T3 Suppliers needed: My doctor has just joined... - Thyroid UK

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T3 Suppliers needed

SamW profile image
SamW
31 Replies

My doctor has just joined the 100's of others who have stopped prescribing T3, they've given me no notice whatsoever and I have about a week's worth left.

I've been hypothyroid for 10 years and on T3 only for 8 years. I've just seen my endocrinologist who has written a strongly worded letter that I should still be on T3 but they still won't prescribe on the NHS and have given me a private prescription.

My questions are:

1. Are there any reputable suppliers who deliver quickly? I'm a bit nervous of the mexican ones and the weightloss/body building sites.

2. If I go on a weekend away to a european country with my letter and prescription would I be able to buy it at a pharmacy? My doctor thinks I might need to see a doctor over there.

Please PM with information if necessary.

Many thanks in advance.

Sam

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SamW
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31 Replies
canyouhearmeaya profile image
canyouhearmeaya

If you go to Greece, you can buy it over the counter in a pharmacy. It's like 2-3 euros for a blisterpack of 30, Cytomel too. I've just ordered some myself from a bodybuilding source, as have used previously so trust them.

If anyone has any other good sources in UK though, please do PM me. Would be interested to have other sources available as the few sites I checked initially were out of stock.

helvella profile image
helvellaAdministratorThyroid UK in reply to canyouhearmeaya

This is just not the case any longer. Even forum members who live in Greece and know several pharmacists have to produce a prescription for liothyronine.

(As with so many things, there has been the odd occasion that someone got a pack without a prescription.)

canyouhearmeaya profile image
canyouhearmeaya in reply to helvella

Oh really?! Sorry, didn't realize that. I must admit, it's been 4 years since I was in Greece.

What a shame.

Jump1 profile image
Jump1

If you have prescription the sputh of ireland supplies it. Though not sure if they will take uk prescription. Could check and see.

SamW profile image
SamW in reply to Jump1

I am going to South of Ireland at the end of May. Do you have any idea what price they are there?

Jump1 profile image
Jump1 in reply to SamW

Thybon months supply 2o mg a day about 28 euro. Sone phatmrmacy have to order in. You shoukd eing in advance

helvella profile image
helvellaAdministratorThyroid UK

You can use an NHS or private prescription in other European countries. There can be issues - the prescription has to have been written to certain standards (all NHS prescriptions are OK), and the pharmacy has to be willing.

You can also trip up on the dosage (e.g. 20 vs. 25 microgram tablets) and number of tablets in a pack.

This is one example of a pharmacy that is well used by people in the UK - set to English and a search for "liothyronin":

versandapo.de/en/substance/...

SamW profile image
SamW

Theresa May is our MP! So two birds with one stone!

Mamapea1 profile image
Mamapea1 in reply to SamW

Throw an extra one from me for good measure! lol! 😊 x

SlowDragon profile image
SlowDragonAdministrator in reply to SamW

Suggest you ask how she would feel having to order insulin via internet and post.

How vulnerable it makes you feel

TaraJR profile image
TaraJR in reply to SamW

Oh PLEASE write to Theresa May. Many of us have contacted their MPs, with some success. Thyroid UL website has a template letter. And if you are ion Facebook ITT (Improve Thyroid Treatment) they have various template letters too. I'm sure Mrs May has no idea about this. And maybe not Jeremy Hunt either - despite many letters been sent to him. Not sure how to ensure they DO see these letters...

SamW profile image
SamW in reply to TaraJR

When I got a reply from her office to say she's contacting the CCG it came back as titled "Liothyronine". That wasn't the title I put on my email so I suspect that she has had other emails about it and is getting on to the CCG. I'm kicking myself now that I wrote to her in haste and didn't wait until I had calmed down and wrote a better letter. If I get a crap response I will try again. I have an interview tomorrow with the Maidenhead Advertiser, Theresa May's local paper!

TaraJR profile image
TaraJR in reply to SamW

Oh SamW , good luck with your interview... great stuff!! Make some notes beforehand. I've done an interview too. Amazing what we can do when we know we're right!! :-)

Mamapea1 profile image
Mamapea1

I agree with reallyfedup123 ~ why should you be put in this position when you have been well on your prescription meds for all these years? It's a disgrace that they are purposefully and knowingly making you ill and causing you to worry like this! 😨 And all because of pharmaceutical companies corruption!💰 Scandalous and criminal! I hope you find a speedy solution to this completely unnecessary dilemma. 🙏🌷🌻🐝 xx

SlowDragon profile image
SlowDragonAdministrator

Versandapo takes about 10 days.

You order online, post real prescription to Germany and once they get it, they invoice you and post back to you

Boxes are in 100's or 50's only available on prescription

Thybon Henning 20mcg

30 euros plus p&p for 100 tablets

You might try a helpful independent local pharmacy in UK, it is possible to get European T3 here if Pharmacist wants to help

Fight this all the way. See Improve Thyroid Treatment campaign on Facebook for lots of helpful info and letter templates

helvella profile image
helvellaAdministratorThyroid UK

I have just written a new document which explains how to use a UK prescription abroad.

dropbox.com/s/dxai7lkovl95y...

Please let me know of any mistakes, etc.

Hay2016 profile image
Hay2016 in reply to helvella

Thanks Helvella, was thinking I needed to ask the question. Answered already!!

