Liothyronine - Sanofi Henning Thybon supply - Thyroid UK

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Liothyronine - Sanofi Henning Thybon supply

Fifteen profile image
39 Replies

Hi, just joined and very much hoping someone can help.

I need to find out how to get Sanofi Henning Thybon liothyronine.

An endocrinologist recommended it and told me to get an NHS prescription. I am already taking liothyronine and urgently need a replacement supply as the NHS will no longer supply it free to the over 60s.

My GP and pharmacist have never heard of this company or brand.

Where can my pharmacist get it? How much does it cost?

Is there anything I need to have on the GP's prescription?

Thanks in advance for any advice.

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Fifteen
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39 Replies
SeasideSusie profile image
SeasideSusieRemembering

Fifteen

ThyroidUK article on how to get Thybon Henning here:

thyroiduk.org/tuk/treatment...

Scroll down to Alternatively, you can try some pharmacies in Germany. This is perfectly legal and they are much cheaper than the UK T3.

I understand that the prescription needs to state the number of tablets as 100 (it doesn't come in blister packs of 28 or 30 like UK tablets) and the dose of the tablet, eg 20mcg

Check out member helvella 's article on this here: dropbox.com/s/dxai7lkovl95y...

Fifteen profile image
Fifteen in reply to SeasideSusie

Susie, this is very helpful. I now have a much better knowledge of the products available. Thank you.

Prices are not mentioned in the articles.

If anyone uses the Sanofi product, please let me know the prices charged.

SeasideSusie profile image
SeasideSusieRemembering in reply to Fifteen

I'm afraid I don't know the price but hopefully someone who uses it will be along and can confirm that for you.

jimh111 profile image
jimh111 in reply to Fifteen

It worked out about £28 for 100 x 20 mcg tablets including posting the prescription to them and paying for delivery. I used bennewitz. It's better if you can get your doctor to prescribe 100 tablets (or 50) as they come in packs of 50 and 100. A NHS prescription is fine, perhaps your doctor will write one if you promise to import and pay for the tablets yourself.

Fifteen profile image
Fifteen in reply to jimh111

Very helpful. Thank you

clairebear69 profile image
clairebear69 in reply to jimh111

Hi

I used bennewitz as well. They were v helpful. I had a prescription for 25mcg and they sent 20mcg but that’s ok. I felt confident as they are a reputable chemist 👩‍🔬

Jamyam profile image
Jamyam in reply to jimh111

Hi there do you have to send a prescription every time you order?

jimh111 profile image
jimh111 in reply to Jamyam

Yes you have to. Place the order and they send you an e-mail with the address to send it to (Bennewitz pharmacy). The prescription must state the same dose as the tablets and I'd advise getting the prescription to quote pack sizes. e.g. 50x 20 mcg liothyronine if you are getting Thybon Henning.

Fifteen profile image
Fifteen in reply to SeasideSusie

Susie, can you tell me where I can get Sanofi Thybon Henning tablets? I have an NHS prescription for them and need to find a pharmacy, presumably in Germany, to have the script dispensed.

SeasideSusie profile image
SeasideSusieRemembering in reply to Fifteen

Fifteen

The information was in my first reply above:

ThyroidUK article on how to get Thybon Henning here:

thyroiduk.org/tuk/treatment...

Scroll down to Alternatively, you can try some pharmacies in Germany. This is perfectly legal and they are much cheaper than the UK T3.

SlowDragon profile image
SlowDragonAdministrator

Thybon Henning 20mcg is in boxes of 100 tablets

31 Euro plus p&p from Germany

You need private prescription to read

Liothyronine 20mcg x 100

Your endocrinologist should have provided you with a prescription. Not left you high and dry

If your NHS endocrinologist says you have clinical need you should be prescribed on NHS. Initial few months via endo/hospital. Then care and prescription is transferred to GP

british-thyroid-association...

NHS prescription for T3 is still available. You may have to fight hard to keep/reinstate it.

If you have gluten intolerance, Hashimoto's, coeliac or lactose intolerance then may need addition of small dose of T3

DIO2 gene test is worth considering. If you test positive it's grounds for NHS prescription of T3

thyroiduk.org.uk/tuk/testin...

Write to your GP saying you do not agree to prescription being withdrawn and hold them responsible for any downturn in your health as direct result

Write to your own MP and Lord O'Shaughnessy and Lord Hunt

theyworkforyou.com/search/?...

Fifteen profile image
Fifteen in reply to SlowDragon

Interesting and helpful. Shall look at the gene test. My GP owes me as he missed 2 different cancers and did not follow up when the hospital did not reply then kept postponing my operation!

The prescription has been withdrawn without prior consultation so your suggestion to write to politicians could also help. Thank you.

jimh111 profile image
jimh111 in reply to SlowDragon

You can order from Germany with an NHS prescription but of course the doctor may not want to write it in case you take it to a UK pharmacy.

