I'm a bit upset and anxious. To the outside world it may seem petty or ridiculous, there are bigger problems I know. My partner collected my prescription and the pharmacy have given him Zentiva rather than my usual Mercury Pharma.
I know things are difficult to obtain, but I trialled Brill Pharma recently and I didn't realise how unwell I'd gotten as my TSH shot up. It sometimes takes months to realise how bad things have got, get a blood test and then months to re-stabalise. I've lost years of my life trialling things with various consequences, so now I've got real anxieties when handling these matters despite putting on a brave front for others.
I know Advanz owns Mercury Pharma and I'm ok with that, but I can't remember if I'm ok on Zentiva, even though I've had it before (I'm rubbish at keeping records) and I'm scared to gamble again. My pharmacist is really nice and works hard to obtain Mercury Pharma. The system is so screwed, our hands are tied. I'm stuck having to gamble with my healthcare again.
My partner has already kindly put up £250 for private blood test plus extra on nutritional supplements. I really didn't want any changes between testing, other than those I had implemented, so that I knew what changes were actually making a difference. I'm scared of brand changes as it can take months to know if they're an issue or not. Now I'm stressing over how it may mess with the consistency/control between private testing.
I know at least I'm extremely lucky enough to have another full blood test to look forward to. I was just hoping that it was going to be a long needed step forward, now I'm fearing a step backwards.
Does anyone have any experience or knowledge of Zentiva? Do I need to just put my big pants on and suck it up? Thank for giving me a private, safe space to vent and for taking the time to read my anxious waffle.
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SarahFrmKent
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Hi Sarah I think many people here will have felt as you do. I have only realised in the last year how my thyroid has effected me and made some progress getting correctly medicated only now to find that my gp cut my levo and now start to feel all the symptoms coming back. What is massively frustrating is the time it takes to get improvements and the battles to be fought getting the right meds. I don't know the answer to your specific question but feel fortunate that there are people here who do.
Can you make a précis of what you've written above and give a copy of that to your GP and Pharmacist.
You could highlight that you are already paying for essential tests from your own family's pocket, and in order to truly evaluate and understand the value of your various strategies (nutritional etc.) you need a level playing field in terms of the exact same thyroid replacement.
I know at least I'm extremely lucky enough to have another full blood test to look forward to. I was just hoping that it was going to be a long needed step forward, now I'm fearing a step backwards.
What a sad medical system wherein a patient feels lucky to get simple and cheap tests for x, y or z! FEAR is number 1 enemy (for everyone) - you write very well so please have confidence and ditch the fear
I don't know why there have been so many issues with these oral solution products.
The fact that they have affected products manufactured by several companies, across several countries, suggests that there might be an issue with one or more of the ingredients - possibly glycerol?
Tracking availability of products has been difficult - and I mean whether they are available at all, not temporary shortages. Particularly as so many are manufactured by one company and supplied by another.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Hi Sarah, so so sorry you are going through this - I too had problems with Mercury Pharma and indeed ended up having to take it up with my local MP and point out to him the dreadful state of supply of thyroid medication and how it is not acceptable for anyone to assume it is OK to change your medication each time they are unable to get supply. The chemists are doing their best but there is an issue with the middle man suppliers who would prefer you to have a product they can just 'take off the shelf'.
I gave up on Mercury Pharma during lockdown as was impossible to get and 'had' to change to Brill Pharma - then that went into 'difficult' supply issue - I even got in touch with Mercury Pharma and Brill at that time and they said there was no problem with their products and they should not be in short supply which is how I found out about the 'middle man issue'[.
I too am affected badly when I change brand - but I have now settled with Zentiva because it is or would appear to be easily supplied - I hope by writing this I don't tempt fate !!!
I have to get my GP or the GP practice chemist to understand the problem and our GP chemist has now understood and the brand name Zentiva is now put on my prescriptions and so far so good.
Because I am lactose intolerant I have an oral solution - sugar free - which makes it easier for me to up the dose or down the dose when I feel my symptoms coming back.
