Thyroid medication Rx in the UK: Hello, My... - Thyroid UK

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Thyroid medication Rx in the UK

Tealchoc4 profile image
43 Replies

Hello,

My family will be moving to the UK from the US for my husband's job for around 3-5 years starting this fall. I have been on brand name Unithroid and generic t3 meds, Liothyronine, for about 5 years now and my levels have stayed consistent and really great. I tend not to do well when I switch medications. I know brand name prescriptions are not common in the UK and I know t3 meds are not commonly prescribed. I'm not sure why any doctor would want to switch a patient off of a regimen when they are doing so well though. I will have private insurance while we are over there. Will I be out of luck on being able to access my medications? I know the limitations but has anyone found a work around? I'm not sure if my current Endo in the US will be able to prescribe medication to me if I'm not living in the US. Any tips would be greatly appreciated!

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Tealchoc4
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helvella profile image
helvellaAdministrator

The simplest option would be if you are able to continue getting them prescribed and dispensed in the USA - and posted over? (This is perfectly legal.)

You might be able to get some products that are the same. For example the UK now has SigmaPharm liothyronine as a licensed product. It looks to have the same formulation as the USA product.

The critical issue will be getting appointments with a doctor who understands the issues and is willing to do what is needed.

Do be very careful as there are plenty of traps for the unwary. (For one example, Accord levothyroxine in the USA is an entirely different formulation to Accord in the UK!) Also, issues like UK liothyronine being mostly 20 microgram products (also, 5 and 10) rather than 25. And most levothyroxine being 25, 50 and 100 with none of the 88 and 112 and such that are common in the USA.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.

The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.

helvella.blogspot.com/p/hel...

Tealchoc4 profile image
Tealchoc4 in reply tohelvella

Thank you for this! I am writing my US Endo right now to ask about logistics of keeping her as my prescribing doctor. I'm not sure if these rules vary by state? We are currently in Virginia. We will have an APO address so that may help too? I'm not sure.

I am not concerned about dosages thankfully - looks like those will work. And thank you for the heads up about keeping manufacturer differences in mind if I start to have issues. It looks like based on your links that Unithroid may not even be an option if I were to find a UK Endo to prescribe me the generic t3, which is unfortunate. We'll see what what my Endo says though.

helvella profile image
helvellaAdministrator in reply toTealchoc4

Afraid I have no idea from the USA side of things!

You are not the first to ask but each and every person has their own requirements.

Will you be returning to the USA, maybe each year? It just might help if you are and could squeeze in an appointment during that visit.

The biggest problem, though, is if your needs change.

Also, be aware things like blood test ranges are (mostly) different between the USA and the UK. Not difficult to multiply or divide but awareness is key. We do have several private testing labs.

Tealchoc4 profile image
Tealchoc4 in reply tohelvella

Ah ok. Who knew staying the same meds would be so challenging to figure out. That's great to know that the labs will look a little different as well. I'll get it figured out one way or another. I really appreciate you notes -thanks again.

Batty1 profile image
Batty1 in reply toTealchoc4

I think by law they can prescribe up to 1 year and then you must be seen by the prescribing doctor so you better make sure she/he is able to telemedicine but in Virginia (were Im located) your doctor must be licensed to practice in the state or in your case country they are prescribing in …. I had this problem when Covid restrictions were lifted I could no longer do telemedicine with JHU in Maryland because my doctor was not licensed in Virginia so I had to visit in person in order to get my prescription.

Virginia has some stupid rules!

Tealchoc4 profile image
Tealchoc4 in reply toBatty1

This is exactly what I suspected and have been wondering about. Thanks for confirming. So, it sounds like in order to keep my US Endo located in the state of Virginia (where I live), I’d have to fly back at least once or twice a year (if she was even comfortable with that) and then fill the prescription while back in Virginia using private insurance...IF my insurance allows it. It sounds like she just needs to see me while in Virginia and send the prescription to a Virginia pharmacy. The exception potentially being, could a Virginia doctor send a prescription to a US military base pharmacy (in England) to be filled, or more importantly refilled? This I still need to find out…

Thank you again, I’m learning the right questions to ask!

