hi all
it’s been almost a year I’ve been working on my Endo to get t3 on the nhs.
Yesterday was a good day and after a lot of work taking information had him watching videos and not giving in.
Because he tsh only and a hard nut to crack I’ve come away with a script for t3.
And im now on 25 mcg twice a day.
That is brilliant news 👏👏😁 well done you! We all have to take on a bit of GP and Endo training
Presumably you have been buying your own up to now as 25mcg twice a day would be a massive starter dose? 🙃
It's a massive dose! Nevermind starter dose! 😵💫
Not if she's on T3 only. That would be quite a normal dose.
That's true. Had assumed T4/T3 combo. 😁 Too used to reading on here about useless ends prescribing enormous starter doses. 😆
I’ve kept my t3 at top of the range 6.8 and 6.9. So it’s not really a big difference to what I’ve been doing anyway for the last two years
Just get a script and do not worry about buying it myself now.
I know that this is a hard one to get.
Well done; it must've been an enormous challenge to get it! 🥳🥳
Almost 12 months I’ve been working on this.
Taking notes 🗒️ proof from different doctors.
On appointment I told him that it’s my time you sit and watch this video explaining about t3 and tsh is not a good test from a professor doctor.
Just happy to get him on the same page has me.
And I know if im not right to get it checked quickly.
Hi there yes I’ve got lots here of my own still
I have told my gp and Endo that I’ve been taking my own also.
He asked me in June to stop and see what my levels were. At the time I was taking 150 mcg t4 and 25 mcg t3.
The next blood test and appointment put on 200 mcg for my size 13.6 nice guidelines
I have had to remind him about that.
My tsh was out again yesterday and I pushed for a t3 script.
I’ve told him that I will test again and see him in march next year.
Well done
So are you now on T3 only or still taking some levothyroxine …..if yes …how much
NHS only has 20mcg tablets T3 not 25mcg
See list and current prices NHS pays here
Capsules don’t seem to work well for quite a number of members
20mcg tablets are cheapest option
Always insist on same brand
healthunlocked.com/thyroidu...
Ok I’ve been put on t3 only at 25 mcg twice a day.
I put the script yesterday in my Cemist and it’s a special order they told me. I was happy just to put it in.
I will work out what’s what on the second order for January and see what they give me.
I have worked hard to crack this challenge is very difficult to get on the NHS.
I’ve got enough of my own t3 and t4
Here if I need to use them I’ve picked up on my travels if needed.
Thank you for your help helping me understand this condition so that I could tell the Endo and answer questions quickly.
I will have them Monday.
How much levothyroxine and T3 are you CURRENTLY taking
Don’t change anything suddenly
What are your most recent TSH, Ft4, Ft3
Plus vitamin D, folate, ferritin and B12
What vitamin supplements are you taking
Nothing has changed what I’ve been doing.
You told me 2 years ago that I should be on 200 mcg
I managed to get that on the last appointment.
But a normal day for me is 150 mcg t4
And 25 mcg t3.
That keeps me around
Tsh 0.01
T4 15
T3 6.8
For this to happen I’ve had to change my numbers and stop t3 for my blood tests.
The main thing is that I’ve got the t3 now and no longer need to buy it myself but I’ve got a lot left over now.
Going forward I will be testing private
So I can keep an eye on my levels.
I can’t thank you enough for helping me with this. And helping me to cancel my spinal surgery because I was not safe to go under. Pre- op never put the hand up and apologised about that.
This was a little challenge to see how far I could push it and I did well I think.
You certainly did
Going forward you need to be on constant unchanging dose and brand levothyroxine and T3 everyday minimum 6-8 weeks before test
normal day for me is 150 mcg t4 And 25 mcg t3.
Try this and retest after 8 weeks
you might need a little more Levo and a little less T3
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Yes I remember to stop 24 hrs before I will give it a go.
He has put me on t3 only.
But I’ve got enough t4 and t3 here if I need to use my own 😉
But stop T3 …last 1/3rd of daily dose 8-12 hours before test
Ok I will be asking you when it gets closer
I’m not going to see him before march and if an appointment comes before im going to cancel it I’ve told him.
Because he can’t control the appointment times.
how has endocrinologist advised you reduce levothyroxine ?
That would be massive change to stop 150mcg over night
Generally not a good idea to reduce levothyroxine by more than 25mcg per day …..and wait 6-8 weeks before retesting
I’ve got to swap or change from t4 to t3
I’m not getting them till Monday because my Cemist has had to do a special order.
By then I expect a letter to my gp
And I can always check.
I seen that script and I was out of there 🤣lol.
Or I could call his secretary to make sure.
But I’ve got enough levothyroxine and t3 here anyway im not overly concerned.
If you can remember I had problems getting to the right dose and my wife.
So I picked up them privately.
I’m going to be on 25 mcg twice a day t3 only im 99% sure.
So I will take it in the morning and bedtime I expect.
Just excited to come away with a nhs repeat t3 script 😄
I know now how to check my levels and thank you for learning me. I must have been doing something right to get him to come around for this.
In the next few weeks I will do a private test and see where I am.
Never a good idea to change more than one thing at a time
First you might want to stay on current dose and just change BRAND of T3
Wait 6-8 weeks
Different brands of T3 don’t suit everyone. Especially Roma capsules
assuming you find the brand is ok
Then it might be better to SLOWLY reduce Levo and SLOWLY add more T3
It’s rare to be on T3 ONLY and certainly doesn’t suit many people
apparently it’s very difficult to get
And 25 mcg is an odd size to make up.
Boots told I will need 20 mcg and 5 mcg.
So I got the script back and taken it to my Cemist where I have all my meds on repeat.
And they told me it’s a special order.
And I did not ask for Pacific brands for the moment .
