I've got to book in for my annual blood test with my GP. I had my thyroid fully removed in 2008 & I'm on T3 only 20mcg 3 X day.A few months ago I swapped to NDT Thyroid-S & I've stopped taking my T3. I feel better than I've felt in years.
My question is how long does it take for NDT Thyroid-S to leave your system?
Thank You
If you are feeling so noticeably better, are you absolutely certain you want to game the system in order to achieve the blood test results they want?
We have seen far too many members change dosing (in many different ways) in order to hide something. And not all have ever returned to being as well as they were before they changed that dosing.
This isn't to suggest you don't have a difficulty with respect to your GP. Just don't want you to see another member go downhill.
Thank You for the advice. I've fought so hard over years like a lot of people to stay on T3 only like a lot of people. I was poisoned by Thyroxin! I felt like the walking brain dead for years & I've got a bit of my sparkle back with NDT. I asked to be " trialed" on NDT but was refused. It makes perfect sense what you are saying. Thank You for the good advice.
I hope others who have been in similar situations also reply!
(I haven't - as I take levothyroxine only.)
I asked to be " trialed" on NDT but was refused.
assuming you are definitely settled on NDT and don’t mind loosing your T3 prescription
I would say you have changed to NDT
If people who change to NDT and do better they need to tell every medic they meet …..otherwise it will never be accepted as relevant and effective treatment
Thank You very good advice. I am settled on NDT & I don't want to lose my T3 Px because the only other option is the Thyroxin poison. My GP refuses to listen to me about NDT. I saw a private GP years ago about the menopause & they 100% understood about T3, T4 & NDT. I'm thinking about going back to them to ask about a NDT Px. Thank You
List of thyroid specialists and endocrinologists, some are NHS and a very few NHS endocrinologists will prescribe NDT
healthunlocked.com/thyroidu...
1787 prescriptions for Armour in England in last year
openprescribing.net/analyse...
315 prescriptions for Erfa in England in last year
openprescribing.net/analyse...
Wonderful Thank You for all of the extra information
By comparison
Almost 63,000 prescriptions for T3 in England in last year
Typically 6 prescriptions per person per year
openprescribing.net/analyse...
Wow! Interesting Data. Thank You for the link
When I asked my endo about NDT a few years ago he asked me what that was! 🙄😡
I believe you. I don't think they are taught much about the thyroid especially the history
I take armorthyroid and have been on it for years. I had a new doc change me to a something else. It was horrible and she ignored my complaints and I fired her and went to a specialist who returned me to armor. All is well again.
I'm pleased you got sorted & are feeling better again. As we all know doctors can be dreadful
I just can't, when it comes to doctors, I just can't.
Exactly
Hello Lily :
I think it takes a good couple of weeks, probably longer - but why jeopardise your current good health for the sake of a blood test designed for medication that you can't take ?
Do you have there a blood test reading since switching to NDT that you feel happy sharing with your doctor showing a TSH, Free T3 and Free T4 reading ?
I also self medicate and advised my surgery accordingly offering to send them copies of my private blood tests to put on my medical records - but I never received a reply - and T4 eventually disappeared from my prescription.
Thank You for the advice. I've not had a blood test since swapping. Like you say a blood test designed for medication I can't take! I thought it was about 3 weeks to leave my system. The NDT has me mentally & physically in a better place so I can handle a "dip" for a few weeks. Thank You
You haven't a thyroid - nor have I !!
T4 - Levothyroxine takes around 6-8 weeks to fully leave the body :
T3 - Liothyronine leaves the body much more quickly :
NDT is a mix of T3 and T4 - with each tablet/grain containing 9mcg T3 + 38 mcg T4 :
The NHS yearly function test is generally just a TSH and an occasional T4 -
When optimally medicated on NDT your TSH will likely be suppressed -
as it probably was when you took T3 only :
and your T4 likely mid range :
If you are expecting your TSH to bounce back into range - there is no guarantee this will happen - as it can take months, if it responds at all:
I too was refused NDT by my surgery and the hospital also refused me both NDT and T3 and why I self medicate.
Wow! Amazing info. Thank You I've taken a screenshot. After reading the posts I'm just going to do it by how I feel. I'm supposed to have my blood test at the end of August but September will be ok. Thank You so much for your full breakdown explanation
I'm on ndt after RAI. My blood test always horrifies my gp as my tsh is 0.01 or less! However, I wouldn't stop it for any length of time just for my gp. I try to leave taking any ndt 12 hours or more before my blood test. But still my tsh is negligible. My T4 & T3 levels are always within range. We have to try to educate GPS rather than try to fit their mould.
