity who supports this forum now has over 127 thousand members.
Once on thyroid hormone replacement the NHS just runs a yearly follow up test which is just a TSH which doesn't say anything of any value seen in isolation.
If you question further you likely leave with anti depressants as some sort of a consolation prize as it seems a common second line treatment option and it's suggested it's all in your head, which is dismissive when in fact the brain and cognitive functions demand a decent level of T3 in order to function.
I have a similar problem with regards to t3 - mine has been in the 3's for the last 2 years ( range 3.1 - 6.8) and my tsh either low or suppressed due to the fact that I have secondary hypothyroidism and my tsh was low to start with. I saw a consultant back in January, had t3 test in May and am still waiting for a follow-up appointment about that. I've been told there's no chance of NDT and t3 doesn't seem to be in the offing either. Yet another postcode lottery. All anyone seems to care about is tsh and the only medication on offer is levothyroxine which doesn't work for me. Did you have any problem getting NDT?
I went through my work bupa as managed to get a referral from my GP. I’m not sure they’d have referred me via nhs. For years they have challenged my tsh levels even though my t3 was low. When they reduced me to 125mcg levo my t3 went to 3.6 and I felt awful and my tsh was still “suppressed” they wanted to go lower but I managed to persuade them that I felt awful and they put them back up again and made a note that they had discussed the risks of over supressed tsh but that I wanted to go back to 150 mcg
When I had the t3 test in May I didn't get any notice so I'd already had my levo 5 hours earlier. I'm worried that that will affect the t3 result. I've been doing Medichecks tests since the first lockdown (wasn't prepared to have 3 goes before the lab would test t4!) and I'd printed 2 years results of t4, t3 and tsh with the same range as the NHS but I'm pretty sure that if the NHS result comes out higher that's the one he'll believe. Why is it all such a battle when all you want is to feel human again!
I think they just don’t understand because their focus is tsh. There a lot of info on here that might help you but I’ve found talking to my gps that they are not completely dismissive but t3 levels really doing mean alot - I’ve managed to keep thyroxine at 150mg before as I explained how bad I felt lower and despite still being low in t3 there was no way I’d get anything extra because in their eyes they’d already been lenient on my tsh levels - my tsh barely moves irrespective of my dose. When I shower my thriva results and thyroid antibodies which were very high they didn’t react at all to them in terms of understanding that my thyroid issue is hashimotos.
Good luck I hope you get some help - are you getting full bloods and antibodies done privately
Yes, it just saves so much hassle. Doesn't matter what my gp puts on the blood test form, 9 times out of 10 the lab still only do tsh and that's that. The NHS is a bit sniffy about private testing but at least I have some idea what my levels are. And I get my results in a couple of days, rather than 5 months! The trouble is it's so hard to get them to understand when you try to explain how you feel. They just look at the ranges and so long your levels are within range, nothing's wrong. Even if you're scraping around at the lowest levels, they'll still tell you that you're within range so there's no problem. Makes you wonder whether doctors understand the concept of 'range'!
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