I am 59 years old woman. I am French and have lived in Germany for the last few years. I am new to London.
At the age of 20, I was diagnosed with a thyroid adenocarcinoma.
Removal of the right lobe and lymph node curettage until the armpits in 1985.
Recurrence in the left lobe, removal of the left lobe and lymph node curettage (totalization) in 1991 + iodine 131 treatment (repeated for 7 years).
In France, doctor (and drug) prices are very reasonable. In Germany, too. But in central London, from what I’ve seen on internet, consultation fees for all specialists cost x3. I got scared.
I've recently moved to London. I have the impression that my GP doesn't understand a thing. She agrees to prescribe me T3, T4, TSH, but then she prescribes "parathyroid hormone" instead, I even don't know what that is.
I asked her for a referral to see an endocrinologist. She agreed.
After a month, no news: she hadn't done it.
After insisting, she referred me, and I have an appointment at Guy's Hospital in a month's time. But I'm not sure that the endocrinologist at Guy's Hospital will agree to treat me taking T3 into account. What do you think?
My treatment:
Until I was 43, I only took Levothyroxine and Propranolol.
Then by chance I changed doctor and this new endocrinologist prescribed me T3. My life changed almost overnight.
I finally had energy, was less depressed, less confused and less foggy. And the miracle happened: I was no longer constipated. I've suffered from slow transit all my life. I tried everything on earth for it without success. Suddenly, my problem was solved. I was enraged that it hadn't been given to me earlier in my life.
So my long-standing treatment is:
Levothyroxine TEVA 100 mcg
Cynomel 0,025 mg (1/4 in the morning - 1/4 at 15:00)
Propranolol 40 mg (1/2 in the morning - 1/2 in the evening)
I take zinc, selenium, many vitamins.
(I used to take Thybon instead of Cynomel in Germany).
Since in London, I cannot have Lyothyronine. I know a pharmacy in Belgium that can send me all I need, but now with Brexit the transport fees are excessive and parcels can get lost.
I have to buy it in Spain, or in France,
When I go there (or when my daughter goes there). It is complicated!
I would like to stop this traffic and buy everything in the UK.
I am not sure there is Cynomel here, but I know I can buy Thybon at a reasonable price. I know this because I found a link pointing at pharmacies in the UK on this forum (thank you!), I called them all.
Lately I had palpitations and bad sleep. Without the help of a doctor, I modified myself my treatment, I took:
Levothyroxine TEVA 100 mcg
Cynomel 0,025 mg (only 1/4 in the morning - and no more 1/4 at 15:00)
Propranolol 40 mg (1/2 in the morning - 1/2 in the evening)
It worked, I felt better.
But step by step, my transit became a bit slower, and I had less energy, maybe a bit more depressed.
So I changed and I took:
Levothyroxine TEVA 100 mcg
Cynomel 0,025 mg (only 1/4 in the morning - and 1/8 at 15:00)
Propranolol 40 mg (1/2 in the morning - 1/2 in the evening)
And I feel better.
What I feel is that, in ideal, I should lower a bit my Levothyroxine, and take a bit more Liothyronine. But I have no idea how to calculate this and I need the help of a doctor for this.
I read in the forum that there is a list of doctors, can you send me this list?
I need a endo with resonable prices.
I am in South London and I am ready to go far if necessary for consultation and blood tests.
Thanks to all of you and to the admins of the forum. Much courage to all those who read me and do not feel well. We must keep hope alive. We can all get better
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Helene-
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Sorry I don’t know how to edit my post, so I write here:
I’veforgot to say that as I took T3, I was not only relieved for slow stransit, but also concerning the cold. I lived a lifetime being always cold and having spasms. This has stops after taking Liothyronine.
Having read a post or reply you have made, I wonder if you realise that you can edit (or delete) any posts or responses you have made here. That means the title, the text or images.
This is not to say you have done anything wrong. This is meant to help you by pointing out this option, and help to do so, not to criticise.
There is no need to reply to this! If it was helpful, ticking the "Like" button lets me know.
Just a quick reply regarding Guys. They will not prescribe Liothyronine (T3). They may recommend to your GP that they prescribe it but they don’t do prescribing there.
When I was under them they said they would only treat me if I got funding for it from my local CCG (now ICBs). I managed that but it took a long time.