They were having trouble finding it and I was happy they can get some
After this I will know what they are getting and go from here
But I’ve got lots of t3 and t4 of my own here to do my own thing if I need to
I’ve been taking 150 mcg and 25 mcg t3.
I find that works well for me.
And if I take less I start to go dizzy after a week or so.
By then my tsh is over one to five.
It moves quickly up .
But let’s see what they get and I will show you what I’ve had from the cemist.
Hope you have a nice weekend.
Available via NHS... privately there is Thybon Henning but they also only make 20mcg, Roseway Labs will compound a tablet to your needs
Eeyore100,
That image is out of date. I don't know by how long, but probably at least many weeks, possibly many months. I knew intermediately because the whole document has had a massive revision - reorganised, reformatted, revised in every nook and cranny.
The current document says:
helvella - Thyroid Hormone Medicines: UK
Last updated Thursday, 23 November 2023 11:14
Some time ago, I looked back across the forum and saw how many times I had posted medicine information on the forum. But so much is out of date within days or weeks. And I realised that I was never going to be able to go back and update every post. Even if I did, the updated version might clash with the discussion across the rest of the thread.
That was when I realised the only answer was to always link to the one good and true version! 
Please - everyone - always download the LATEST version.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
helvella.blogspot.com/p/hel...
Sorry 🍄 I thought I had followed through to the new version.. I shall delete that route and try again 🤗
I followed the above link and then Google Drive and it came up with the same?
drive.google.com/file/d/1oT...
Try this link!
drive.google.com/file/d/1fj...
(I have updated the blog to use this link.)
Sorry about that - something wrong with my Google Drive.
Oh yes, that works 🤗 you know me 🍄 if there is a hole to fall into I'll find it 🙃
The only slight gripe is that I can no longer fit the whole graph on my screen to do a snip and I can't reduce the size only increase... I'm using a laptop? Nice and clear to read though 🤗
There's nothing I have done to limit your viewing options!
What device are you using?
I just thought to add that... a laptop 17"
What are you using to view it?
If you are using a browser, try Ctrl&- (minus) to scale it.
Yep downloaded.... Oh you star 👏 that does it... whereas the usual two fingers on the mouse pad doesn't 🤗
Aren't we lucky you are such a wizz 😁
I think I'm having a dumb blonde day 👱♀️😆
I'm going to have to look further at this download/version issue.
Will do so and make appropriate changes.
The cost of 25 microgram dosage as "specials" is likely to be very high. Possibly several hundred pounds per prescription.
Any UK endo who prescribes like this would appear either to be ignorant of available products or has no concept of costs.
Specials also often have just a 28-day life before expiry. This isn't "real" in that they slap that on as standard and have never actually checked how long they will last. But it is all we have to base our decisions on.
Boots were right to suggest 20 plus 5 though that would need the prescription rewritten. (And that is despite the fact that 5 microgram tablets are already disproportionately expensive.)
It might even be less expensive to get a special import of 25 microgram tablets than for it to be made up as a special. But we simply do not have access to such price/cost information.
he looked in a thick meds book and told me that I’ve had trouble with this before.
Because my Cemist send me my meds each month.
I taken it there and explained they were hard to get.
But told me they were ordering them and pop them in with the rest of my meds and have them all together.
Endo can not know much about T3 or they would have prescribed 20mcg tablets
5mcg tablets are ludicrously expensive
I would be very careful not to change anything too much or too quickly
Well done, delighted for you.
I'd also be interested to know which video you insisted your endo watch and listen to.
youtu.be/XEB_rGOWsGU?si=N-4...
youtu.be/KiAGg1fc3RE?si=74B...
Say it’s my appointment and it’s now my time.
You are going to listen to this and look at the paperwork evidence.
This proves that what im saying is right this consultant?
Taking a meeting in front of a room full of doctors do not know what he is on about.
Now justify your tsh rubbish it’s not a test!.
I’ve been taking paperwork lots and I was asked to stop taking my own t3 for blood tests.
Oh I just love that guy 🥰
Despair. Sadly it seems he was not, is not listened to. We are now right back to where medics are told to simply look at the TSH result, and diagnose/treat on that alone. T4 is seldom looked at, perhaps only if TSH is suppressed. T3 is ignored.
Thank you very much. Especially for the 2nd link........what a pity this is not part of all endocrinology training.
Yes
I wish I could show you the letter he sent to my gp about that appointment.
Them videos I had him looking at now tell me that doctor is wrong?.
I made sure I had enough information going into that appointment.
I see so many people saying they have the same problem and doctors not giving it.
after seeing that video I know that it was doable.
He asked me just to stop taking my own t3 for a blood test to know what my numbers were.
25mcg is a very high dose. Are you sure he if he’d like you to fail on that high dose. I take 5mcg twice a day which I find more than adequate. Be careful! I’d go slow and low and take your daily dose split with 8 hrs apart. It builds up and if you go over medicated you could feel dizzy, tired, heavy, can’t sleep or get knocked out if you can sleep.
Good morning
It’s definitely 25 mcg twice a day you can see it on the script.
I’m not going to take levothyroxine from what I understand. Tbh I was so excited when I was given the script and I was out of there quickly lol.
I can remember him saying before he do not like mixing them with t4.
I will have them on Monday and I will show you the dose from the label.
I take combined treatment T4 levothyroxine plus T3 liothyronine. I’ve tried T3 on its own and became very symptomatic.
Hope it works out well for you.
what I’ve been doing is 150 mcg t4 and 25mcg t3.
Has anyone been to Addenbrookes endo clinic?
Anyone else been ok on Levo for years, then it stops working?
Been forced to sign on for work with over-active thyroid 
my endo has been amazing from the beginning and is a nhs doctor