Now to get a prescription as my 40% through the range t3 is exactly where it should be according to nhs endo.

Kipsy profile image
Kipsy in reply to helvella

Brilliant help- thank you

RedApple profile image
RedAppleAdministrator in reply to helvella

Excellent document! Presumably all this will change when Brexit finally happens?

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

I cannot see how it could possibly stay the same.

We have no idea whatsoever as to whether there will be any form of agreement (like the single market and customs union) - we are told that crashing out on World Trade Organisation terms is still a possibility.

So we have two major issues:

The acceptability of UK prescriptions in the rest of Europe. Obviously if you look at the website linked in the document, the agreement currently in place was an acceptance of an EU policy. Even if an agreement continues to exist, the terms could change and we would no longer be a party to their development. (I can imagine further European harmonisation that results in something closer to a single pan-European prescription in a common format - possibly using standard codes for medicines.)

The possibility of VAT and other charges (duty or newly imposed taxes) on personal imports from the rest of Europe - along with any costs of collection (e.g. the usual Royal Mail £8 customs clearance fee). Bear in mind that even our current £15 personal import threshold derives from EU policy. Given any form of barrier, some pharmacies may become less willing to trade with people on the UK, especially if they have any increased paperwork - like putting customs declarations on every package.

Of course, this is based on my ignorance and invokes at least some worst-case possibilities. It is always possible that all these issues have been discussed, agreed, and there would appear to be no change. I just rather doubt it.

Kipsy profile image
Kipsy in reply to helvella

helvella - thank you for posting that fantastic document. Can I double check with you that I've got this right please:

I'm aiming to get a private prescription and use Versandapo. I know I want Thybon Henning. Do I ask the endo to write liothyronine hydrochloride 20mcg x100 but ask him to make no mention of the brand name, Thybon Henning?

Sorry- just want to make sure I get it right. Thank you in advance.

helvella profile image
helvellaAdministratorThyroid UK in reply to Kipsy

I believe that is correct. However, I suspect that just writing "liothyronine" would be OK. Not sure if any other make is available in Germany in 20 microgram tablets? If so, the prescription would not be usable for 25 microgram tablets so having the brand name would not be an issue.

Could anyone who has actually done this - and has the experience - please respond?

Of course, could be worth contacting the pharmacy and double-checking. :-)

Kipsy profile image
Kipsy in reply to helvella

Thank you so much- I will contact the pharmacy and check & post their response. Your document was so timely. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to Kipsy

I did this successfully from Versandapo with prescription reading

Liothyronine 20mcg x 100 tablets.

Only send prescription tracked or ordinary post

Do NOT send as tracked & signed for .....it's a PO Box and signature not possible, therefore prescription will be returned (eventually after about a month)

Summer64 profile image
Summer64 in reply to helvella

My doctor wrote "Liothyronine 20 microgram tablets" on my private prescription for thybon.

Hi to simply stop prescribing is not in line with NHS England guidelines. He is meant to refer you to an Edno to have an assessment done. Do you feel up to fighting for T3 on the NHS? If you do ITT and Thyroid UK have information to help you.

in reply to

Also you can ask for the GP to do a named patient prescription. That way you get a prescription but you pay for the T3 and use a European piece rather than Internet. Mind you if the GP is willing to do a prescription they are recognising clinical need. Good luck with what ever you decide to do

SamW profile image
SamW in reply to

My GP's sent me back to my endo who wrote me a fantastic letter. But by then our local CCG had merged with several others to become Berkshire West CCG and they they shut the door to everyone.

My doctor is fully supportive of my taking T3 and has written a private prescription without charging me. Yes I am totally up to fighting for T3 on the NHS. I am in a fortunate position that I can afford to buy it from Europe (not at UK prices obviosuly!), but there must be many many others for whom it might be a choice between medication and eating. Also I think it could help the cause of all those who need to take it but are currently prevented.

shaws profile image
shawsAdministrator

The following is self-explanatory and make an appointment to see your MP. If is disgraceful to withdraw without any warning and someone is left high and dry.

SlowDragon profile image
SlowDragonAdministrator in reply to shaws

I imagine Teresa May does not run standard MP surgery. She's SamW's MP

endomad profile image
endomad

My dr did the same so my endo did my prescriptions then the hospital refused. It took 10 months but they were forced to reinstate my t3. In the mean time my endo did me a private prescription for loithyronine i take 75mcg daily so it was easy as i live partly in france and french cynomel come in 25mcg tablets. I have never had a problem filling the prescription in france and they often return prescription to me to re use. Due to feeling unsettled by it i also signed on with a french dr who has been happy to continue prescribing and asks for blood tests once a year from uk or france so i had a back up plan. T3 is cheap in france 3 euros 30x25mcg.

My real bug bear was wanting it on my medical records when they stopped mine as tbh i had no problem getting t3 but i want it on my records. I have said since reinstating im still happy to buy it cheaply in france, it was the principle for me but no they are happy to pay not only the vastly inflated price but a lot extra as the 5mcg is this new dissolve in water, draw off 5mcg and throw the rest away, i kid you not, there are an extra 20 days worth for throwing away.....makes my blood boil.

Get yourself a supply but continue to insist they reinstate, the guidelines are clear that it should not be removed from long term users but of course in the real world they will do what they want.

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