Buying Thryoid mess abroad: I hope this is not a... - Thyroid UK

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Buying Thryoid mess abroad

Rabbit46 profile image
11 Replies

I hope this is not a silly or inconsiderate question but why are people buying their thryoid medication abroad? Is it because their doctors are not recognising these patients condition?

I have been hypothyroid for most of my life and never had any problems with having regular blood tests and receiving the appropriate medication on prescription in the UK.

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Rabbit46 profile image
Rabbit46
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11 Replies
lynmynott profile image
lynmynottPartnerThyroid UK

Hi Rabbit46

Unfortunately, not everyone is as lucky as you were. Some patients have overt hypothyroidism which can be seen immediately. However, due to only doing the TSH test and misinterpretation of any thyroid test done, many patients are not being diagnosed. Private doctors sometimes give a trial of thyroid medication and the patient gets better and they then need to obtain their medication themselves because their own GP will not prescribe.

It varies a lot. Some cannot get their doctors to prescribe what they need. Others prefer a brand not available where they live.

In recent years, it has become increasingly popular to order natural desiccated thyroid from Thailand. Those drugs are cheap compared to US NDT drugs (Armour, Naturethroid etc), and seem to work just as well. I don't know about the UK but, in Belgium, NDT has not received marketing authorisation, and therefore is not covered by health insurance. This means patients have to pay for it out of their own pocket. When I take either Armour or Erfa, I spend on average 500 GBP a year on NDT. On T4 drugs only, I'd pay about 1/10 of that, and 85% would be reimbursed...and I understand very few, if any, countries have health care system that allow for NDT to be reimbursed.

EleanorRigby profile image
EleanorRigby

You are very, very lucky then. The majority of us get T4 no question - but T3 is like asking for gold! Most GPs will not even discuss it and that goes for referring on to a specialist who hopefully would know what they are talking about! Be interesting to know what part of the country you reside as sometimes it seems like a postcode lottery for everything on the NHS these days. Overall I am of the opinion that thyroid patients are all classed as 'all in your head dear'.... syndrome.

Rabbit46 profile image
Rabbit46 in reply to EleanorRigby

I am deeply appreciative that I was diagnosed long before the NHS got itself into the dire state it is now. The thryoid may be a small organ but critically important in the body's mechanism. I have to apologise for my post's title, 'Mess' should have read 'Meds' predictive text thought they knew better! Apologies for any distress that may have been caused.

foreversummer profile image
foreversummer in reply to Rabbit46

It's great news that you have such a good GP/Lab. Do I take it you get regular TSH, FT4 and FT3 tests then? Are you currently on Levo or does your doctor prescribe other thyroid medications? Hope you don't mind me asking.

I have to twist my GPs arm almost off to get ferritin, B12 and Folate. No chance of getting FT4 or FT3 these days even when TSH is under range.

Jazzw profile image
Jazzw in reply to Rabbit46

So, out of interest, do you feel well on your dose of levothyroxine? Hope so. Always good to read a good news story! :)

Rapunzel profile image
Rapunzel

Apparently many of us get well on T4 therapy alone. For my GP, any notion of my remaining unwell after a 75mcg dose of levo was stymied by my blood tests, which 'told' him, via the infallibility of the holy miracle TSH test he had done, that as I was 'in range' all was well and I was a moany worried well bint wasting his time asserting that I was still unwell, when his tests 'showed' that I was just peachy. He has the bedside manner of Saddam Hussein and a suspected lesser empathy. I was not willing to risk being labelled as somatoform or mentally unstable by insisting I was still ill. Already changed GPs before; it hasn't made one jot of difference.

I do better on a combo of NDT and T3, which I source and pay for myself, monitoring via Blue Horizon tests which I also pay for. All of the information enabling me to do this was through this forum and the generosity of contributors happy to share their knowledge and information. What fight I have is better preserved for the other battles life brings to bear, than attempting to gainsay this unutterable buffoon and the NHS cohort of endotw*ts. Where my thyroid is concerned, they and the NHS can take a freaking flying leap straight onto the M25. Go and play in the traffic, you sh*ts.

Not that I'm bitter :D They can ram their T4 down their own wretched gullets for all the good it did me. But although we are many, next to those who get along with T4, we are relatively few...we are told - some 20% of the hypos. On the basis of the problems many of that 20% seem to encounter maintaining or extracting a suitable T3 / NDT regime through the NHS, I have ducked out and spend some of my my taxed earnings. For those of you more politically minded, go right ahead and scoff - I pick my battles carefully and am fortunate that this is an argument which has a number of resolutions, thankfully available to me. I donate to Thyroid UK regularly in the hope that those without the financial means to do what I'm doing will one day be able to source alternatives to T4 more easily through the health service I and my DH have paid for royally.

Rabbit46 I rant not at you, nor your completely valid question, rathermore the tyranny and sadism of a system that has completely failed me and thousands like me. Rock on. I'm glad that you are well and properly medicated...just wish this was the case for more of us.

humanbean profile image
humanbean

I was first told my thyroid was "borderline underactive" in about 1990. I don't have autoimmune thyroid disease so my condition didn't deteriorate over time. I suspect, but don't have any proof, that my pituitary doesn't produce enough TSH and my thyroid is probably healthy.

Because my condition hasn't altered much my thyroid was still considered to be "borderline underactive" in 2013. I got my first ever prescription for Levo that year (I had to beg really, really hard) but it didn't suit me.

I suspect I have been "borderline underactive" all my life. I now treat myself. I haven't got the stamina to fight the NHS and the medical profession so I never discuss my thyroid with my doctor any more.

humanbean profile image
humanbean

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Glynisrose profile image
Glynisrose

It is because there are no sales of thyroid meds in Britain.

Buy them from abroad and they cost about 1/10th of what you would pay if you had a private prescription.

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