Consultant said try / GP said can't afford. Help finding good source of T3 online.

[Sunnyday66]

My hospital consultant has said I would likely benefit from at least a trial on T3 2 x 5 mcg a day. He wrote to my GP and the practice said no - it's too expensive and it's not presently being prescribed. I know my GP tried. So, I am looking to get T3 online - preferably not from some underground lab in Asia designed for the anabolic steroid crowd. Any info would be very greatly appreciated if you could send me by private message. Oddly enough I am a doctor with a chemistry background .. but no private health insurance to go the other way round. Sigh xx

[Clutter]

Sunnyday66,

Was it a NHS endocrinologist who recommended you should try T3?

[Sunnyday66 in reply to Clutter]

Yes the Prof who is head of the clinic ...

[Clutter in reply to Sunnyday66]

Sunnyday66,

You have to wonder why patients are referred to specialists if GPs are going to ignore their treatment plans. If I was you I would be complaining to your GP, CCG, GMC and MP that your GP is breaching the GMS Contract and denying you treatment because s/he deems Liothyronine recommended by your NHS consultant Prof xxxx too expensive.

[Sunnyday66 in reply to Clutter]

It wasn't my GP thinking it was too expensive. She tried to get it through but was told no by her medicine management team. It's a common story across the NHS trusts. It's pretty much a blanket mandate. Have you seen this - standard fayre. bsuh.nhs.uk/wp-content/uplo....

In a nutshell "We are sorry to inform you that T3 (liothyronine) treatment for hypothyroidism (either alone or in combination with T4 [levothyroxine]) is no longer available through the NHS. This is a local policy which applies to prescriptions from GPs and from NHS endocrinology clinics. It is supported by national NHS recommendations. It does not apply to patients treated in the private sector."

[Clutter in reply to Sunnyday66]

Sunnyday66,

I'm very aware of it but Levothyroxine is not an effective alternative to Liothyronine for many.

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

I'm waiting clarification from NHS England whether they have already made a decision to deprescribe Liothyronine before the consultation closes on 21 Oct. engage.england.nhs.uk/consu...

Please sign the petition requesting better thyroid diagnosis, testing and treatment. change.org/p/itt-campaign-g...

[Sunnyday66 in reply to Clutter]

Hmm I see .. it's a much bigger issue isn't it. Thanks for the link. Here in rip-off Britain where we could have wider choices to do deals with Pharma - we don't. How come Germany can sell T3 for 30 euro! Rhetorical! The NHS is experiencing huge difficulties and not all of their own making by a long way. The best thing I think is to make sure the government ruining it gets out as fast as possible!

[Clutter in reply to Sunnyday66]

Sunnyday66,

I know the NHS is having difficulties but I don't see why hypothyroid patients should be singled out for having Liothyronine withdrawn when there is no effective alternative for many of us. Not everyone can afford the cost of Liothyronine either via private prescription in the UK or by buying abroad with or without prescription.

Between them DoH and NHS have permitted monopoly suppliers to raise the cost of generic medicines to eye watering prices. Who would have thought that instead of plugging loopholes in the pricing of drugs NHS England would choose to withdraw Liothyronine from NHS prescribing and advise patients to obtain referrals to private endocrinologists for private prescriptions which is

a clear breach of the guiding NHS principle that treatment should be free at the point of use.

[Sunnyday66 in reply to Clutter]

I hear you! I'm sure it's not just thyroid folk that are suffering - I full well imagine it's across a big range of conditions. I'll be over to that petitions. This site is great by the way

[Clutter in reply to Sunnyday66]

Sunnyday66,

There are effective alternatives to the other prescription drugs being withdrawn. There is no effective alternative to Liothyronine for most of us taking Leovthyroxine and Liothyronine in combination or Liothyronine instead of Levothyroxine.

[BeansMummy in reply to Clutter]

My endocrinologist has acknowledged that I have improved immeasurably since adding self-sourced T3 to my prescribed levothyroxine, and wrote to my GP to request that they prescribe it. The senior partner GP and I had a very civilised discussion about it and, as expected, the CCG have refused the prescription. I am pleased that it is on my records that I "need" it, but can't be doing with the continual battling with them all any more, and the GP knows that I self-medicate now.

[Sunnyday66 in reply to Clutter]

I have also found it on a German Online Pharmacy website now, it's called T3 is marketed as Thybon Henning made by Sanofi. 30 euro for 100 tablets of 20 mcg. I am going to ask my GP if she can write me a prescription to buy it from them. I'll be a bit blown away if I have to pay a private prescription fee though - more sighs x

[Clutter in reply to Sunnyday66]

Sunnyday66,

Your GP can write you a NHS named patient basis prescription for unlicensed medicines like Thybon. thyroiduk.org.uk/tuk/treatm...

Not sure if your NHS GP is allowed to write you a private prescription.

[Sunnyday66 in reply to Clutter]

Thanks for the clarity Clutter, then that's the discussion I'll have with her. I'm sure she'll be supportive and will do what she can. She's as frustrated by this as much as me - and she gets to see it all the time!

[SlowDragon Administrator]

Look up your local CCG website and then search Liothyronine. Some CCG's are allowing if you were seen by NHS endo. Some are trying to say it's banned even though consultation is not closed

You may need to go in and stand your ground.

Print out BTA guidelines highlight relevant sections

british-thyroid-association...

[Sunnyday66 in reply to SlowDragon]

Thanks Slowdragon. T3 isn't actually banned, the NHS hasn't got the £ to pay for it when T4 is good enough for the many. My GP / Consultant tried but were defeated by the district budget holders. But looks promising I can get it from Germany online with a prescription from my GP - and pay for it myself. And for 30 euro that's worth it