I can understand you feeling anxious about taking the new brand - is there any way you can explain to your GP the problems you have and ask him to prescribe the oral solution - there are instances advised on Nice website I believe where this can happen other than lactose intolerance. It would mean that you could take the dose slowly to see how you feel and find the right dose for you - taking a tablet is the problem in my opinion.
Whilst writing can I advise any forum members who are on liquid oral solution of thyroid hormone - that the medication has to be kept in a cool place under 25 degrees C - the temperatures have been way above that - so I contacted Zentiva and they said it cannot be put in the fridge and that they would not guarantee its 'efficacy' if kept above that temperature - hence why I was feeling rubbish I believe - so I upped my dose another 5 mcg and feel much better.
Hi Sarah. I so can empathise with you on this. Yes there might be perceived bigger problems out there, but for our functionality we need consistency. I went to collect my prescription yesterday and it was part MP and part other brand, so I refused it and got my prescription back. I’m not ashamed to say that I went and sat in my car and cried because I thought here we go again, another battle to fight. After phoning six pharmacies (I’m lucky I live in a city and have a car), I sourced some and drove 45 mins to pick it up. I’ve read so many recent posts regarding lack of MP. I wish there was an app or something that we could click on to find availability! I hope this new to you brand hits the spot ❤️
Thank you all so much for your replies of support. I stumbled across my current pharmacist when previously ringing from town to town trying to get any liquid levo other than Teva. I've been here several times, sometimes the manufacturer helps, sometimes it's many a call centre that just doesn't get our systems. This pharmacy was the only one willing to send it back if it arrived incorrectly and he normally works hard to obtain MP for me.
The system is such a sorry state where we are all being pushed into private healthcare as our basics are being removed and they don't even follow their own formulary advice, or even know about their own NHS guidelines.
I have been trying to build up to writing to my GP and practice manage for what good it will do. So far they have tried to remove me from their books and threatened to remove my liquid and put me back on tablets if I'm still unwell, no thought into actually treating the condition correctly. I manage to mostly avoid my gp, dealing with the in-house pharmacy consultant when needed. I've spent years playing the system banging my head against the wall. I just really don't believe it's worth the stress and it's a waste of time and precious energy anymore. I feel it would take me a week and a lot of trauma to write something factual, without emotion, evidence based and professional, so they wouldn't try to bully me again or use a misdiagnosis or emotional dysregulation (undiagnosed TSH of 88 and years of begging to be well) against me. Where would I start to unpick the disaster that it's been and currently is?
This recent investment is my last push to try and balance myself within their parameters. I believe that my nutritional levels have struggles maintaining and I'm often left deficient with my Thyroid taking the blame. I then try to balance it with levo dose adjustments which of course only works for a while. This is all because testing in my area has become less and less, so I'm working blind from overlapping symptoms. Now "the lab" won't even follow up with T4 even when TSH is out of range, and forget about Vit D even if you've previously had issues going from insufficient to toxic in a matter of weeks. I'm hoping a small dose tweek, addressing my nutritional balance and correcting my diet again will mean I don't have to deal with my dumbass gp, just please universe, please stop messing with my meds and let this Zentiva work as well as Mercury Pharma 🙏
Thank you all for the support and allowing me to vent, it's a therapy that shouldn't be needed, but I'm glad it's here 🫶
Hi Sarah. I have been on Zentiva liquid thyroxine for nearly a year, having been on Teva (didn’t suit me) and Brill Pharma. Just to say I have had no problems with it and feel so much better than when on pills. Also it seems it is usually available. I also take Vitamin D, selenium, zinc, vitamin B complex, fish oil, turmeric, collagen, vitamin c, magnesium and calcium (because lactose intolerant). I know it sound a lot of supplements but I feel so much better than I have for years. I am gluten and lactose free and have a healthy diet. Everyone is different so there is a certain amount of trial and error so good luck and hope it helps for you.
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