Forgot to say order 'Thybon 20 henning' since 'Thybon 100 Henning' is levothyroxine. A bit confusing when you can order 100 tablets.

helvella profile image
helvellaAdministratorThyroid UK in reply to jimh111

Nein!

medikamio

Medikamio Medikamente Thybon 100 Henning

Gebrauchsinformation

Was ist es und wofür wird es verwendet?

Thybon 100 Henning ist ein Arzneimittel, das als Wirkstoff das Schilddrüsenhormon Liothyronin enthält. Dieses hat die gleiche Wirkung wie das natürlicherweise gebildete Hormon.

The active ingredient is Liothyronin!

Sanofi Henning's Levothyroxin is inventively called L-Thyroxin Henning.

helvella profile image
helvellaAdministratorThyroid UK in reply to helvella

What is it and what is it used for?

Thybon 100 Henning is a medicine that contains as active ingredient the thyroid hormone Liothyronin. This has the same effect as the naturally formed hormone.

You get Thybon 100 Henning to replace missing thyroid hormone and / or to relieve your thyroid.

Thybon 100 Henning is used:

for bridging the thyroid hormone deficiency phases in the context of diagnostics and the preparation for radioiodine therapy in thyroid carcinoma,

to replace (substitute) the missing hormone in hypothyroidism

concomitant, proven or suspected T4 / T3 transformational deficiency (generally in combination with levothyroxine),

for investigation of thyroid function (thyroid suppression test).

(Automatic translation - take care!)

jimh111 profile image
jimh111 in reply to helvella

Whoops! I'm sure the Bennewitz website described it as levothyroxine but must be mistaken. They have now changed the results page you get when you search on 'Thybon' so I can't check. Clearly it is important not to mix up Thybon 20 with Thybon 100 as you will end up rather hyper. Thanks for pointing this out.

mfinn profile image
mfinn

I don’t know who told you that the NHS will not supply liothyronine free to the over 60s but they’re talking nonsense. I’m 71 and receive an NHS prescription for liothyronine every month. Of course, as is usual these days, there have been attempts to take me off it and put me on the ‘alternative’ levothyroxin but I have fought them all the way. After receiving a letter from the practice manager at my local health centre telling me the liothyronine would be stopped, I corresponded with him, pointing out that having been stable on it for several years I was not going to allow anyone to ruin my health. I sent copies of the British Thyroid Association’s guidelines which say that if someone is stable on liothyronine they should not be taken off it. I also visited my MP and explained that what was happening was all about the cost and he wrote a letter to my GP. I was forced to see an endo at our local hospital and I made it clear to him that I was not going to come off a treatment which has served me well for so many years. The endo made the right noises while I was with him then, before seeing the results of a blood test, sent a letter to my doctor telling him I was thyrotoxic. The results of the blood test showed that this wasn’t true so I stayed on the same dose. If they can’t get you one way they’ll try another so I was given a 24 hour heart monitor and a bone density scan. I expect there was disappointment at my health centre because the result showed no problem with my heart and my bone density was very good. I don’t believe being on the correct dose of liothyronine causes osteoporosis, my sisters suffer from it and they don’t take thyroid replacement. If the liothyronine had been stopped, or if its taken off me in the future, I’d buy my own but still carry on the fight. My local chemist used to provide liothyronine to a handful of people, now it’s just me. So what I’m saying is please fight for yourself because then you fight for us all.

Fifteen profile image
Fifteen in reply to mfinn

Impressive. Your energy and strength have encouraged me.

I do find my GP's behaviour totally unprofessional. Even though having it has changed my life for the better, he has been trying to find a way to stop this supply for some time, including seemingly misinterpreting blood results. He is not happy that I use a private endocrinologist for my testing.

He has not discussed this with me - I happened to see that it is no longer included in my list of medications.

You and others are giving me very worthwhile advice and information. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Fifteen

I was finally prescribed Liothyronine last year on NHS, after 24 years terrible ill health on Levothyroxine

DIO2 gene test was helpful in arguing my case

See my profile for more info

Improve Thyroid treatment group on Facebook also has lots of helpful info

Fifteen profile image
Fifteen in reply to SlowDragon

Thanks. How can I see your profile

SlowDragon profile image
SlowDragonAdministrator in reply to Fifteen

Click on any persons name. This takes you to their page.

Most regular posters or admin members have profile of their thyroid journey

Fifteen profile image
Fifteen in reply to SlowDragon

Great.

helvella profile image
helvellaAdministratorThyroid UK

My GP and pharmacist have never heard of this company or brand.

If they have never heard of Sanofi, the company, they do not deserve their jobs. There are at least 234 of Sanofi's products listed in the UK with product licences from the MHRA.

medicines.org.uk/emc/compan...

There are at least 108 mentions of the company in the British National Formulary – now under the wing of NICE.

bnf.nice.org.uk/#Search?q=s...

(There could be other products produced by subsidiaries under different branding. I simply do not know.)