The forum and I can recommend a Dr who may well prescribe the T3 privately in SWLondon but unless your local NHS Endo puts you on it most GPs won’t prescribe it.
Sorry I didn’t find the button PM (Private Message), yes I appreciate if you send me the details of your doctor. Thank you so much. I am in Crystal Palace, but I am ready to go anywhere to have a competent doctor with reasonable prices.
Is there a page here on this forum with all the doctors? I didn’t find it. I only found a link pointing the pharmacies (helpful).
Just to check the obvious! I assume your former German or French doctors either won't or can't prescribe for you?
I think some German pharmacies will still supply people in the UK but only if they have a prescription written by an EU-recognised prescriber. That excludes most UK doctors.
In France or Germany, you just have to find the good doctor and they prescribe T3 for you.
In France, even a GP can make a prescription or blood test if you need. Blood tests are not expensive.
In Germany, you can find doctors through a list given in a forum like this one. They send you the list. But I think it’s more expensive in Germany. Same for France, you have the forum “Vivre Sans Thyroide” where you can have access to this list with all the endocrinologists in every region of France.
So, basically it is possible to find a doctor, buy medecine for a little price and do blood tests easily in France and Germany (cheaper in France).
My only problem, for a lifetime, is that I had no idea of what T3 was. After my operation of thyroid cancer, I was send to an endocrinologist in a hospital, I stayed there for more than 20 years. I didn’t know that it was possible to be cured differently. It’s only when he was retired that I took an appointment randomly with another one, and my chance was that this one gives T3 to patients. But I had never heard of it before.
From then my life changed radically, and I decided to take more informations. I discovered Forum Vivre Sans Thyroïde, had access to the list of doctors, and learnt a lot.
It is sad to see this great lack of information.
Many patients are unfortunately like me, ignorant of the fact that we can be cured differently and be much better.
To answer you,r question concerning the medicine:
Yes you can go in a German pharmacy with a French prescription and they give you Thybon.
But it depends! Some don’t.
I called recently a pharmacy online, and they don’t accept it. They want a German prescription and a EU address (to send), not UK).
But I just hope to do everything here in the UK now.
You are right that each and every pharmacy has the right to refuse out-of-country prescriptions (e.g. a French prescription in a German Pharmacy).
I suspect that cost alone will dictate you going for non-UK liothyronine.
Mostly, UK pharmacies charge more (often much more) than NHS prices for medicines supplied against private prescriptions. Hence if you end up with a private prescription, it is likely to be very expensive.
That is one reason many here use a pharmacy which can supply Thybon Henning at a relatively affordable price.
Current NHS Drug Tariff Liothyronine Prices
Link to a blog post of Monthly NHS Drug Tariff prices for Liothyronine products from January 2023 onwards.
Also includes link to information for Northern Ireland and Scotland. (Wales' data is based on England.)
Yes, I have realized that Liothyronine can be very expensive when I called the pharmacies.
Only for Thybon, prices can be very different. Only one pharmacy had a good price. And some told me on the phone that they want a specific note from the doctor. This is hard for me to understand as I am not from here. After a few research I think (not sure) it is because the law oblige them to give English brands in priority. (And Thybon is German).
You have the right general idea. Pharmacists are expected to dispense medicines which have UK licenses unless there is a justification such as due to intolerance to ingredients, or absolute unavailability of UK products.
Price only is not regarded as a satisfactory reason. Even if the high price of UK licensed products means the patient cannot afford the medicine at all.
And, yes, the pharmacist expects the prescriber to state this alongside the prescription.
Thank you for clarifying Helvella. As you say, it's grotesque, but it's even more serious, because obviously the government is passing a law that prioritizes the country's economy over the health of its fellow citizens.
And it doesn't cap drug prices like in Europe. So English brands would not be allowed to sell above the stated price.
This law may be acceptable for all sectors of the economy, for example to boost a poor economy in a poor or indebted country. ...But for the health sector? So for a heart patient, if a more effective drug is Italian or American, we don't give it to him?
Please, if you organize a demonstration, call me, I'll come. I'm serious.