Batty1 profile image
Batty1 in reply toTealchoc4

Ok so your military will you be seeing a military endo while living in the UK ? If so then your prescription shouldn’t matter because your prescribing military endo should be able to get you your prescription (Im just guessing on this) Im military also and I get my prescription through express scripts which is a mail order pharmacy for the military as long as your medication is on their formula and your doctor orders it through express scripts pharmacy they send it to me.

Anyway I would check all this out before you leave and maybe call up express scripts and see if they will even send medication abroad.

Tealchoc4 profile image
Tealchoc4 in reply toBatty1

Sorry, I should clarify, my husband is working for the Department of Defense and is a civilian government employee so he’ll be working on a military base but not considered active duty military. As far as being able to see military doctors, I’m unclear so far about that one. We won’t have Tricare as our private insurance (I think we have the choice of Blue Cross Blue Shield or one other) so I’m not sure if we can do Express Scripts. It’s on my list of things to research though.

Batty1 profile image
Batty1 in reply toTealchoc4

Ok in that case you might be stuck coming back to VA at least once a year which should satisfy the doctors regulations and your prescription only problem that could prop up is how much is that doctor willing to give you and how much your insurance is willing to allow. Lots of things to think about.

Catseyes235 profile image
Catseyes235 in reply toTealchoc4

just had a friend from WV stay with me in London. When I learnt that she couldn’t get paracetamol (widely available in loads of shops everywhere here) without a prescription I realised there is a gulf between us. Out T3 availability (and all drugs) is governed by an organisation called NICE and seems only Roma T3 capsules available. Wishing you luck. I’m sure others will be interested in the outcome.

If you are with the military I imagine there is someone over here already that can advise?

helvella profile image
helvellaAdministrator in reply toCatseyes235

I think you'll find there is something not quite right there. The USA's FDA expressly says this:

Acetaminophen is an active ingredient in hundreds of over-the-counter (OTC) and prescription medicines.

fda.gov/drugs/information-d...

Could it be the confusion of it having a different name?

Litatamon profile image
Litatamon in reply toTealchoc4

If your insurance will not allow it as far as $$$ coverage, you have options still -

In the States Mark Cuban's online medication has both levothyroxine and liothyronine for crazy low prices (CRAZY low). So if you can do the yearly visits, that might work with your own US endocrinologist if coverage is denied..

And the UK has very lenient laws for purchasing medication outside of the country and having them sent to you.

Also just another note do do some research, we have very strict laws for Canadian citizens but if you read our laws in their entirety visitors to the country are completely exempt from them. And new immigrants are allowed to continue their medical choices from their home country, even if they are completely contrary to the law at hand. So read thoroughly and do not assume it is one straightforward law for all.

All the best on your new adventure! Envious. Enjoy!

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.

It is possible to get some brands named on your prescription in the UK but Unithroid is not available so the option helvella has given you would be the best if at all possible. Otherwise you would need to do a certain amount of experimentation to find what does suit you from what is available here.

Primary care GP's can only prescribe T3 on the recommendation of an NHS Endocrinologist after a successful 3 month trial and even then some areas can be difficult about that. If you have private health care that would help alot.

You can email info@thyroiduk.org for a list of T3 friendly Endo's.

Tealchoc4 profile image
Tealchoc4 in reply toJaydee1507

Will do. And thanks for that heads up...it feels a little overwhelming to figure out what to switch to instead of Unithroid. The main advice in the US is not to do generic Synthroid or Unithroid (both my GP and Endo have said this individually). So, it sounds like when I arrive, I will need to go to a NHS GP for a referral to an Endocrinologist? Or, with private insurance, can I make an appointment with an Endo on my own?

Thank you for that email address. I will definitely do that.

Jaydee1507 profile image
Jaydee1507Administrator in reply toTealchoc4

The simplest and fastest thing would be to get your GP to refer you to a private Endo that you have picked from the Thyroid UK list. Not all private Endo's require a referral, mine didn't but some do.

