Update, after seeing my Endo for 1st time & cortisol being ok I have struggled to get to the trail stage as suggested as where I live the NHS trust have T3 black listed, written to Health Secretary - no reply, MP - no reply, head of NHS Trust a lovely lady emailed to discuss my "complaint" answered all questions so now waiting. Found out my GP never had any letters from the Endo(different NHS Trust but only 8 miles away & great) so after giving him copies I now have a private prescription. I busy trying to find a reasonable priced T3🤦 found one from Thyroid UK I've spoken with saying Thybon Henning is cheaper but not licensed in UK but it's lactose free & if on prescription could be used as the alternative. Any advice on this would be welcome as to how to start off once I hopefully 🤞secure a three month supply as I've seen to be done slowly..... I'm currently on 125mcg. Cheers👍
T3 trail to start soon🤞: Update, after seeing my... - Thyroid UK
T3 trail to start soon🤞
hi there, good work advocating for yourself and sorting all that, impressive 🤩
I get Thybon Hemning but not NHS, I have a private prescription and get it via Roseway Labs. I find it’s very smooth and very effective. Oh and lactose and I really don’t get on so it’s the best option for me 🤓. Apart from Roseway, I’ve heard there is a compounding pharmacy in Glasgow and Springfield in Richmond is popular, they will all post to you.
I’ve slowly gone up from 2.5mcg (that wasn’t TH that was compounded) and am now on 10mcg daily, the tablets are easy to split along the groove. I can just snap it in my fingers. Making quarters +/- 5mcg was easy too.
Last lot cost me £75.00 and will last 200 days.
Will you drop your 125mcg T4 a little when introducing T3?
I’ve had to tweak and twiddle a bit and now realise I need just under 100mcg eg 1-2 days on 75mcg with 10mcg T3.
Small changes and long wait and see time periods seems to be the way forward 🤗
Hi thanks for reply, I'm to drop to 50mcg T4 once day & 10mcg x 2 daily but I think I'll chat with Endo again & start low & slow.
Found a lab Quincy via Thyroid UK & spoken with them plus emailed a few others just waiting to pick up prescription (Dr has written with liothyronine or Thybon Hemning)🤞 so we'll see what we get + quotes.
I'm going to be on a 3 month trail & see where I am later quandary though if I do respond well I'll have to fund myself🤦 or move over the border so to speak at great cost that way too.
I'll keep updating 👍
That’s a massive drop in T4 I would only come down 25mcg at most. Tagging SlowDragon who will know more. Yeah I hear you, cost is horrendous but it’s kept me employed so I’ll take it 🤣
I awaiting info & hopefully funding with the Medicines Information Pharmacist of East Lancashire NHS Trust who I'm chatting with at moment 🤞Yes I thought that was a tad steep to drop hence I need further info from Endo &/or here😁 I'm retired now so limited on money heyho I'll find a way I'm sure.
It's shameful that getting T3 is a postcode lottery. As well as so many doctors not even knowing what T3 is and how crucial it is.
If you're on Facebook, join ITT Improve Thyroid Treatment group - we have a template letter to send to MP, endo, Hospital Chief Exec, ICB, Healthwatch, Pals etc. It includes details of all national T3 guidance that ICBs and drs should be following, as well as parliamentary statements on this.
Thanks I have joined that on FB my Endo no problem he's spot on problem is his in NHS Trust across the border🤷 I shouldn't have move but naively thought NHS were all the same.....
That's one of the ridiculous problems that still exist. It may still be worth adapting the ITT template letter with your specific problem and sending to whoever you need.
🤔yes you're right another hoop to jump through 🤦👍
I empathise, I really do. But you do have there all the national guidance, parliamentary statements etc. How they can go against all that I just don't know!
Me neither my Endo can't understand why it is so he asked me to follow through so I have I will keep trying though cause if I find I do better with it it's a lot to fund for the rest of my life! 1st steps is to acquire T3 then see how I progress🤣 see how we do....
You should NOT have to fund it yourself. Those drs or ICBs who are refusing T3 are choosing NOT to follow all national guidance. Perhaps you should ask them why?
Which area are you in/having problems with?
East Lancashire NHS Trust they've refused for years so I'm told 🤔 yes I may put that in an email to them👍
This seems to be the East Lancs formulary decision. So ... they have made a decision NOT to follow all national guidance. I'd challenge them on why!
elmmb.nhs.uk/www.elmmb.nhs....
In Norfolk we worked as a group to challenge the CCG (pre-ICBs) and used official guidance documents to prove our case. It took 3 years, but we did it. And there's a lot more guidance and evidence available now. It works better as a group, if you can find others to join you.
i found some of the minutes from the meetings when this policy was decided. East Lancs did not want to play ball and did not want it to be allowed at all...but the other members of Lancshire and South Cumbria did , so the policy is now that the rest of this area will prescribe to new patients and east lancs won't .
minutes are in replies to this post : healthunlocked.com/thyroidu....
tattybogle a good find!
So Humphre there's another thing to add o your evidence - that other parts of your area are allowing T3 and you should not be singled out to be disadvantaged.
Thank you for your find I'll do my best
I'm sorry you have to deal with this - it's wrong. Keep us posted on here, and on ITT?
Yes as we speak I'm penning an email to Ana Batista of East Lancashire NHS Trust - Medicine Information Pharmacist so fingers crossed may have to pen to my MP again who's about as good as a chocolate teapot haha
T3 stopped 😡
Should I tell GP I'm taking T3 on private prescription? 
Can I get my private T3 on the NHS? how?