Now I understand why my daughter was refused Thybon at the pharmacy even though she had an English prescription. They want to sell her an English equivalent 3 x more expensive. She doesn't understand, I'll explain to her. So the endocrinologist has to mark a lie, for example that she's intolerant to an excipient, otherwise she has no hope of getting the drug she needs? This is completely crazy.
Unless you can find a complaisant pharmacy. There must be one in the country after all. At least one. A pharmacy that accepts without justification, no?
The really stupid part is, it has absolutely nothing to do with where the medicines are manufactured!
Roma, Sigmapharm/Viatris, Strides and Teva are all manufactured outside the UK. And, of them, only Roma is a UK company (the others are parts of international groups).
We have already had a major case where a UK liothyronine product had its price raised even higher than the p[rices you are seeing in my link!
We do have price controls on branded products - but not generic! The idea (inasmuch that word can apply to an idiocy) being that companies offering generic products would be in competition both with the branded product AND with each other. But this company debranded their liothyronine in order to avoid price controls, and, because it was the ONLY product available, were able to raise their price without limit.
For years, "lactose-free" was sufficient because the only UK product contained lactose. But things are less clear-cut now there are multiple products. But that is still used by some prescribers!
I'm literally sickened by what you're telling me. But it's very instructive. And it's worse than I thought. Profit, Profit, only Profit. I'm already hoping to get at least the name of a doctor on this forum. I hope someone will write to me (how do you send a private message? I don't know) But to get the meds, no guarantee of getting it. My daughter's endocrinologist wrote on her prescription: "if not alternative" (or something like that). And my daughter couldn't buy the Thybon! She's almost out of medicine and will have to take the Eurostar to France to buy it. Absurd. And expensive. An English endocrinologist at £350 a consultation must know that she has to mark "lactose intolerance", right? What an atrocious attitude. What an atrocious situation for all of us.
Check out Spanish online pharmacies. Some sell Liothyronine. For Levothyroxine, this was available in pharmacies (at least long years ago) without a prescription, Once in Andalusia (years ago) I was there and out of stock and they have helped me, I could buy some. Kindness from the person, or just a regular and normal thing in Spain, I don't know. But once I googled in spanish and had pharmacies online selling Liothyronine. I cannot say more.
Another reliable source, a pharmacy in Brussels (Belgium). They have everything at good prices: PharmaBrussels Flagey. They ship all over Europe. They told me on the phone that they can also send to the UK, but at a non-European rate of around €50. Some years ago, I did a few orders. You have to be very precise in your e-mails. You pay on the phone. It works. Pharmacy is Flamish, very pro.
WARNING: All European pharmacies accept European prescriptions ONLY. So for Spaniards or Brits living in Spain, logically no problem, it's EU.
For people living in the UK (like me), I believe it is way better to buy in England. I had the thought to buy in Spain or Belgium, or wherever, of course it is still a possibility, but the easiest solution is to buy here in UK. There are some pharmacies with good prices like the Rose thing... Call the ones on the list given by the forum. I don't have the link, but someone can post it here. Call them, you will find. And with a GP to write the prescription. You'll avoid all international shipping costs and the (rare) risk of loss (because of Brexit).
Indeed, Europe no longer offers any facilities with British nationals. For us, now, in our UK situation, hoping to buy medicines we clearly need at the best price (which means in Europe), the Brexit is clearly not in our favor. It's holding us hostage and making life difficult for us, when we already have an illness and symptoms to deal with, it's indecent to create so many difficulties for us to treat ourselves.
Agreed. Brexit is the stupidest thing ever. My daughter was in England when the vote happened. She was staying in Paddington. The day before she went to the pub and everyone was optimistic that 'remain' would win. Next day at the pub everyone was crying.
Yes, Propranolol is specifically designed for heart rythm problems. Usually cardiologist give it to patients that have fast heart rythm, tachycardie etc.
After my operation, I was 20, The endocrinologist deliberately overdosed me. It's what's known as a brake treatment, to slow the recurrence of the cancer. (Risk of recurrence is statistically in the head or kidneys for young patients). So there was no other choice. So I lived my youth in palpitations and discomfort. I was begging my endocrinologist to give me a comfort drug for the heart beat. He was inflexible. He only agreed when I don't know which American study had finally stipulated that propranolol was recommended for patients in my case. But I was already over 40 ! After that I lived in comfort and silence. I was furious that it hadn't been given to me before. But I am the one to blame. I should have changed doctor.
