Blacklist for T3

[Humphre]

I'm currently under an endocrinologist, we discussed possible treatment also looking at other reasons why I'm tired(especially in afternoons) plus other usual symptoms associated with hypothyroidism, I've Ords & anti bodies & Doi2 deficiency. Currently on 100/125mcg alternate so far so good. In July I'm to have ATCH stim test for low cortisol all arranged but I've learnt that should the endo think I need to trail T3 my NHS Trust has it blacklisted😮 surely there shouldn't be a postcode lottery on health. I'm being treated in a NHS trust 15 miles away but is in a neighbouring trust.Should it become obvious I need T3(poor converter too) I'll have to be writing to the Trust area I live in, so will need to compose a letter at some point in the future.

I'm due a blood test in June so we'll see how my levels are but I still feel my vit levels are not optimum but getting there.

I use British Supplements Ltd for triple magnesium x 2, Vit D 3 with K2 x 1, B12 x 1, Omega 3 algae based x 2, Ingennus B complex x 1, Maxmedix selenium x 1 plus Raw powders-betaine HCL(I don't have pepsin in stomach this helps👍) been feeling so much better since starting these thanks to this forum.

Any other advice I'm grateful for.

[SlowDragon Administrator]

T3 isn’t black listed anywhere in U.K.

if NHS endocrinologist says you have clinical need you should be prescribed

Over 65,000 prescriptions in England in last year

prescription numbers searchable by ICB area and by GP surgery here

openprescribing.net/analyse...

[Humphre in reply to SlowDragon]

Ah not what I was informed I hope I've been informed wrongly🤞 anyway we'll see how I develop😁thank you for the information.

[Humphre in reply to SlowDragon]

Just checked, 115 item in past year🤦 against other NHS trust my I may have a battle on my hands but thanks again I'll keep an eye on this now 👍

[lola1956 in reply to Humphre]

Same here and maximum dose given is 5 mg I was told in my area

[Humphre in reply to SlowDragon]

I knew I'd been told & now explains why the items for my NHS trust is so poor compared to others🙁

The letter from endocrinologist to me re summary of put telephone conversation

[SlowDragon Administrator in reply to Humphre]

Which ICB area are you in

It’s not “black listed” anywhere

Some areas are more willing to prescribe than others

[Humphre in reply to SlowDragon]

NHS east lancashire

[SlowDragon Administrator in reply to Humphre]

T3 on private prescription is not expensive

Typically daily dose is between 10mcg to 20mcg per day

Usually as 5mcg doses spread over the day

Cheapest option by far is 20mcg tablets cut into 1/4’s

Thybon Henning 20mcg tablets cost £60-£80 per 100 tablets

[Humphre in reply to SlowDragon]

Well at least I may get a choice thanks for information 👍

[arTistapple]

I saw the letter my GP sent to my new endocrinologist (and the old one who was private) which distinctly said the surgery, along with others in the ‘group’ have decided, as a group, not to prescribe T3. The word ‘black listed’ was not used but it amounts to the same thing. And “the patient has been informed”.

The very endo in charge here was involved in writing the National guidelines which say trials can be done. However there are also local ICBs, no doubt guided by this prejudiced endo, which can take the decision to blacklist T3 for their area. It’s outrageous but at the moment I am working towards challenging it.

Just wondering if the endo (if willing to take on the costs) can continue to take on the costs forever if the patient clearly needs it! Different budget and different statistics? Otherwise this is ……. Can’t think of a word to cover the wholeness of the idiocy.

[Humphre in reply to arTistapple]

Oh my I hope your successful it's absolutely dispicable how some are ignored but could be easily managed costly less in the future very poor indeed.

[arTistapple in reply to Humphre]

Yes not only are we are ‘paralysed’ by our illness, we are paralysed by these lousy decisions. We spend so much time ill and/or trying to get well, there is not much time for anything else - like pursuing this travesty. ‘They’ have got it easy with this bunch of patients.

[Bertwills]

Each health trust has a formulary which lists the medicines that are available to be used within that trust’s area, They vary a surprising amount. The post code lottery for medications definitely exists.

I wanted to try a new sleeping tablet that NICE announced that it had approved. I went to my GP to be told it was non-formulary! I discovered that just down the road in Shropshire it was available so I changed GP surgery. Was given the tablets to try.

Each formulary is searchable online. Medications are colour coded & length of course etc are listed. I was astounded by this in many ways. Particularly the waste of resources & duplication of effort involved in drawing up each formulary. How unfair it is & how little known about.

I discovered that I could have been prescribed melatonin. It’s never been offered, I paid a lot to import it from the States. I should have been allowed a course by the NHS according to the formularies.

It’s worth familiarising yourself with your local formulary & others nearby. They could vary considerably .

[Humphre in reply to Bertwills]

Thanks, I had to move surgeries due to moving house, alas 8 miles over the border (Yorkshire/Lancashire originally in Yorkshire boundaries moved🤦) not allowed to stay where I'd been all my life. Yes I'm now seeing/experiencing the differences between services & it's diabolical. Oh but I will fight if it looks like I need T3 this forum is fantastic for information. 👍

[arTistapple in reply to Bertwills]

Bertwills where did you find this formulary, please?

[Bertwills in reply to arTistapple]

If you Google the name of your local health authority & add formulary it should come up. I think it’s possible to search for conditions & symptoms too ie insomnia.

You can therefore compare formularies. Different health authorities have very different lists.

I think this is what the GPs are searching during consultations!

[arTistapple in reply to Bertwills]

Thanks. I have got the details of surgeries around me who prescribe T3 - NONE. I will check out formulary now too.