Thybon Henning : Hi all, I am being referred... - Thyroid UK

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Thybon Henning

Hookie01 profile image
33 Replies

Hi all,

I am being referred back to my endo and I want to get my T3 prescription back ( I gave up on T3 because I couldn't source lactose free from the chemist as they weren't very helpful).

I want to ask my Endo for a prescription for thybon henning as I have heard good things about it and it's lactose free. Can someone tell me how to go about this please?is it only certain chemists you can get it from? Is it very expensive?

Thank you.

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Hookie01 profile image
Hookie01
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33 Replies
jimh111 profile image
jimh111

Your doctor can specifiy lactose free on an NHS prescription and then you can send it to one of the pharmacies on the Thyroid UK list thyroiduk.org/if-you-are-hy... .

Alternatively your GP could write private prescriptions for Thybon Henning (multiples of 50 tablets - pack size) and you can pay privately. They used to be 50p a tablet but I think the price has gone up a little.

Do you really need lactose free? Many patients seem to be kidded into thinking they need lactose free when they don't have a problem, hence why I'm asking.

Hookie01 profile image
Hookie01 in reply tojimh111

Thanks jimh111. Before having RAI I didn't seem to have a problem with lactose, but as soon as I started meds my upper stomach bloated and had pain on the right hand side under my rib. It got worse when consuming lactose, so I tried lactose free meds and it was so much better. So yes, I think I do need lactose free meds!

jimh111 profile image
jimh111 in reply toHookie01

That's interesting. It sounds like you had gall bladder problems but I guess it's possible the RAI damaged the stomach slightly reducing your ability to produce lactase. This is speculative and I think unlikley but I can't think of any other explanation. Sometimes bloating is due to IBS caused by hypothyroidism.

I assume you had high antibodies and associated with this could have been an autoimmunte attack that damaged the lactase secreting part of the stomach but you only noticed this after RAI when you needed to take tablets.

Hookie01 profile image
Hookie01 in reply tojimh111

I had scans shortly after when the pain and bloating started, they couldn't find anything. I still get the pain if I eat certain foods etc. In fact, at the moment I'm really struggling with bloating at the moment with is aggravating the pain on the right hand side, so another trip to the drs for me. Yes, I have graves disease, totally sucks, just currently trying to get myself feeling as best I can.

SlowDragon profile image
SlowDragonAdministrator in reply tojimh111

jimh111

pharmacies on the Thyroid UK list Estimation of Dietary Iron Bioavailability from Food Iron Intake and Iron Status .

Think this might be a new software bug or gremlin

Or an incorrect copy and paste?

jimh111 profile image
jimh111 in reply toSlowDragon

Should be thyroiduk.org/if-you-are-hy... . I've corrected the original. I usually double check but got called away as I was typing. Thanks for pointing out, must of caused some confusion.

SlowDragon profile image
SlowDragonAdministrator

Is this NHS prescription or private one?

Thybon Henning not available on NHS

Private prescription enables access to Thybon Henning

Yes it’s lactose free

Cost 50-60p per tablet

In boxes of 100 tablets

Available from specialist pharmacies

Ring or email for best price

thyroiduk.org/if-you-are-hy...

Hookie01 profile image
Hookie01 in reply toSlowDragon

Thanks slow dragon. I'm guessing it would have to be private.

TiggerMe profile image
TiggerMeAmbassador in reply toSlowDragon

Is Thybon Henning still not available on the NHS?

What do they prescribe if you need lactose free T3?

SlowDragon profile image
SlowDragonAdministrator in reply toTiggerMe

no Thybon Henning is not licensed for use in U.K. on NHS

Teva 20mcg is lactose free - £55 per 28 tablets

Roma capsules are also lactose free

Capsules can’t be split easily - cost £55 -£65 per 28 tablets depending on capsule dose

Capsules Available as 5mcg, 10mcg and 20mcg doses

TiggerMe profile image
TiggerMeAmbassador in reply toSlowDragon

I did request Thybon Henning, they'd not heard of it.... didn't say what they would usually offer?... Wonder what I will get a script for then? 🤷‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply toTiggerMe

Do you need lactose free?

Prescription doesn’t usually specify brand if tablets

Choice for 20mcg tablets

Mercury Pharma - loose in a pot

Morningside healthcare - blister pack

Teva - lactose free bister pack

5mcg or 10mcg tablets - Morningside healthcare only

TiggerMe profile image
TiggerMeAmbassador in reply toSlowDragon

Yeah, I've tried to re-introduce all sorts of lactose... not good. So, if I can avoid it I will.... guess I'll have to wait and see... generally it seems all T3 options are less of an issue than the T4 variants?