We keep reading that if we have any medicine questions, we should speak with our pharmacists because they are the experts at everything to do with medicines. You do exactly that. And you meet a wall of, in my view, indefensible ignorance.

If they don’t know the company, look it up.

If they don’t know the brand, look it up.

If they don’t know how to get hold of it, contact their suppliers and ask.

If they don’t know how to order specials, find out.

None of these steps is in any way difficult.

We then see doctors and pharmacists criticising patients for turning to support forums! My goodness, is it any wonder? Within five hours or so you have received information about the product, the possible suppliers, the costs, the best way of writing the prescription, the best way of reducing cost to the NHS. And if many of us were not at work, or doing the other things that we do, you might have received all that within an hour.

Fifteen profile image
Fifteen in reply to helvella

I totally agree with you. Sanofi is a very well known and respected brand as I know from my business dealings in the industry. I, too, was shocked by the pharmacist's ignorance.

Perhaps too many of the people we have to rely upon for our health needs have lost interest and cannot be bothered to provide the level of care we expect and deserve.

Quokka profile image
Quokka

I've recently had 100 Thybon20Henning (20mcg tablets) delivered from mycare.de mycare.de/en/online-kaufen/... I sent a letter in English with my prescription to say what I wanted (not signed for or recorded as it goes to a PO box.) I have private prescriptions from my GP which cost the NHS nothing. Then I used their online order form- it' s in German but just the usual- name, address, etc. After 2 or 3 days they sent me an automated email telling me to pay, and giving their bank details. You have to add 17EUR for delivery. My T3 arrived within a week of payment.

Fibefm profile image
Fibefm

Hi fifteen I get thybon 20, but through my own research of finding a local pharmacy that could get hold of it. It’s on prescription so I don’t pay for it, but I also have to stick with this brand as it’s the only one that doesn’t give me a headache!

clairebear69 profile image
clairebear69

Hi

I used bennewitz as well. They were v helpful. I had a prescription for 25mcg and they sent 20mcg but that’s ok. I felt confident as they are a reputable chemist 👩‍🔬

linda96 profile image
linda96

UrsaP

Jeni-M profile image
Jeni-M

Hello, can anyone tell me how to pay for these thybon henning I sent an email but not received any answer. JeniM

Fifteen profile image
Fifteen

I suggest you phone and speak to Mr Torsten Spenke, the Pharmacist +49 3733 18070. I have found that he is usually available on Fridays.

Then send an email to him with a scan of your prescription.

Post your prescription (include a copy of your email). It cost approx £6 - £7 for postage, I think for speedy delivery. Best to post before midday, the Post Office told me.

Bennewitz sent an email when my prescription arrived setting out the cost (€30,40 for 100, plus postage €6,90). I always pay by credit card - I think that is what is usual.

It all takes about 7-10 days.

Fifteen profile image
Fifteen

Just one additional comment.

Bennewitz requires a prescription from an EU doctor.

After Brexit, we will be a separate country and our doctors' prescriptions will not be valid in the EU.

We just have to hope that, if there is a transition period, our prescriptions will still be acceptable during that time.

Kandahar profile image
Kandahar

Not sure if I can give you details of how to get Thybon Henning 20mcg on here so message me and I’ll let You know. 100 has just cost me about £27 plus about £7 for postage from Germany. You need to get Your GP to give you a prescription.

I am trying to source a supplier of LIOTHYRONINE 25mgs OD (special) SP tablets, they are made by the firm SANOFI in France.I used to be able to get these on my NHS prescription but they are no longer available. Does anybody have any ideas?

Fifteen profile image
Fifteen in reply to

Elgar1 (love the name by the way), I have not found a supplier for Thybon Henning. I bought enough (from the German pharmacy) before 31st December to last me for this year. I too am looking for a new supplier. My GP will not prescribe it here . If you get any positive news in reply to your request, please let me know by private message.

in reply to Fifteen

I am on the case and will keep you posted.

in reply to Fifteen

I am investigating a supplier in Holland, coutesy of hellvella, the Administrator. (ACE PHARMA)

helvella profile image
helvellaAdministratorThyroid UK in reply to

I do not know how things have progressed, but there was a major shortage of Sanofi Cynomel a while back. Patients in France were getting a dribble of supply.

Maybe a pharmacy would be able to get Ace Cytomel from the Netherlands?

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, around the world.

dropbox.com/s/shcwdwpedzr93...

(I don't quite get the "OD (special) SP" bit of your description! Can you tell us more?)

Fifteen profile image
Fifteen in reply to helvella

Now that the horrendous price increase scandal has been exposed, I wonder if the price for liothyronine on the NHS will go back to the original level. If so, I wonder if the clinical advice on prescribing it will be modified.

Cynical perhaps, but price of medication seems to have played a central role in this.

helvella profile image
helvellaAdministratorThyroid UK in reply to Fifteen

I am not expecting massive price reductions. Nor any changes to prescribing policies.

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