Been given chance to try combination therapy

[Sixties123]

Been given 100mcg Levothyroxine and 20mcg liothyronine (split into 2 x 10mcg) this was given to me by consultant who fgave me script for 3 months - I am worried I might be refused the prescription by my own Gp ! Anyone have any experience of this please ? Thank you

[Clutter]

Poppyrocks369,

Presumably your endo or the hospital pharmacy has given you a prescription pro forma to give to your GP practice so they know what to add to your repeat prescription list?

If your endo is NHS and your practice is in the same CCG as the hosptial it is unlikely your GP practice will refuse to give repeat prescriptions.

[Sixties123 in reply to Clutter]

Hi thanks for replying . My endo is a Prof in Cardiff he gave me a script that I took to hospital pharmacy and got 3 months worth , however my Gp practice is in West cumbria so I’m not sure how this is going to work really but if endo decides this is correct way of treating surely go would need to go along with this regime ? Thanks

[Clutter in reply to Sixties123]

Poppyrockss369,

It really depends on whether or not West Cumbria CCG have red listed Liothyronine. Just give the paperwork to your practice and see what they say.

[Shelley1954]

Surely if an endo, regardless of where they are based has said there is a clinical need fr T3, then it has to be prescribed. I am in the same situation and if my CCG stops my script I will be visiting them on a regular basis asking them to treat my symptoms, as clearly they know better than my endo & suggest others do the same!

[Baggiebod in reply to Shelley1954]

I have been told by an endocrinologist that although I need T3 as part of a combined therapy, she is unable to prescribe it, even as a private prescription! I was advised to buy Henning Thybon myself. She gave me a hand written note saying I should take a lowered dose of Levothyroxine (50mcg down from 100mcg) and add in 10mcg of Henning Thybon. I have tried to source the Henning Thybon, but it is not available without a prescription! I contacted her secretary to ask if she could help, as I found Tiromel and Cytomel available without prescription, but not her preferred brand. The response I got was that she had looked into the possibility of prescribing it and confirmed she was not allowed. I forwarded 3 links whereby the NHS consultation quoted that consultant endocrinologist are still able to prescribe T3 if they think there is a clinical need. My fT3 and fT4 were both below the range and the Endo acknowledged that I do not convert T4 to T3 very well and should take a combination of T4 and T3. She said the Cytomel "should be ok" but she couldn't recommend it!

[amasufindme]

My Endo is Halifax and my CCG is NE Derbyshire. I am on combination therapy too. Luckily my GP supports me and says if your Endo prescribes it, its in the BNF and Jeremy Hunt MP hasn't stood up in Parliament and announced the nationwide ban of Liothyronine... then it has to be prescribed by law. This country is schizoid with Thyroid care.

It would be a wonderful thing if this was tested in the courts to create precedence!

I think it is prudent for you to build your clinical need case - ensure all your vitamins/minerals [Vit D, Vit B12, Iron, Folate, Ferritin] are in healthy range, rT3 checked off ok, manage your auto-anitbodies if you are Hashimotos, adrenals supported well, get your DIO2 gene tested (some people are getting the 23andme DNA testing done too with interpretation) and keep a meticulous record of results, symptoms and dosages etc.

You are not alone!

[Sixties123]

Hi so grateful for all the support on here , I have been feeling a little lost to be honest . My Gp was not supportive of NDT as I had decided to do that and she had no clue what it was so therefore she wouldn’t support me. I am hoping that if a real life , bonafide Professor in Endocrinology prescribes both drugs she will be up for it 🙏🏻 I will let you know how it goes . It will be a while as I have to wait for Prof to write to her . One more question ? What is the rough cost of a months worth of liothyronine? Thanks Lesley

[waveylines]

Im on a combination thyroid treatment and my endo is miles away from where I live. Currently my GP has prescribed and they are happy to do so as thry know its the best treatment for me. However since the NHS directive they want me to see the endo once more to underline they should continue.

So I would put your paperwork in & see what their reaction is.

[Sixties123]

Thank you for that , I feel more hopeful now 😊

[puffyface]

Hi Poppyrocks. I think a months supply of 20mcgs is around £260 in the U.K. In much of Europe it's much cheaper. If your endocrinologist has prescribed it, your gp must be hard pushed not to..unless they are banned in your area.

[Magenta41]

I have this combination prescribed by an NHS endocrinologist. My GP writes the repeat prescriptions but my repeat prescription states “ endocrinology” next to the T3 each time. I assumed that this had something to do with the funding of it and that the funding came via the hospital rather than from the surgery. My GP confirmed this for me so the same may apply to you.

[Tracer]

Hi,

I live in Somerset and my GP used to prescribe T3 for me (I was on T3 only) and then one day I got 'the' letter to say he'd no longer be able to prescribe it for me. I managed to buy it myself, first from the reliable Mexico pharmacy and then the Cyprus one we're all having so much trouble with - I am still waiting for the 2nd half of my order from March 2017.

I've been under an (NHS) Endo from Hammersmith hospital (who I went to see for adrenal issues) and he's spent the past year taking me off T3 and onto T4 (which I've done twice before, with my GP) and now, as I'm so ill (and have put on 12.5 kgs ) he now says I need T3 BUT he won't prescribe it and my GP can't under Somerset CCG rules - so, I've an endo who says I need it and no-one will give it to me, and with the Cyprus T3 having run out, I'm completely stuck. When it all first happened I went to see my MP and we've corresponded about it all since and I wrote again yesterday to let him know my current situation.

I hope you continue to get yours.

[bantam12 in reply to Tracer]

Your GP can prescribe if your Endo says you need it, we live in Somerset and my husband has T3 prescribed.

[Tracer in reply to bantam12]

Hi Bantam12,

Sorry, I didn't see your response until today. As you can imagine, I am VERY interested to hear that your husband still gets T3, in Somerset - could you PM me with where you are/his doctor?? Thanks!

[Parbrook in reply to Tracer]

Bantam 12's husband here.

My wife private Endo's recommendation that she should have Liothyronine was rejected by the same GP that is prepared to prescribe Liothyronine for me on the basis of a letter from my Endo.

My GP sees me as an exception - a special case.

If my wife cannot get Liothyronine from my GP, then I very much doubt that anyone else will.

There is another factor that I suspect is in my favour. I am male !

[Tracer in reply to Parbrook]

Oh, thanks. Same problem as me - my Endo says I should have T3 (in writing) but he won't prescribe it and my GP won't prescribe it because T3 is now classed as drug level 3 in Somerset and so it can only be prescribed by an Endo - so I'm stuck in a cycle I can't break. I'm very pleased you are getting it but it certainly does make you suspect something fishy when, as you say, you're a man..!

If it's not too personal, would you be able to tell me - by private message, perhaps? - why your GP views you as a special case? - or please ignore me or tell me to jump if it's too impertinent a question, thanks.

[Sixties123 in reply to Tracer]

So sorry to hear you are ha big so much trouble getting your medication , I can’t believe that if you need something you can’t actuallt get it !! Seems so wrong especially with many people draining g the nhs taking things they don’t even need . Hope you get sorted soon and thanks for your reply x

[Tracer in reply to Sixties123]

Thank you Poppyrocks, still no joy