I've put my surgery on the T3 prescribing graph 🎉 and hopefully started a learning curve for them!! They have 3 surgeries which cover a 15 mile radius and 10,000 patients... yet I'm the only one that needs T3??? Really!!
This little line denotes 28 items this year about to become 34 as I request my next lot
Thanks to all of you lovely lot 🤗😁
Perhaps we should launch Pink Plaques for surgeries that prescribe liothyronine?
What a great idea!!
Perhaps if I told them how progressive the are they wouldn't be trying to swipe it away from me 🤣
Brilliant idea!!
It made me look to see how many items of T4 they issue in a year 9,430 yet only I need T3... gosh I'm rare/ special
It's hard to know how many people that is as it is the number of units issued, so if some are on multiple size boxes to make up a dose 🤷♀️
Have you really had 28 prescriptions in a year?
Or are there other patients on T3
Personally I get a prescription that covers 8 weeks = 6.5 prescriptions per year
My GP practice had 32 prescriptions for T3 in last year
I would guess/estimate that’s 5 patients on T3
Total cost £7,527
As my T3 is 20mcg …..that should be approximately £90 per prescription over last year = £585 approx
5 patients on 20mcg should be approx £3000
So either the other 4 patients are on more expensive doses (5mcg or 10mcg) or higher dose……or NHS paying more than the list price (which wouldn’t be surprising)
It isn't prescriptions but units of medicine, so yes 3 boxes every 7weeks (6 at a time) as they issue 5mcg Roma, if the going gets tough it might give me some wiggle room if I throw myself on my sword and agree to 20mcg tablets 😏 if they allow me to split a tablet... that no doubt will be a future argument to be had with the pharmacist 🙄 though I would think it would get the backing of the accounts department..... education still in progress
It isn't prescriptions but units of medicine
Are you sure about that
Number of items makes the cost even more ludicrous
Not really..... it isn't all that clear but none had been prescribed before January this year when I started but it could be a coincidence?
I can't really make the numbers and the spend tie up either way? (I'm only looking at 5mcg Roma)
Box of Roma 5mcg £55, Spend £411.46 for September against 2 scripts?
So if one is mine at 6 x £55 = £330 🤷♀️
Well done Eeyore! 😊
Whenever I read posts about T3 and how difficult it is to get it prescribed I dread the time if I ever need to try and get it.
I'm still titrating up with my levo (only on 75mcg so far) I had one appointment with my local NHS endo clinic after my partial thyroidectomy during which I was told.. 'this clinic does NOT prescribe T3' ...it made me laugh as I didn't even ask about it. I think they were trying to get in there first! 🤣
I'm sure if we put our head together we can find a way to get you what you need 🤗
I'm quite happy to self medicate (far less hassle) but I'm fighting for us all to be heard, which seems only right now I have been enlightened
You're doing a marvellous job 😊
How are you getting along with 75mcg?
I'm doing ok. Still have some nausea in the afternoon but only occasionally now. I'm training up a youngish GP at the moment as they said I can only have the increased levo for a month and have to get a blood test 🤔🙄 as they don't want me to become hyperthyroid!
I said I don't think you can become hyperthyroid if you're hypothyroid, don't you mean over medicated? He paused and said ' of course' 😊
🤣 Good for you... 🤗 having the knowledge to question and answer back is a little fist pump moment isn't it 😏✊
Very much so 😊 He's focused on my TSH (of course) which is between 1 and 2 but my FT4 has only just gone into range now.
Obviously a month is too short a time after changing my dose so my next phone appointment (training session 😊) will be focused on how much time is needed for an increased dose to settle before getting blood tests done.
👏👏 Have you done a private one to see where your fT3 is?
Yes Oct 24th on 62.5mcg about 10 weeks;
TSH 1.7 (0.27- 4.2)
FT4 12.3 (12-22)
FT3 4.3. (3.1-6.8) so still titrating upwards.
Moving in the right direction 🤗 you must be a good converter as you had a full thyroidectomy didn't you?
No I had just the right half removed as a biggish suspicious module was in a bad position so meant taking out the whole right side. I did try for ablation but I wasn't suitable unfortunately.
You're lucky to have some thyroid left.... total ablation is not good. Without a thyroid, as t4 rises, t3 does not rise as much as it should. Graph compares untreated hyperthyroid, with treated graves, with no thyroid on levo. I love a good graph!sciencedirect.com/science/a...
I hope your medics continue to prescribe T3....long term!
Forgive me if I'm cynical!
Just keep fighting!
The whole T3 debacle is a monumental disgrace....as we all know!
I self medicate with high dose T3 because I need it to function...."they" just do not understand T3 for some reason and sometimes even associate it with body builders. They fear it...but that is basically ignorance.
I realise I'm beginning to sound like the proverbial broken record!
The decision makers appear to rely on wrongly established beliefs rather than the scientific facts which have been established.
Their "gold standard" treatment is wrong...starting with reliance on TSH values.
I fear the day I may lose my source because it will be the day my body starts to shut down... again!
The naysayers seem to forget that it is one of the most important hormones in the body....essential to life!
To quote the late pioneering Professor James Malone-Lee, "There is worse to come since the ill-considered use of "big data" threatens to average exceptional patients out of consideration".
For some ( the "exceptional patients") this is a very serious situation...I'd opine that it is tantamount to medical negligence.
Maybe someone, someday, will have the tenacity, strength and resources to pursue the issue with the NHS, because right now we are just whistling into the wind.
That's my rant for the day!!
Good luck TiggerMe
Perhaps we should suggest a learning curve for them would be to take a course of carbimazole to see how low thyroid hormones feels and then get back to us? 😀
I’ve been saying that for years! How can anyone call themselves an “expert” unless they have first hand knowledge of what hypothyroidism really feels like?
Or at least pay continuous attention to the patients! I like the idea about the carbimazole very much though. An interesting short cut for the purposes of research, of course. Oops although research is not high on their agenda,
Update: T3 usage & monitoring by NHS 
Does anyone have NDT prescribed by NHS? 
Any studies showing adverse effects of T3?
Finally prescribed liothyronine (T3) via NHS
Just had T3 level tested by NHS
