Please help obtaining Cytomel in Uk on NHS prescription

[Suzanne59]

I have been told by pharmacists that Cytomel 5mcg is no longer available for the foreseeable future. I cannot tolerate the generic forms. Most likely the excipients.

I have tried independent and chain pharmacies none have any left in stock. My GP has issued me with a private prescription as I only have 7 days of medication left. I cannot tolerate liquid levothyroxine this is why I’m on Liothyronine.

I have Hashimotos, Crohn’s disease, Permanent Ileostomy, and severe bowel dismotility. On liquid diet of Ensure.

I am seen at Addenbrookes Hospital and they have mentioned having injections, as even the Cytomel gives me side effects but not as severe as generic eg Sigma Pharm

Any ideas or advice how to obtain Cytomel 5mcg. I am in the UK. Greatly appreciated. I have NHS and private prescriptions. But can not afford to buy privately in the UK

Many thanks for reading.

[helvella]

A company in the Netherlands is producing a product they brand Cytomel - in 5 microgram tablets. THIS IS NOT FROM PFIZER IN THE USA.

Obvoiously, I have no idea whether you would tolerate it.

The link below is to the company and they appear willing to talk to hospital pharmacies in other countries. I suspect you would have, somehow, to persuade the Addenbrookes pharmacy to contact them and take it from there.

ace-pharm.nl/en/cytomel-5-m...

[Suzanne59 in reply to helvella]

My prescription comes from my GP. Addenbrookes only advises that is what I need and do not prescribe themselves. Due to cost.

Can my GP sign this form or does it have to be a Consultant ?

Thank you for your prompt reply, very helpful and what a significant difference in price !

[helvella in reply to Suzanne59]

I have no idea - you would have to discuss with whichever pharmacy you need to use. (Whether that is hospital or high street.)

heathermr has responded and that might help.

[heathermr]

I have Ace Cytomel on prescription from my Gp, admittedly the 25mcg size. It's an excellent drug and works the same as Cytomel from America or Canada. I get it through a small local independent pharmacy as most of the larger pharmacies , like Boots, supermarkets etc, cant be bothered to source it for you. It arrives very promptly from The Netherlands often in just days although occasionally I have had to wait a couple of weeks for new supplies to come in. The hardest bit is getting the Gp to write the prescription as he moans about the cost and pressure from the CCG. However my Endo is supporting me as I can only take T3 so fingers crossed!

Heather

[helvella in reply to heathermr]

Do you have any idea of the cost? (Not that you should need or be expected to know. Just asking on the off chance.)

[Suzanne59 in reply to helvella]

On their website it says €25.50 a box of 30 + VAT

[helvella in reply to Suzanne59]

It does, indeed.

But in the UK we would see a higher price due to the need to import it. And it is what the pharmacy would charge the NHS that might be important!

[Suzanne59 in reply to helvella]

I’m quite new to all this and it is definitely a learning curve, trying to understand prescriptions , availability, costs, CCG’s

But thanks to you all I’m understanding it a little more.

Bottom line you have to be your own advocate and keep trying to get the help, which I’ve found over the last 2 years isn’t always readily offered. As the old saying goes “If you don’t ask ,you don’t get “

I have just had a email back from Tollesbury Pharmacy in Essex saying if I email then post my prescription to them they can fill it ! I’m so happy I can’t explain the relief as I’m down to 6 days of tablets left . For months now my pharmacist has contacted suppliers and I’ve phoned round the country trying to find stock. At least I now have breathing space to try and get the Ace Cytomel prescribed.

Many thanks. 🙏🏻

[helvella in reply to Suzanne59]

It is very difficult - but the most important lesson is exactly that, you have to look out for yourself.

Never trust. Never assume. Always get information in writing.

[heathermr in reply to helvella]

The last time I asked it was about £4 a tablet for the 25mcg of Ace Cytomel which is considerably less than British T3 in any of its forms. Given than the Cytomel is much better quality than British T3 ( by around 150%!) this to me is a good price for the NHS to pay. I can't take T4 so I have no choice and I take 2.5 tablets of Cytomel a day to keep me going.

Heather

[Suzanne59 in reply to Suzanne59]

Minimum of 10 boxes to be ordered.

[Suzanne59 in reply to heathermr]

Hi Heather, thank you for that information. Do you remember who signed the Physicians Statement for you . Was it your GP or Consultant ?

[heathermr in reply to Suzanne59]

Originally this was prescribed by an Endo probably nearly 10 years ago and my Gp has been prescribing it ever since. I have seen several Endos recently as it seems my pituitary is now failing and its been a fight to get an Endo to even talk about T3. However the latest one is actually listening to me now and "is providing the paperwork to the Gp to allow me to continue to receive Cytomel." I would never go back to British T3, its so poor in quality and variability. This paperwork is presumably the Physicians Statement you were asking about.

Another alternative you could consider is to use 25mcg tablets of Cytomel and break them into quarters. The tablets are heavily marked into quarters already and almost fall into quarters containing about 6.25mcg instead of your 5mcg. This is a slight increase, I know, but I think this would be the cheapest option and probably much easier to get dispensed.

Heather

[Suzanne59 in reply to heathermr]

Unfortunately my GP is saying she doesn’t have the option on her computer to prescribe 25 mcg tablets only 5 mcg. And neither are available in this country for the foreseeable future. Only what pharmacies have left in stock.

The bottle says Pfzer Canada yet on my prescription it’s Pfzer USA, Cytomel is unlicensed in this country so Pfzer tell me. The only thing that happened which may not have anything to do with it, the day after the vote to leave the EU it was no longer available to suppliers . And none of them know why ?

I can only assume it’s more expensive to the NHS than the generic brands available here. As Liothyronine works for me it’s the excipients that I cannot tolerate especially having Crohn's disease, Cytomel is not perfect but the lesser of the evils. Which is even getting the locum at Addenbrookes to understand this difficult. Unfortunately the previous Consultant I saw there has now left ! So a 6 hour round trip to bang my head against a wall !

[helvella in reply to Suzanne59]

The U.S. Food and Drug Administration (FDA) has a website where information about all approved medicines is available. For Pfizer Cytomel, it shows labels which state "MADE IN AUSTRIA". (However, it appears the company that actually makes them, Peptido GmbH, has factories in Germany and we have seen discussion about some tablets being made there.)

dailymed.nlm.nih.gov/dailym...

The web page says "Updated July 23, 2019" and "New drug application".

Reading between the lines - dangerous because it could be the wrong interpretation - Pfizer has relocated manufacturing and that resulted in the need to make a new application for the product.

It could well be that any such change has also resulted in changes to availability.

I'd ignore the Canada/USA issue. Quite possibly the USA arm got stock from Canada or the importer found some in Canada, or a better price.

Do bear in mind, doctors CAN write prescriptions for things not on their systems. This simply has to be the case. They might not know how, or might not want to, but they can.

[Suzanne59 in reply to helvella]

Thank you so much for that information. I have a phone call with my locum consultant this week, and will definitely call my GP and pharmacist and let them know also.

[heathermr in reply to Suzanne59]

I have just had a repeat prescriptions of my Ace Cytomel (25mcg) which arrived very promptly as normal. Mine always come in blister packs in boxes and never loose in a bottle. There is no question that these are no longer available so I think it's your local CCG putting limiting measures in place. This Cytomel is still cheaper than any of the British versions that are currently available.

Heather