A splitable tablet has to be the preferable whilst finding which timing/dosing etc works?

SlowDragon profile image
SlowDragonAdministrator in reply toTiggerMe

private prescription - by far cheapest is Thybon Henning at 50-60p per tablet. Boxes of 100 tablets

TiggerMe profile image
TiggerMeAmbassador in reply toSlowDragon

I'm assuming as it's an NHS prescription then it's covered by my medical exemption?

Or are you saying if it states Thybon Henning I shall have to pay for it, as NHS wont? Presumably if they can't offer it, they can't give me a script for it? 😳

helvella profile image
helvellaAdministrator in reply toTiggerMe

If it is an NHS prescription, yes, it will be covered by your exemption.

However, they might be unwilling to write such a prescription.

And, if they do write it, you might have some fun finding a pharmacy who will dispense it.

So - it is possible but could be a rocky road getting there.

TiggerMe profile image
TiggerMeAmbassador in reply tohelvella

Yep... that's what is just dawning on me 😕 my brain has definitely slowed since I lowered my dose.... hibernation mode has kicked back in 🙄

TiggerMe profile image
TiggerMeAmbassador in reply tohelvella

Ah well, we all love a challenge... glass ceilings are there to be smashed 🤗

SlowDragon profile image
SlowDragonAdministrator in reply toTiggerMe

If you saw an endocrinologist on NHS it will be NHS prescription and almost certainly won’t specify brand of T3

If you’re lactose intolerant, it should say lactose free liothyronine only (which would be Teva)

What dose are you prescribed…..or don’t you know yet

TiggerMe profile image
TiggerMeAmbassador in reply toSlowDragon

Starting on 10mcg split in two to replicate the 12.5mcg of Tiromel that I presently take

TiggerMe profile image
TiggerMeAmbassador in reply toTiggerMe

Presumably they just accept it when you say you are lactose intolerant?... I've not been tested, I've had to work it out for myself... along with the nightshades, histamine, barley..... thinking about it, it's unusual for them to take a patient's word for it 😬

TiggerMe profile image
TiggerMeAmbassador in reply toSlowDragon

Do people generally find the different makes of T3 interchangeable, or can it be as disruptive as changing T4 brands do you find?

SlowDragon profile image
SlowDragonAdministrator in reply toTiggerMe

some people don’t seem to notice

Others can only tolerate/stick on one brand

Personally it took me 2-3 months to get use to Morningside T3, having previously been on Mercury Pharma (MP seemed weaker than Morningside)

SlowDragon profile image
SlowDragonAdministrator

Are you on lactose free diet?

Teva brand of levothyroxine (which use to be the only lactose free brand) upsets many people as it contains mannitol

There are now Aristo and Glenmark lactose free levothyroxine

Are you on lactose free levothyroxine?

Teva liothyronine doesn’t contain mannitol.

Hookie01 profile image
Hookie01 in reply toSlowDragon

I try my hardest to be completely lactose free, but sometimes I just can't resist a bit of cheese lol. Don't like milk or yoghurt and things like that. Im on Aristo levo. Teva caused me pain and made me depressed. I couldn't get hold of teva T3 for love nor money. Drs wouldn't put it on my prescription and chemists would just say you get what you are given. Drs have now taken T3 off my prescription and won't put it back on, so will have to hope the endo will give it back to me. I have Aristo lactose free stated on my prescription for levo, but guess that's ok because its not expensive!

SlowDragon profile image
SlowDragonAdministrator in reply toHookie01

Your endocrinologist could and should specify Teva T3 on prescription

Cost of all three brands is identical and dropped significantly…currently £59 for 28 tablets 20mcg

Down from £268 when only one exploitative supplier

Hookie01 profile image
Hookie01 in reply toSlowDragon

Oh wow, that is a huge difference, hopefully that will make it easier to get! Thank you slow dragon. I will demand this when I finally get my appointment through. I'm so sick of all this fighting just to feel better, it's exhausting in itself isn't it! Do feel like just giving up some days!

SlowDragon profile image
SlowDragonAdministrator in reply toHookie01

Roma capsules are also lactose free (according to Helvella’s list)

Capsules cheaper…..if you don’t need split dose

healthunlocked.com/thyroidu...

Hookie01 profile image
Hookie01 in reply toSlowDragon

Oh, I've never heard of those, will have a look. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toHookie01

Very new

helvella profile image
helvellaAdministrator

My medicines document has little tables of which makes contain lactose, mannitol and acacia - the most commonly reported problem ingredients.

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, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

SlowDragon profile image
SlowDragonAdministrator

Search out small independent pharmacies….they tend to be more helpful

Hookie01 profile image
Hookie01 in reply toSlowDragon

Will do, thank you.

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