Searching for Liothyronin T3 supply please - Thyroid UK

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Searching for Liothyronin T3 supply please

QueenBee7046 profile image
17 Replies

Hi, I got diagnosed with Hashimotos 3yrs ago in the US. After being on natural thyroid for 2years, due to other health issues I got referred to Endocrinologist. She switched me to levothyroxine and liothyronine.

I returned to the U.K. in May and my GP said I couldn’t get it. I feel shocking and really struggling...

I would very much like to hear from those who get it, with or without private prescription, where and how do you get it please. Reliable sources only. Very much appreciating your time to respond PM. Thank you.

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QueenBee7046 profile image
QueenBee7046
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17 Replies
EbonyEvans profile image
EbonyEvans

Hello QueenBee7046,

I just wanted to say great post! I also read @Helvella’s message yesterday and a relief that it’s been seen by at least one other person. I hope it’s not just because we’re followers of this fabulous person and the message gets spread. I hope you receive several messages with suppliers. Have a great day.

Joeyis7 profile image
Joeyis7 in reply toEbonyEvans

What was Hellvellas message yesterday please?

Joeyis7

RedApple profile image
RedAppleAdministrator in reply toJoeyis7

See here healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Anyone doing well on T4/T3 combo should be still prescribed

Obviously GP's are being pressured to stop all T3 due to outrageous cost charged to NHS by pharmaceutical companies

Suggest you get full private testing of thyroid and vitamins FIRST before starting back on any T3

Vitamin levels often drop significantly when T3 is withdrawn

Come back with new post once you have results and ranges for vitamin advice

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, make sure to take last dose 12 hours prior to test

Getting private DIO2 gene test any help get you T3 prescription back on NHS if you test positive

thyroiduk.org.uk/tuk/testin...

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

please email Dionne


tukadmin@thyroiduk.org

Roughly where in the UK are you?

QueenBee7046 profile image
QueenBee7046 in reply toSlowDragon

Wow, thanks so much useful information there. I am also MTHFR, so although it appears my B vitamins are normal, they are not... D3 is good. I used to have injections 3x week for Bvits, but the drs here do not know about it... 🙄

SlowDragon profile image
SlowDragonAdministrator in reply toQueenBee7046

Large numbers on here supplement good quality daily vitamin B complex, one with folate in not folic acid

Getting T3 on NHS is difficult, but not impossible

london81 profile image
london81 in reply toQueenBee7046

i took my case to my MP- it didn’t change the fact that I can’t currently get t3 on nhs but it raises the matter of pharma over charging nhs for t3. it also raises awareness of the wider issue that we are being left unwell because of the over charging and refusal of some medics to accept we need T3.

i was told by a consultant endocrinologist off the record that they know many of us need t3 but that it’s too expensive ( which i totally sympathise with). however until the prices come down it’s hard to change their mind. i feel alerting my MP (who is also a doctor) is a good way to get this travesty main stream and bring attention to our plight. please consider doing the same.

when i spoke to an endocrinologist recently about my dad ( who is very unwell and mentally ill after years of being undiagnosed), they mentioned possibly prescribing him t3 which is good progress. this came after only being on NDT with my help for 6 months and looking/feeling much better, so i feel things are slowly changing.

i’ll send you details of a private specialist i’ve been told might prescribe t3 ( i haven’t yet seen him so if you prefer to wait until i have that might be sensible)

m7-cola profile image
m7-cola

I'm sorry, shocked but not surprised that your GP has refused your reasonable request.

Many on this forum have had the same experience. But it is not universal. Yesterday my GP offered to write me a private prescription for T3. He'd seen the enormous price charged to the NHS and had nearly fallen off his chair! I told him I was happy to continue purchasing my own supply from Germany, as suggested by my endocrinologist, provided I had a prescription. So I can get a continuity of supply for the time being via either man. (Adjustments to these arrangements might have to be made following Brexit.)

So you could look for a suitable endocrinologist (see the list provided by Thyroid UK). GPs

are more likely to follow the advice of someone higher up the food chain. But if you get to know an openminded GP they might offer to write you a private scrip. Purchasing T3 abroad is relatively affordable.

I wish you good luck, however you decide to sort out your supply. Warmest wishes.

QueenBee7046 profile image
QueenBee7046 in reply tom7-cola

Many thanks for such an informative response. Would you mind PM me where in Germany you get your prescription please, as I will be able to get a private prescription, thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply toQueenBee7046

Bennewitz is popular choice

thyroiduk.org.uk/tuk/treatm...

m7-cola profile image
m7-cola in reply toQueenBee7046

Hi Queen Bee

Slow Dragon has written the name of the pharmacy I use. It is one of those on the Thyroid UK website. This website is a fund of information.

SlowDragon profile image
SlowDragonAdministrator in reply tom7-cola

This may be a problem after leaving the EU. It's unclear yet

Dorey69 profile image
Dorey69 in reply tom7-cola

It’s stupid what they charge for medication here in the uk. And since we sell more drugs abroad than we buy. I don’t know why they can’t but from a foreign chemist for the drugs we need. I know it’s all about money. But our pharmaceutical companies should reduce the price, I’m sick of suffering on no medication and can’t afford private or abroad prices

london81 profile image
london81 in reply toDorey69

i took my case to my MP- it didn’t change the fact that I can’t currently get t3 on nhs but it raises the matter of pharma over charging nhs for t3. it also raises awareness of the wider issue that we are being left unwell because of the over charging and refusal of some medics to accept we need T3.

i was told by a consultant endocrinologist off the record that they know many of us need t3 but that it’s too expensive ( which i totally sympathise with). however until the prices come down it’s hard to change their mind. i feel alerting my MP (who is also a doctor) is a good way to get this travesty main stream and bring attention to our plight. please consider doing the same.

when i spoke to an endocrinologist recently about my dad ( who is very unwell and mentally ill after years of being undiagnosed), they mentioned possibly prescribing him t3 which is good progress. this came after only being on NDT with my help for 6 months and looking/feeling much better, so i feel things are slowly changing.

Dorey69 profile image
Dorey69 in reply tolondon81

Thanks for you’re informative advice,

Dorey69 profile image
Dorey69 in reply tolondon81

I can’t even get NDT 😢

london81 profile image
london81 in reply toDorey69

:( i’m sorry it’s so tough at the moment

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