Liothyronine from Germany?

[Laundretta]

It’s been a while since I posted. I’ve been under a lovely Endo on the NHS for about 7 months and have gradually increased t4 from 100 to 125mcg daily. TSH now down to near the bottom of the range, t4 20+, t3 still a stubborn 3.7, up from 3.6! (Full numbers on my profile)

Endo has been great, very honest and open that he is no longer permitted to trial me on t3 under the nhs, but that in private practice he would/could. I have improved with the t4 dose uplift, but there are residual symptoms such as heavy periods, stubborn weight, and fatigue after activity that would be nice to shift.

He has said he is no longer permitted to prescribe in private practice in a way that would allow me to get t3 from Germany. So my question is: Does anybody here have an Endo in the UK from which they can get German-priced and prescribed t3? Thanks in advance.

P.S to anyone struggling with a TSH over 1 - it’s worth making the fuss to get your dose increased, and I’m pretty sure the upward trend in my vitamins thanks to supplements and black pudding have helped too.

[jimh111]

What he says doesn't make sense. He does not have to prescribe German L-T3 as such. He just needs to write a prescription for 'liothyronine', preferably in multiples of 50. You then just order Thybon 20 Henning and send the prescription to Germany thyroiduk.org.uk/tuk/treatm... . Simples!

[Hidden in reply to jimh111]

Agree. He does not need specify Thybon, just the active ingredient name.

I'm not in the UK, but have a doc in Ireland who prescribes thybon specifically (and it's few times cheaper than t3 purchased in UK). Another option - get a different t3, without prescription. I did that too last week and it arrived today, just in case you want to have a back up (in case of war, catastrophe or a zombie attack ).

[Laundretta in reply to jimh111]

What would the prescription be likely to say if the intention was to privately buy UK t3? Is there a named brand here or is it generic?

[jimh111 in reply to Laundretta]

You would usually just get a prescription for 'liothyronine'. You wouldn't buy UK liothyronine as it is about 30x to 40x as expensive as German. The prescription for UK and German is exactly the same, although you really want a prescription in multiples of 50 as that is the German pack size. If e.g. your prescription says 56 tablets the Germans will supply 50.

[Laundretta in reply to jimh111]

Thanks

[MissGrace]

I would read up on the guidance for having a trial of T3 on the NHS. It isn’t true at all that you can’t be given a trial on the NHS. There are people on here who are in the same situation as you (poor converters or still with hypo symptoms despite in range results) who have got a trial and even endos directing GPs to prescribe T3.

It would be worth printing out the guidelines (if you search on here they have been posted by various people lots of times) and taking them back to your endo.

I also don’t understand his comment that can he is no longer able to give you a private prescription in a way that would allow you to get T3 from Germany??? As people on here are telling you - that’s not true. My private endo would not only give you the private prescription, he’d tell you exactly how to go about sourcing it!

Your endo may be lovely and helpful, which is great, but he seems somewhat misinformed too perhaps. Maybe if you take him the NHS T3 guidelines he’ll give you a trial? 🤸🏿‍♀️🥛

[MMaud in reply to MissGrace]

MissGrace, do you perchance have any links to the guidance you mention there.

MY GP has agreed I probably need T3, and is asking our local Endo to sanction a trial for me. I have seen that Endo privately already, but he didn't think my issues were thyroid at all, so am not overly confident in the outcome, so would like to be tooled up.

I have a Plan B if Paln A falls flat.

[MissGrace in reply to MMaud]

Ah, the wonderful SlowDragon has posted the link below. 🤸🏿‍♀️🥛

[MMaud in reply to MissGrace]

Thank you.

[MissGrace in reply to MMaud]

Note the section in the guidelines in SlowDragon’s link below:

‘In very rare situations where patients experience continuing symptoms with levothyroxine (that have a material impact upon normal day to day function), and other potential causes have been investigated and eliminated, a 3 month trial with additional liothyronine may occasionally be appropriate. This is only to be initiated by a consultant NHS endocrinologist. Following this trial the consultant NHS endocrinologist will advise on the need for ongoing liothyronine.’

🤸🏿‍♀️🥛

[SlowDragon Administrator]

But if an NHS endocrinologist says you have clinical need of T3 you should be prescribed on the NHS

thyroidtrust.org/a-gp-write...

Patients should not "routinely" be prescribed T3 by a GP but can be prescribed in secondary care

See page 9 on these Yorkshire guidelines from March 2019

wyhpartnership.co.uk/applic...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Which CCG area are you in?

[Laundretta in reply to SlowDragon]

Hi Slowdragon

Very interesting, thank you. I’ll have a read.

I’m in Sheffield.

[SlowDragon Administrator in reply to Laundretta]

Sheffield CCG Liothyronine guidelines

intranet.sheffieldccg.nhs.u...

sheffieldccg.nhs.uk/annual-...

BTA guidelines on Liothyronine

british-thyroid-association...

Dossier presented to Government November 2018

drive.google.com/file/d/1c2...

Parliament debates

theyworkforyou.com/search/?...

[Laundretta in reply to SlowDragon]

Thank you x

[crimple]

My Gp sent me to an endo when I told him I was taking T3, bought from Greece and no longer available. Enod agreed I was better on T3 and wrote to doc he was willing to monitor me. I then asked GP for a private T3 scrip, which he wrote for free!! It said liothyronine 20mcgm x 100 . I ordered on line, TUK had details, eurapon.de and look for Thybon henning. Once they receive your on line order they ask for a copy of your prescription on line and then if willing to provide they ask you to send the scrip to their address in Germany. Once they have the paper original they send an email telling you how much to pay. It's about £35 + p&p and then bank charge is about £4. Total for me about £50. Boots would charge me £1000, that is not a typo. Good luck

[TickTockTock]

If you split your levo dose it should bring your TSH up a little which will decrease deiodinase3 production and increase conversion of T4 to T3. The lower the TSH the higher deiodinase3 rises and less T4 will be converted to T3.