You have some time now to be doing a bit of homework ahead of your arrival here so you could see what Endo's are available in the area where you will be, don't forget some do virtual consultations now so thats always an option to look out for.

Obviously bring as larger supply of what your usual prescription is as possible.

When you pick an Endo you can make a post here asking if people have seen that Endo and asking if they could share their experience of them. We are not allowed to discuss Endo's on the open group so your post will be locked and then people will be able to send you a private message to share any information they have about them.

I get my Levo via the NHS and have a named brand on my prescription so that the pharmacy cannot give me any other brand. My T3 I get via a private Endo which would be the same scenario as yourself and I pay for that.

What dose of Unithroid are you on as that will make a difference as to what we might be able to recommend depending on what dose brands are available in.

Tealchoc4 profile image
Tealchoc4 in reply toJaydee1507

Thanks for these tips. We'll be somewhat near the Cambridge area but possibly further north by Alconbury. (I'm willing to travel for a good Endo though!) My Endo prescribes me the 50mcg of Unithroid but then has me cut one in half and take 75mcg/day mostly because the 50mcg pill is dye free and the 75mcg pill is not. Unithroid is also gluten free, which I like. And actually, 2 days a week I only take 50mcg...very specific, I know, but it's working so great for me and has for years. I'm also on 5mcg of t3 (generic Cytomel).

Jaydee1507 profile image
Jaydee1507Administrator in reply toTealchoc4

All of our Levo is gluten and dye free. You'll really just have to try nd see how you get on with each brand.

Tealchoc4 profile image
Tealchoc4 in reply toJaydee1507

Thanks! I may be doing all this worrying for nothing. I forget the meds in England may not have all the additives that the US brand meds have, which may make it so that the generic isn't a problem. I appreciate your comments - thank you again!

mistydog profile image
mistydog in reply toTealchoc4

Alconbury is only about half an hour from me!

humanbean profile image
humanbean

I'm not sure why any doctor would want to switch a patient off of a regimen when they are doing so well though.

To save money.

I will have private insurance while we are over there.

That will increase your options compared to the average NHS patient.

.

One thing to be extremely wary of (and I think this is not unique to the UK - I've read about it being done in France and the US too) is that some sadistic endocrinologists will refuse to prescribe for new patients until they have "confirmed the patient has hypothyroidism".

They do this by depriving the patient of all thyroid hormones until their TSH rises above the reference range or above 10 for a few weeks or months. This can destroy the lives of patients who are stabilised on their ideal treatment and ideal dose because they can never recover again from having their hormones deliberately messed up like this. I would strongly advise refusing to do this if anyone suggests it, and that you go looking for another endocrinologist who is not so sadistic.

Make sure that you take as much proof from the US of your condition and your successful treatment as you can get your hands on, although I wouldn't suggest dumping dozens of letters and test results on a doctor - be sparing, and then dump it one report at a time, if necessary.

.

Also be aware that current NHS dogma says that patients only need to be tested for TSH, and it is rare for Free T4 and Free T3 testing to be done at all, at least by the NHS.

This does mean that the NHS can no longer diagnose Central Hypothyroidism, for example. And they might refuse to treat patients who have had Graves' Disease because their TSH doesn't rise even when they are severely hypothyroid after treatment with RAI.

.

Although many people in the UK still venerate the NHS I'm not one of them because it has been deliberately understaffed and underfunded for years, and just getting an appointment is very difficult. But that doesn't mean I want a system like the US either.

.

One piece of good news though is that, for now anyway, it is legal to import non-controlled prescription drugs, hormones, and supplements in to the UK "for the use of one's own household" - but "household" isn't defined in law, as far as I know. So just assume you can only import for anyone living at the same address as you.

The assumption is also that you will be importing no more than about three months worth (even though Customs officers are not pharmacists and won't know what a reasonable amount for three months of any drug is). If you were to import what was considered a huge amount (by a customs officer) you could theoretically be charged with drug trafficking.

This is the controlled drugs list for the UK :

gov.uk/government/publicati...

