Availability of lactose free T4

[super1]

Hi,

I have been on L'Thyroxin Hennings for 15 years on a named NHS prescription due to my severe Lactose intolerance. For past 6 months, the 25mcg has been harder to source but I have managed to get the 100mcg. The pharmacy is trying to locate the 25mcg and the supplier Clinigen has replied its on order from now on and does not stock both anymore. The date is always getting extended for the 25 mcg. They have given no more information. Are there issues with Hennings supply? Do we know who to contact beyond the supplier to know what is happening here?

Be grateful for some help.

[Jaydee1507 Administrator]

I'm surprised you're able to get L-Thyroxine - Henning on the NHS, its probably a rare prescription.

If you need lactose free 25mcgs you could ask for Vencamil which is a lactose free brand that most people tolerate well. Its only recently been available in the 25mcg size.

[super1 in reply to Jaydee1507]

I was diagnosed at hospital as being severely lactose intolerant and could only take lactose free medication. As even a little lactose leaves me with severe stomach cramps. Thanks for the advice.

I did once try TEVA brand and that did not agree with me. Probably was the mannitol.

[Regenallotment Ambassador]

Hi there,

Do you mean T3? I have Thybon Henning on private prescription, 100 tablets, 20mcg.

I also have to have lactose free Levo (T4) and Lio (T3).

I am not aware of any shortage. But if anyone knows it will be helvella

[super1 in reply to Regenallotment]

Hi, yes I do mean T4. L-Thyroxin Henning 25.

[Regenallotment Ambassador in reply to super1]

Ah sorry, as Jaydee1507 said Vencamil by Aristo is a good lactose free alternative T4. I too get those symptoms from anything with a lactose filler and Teva made me itch and gurgle. Vencamil is smooth and symptom free 👍

[helvella Administrator]

I liked L-Thyroxin Henning when I got hold of it some years ago. I'm not lactose-intolerant, but I have found lactose-free levothyroxine preferable to those which contain lactose. And I too did not get on with Teva.

The specialist importers are next to impossible to deal with - they simply will not engage with mere patients.

I suggest you try to get Aristo Vencamil - which is a German-made lactose-free levothyroxine. Details in my document.

Look at Appendix F of my document to see exactly how it needs to be prescribed.

It is distributed by Alliance and should be easy enough for the pharmacy to get - provided you get a properly written prescription.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK-licensed products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), British National Formulary, NHS Drug Tariff, etc. PLUS how to write prescriptions in Appendix F.

Also includes links for anti-thyroid medicines (but not product details).

📄 dropbox.com/s/bo2jzxucgp9hl...

[VioletElizabeth]

The higher doses have been discontinued but some on line German or French pharmacies do have them.

[helvella Administrator in reply to VioletElizabeth]

Interesting. Their own website shows dosages up to 200 micrograms:

mein.sanofi.de/produkte/l-t...

Could it be the 98 Stücken Kalenderpack which are discontinued?

Screenshot showing 150 in 98St, and 175 & 200 in 50 & 100.

[VioletElizabeth in reply to helvella]

Maybe you are right, but I was informed of this by the Apotheke who had been sending me Henning for years and I accepted their info that it was being discontinued - although there was some gossip about the German Government pushing Euthyrox from Merck which contains Mannitol - I was even sent this as a substitute but it looked pretty lethal to me. I am now pretty happy with Aristo Vencamil which is also German. I remember when I was originally diagnosed, over 20 years ago, I was in Germany and they were very careful to find the right medication for me - which at the time was L-Thyroxin Henning!! such is life!

[helvella Administrator in reply to VioletElizabeth]

Who knows?

But I cannot even dream up a reason for pushing Merck over Henning. Surely Sanofi is big enough to hold its own?

Yes - I can understand why Merck over lactose-containing products. (While disagreeing!)

And I certainly hope Henning does not disappear.

[VioletElizabeth in reply to helvella]

I was actually sent 2 years supply of Merck - !! - I have now heard from Germany that there are some temporary withdrawals of Henning - am glad I seem to tolerate the Vencamil but it's a bit early to accept that it will be fine however I am hopeful- I was really stressed living with the uncertainty of finding the Sanofi L-Thyroxin Henning but Brexit made the process worse so much worse - in hopes-----

[Jinker]

I also can only tolerate L-Thyroxine Henning as I have reacted badly to Teva and even Aristo, the UK available lactose free alternatives. I have to get a hand written prescription from my GP stating Henning Sanofi Brand in first line. It is great my practice is so accommodating. I use Boots and they find supply of 25s can be so difficult to get hold off from the only wholesale distributer which,as you say, the very unhelpful Clinigen. My prescription went into Boots last week and it can take weeks, so I will let you know if I get the twenty-fives. Sometimes I have had to get my GP to rewrite my prescription as fifties and cut. I take 75mcg.

[super1 in reply to Jinker]

The prescription I got in May was filled in July for both 100mcg and 25mcg and my August prescription, the 100mcg took a month and 25mcg are expected in November. Before May, I never experienced any issue in 15 years and it always took a few days to arrive. Clinigen said they don't hold stock anymore and it needs to be ordered in. I am going to try getting Aristo, only due to the easy of getting hold of it.

[Jaydee1507 Administrator in reply to super1]

I'm sure you'll be fine with Aristo Vencamil. Years ago there were no options at all for lactose free Levo, then liquid Levo happened but it was very expensive.

The arrival of Vencamil in 3 dose sizes has really opened up options for people with lactose issues.

[helvella Administrator in reply to Jaydee1507]

Don't miss that it was Teva (new formulation) that was the first lactose-free tablet in 2016!

Glenmark is also lactose-free.

But then it became unavailable (though the odd pack does seem to have been received) - though we are hopeful it might return.

Don't hold your breath - the PAR was approved in 2020, the product arrived in 2023, and disappeared (mostly) very quickly.

Though I would choose Vencamil every time!

[super1 in reply to helvella]

My surgery has written up my Vencamil prescription as described in your pdf. So hopefully I will get it soon. Thanks for your help.