I need help finding Liothyronine outside of the UK

[ArtyTrish]

Hi,

I’m a new member here and I have a bit of a story to tell. I’ll completely understand if you want to simply scroll down to see what my question is and that’s fine by me, but for those who don’t mind a bit of a read, my story started back in the late 1980s and all was well until recently. So here goes...

I was pregnant when I was diagnosed and that in itself posed a few clinical problems for my doctors at that time. I was about 32 and it was my second child. I was a teacher (still am) I’d lost my voice but it had gone on for about a week so I took myself off to the doctor who, on examining me noticed a lump at my throat. Anyway, after several tests, throat scans and large scary needles inserted into said lump; I was diagnosed with Hashimotos and (by then my son had made it into the world) prescribed both Liothyronine 20mcg per day (then known as Tertroxine) and Levothyroxine, starting on 50mcg and working up to 150 over the next few months.

My medication did not change and I was fine for most of the time. Yes I have thinning hair and I’m always tired, I’ve never been skinny and I feel the cold like you wouldn’t believe. However, all of these symptoms were explained to me and I coped. I never asked any searching questions but then, I wasn’t suffering and I felt fine.

I imagine there are those of you reading this, thinking how naive but just think about it for a minute...1988...No PC, no internet, certainly no Google and no reason to find out too much because I didn’t consider myself as ill even though my exemption certificate might suggest otherwise (which, btw was an actual paper certificate back then).

Then I went through the menopause...mmm...nothing major, but I was losing more hair, my nails looked like I’d attacked them with a cheese grater and I put on about a stone over the course of a year, so I trotted off to the GP who, quite frankly was as much use as a chocolate fireplace and really didn’t want to know.

Then my middle son (the one I was pregnant with at the start) announced he was getting married. So, nails...acrylics/gels can cover that, weight...Slimming World should do the trick, but hair...well that would need some specialist help. I visited a trichologist and he set me straight on a few things and wrote to my GP who sent me for tests (sadly not FT3 & FT4...I didn’t know about them...ignorant or what!?) referred me to an NHS Endocrinologist and I was told to immediately stop taking Liothyronine (his actual words were ‘I can’t for the life of me see why you were ever prescribed this, it's of no benefit’) take Vitamin D supplements, reduce your T4 to 50mcg, (‘you’re on far too high a dose, it’ll be the menopause that’s upset things’) and come back in 4 months! I’d gone through the menopause and come out the other end but he wasn’t interested. At this point I did ask questions but I was assured that this was the best course of action. I mean, we put our trust in these people with the expectation that they know their stuff...Oh how wrong can we be.

That was just over 2 years ago and I’m sure all of you who’ve managed to stay awake throughout this rant can imagine how things have been. I kicked Slimming World into touch. I almost didn’t get into my outfit for the wedding. The continuing weight gain didn’t help...and I’m still getting heavier by the day. My hair has become even thinner (it’s the only thin part of me) and I tend to sleep a lot more! I now know that the NHS Endo’s decision was ‘probably’ based purely on finances and although my T4 has been gradually increased to 125mcg, things are no better. The last time my GP reluctantly increased my T4 (almost disbelieving my test results...like I'd falsified them or something), he had the audacity to ask if I ever forgot to take it...as if!

I have now found a private Endo who is wonderful and gobsmacked that after 28+ years successfully on T3 it was axed. He’s recommended diets & supplements and even tried to persuade my GP to reinstate my T3...unsuccessfully, I hasten to add. He’s also prescribed half a 25mcg tablet of T3 daily.

So now come my questions...

1) I have a private prescription from my new Endo. It’s basically a handwritten prescription, signed on headed notepaper. Is that what it should look like? I suppose I expected something more like an NHS prescription.

2) He’s recommended a pharmacy in France and I’ve messaged them to ask what I should do in order to get the 25mcg T3 from them. No reply yet. In case I don’t get any joy from them, does anyone out there know of any other pharmacies...anywhere?

So to sum up, if I can get my T3 from outside of the UK, it looks like that's it from here on in. For the rest of my life, I'll be relying on private prescriptions sourcing my medication from abroad. Oh how sad...I feel sorry for myself. It must be payback for all the years of free prescriptions I've had.

Thank you for reading!

[helvella Administrator Thyroid UK]

ArtyTrish,

In principle, UK prescriptions can be presented across the EU. However, there is nothing to force an individual pharmacy to accept a specific prescription. The link below might help.

europa.eu/youreurope/citize...

Some people present a UK prescription at a UK pharmacy and get Sanofi Cynomel from France dispensed. This is perfectly legitimate but probably requires the prescription to be written appropriately.

The cost is much lower for either of the above options than for UK products.

Costs will vary by pharmacy in the UK. Check before you buy.

[Clutter]

Welcome to the forum, ArtyTrish.

You can take your private prescription to high street pharmacies in the UK and they can source 25mcg on your behalf. Alternatively, you can use the prescription at one of the online pharmacies in thyroiduk.org.uk/tuk/treatm... Both options are likely to be more expensive than sourcing direct from France.

There is a 3rd option which is to buy 25mcg Liothyronine online without a prescription. Write a new post asking members for sources via private messages if you want this option.

[SlowDragon Administrator]

Which CCG area are you?

Improve Thyroid Treatment campaign are gathering info of each CCG policy on T3

Is your endo also an NHS endo (even though you saw him privately?)

[ArtyTrish in reply to SlowDragon]

I'm in Nottinghamshire and unfortunately I don't think my private Endo is NHS any longer.

[Ridgebacklover]

My GP gave us a private prescription as I had no luck getting T3 on line and CCG blocked her giving it to me even though she was willing to pay the cost, and my husband flew to Germany and got 100 20mcg tablets. Pharmacy also agreed to continue to supply and gave us contact details for future. Hard work but can be done.

[marigold22]

I have sent you a Private Message