Sadly, it has happened that (rarely) some people have imported thyroid hormones into the UK and have had them destroyed by the customs officer who inspected the package and decided the contents were illegal for some unknown reason. The only thing you can do if that happens is to make a complaint, and order more. If customs makes a mistake I have never heard of customs paying for the destroyed drugs - but then I've never heard of anyone taking customs officers to court either.

humanbean profile image
humanbean in reply tohumanbean

I just wanted to mention that some of the common abbreviations used in the US medical system e.g. Rx, Px ? and I think there are others, are not used in the UK by the majority of people so they won't be readily understood.

helvella profile image
helvellaAdministrator in reply tohumanbean

I put a section on what I call "X-codes" in my vade mecum. I dislike them but accept some people use them - and if your healthcare system uses them, you are hardly likely to do something different!

(Maybe the most frustrating thing is that Rx is actually based on the letter R with a crossed leg - not the letters R and x!)

helvella's Vade Mecum document is available here:

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

helvella.blogspot.com/p/hel...

humanbean profile image
humanbean in reply tohelvella

Yes, I looked there before writing my post. I couldn't find the list because I wasn't aware I had to look for the term "x-codes". I found the table on page 225.

A bit of a catch-22 I think. :D

helvella profile image
helvellaAdministrator in reply tohumanbean

It also works if you search for "rx"! Or any of the other combinations.

Tealchoc4 profile image
Tealchoc4 in reply tohumanbean

All great points. I will definitely bring proof of medical records and I'd rather travel back to the US than go off meds (been there done that and I'm not willing to do that again). Thanks for the point about shipping meds too. I'll be sure to check the rules on that. Thank you for your thoughtful comments - all great to be aware of.

waveylines profile image
waveylines in reply toTealchoc4

Tealchoc in all honesty if you are stable on your meds I'd have a serious discussion with your current endo and explore ongoing treatment from that person. It will be much easier than transferring across here. You would still register with a GP here and inform of them of your thyroid condition & meds taken (just incase you need further care in a hospital at any point) but carry on as you were.For three years I self prescribed and I used to buy my meds from the USA. The pharmacist used to put a label on stating for patient personal used and countersign. This is a while ago I never had a problem. I used to have to pay postage from USA, uk handling fee and VATon top ( tax: 20%). It's expensive but worked. I used to order a long way ahead as at the time it took a few weeks to clear customs in the UK.... I think it's quicker now. You are allowed to bring in with you 3 months worth of meds. So I would sort a prescription and order next batch in straight away. This way you should be at least two months ahead incase of ane delivery issues.

If it were me I wouldn't try transferring care of your thyroid here unless you have too. It is a lottery and combination thyroid treatment like your can be tricky to get an endo to agree to, easier if private. See what your endo says. Here in the UK there is a lot of nonsense over prescribing optimum treatment and if you can avoid getting involved in that tangled web I would.

helvella profile image
helvellaAdministrator in reply toTealchoc4

The rules on personal importation are summarised here:

helvella - Personal Importation of Prescription-only Medicines

helvella.blogspot.com/p/hel...

in reply tohumanbean

As long as Tealchoc has the paperwork from the Endo to explain/confirm the diagnosis and treatment regime, importing the drugs shouldn't be a problem.

helvella profile image
helvellaAdministrator in reply to

There is no issue importing medicines for personal use anyway. You do not need an endo's "permission" or endorsement. Nor that of any other doctor in the USA or in the UK.

It would be wholly wrong for Customs to require personal health information about us. Customs have no medical qualifications to enable them to assess claims of diagnosis and appropriateness of treatment.

(Yes, there are difficulties if the medicine is a Controlled Drug. But that is the exception.)

helvella - Personal Importation of Prescription-only Medicines

helvella.blogspot.com/p/hel...

