Help with obtaining Thybon Henning liothyronine

[dizzy864]

Hi everyone,

I have a NHS prescription for Thybon Henning only liothyronine and liquid levo thyroxine. Tesco ( Lincoln ) has been ordering these in for me for over four years.

For the past couple of months Tesco has been unable to supply the liquid levo and I've been getting a separate prescription from my gp and getting it filled at a local Boots store. This month Tesco were unable to obtain either levo or lio and advised me to take the prescription to Boots. I went to Boots and they assured me that they could obtain both.

On collecting them this morning, I found that I had not got Thybon Henning lio but four small bottle of Sigma Pharma lio. No real surprise but annoying! After being assured it was fine and me refusing to accept it, I went back to Tesco to ask them to keep trying to obtain it. Tesco then told me that there supplier is no longer able to obtain the Thybon Henning Lio. They were unsure what the situation is with the liquid levo.

I don't understand the problem with the liquid levo. This keeps on happening. I can have any brand although I have always been given Zentiva. I understand that there are eight or nine different brands, how are they all unavailable to Tesco at the same time?

I would be grateful if anyone can advise me where I can obtain Thybon Henning lio and liquid levo regularly on an NHS prescription? I don't know anything about on line pharmacies. Is that option more feasible?

Also, I visit Germany regularly. Is there any way of obtaining Thybon Henning there with a UK prescription? If so, what would it cost and how do I go about it?

Thanks for your help in advance.

[Regenallotment Ambassador]

if a GP specifies a brand on the prescription the pharmacy does need to order it in. You could ask your GP practice to do this for you.

Some pharmacies rely only on their wholesale suppliers delivering a variety of brands and if the wholesaler stops stocking them this issue comes up. I wrote to my MP about this last year and had real success, the ICB investigated and gave training on how to order in specific medicines to the pharmacies in the area. They can do it and often just need to know what codes etc to order it with. Often a small independent pharmacy will be better than a large boots or supermarket pharmacy.

I take thybon but buy mine via private prescription from a compounding pharmacy if you have an NHS prescription you would be best asking around town at all local pharmacies and finding one willing to take the time to order it for you.

Since Brexit there is zero chance of getting it from Germany legally with a UK NHS prescription. 🌱

Link to my post about writing to MP

healthunlocked.com/thyroidu...

Link from Health Minister (last year) stating Gov position on patients getting the right Levo for them healthunlocked.com/thyroidu...

[dizzy864 in reply to Regenallotment]

Thanks for your reply. My GP agreed to me having Perigo on a special order about eight years ago. When there were supply issues with that, I switched to Thybon. My local co op pharmacy was not helpful at all. Just said I had to have whatever came in and that it would not necessarily be the same every month. Tesco has been very helpful and ordered it in for me. Suddenly they say they can no longer obtain it for me. I ll have to make some phone calls!!

[helvella]

I think that obtaining Thybon Henning on an NHS prescription now requires it to be treated as a "special" - but I do not know for sure. Possibly a good idea to contact the pharmacies identified by Thyroid UK:

thyroiduk.org/get-support/t...

Does your prescription say "Thybon Henning" on the top line? See Appendix F of my linked document.

There are now only four levothyroxine oral solutions. (Unless something has changed since I last checked.)

I think pharmacies are very risk averse and try not to order any expensive medicines until they have a valid prescription in their hands. And levothyroxine oral solutions are expensive! In the range around £50 to £300 per bottle.

bnf.nice.org.uk/drugs/levot...

UK prescriptions are no longer valid in Germany - or anywhere else so far as I know. (With an oddity re Northern Ireland and Ireland.)

helvella - Thyroid Hormone Medicines - UK

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

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

📄 dropbox.com/s/bo2jzxucgp9hl...

Levothyroxine oral solution products

[dizzy864 in reply to helvella]

Thanks for your reply. I have been getting Thybon on a special order for some years now and Perigo before that. Tesco order it in each month when they get my prescription electronically from my GP. It's worked well most of the time.

[SlowDragon Administrator]

Have you tried Teva T3 20mcg tablets

Also Lactose free like Thybon

Thybon Henning will be expensive to NHS as it’s not got U.K. licence

So it’s a “special prescription”

There’s little price regulation on special prescriptions

[dizzy864]

Thanks for your reply. No, I haven't tried Teva lio. I really didn't get on with Teva levo!! But also I don't think it's vegetarian. It has magnesium stearate in it which can be vegetarian but usually isn't and sometimes manufacturers switch between vegetarian and animal sources. I think that is particularly bad. I am ultra sensitive to everything and need a tablet with as little as possible in it and it absolutely must be the same all the time.

[helvella in reply to dizzy864]

You also cannot know if glycerol is wholly vegetarian sourced unless you contact the company.

[dizzy864 in reply to helvella]

Thanks for that. Before taking perigo and then Thybon, I emailed all the various manufacturers to make sure they were vege. I found surprisingly few are!

[helvella in reply to dizzy864]

What about the glycerol in the levothyroxine oral solutions?