Private and NHS for thybon henning: I’ve been... - Thyroid UK

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Private and NHS for thybon henning

Sewing12 profile image
7 Replies

I’ve been seeing a private endo for 16 years who was prescribing my T4 and T3 and my Gp was fine with that Then just before the pandemic my gp called me in and said he was stopping my T3 and did so there and then , when I said “but they are prescribed by a private endo, he just said I haven’t heard from him for a while. But if you want to be referred to a NHS endo I’ll do what he says.

Cut a very long story short I’ve now gone back to my private endo and he has said all my metabolic problems including the 3 stone weight gain are largely due to the T3 been stopped . He’s very concerned because I have a coiled brain aneurysm and the problems I’m having are putting pressure on it.

He wrote my gp a long letter which was respectful but too the point but my GP took umbrage to it and was really irate during our telephone appointment ( haven’t seen for a face to face for nearly three years when he stopped my t3). I’ll be kind and say we got cut off on the phone but he didn’t ring me back when I phone the receptionist and said “ I was just speaking to Dr but think I may have been cut off)

He’s refusing to prescribe T3, he said “ we don’t have to do the investigation that he wants” or prescribe meds he say I should have. I’ve never heard another dr be so disrespectful to another, especially a go about a consultant.

So I have posted on here asking where to get t3 and you lovely people have pointed me in the right direction.

I’ve now got a prescription for Thybon Henning form my private endo and have checked where to get it filled, so I’m okay or meds for a while.

In the meant time I have received a referral letter from my gp. He use have though about our conversation and decided to refer me to our local hospital I had told him I didn’t want to move from my private endo but he’s still done the referral it’s to a endo referral assessment unit.

I have got a question and that is. Whilst I’m ok at the moment because I have the private prescription and know where to get it filled . If by any chance my gp is told by a nhs endo I need t3 and he then prescribes it can that nhs prescribe then be used for the thybon henning t3. As it’s Thybon Henning a good substitute

I ask this as i am conscious of the cost of t3 here in UK and that it’s quite astronomically priced.

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Sewing12
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7 Replies
shaws profile image
shawsAdministrator

GP should follow what an expert suggests for the patient. If we are prescribed T3 the local pharmacist usually has a selection that we can choose from.

SeasideSusie profile image
SeasideSusieRemembering

Sewing12

If by any chance my gp is told by a nhs endo I need t3 and he then prescribes it can that nhs prescribe then be used for the thybon henning t3. As it’s Thybon Henning a good substitute

I ask this as i am conscious of the cost of t3 here in UK and that it’s quite astronomically priced.

I don't have T3 on prescription but my understanding is that Thybon Henning can be obtained on private prescription when named but it's not a brand that can be dispensed on NHS prescription.

helvella has a document on all thyroid medication which you can find here, at the bottom of the first page you will see some coloured tabs, click on the first orange T3 tab (under UK) and it will take you to a list of all the brands available on the NHS:

dropbox.com/s/wfhrlmb5983co...

The cost of NHS liothyronine has come down considerably from a couple of years ago, I'm not sure of the current cost but believe it to be less than £100 per box, but that should not be a worry for you personally as if NHS prescribed you wont pay for it.

helvella profile image
helvellaAdministratorThyroid UK in reply to SeasideSusie

As I understand, except under shortage conditions, pharmacists must supply a product that has a UK licence when one is available. Therefore, they cannot supply against a prescription which just says Liothyronine (even if it is for 20 microgram tablets, which would fit the bill).

If the prescription were written in such way as was to mean that Thybon Henning would be suitable, and there were NO UK licensed products available, then it could be supplied. (For the specific branded product, or for the active ingredient Liothyronine hydrochloride) ) But at that point it would probably be treated as a Specials prescription and cost an awful lot more that the retail price we see quoted. Even then, the prescriber might have to explain what they were thinking of at some point. And you might have some difficulty finding a willing pharmacy.

Star13 profile image
Star13

If you see a NHS Hospital consultant and they prescribe T3 you won’t actually be given a prescription as you will have to get your T3 from the hospital pharmacy. You can ask the NHS Endo if he/she is agreeing to prescribe T3 if you can have Thybon Henning but there would have to be a reason why you must have that particular brand rather than a UK one as the MHRA has now said that consultants have to sign a form stating clinical need for the TH brand which came in 3 months ago. As you have been on TH for a long time and are stable on it then that is one of the reasons they will accept for clinical need as is lactose intolerance.You only have to start concerning yourself with actually getting a NHS prescription for T3 once your Hospital Endo discharges you back to your GP and then if he is willing to take over your treatment at that time.

Sewing12 profile image
Sewing12

I was only concerned at the cost to the nhs it’s not that I want Thybon henning specifically. So from what I’m reading am I right in thinking that if the nhs endo says I must have t3 it’s dispensed from the hospital and not the Gp. But the Gp can take over the dispensing if they choose to do so

SeasideSusie profile image
SeasideSusieRemembering in reply to Sewing12

Sewing12

Don't worry about the cost to the NHS. When you think what they spend money on for non-life giving medications for what some consider 'not medically necessary reasons' then you are entitled to your life giving medication without worrying about what it costs. It's up to them to sort out their housekeeping.

Your trial of NHS T3 will be initiated by the NHS endo and the hospital will dispense it. If, after the trial, the endo says you should continue on T3 then your GP surgery should take over prescribing. Once prescribed by your GP the dose should not be changed unless you are referred back to the endo and he makes the decision.

Lovecake profile image
Lovecake

Hi, I get Thybon from a private endo. He said that it should be possible for my GP to prescribe the T3 now (it’s been 5 years). I said no thank you as I was concerned that a): they could suddenly decide to stop it, and b): I might not be able to get Thybon Henning. I don’t do well with changes of tablet, so as I get on well with TH I don’t want to chance a different brand.

For example, I can take my Thybon if I have a bad head, but not my Levo as it makes a basic headache turn into a migraine.

While I can afford my Thybon I will pay for it (I actually spend less on that than supplements per year), it’s the occasional endo appointment that costs more.

All the comments are really helpful (as always) and I wish you the best with whatever you decide 🙂🧁

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