My cardiologist always explained to me that the 40 dosage is very low. It's not dangerous at all. Heart patients take much higher doses.
No one ever told me that propranolol prevents the assimilation of thyroid hormones. Or, as you say, block the conversion from T4 to T3. My endocrinologist only asked me to take the propranolol at 1 hour from the thyroid hormones. Maybe for this reason? (No idea).
Personally, I did tests over several months, taking propranolol at the same time as thyroid hormones, and propranolol an hour apart. Honestly I've seen any difference in the test results in either case.
Today, I can't imagine living without the comfort of propranolol. I've lived without it for over 20 years, and believe me, I've suffered.
Ok, maybe it would change my conversion. But I would have to change dosage, try things, probably have a lot of discomfort again. Honestly, I am fine with Propranolol. I just have to manage (to balance) T3 and T4, and I think it will be ok.
My daughter here in London, suffering from thyroid, like me, my mother, my grand mother etc… is treated by a private endocrinologist (she has a private insurance (I don’t). This doctor wanted her to also gradually stop propranolol. So she did. Of course it does not work. The doctor had to change (reduce) the dosage. And yes she had no more palpitations, but she ended in hypo. What is the point, 350£ per consultation for that? Of course, the doctor gave her Propranolol back, no other choice, but at very little dosage, and her hormonal dosage is completely different. And because she started to be tired and struggle with weight gain, she gave her another medecine: Metformine (not sure of the spelling). I’m not a doctor but all this seems to me absurd. As she didn’t need this before. She was fine, no weight struggle, no fatigue, she just had some propranolol, that was not catastrophic. Anyway. My daughter does not feel good like before. If I have the chance to find on this forum a doctor (that I can pay) in London, I will give the address to my daughter too.
Concerning vitamins, I take many things, changing regularly: vitamins A, B, C, D, etc…
I take Kurkuma, Onega 3-6-9, I take magnesium sometimes too, selenium, zinc, Pork Vita collagen (for joints), I take plants like Cordyceps and other mushrooms and many other things, and I eat healthy.
I wish I could tell you my vitamin D dosage as you asked me, but I don’t know.
But I had an operation a couple of months ago (nothing to do with thyroid), and I had a full blood test to do, and I had good results for all.
I will buy more magnesium and vitamin D though. Thanks.
Just found your post after your reply to someone I was talking to :
Thyroid UK - the charity who support this patient to patient open forum - have a Pharmacy page - and within this page you will find Roseway Pharmacy - and they now offer a video consult service ( much cheaper than finding a specialist ) and are supportive of thyroid patients and prescribe all thyroid hormone replacement options.
Considering you already have prescriptions from European countries on presentation and likely a current blood test - I'm sure you will be able to get back on track using this service.
Yes, I know this pharmacies page, someone has sent it to me, and I already buy T3 at Roseway Labs. I had a consultation at their GP and bought it.
As I am treated at Thomas & Guy’s hospital in London, the endocrinologist gave me quickly an appointment in rapid access because I had thyroid cancer. She prescribed in my case T3, but I have to pay for it.
Until here, it seems fine, but it’s not.
Unfortunately she changed my dosage (she lowered it), and I have never been so bad as I am now.
It is really terrible.
I wrote to the endocrinologist an email.
And I received an answer saying that this e-mail will be passed to the doctor. But when? No idea. I feel so horrible and I wait to wait like this, for who knows how long…
If she does not answer fast enough, I will have to improvise again with my medicine, or better, call the GP from Roseway Labs.
It is so hard to be correctly treated. So so hard. Hopefully, one day, we will get better…
Don't wait for the NHS, it's hopeless. Just go back to Roseway Labs and buy your own. I've been using Roseway for at least a couple of years now, probably more. Super service. It's just a shame we have to pay for the medication we should all have available if we need it. In the dose size we feel well on.
Ring the lab and ask first before doing bloods because you say you have bought from Roseway before, so you might just be able to get a repeat prescription or add to it on the basis of the last consultation you had. You don't need to have consultations every time you need new meds. You have around 2 a year and then the pharmacist puts repeat prescriptions on file for you.
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