Quick straw poll... do many of you manage to get Thybon Henning T3 via the NHS?

[TiggerMe]

Just limbering up for my next Endo appointment 🙃

[jimh111]

My GP used to write me private prescriptions but my local ICB (CCG) stopped it. I'm currently persuing a complaint against Imperial Healthcare NHS Trust. Once that is complete I will see how I can persue getting Thybon Henning on NHS prescription.

[Lalatoot]

Nope...Morningside, Teva or Roma. Having said that the GP surgery (touch wood they continue) are good at giving me Morningside 5mcg rather than Roma. And they insist on giving me 2x5mcg tablets daily rather than a 10mcg tablet. So they are not cheapskates........yet.

[Star13]

yep! After a 2 year fight and a formal complaint. I had to dot every i and cross every T.

[Regenallotment Ambassador]

good luck with that appointment 🙏🙏 let us know how it goes. Jump through those fiery hoops 🤗🌱

[Carna]

Nope!

Been stable on Thybon Henning for a few years. My dose is 25 - 30mcg pd. 20 mcg tablets are easy to cut.

After a battle for a couple of years NHS eventually agreed to fund my T3. They can’t supply Thybon and suggest I continue with my private endo to oversee my bloods as GPS don’t have expertise and the waiting time to see a NHS endo is months.

I received my first prescription of 28 20mcg Teva despite prescription having a note of no Teva by GP as he knows I can’t have that brand in Levo because of mannitol. I noted no mannitol in their T3 so hoped ok.

Tablets are tiny. No hope of cutting them. Messaged GP over a week ago and still no resolution. Luckily have a few weeks left of Thybon.

Decided the stress wasn’t worth having NHS fund my treatment. I had my yearly consultation with my private endo and she agreed to carry on giving me my prescription and I’ll buy Thybon myself.

Very frustrating but I can’t have the worry of getting workable tablets each month. I’d rather pay at least until NHS perhaps gets its act together.

[TiggerMe Ambassador in reply to Carna]

Thanks for this insight 🤗

[McPammy]

I can’t get Thybon Henning through the NHS I get Morningside 5mcg size tablets.I did try but they can’t order it. Thybon Henning isnt licensed within the NHS unfortunately. If I want Thybon I have to get it through my private only endocrinologist.

[Gingernut44]

I have never had any T3 prescribed by the NHS so can’t offer any help with your question. Have you tried Thybon Henning and know it works for you. I ask because I tried it (once only) as I had it on private prescription. I did my usual, took it before bed and was up most of the night with excruciating cramp in both legs and my feet and ankles looked as if they’d been blown up with a bicycle pump, they looked fit to burst 😱 it would be awful to jump through all their hoops only to find you can’t tolerate them.

Good luck with your quest 😊

[TiggerMe Ambassador in reply to Gingernut44]

Wow! That doesn't sound so great 😕 I've not tried it... I'm still at the kissing frogs stage, I was intrigued as a few people have managed to get it via the NHS with no drama.... as with all things thyroid it's the luck of the draw it seems.

I'm going into this review with very low expectations so just looking to pull a rabbit out of the hat really 🙃

[Gingernut44]

I know lots of people get on really well with Thybon so don’t let me be the harbinger of doom. I seem to be intolerant to a lot of medications, not just thyroid, I think it must be the excipients. If I’d been OK on Uni Pharma and/or Tiromel, I wouldn’t have even bothered with the NHS for T3 but I couldn’t tolerate either. I tried Thyroid S and Erfa but had really weird side effects. I now have my T3 compounded with fillers I can tolerate - it costs more but what can I do 😱

It was side effects from Accord Levo that got me into real trouble - it’s a long story and, when I’ve got the stamina, I’ll have to update my profile.

I hope your appointment goes well and you can get yourself sorted.

[Geegee777]

Ill try to keep this short:I requested my gp to refer me to a private endo, who only took new patients via gp referral.

Private endo prescribed me t3, then as I benefitted from t3, private endo referred me back to gp.... Asked him (gp) if he could prescribe me t3, gp said he couldnt. Gp referred me to nhs endo, rather quickly.

I showed nhs endo supporting letter to my gp from private endo. Explained ive optimised my vitamins, gluten and lactose free, researched hashimotos for 3years,self funded my blood tests and finally feeling better on t3 / t4.

Nhs endo agreed to prescribe me t3, I requested Thybon Henning to be written on prescription. That was March 2023.

May 2023, Ive just sent my nhs prescription for thybon henning to a Thyroid UK recommended pharmacy who are able to facilitate my request.... I have tried hospital pharmacy, various other pharmacies in north wales to no avail.

Incidentally during my quest for Thybonne, the only lactose free t3 was available was Teva t3 and Roma. But I really dont want to feel rubbish again, so Im going to pay for a prescription from England, as they are free in Wales. Im willing to pay £10 or thereabouts.