Framboise profile image
Framboise

If your current specialist is unable to continue prescribing for you, you should be able to keep to your dose, and get the closest possible brands, by going to a private endocrinologist. But even they aren't all equal! If you are going to be in London or the South East, I can recommend mine who practices in south Surrey (50 minutes by train from London) and on the coast in Sussex (1 hour 20 minutes by train) and who is happy these days to carry out Zoom consultations after the first one. He normally requires an NHS referral, but probably would not need one to see you as you would be by-passing the NHS entirely. A few of us here see him, he's wonderful, and if you want details I'll send them via PM.

Tealchoc4 profile image
Tealchoc4 in reply toFramboise

I'd love the name of a good Endo. We'll be closer to Cambridge but I may be willing to travel especially if we could sometimes do Zoom. It would be closer than traveling back to the US for a good doctor. ; )

mistydog profile image
mistydog in reply toTealchoc4

Fairly easy to travel to London so suggest checking the thyroid UK list and going down that route.

ThyroidFrazzled profile image
ThyroidFrazzled in reply toFramboise

hello Framboise

I would love the name of your Endo by pm please

Mrst1982 profile image
Mrst1982

I see a private consultant in London. Dr [J]. He would be able to help you. At the london endocrine centre

helvella profile image
helvellaAdministrator in reply toMrst1982

It is not permitted to identify doctors on the forum. For that reason, I have redacted the doctor name from your reply.

Please use the Chat/Private Message facility.

Brightness14 profile image
Brightness14

Just to say welcome to the site it's chock full of useful information. By the way Cambridge is lovely too.

mistydog profile image
mistydog in reply toBrightness14

It is.

KIMBO1964 profile image
KIMBO1964

Hi- I used to live in the US and was on Synthroid. I was able to access it for a year and then it wasn't available. I contacted my old Endocrinologist in Tampa and he told me the closest brand to Synthroid in the UK is Mercury Pharma brand. INSIST your new doctor over here keeps you on the same brand consistently, do not use TEVA brand if you can help it. Endocrinologists over here do not tend to specialise in Thyroid conditions exclusively like they do in the US, so you do have to fight a battle - unless you are lucky enough to be able to afford a private Endo (which I'm not).I've never been on T3, but it's very difficult to get it prescribed over here, so good luck and hope you can get the medication you need once here

Mumstheword175 profile image
Mumstheword175

hi. I’m in the UK and am on liothyronine so you can get that over here. My body doesn’t convert t4 into t3 without it. I don’t know your other medication but am sure they’d be able to get it. On the NHS you are restricted to just thyroxine and if like me you need liothyronine it can be given but with your private health insurance you should be fine

helvella profile image
helvellaAdministrator in reply toMumstheword175

To clarify, the other medicines mentioned (Unithroid and Synthroid) are just branded levothyroxine.

Blobby1234 profile image
Blobby1234

Can I just apologise in advance for the state you'll find our previously world-beating NHS in? Owing to community guidelines I'm unable to apportion blame.

Reefseeker profile image
Reefseeker

Just to add to the plethora of excellent responses. My GP will have nothing to do with anything outside of T4 only therapy. I went to my husband's private healthcare company who gave me a video appointment with one of their GPs and that GP referred me for a specialist Endocrinology appointment. The healthcare provider then gave me 2 local private endos for me to choose and book with directly. Of course other healthcare companies may have different systems. As recommended in the replies, I took a summarised medical history that I wrote myself, he asked me to provide evidence of my treatment to date and then issued the dessicated thyroid extract I requested. Although at rather a low dose which I'm currently struggling with! Good luck!

MichouVP profile image
MichouVP

hi I’m an American who just moved back to the US after 20 yrs in the U.K. Since you will have private medical insurance you WILL find doctors who will prescribe T3. If you’re in London I suggest the Cleveland Clinic. You can just call, register and make an endo appointment no need even for a referral. That was my experience. The National Health Service (NHS) while free has extremely limited funds so they don’t test or prescribe T3 inless your TSH is so low or so high you’re out side the range. Also know that NHS and their hospitals labs ranges are WIDE so always get your bloods done at a private lab. I learned this the hard way. My T4 & T3 were rock bottom but just barely in their range and they refused to refer me to an Endo twice. I went private in the end. I wish you a wonderful time in the U.K. I loved my time there.

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