You are so right we have to educate GP's rather than trying to fit in their mould! After reading all of the wonderful advice I'm just going to reduce my NDT gradually & go for my blood test when I feel my blood will be right! I do know how crazy I sound. Thank You for your help & advice
Suppressed TSH unlikely to respond at all within 6-8 weeks
And may not move at all
If it did move unlikely to move more than to 0.02-0.04
Very Good Point. Thank You
What are the last blood results your GP have on record for you on T3 only ?
Do they usually just test TSH or do they also do fT4 and/ or fT3 ?
Do you know what your blood result are now on ndt ?
if you don't know what they are now , you could delay GP test for a little bit ( 'go away' for 'a couple of weeks' and say you'll rebook when you get back) and in the meantime get a cheap fingerprick TSH / ft4 / fT3 ... that way you'll know what sort of numbers the GP is likely to be seeing ... they might not cause problem anyway, in which case you don't have any need to meddle with dose.
if the TSH is similar level to what they are used to , then GP test may not prompt anyone to say anything anyway ( they may think it odd that the fT4 has gone up ~ if they have time to do any 'thinking' about it ~ but honestly they are just as likely to not notice anything apart from the TSH level)
presumably they are used to seeing a fairly low/ supressed TSH level if take 60mcg T3 ?
is the T3 prescribed on the NHS ?
They'll only usually start sqwaaking about fT4 is if it's very high in range , or over-range .
so ........... if your TSH is similar to usual and you fT4 is 'higher but not too high' and someone does mention the fT4 result is weird ~ just mutter something vague about "trying a bit of levo added to the T3 the other week " and look confused.
...... if the TSH is significantly lower than they are happy with, then it's more tricky to deal with,.
I was just thinking the same thing. I wonder how many doctors would be surprised to see a decent level of FT4 in someone who is only supposed to be taking T3. My cynical self says “not very many”. And a suppressed TSH is quite easy to explain if you’re supposed to be taking a replacement dose of T3.
I’d be minded to see what happens @Lily905. If you get someone who panics about suppressed TSH then they’re going to reduce the amount of liothyronine prescribed anyway (though you might be able to argue to retain it, depending on their ability to understand how the feedback loop works).
Wow! Thank You loads of information & ideas. I've never had my blood done privately & they never tell me my blood results. I've a feeling I'll have to have a few blood tests done because I've stopped the folic acid I was on for over a decade! Plus I've stopped buying Vit D for my osteoporosis because I want to know if I need to take it & if I do can they prescribe it. Very good advice. My results have been "off" before & I know the reason was the very cold & very hot weather messes up my T3 blood. My T3 is NHS Px I've had a very long hard fight to keep it for many years like a lot of other people on here. I am going to delay getting my blood done till just before I need a new Px which is about mid September. Thank You for your help
Hi - I switched to NDT about a year and a half ago. I told my gp when I went for an appointment ( not about thyroid) and she was visibly annoyed, said she’d never heard of NDT, didn’t ask how I felt, just said ‘whatever’. Since then I’ve not been called for a thyroid test . If I do get called I am going to refuse - it will just show that my tsh is suppressed ( my t3 and t4 are optimal).As they don’t test t3 and t4 they will think I’m hyperthyroid- I don’t need the drama and the bother of explaining. My private gp has written letters to my gp , but I’ve chosen ( my choice) not to pass them on. It’s so sad that the nhs won’t accept that some us do so much better on NDT. The fact that we are prepared to pay a for an alternative treatment must mean something.
It is a shame we are prepared to pay for alternative treatment to feel better & the NHS won't accept some of us do much better on NDT. What an experience you have had with your GP! Thank You for sharing. I feel a lot better about my blood test now I've shared my worries & received a lot of help, advice & information here. Thank You
Agreed, I believe it is a false economy as the NHS could save thousands on all the investigative procedures carried out which would not be required if individuals were correctly medicated: scans, ultrasounds, endoscopies, the list is endless.
I am in a similar situation to you. I have no thyroid and have been taking Thyroid s for years.
Because I live in France all NDT is banned here. I have to visit my GP every five months and collect my prescription for Levo plus T3 and also have two blood tests a year.
It's a good idea to say nothing rather than mess with your life and health. Good to know that you are feeling so much better on NDT.
Your situation is a lot worse than mine. I didn't know NDT was banned in France plus you have two blood tests every year! At the moment I'm not ready to say anything to my gp. I'm so pleased I decided to have a proper go at NDT & stop my T3. I do feel so much better. Thank You for sharing your experiences
Your welcome. My situation is not really worse. All of my medications, operations, scans etc are free here in France because I have no thyroid. Same day face to face appointments with a GPand one of the best health care systems in the world. Shame about the NDT. I just order mine to be sent to the UK and my friend posts it on, so not to bad. I am so pleased that you are doing well on Thyroid s. I take around 2.25 grains a day split into two doses. How many are you taking. My FT3 is always around 6 plus for me to feel well.
I'm pleased your health care care system is treating you well & you have a system in place to get your NDT
Brightness, off topic but you're feeling better again on a new batch?
My personal opinion of why NDT suits me better now than T3 is because I'm completely on the other side of menopause. I trialled NTD when I was in the middle of my ten years of menopause hell & I didn't think NDT helped at all where T3 worked perfect.
Yes thank you I am on a new batch and they seem fine now, different though in colour and still shiny, but OK
I'm pleased your new different batch is working ok
So wonderful to hear Brightness, did your dose change at all?
No I may have to change it by a quarter but not much at all, thank you.
As someone that has had to make sudden changes back and forth due to finances, abysmal labs, finally getting prescriptions & border issues, I do wonder if you are taking for granted that your body will just bounce back into its sweet spot when the lab game is over.
I completely understand you not wanting to lose your liothyronine prescription - totally get it because one never knows when laws for importing could change for any country or our alternative sources. And I too am one that could never have any quality of life on levothyroxine alone (no thyroid as well). But have you considered that you could put your body through this and something not thought of could backfire. Because we know we are not always dealing with fully educated and rational minds at times in these appointments and testings. I do wish you all the best and am very happy that you have found a hormone choice and level that works for you.
You make perfect sense. I've had an awful lot of good advice & information on this post. I've been cutting down my NDT gradually & I can take my T3 if I dip. I'll notice if by brain & body stops to function properly. I know I'm doing the right thing for me. I know I will bounce back again when my blood tests are completed. My confidence is because like a lot of people I've had a very rough journey since I had my thyroid removed in 2008 & now mentally I've got myself back to a very good place mainly because of NDT. Thank You
I take Thyroid-S and my GP goes silly over my TSH at 0.01, and does not know what to do so books an appointment with the Endo. The appointment wait time is around 35 weeks, and if I get a letter for an appointment, I just cancel it and go my merry way.
The cancellation does not seem to show up in my notes...
I've been pulling the "old age" card & emailing endo when they kept on trying to stop my T3 & put me back on that Thyroxin poison! I emailed everything, every date & all about the T3 price scandal. Adding I would be happy to have a NDT trial & they won't let me. Endo don't seem to realise we know our thyroid medications & what does & does not suit our bodies. A lot of us probably have been on thyroid medication longer than they have been qualified.
I was diagnosed by a private doctor when my blood tests looked 'normal' so the NHS has never accepted the diagnosis, and to try and clarify things, I have seen two endocrinologists (one private, one NHS) who asked me to lower my dose of NDT to see what would happen. Each time my TSH remained suppressed but I became hypo very quickly, and it took me weeks to get back to where I had been.
Also, the first time, I had a vitreous detachment in my right eye, and the second time I had one in my left eye, which was scary and the resulting floaters are permanent. I can't prove any correlation but it seems a strange coincidence.
Therefore my advice is definitely not to stop your NDT. I don't know whether or not you should tell your GP what you're taking though. I'd be tempted to wait and see how different the blood tests results are and what their reaction is to them.
I'm so sorry you have been so ill & have had very traumatic experiences. I'm 100% sure I will be ok. Thank You.
I've hardly told anyone about this & when I do they don't believe me. I Disassociated with my PTSD during August 2019 & I could not get my T3 for free & I couldn't afford to buy any so I did without. I was so ill with my PTSD I thought I was going to die because I have no thyroid & no thyroid prescription for maybe a year or so. During that time I felt less ill than I did when I was on Thyroxin & it poisoned me. I do know my body & how it reacts on & off different thyroid medication. I thought without thyroid medication I would go into a coma & die within a month & I was ok.
I think that if you have a suppressed TSH for a long time it can take months to alter it. I don't have to worry about a suppressed TSH as after my thyroid was removed a had a letter from my surgeon stating that my TSH was always to be suppressed because I had thyroid cancer. One was sent to my GP too. When I moved I gave a copy to my new GP. They don't like to disagree with a top Professor Surgeon. I always get a private blood test anyway so that I know in advance what my levels are like. During Covid I couldn't get my NDT Thyroid s and my TSH was still suppressed after nearly 10 months.
Thank You for your reply. Now you've mentioned it I'm sure I have a letter from my Professor Surgeon saying my TSH was always supposed to be suppressed. Years ago I had to pull it out because my GP didn't understand. Thank You
It's a pain copying everything, but it's a good idea I hope that you find yours that's the only reason that the GP's here prescribe me with T3 so I know it works, it should work for you too.
It's a real good idea. I've got all of my important thyroid letters in a file so no problem. Also all of my thyroid letters are on my gp's system. I took in a stash of letter's when I moved & enrolled at my new surgery to prove I was T3 only & Thyroxin was poison to me. Thank You so much for your help
NDT Thyroid S or Thiroyd
How long after stopping thyroid meds will it take for levels to settle?
Thyroid S how do you take yours?
how long does it take for them to get your thyroid medicated right
How to take THYROID S 
