I heard today that the NHS will fund my T3. I am amazed! The pharmacist who called me after speaking to my new GP said she didn’t think they could supply Thybon. I said I was worried about changing my brand and that I definitely didn’t want TEVA as unable to take their levothyroxine. She is going to look into it and get back to me.
Has anyone switched from Thybon to a NHS supplied brand with any problems?
Also I’m a bit nervous about the NHS taking over my care from my private endocrinologist and not understanding my blood test results. Should I still have a once a year consultation with my endo just to make sure the NHS don’t suddenly stop my medication and want me on levothyroxine only. I have read some horror stories where this has happened.
Thank you.
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Carna
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You might care to look at my medicines document which has all UK products, etc.
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.
The problem with Teva Levo is the Mannitol it contains is the likely culprit that causes the adverse reactions. I believe that Teva T3 doesn't contain Mannitol .
Capsules have the singular advantage that they don't need many ingredients.
Something to increase the volume (dealing with microgram quantities without having first dispersed in another substance is very challenging). And something to help the powder flow so that the capsules can be filled. Hence the excipients of the capsule contents are:
Maize Starch
Magnesium Stearate (E 572)
The capsule ingredients are listed separately and the Patient Information Leaflet expressly states the contents can be dispersed/dissolved in water. That allows patients to avoid the capsule ingredients, if they wish.
Another advantage is that if your doctor specifies "capsule" you automatically get the one available product! No switching to other makes. (Until another company comes along with another capsule product.)
Carna, I couldn't tolerate the acacia powder in Teva levo. Although I am lactose free I can tolerate small amounts of lactose.
When I received the news that I no longer had to buy my liothyronine from Germany (Thybon) I also was concerned about what I could take. Fortunately, the pharmacist at the time, at the local Boots knew me. We spent some time checking the ingredients labels of the Liothyronine she had in stock. She had Sigma Pharma in stock, 5mcgm tablets and thats what we decided on!!
I was absolutely fine with SP and still take it (15mcgm daily) with my 100mcgm Almus levo.
The Boots did have issues with supply (at the time it came from US) now it is made in UK and so my meds are supplied by post every 2 months from Springfield Pharmacy.
I know I have been very lucky to get what I wanted. There is at least more choice now and @helvella has a very useful document to refer to regarding tablet ingredients. Hope all goes well for you.
If you have a good endocrinologist I’d definitely continue to see them. I’ve told my GP that if she wants me to be reviewed I’ll pay to be seen by my T3 ‘friendly’ endo.
I was prescribed Thybon Henning 20mcg by my private only endocrinologist. When I finally got the ok to be prescribed liothyronine T3 by the NHS I was cautious. I still have an annual consultation with my private only endocrinologist just in case anything changes with the NHS. I’ve done this now for 3 years and find the 10min consultation over the phone well worth it for peace of mind.
I’m prescribed Morningside Healthcare by the NHS 5mcg size. I take 5mcg twice a day 8hrs apart. On waking then about 3pm. I’ve found that Morningside don’t seem as potent as Thybon. Initially it spikes and I feel it but when I got my bloods done my TSH was a little higher than on Thybon and my T3 a little lower. I much prefer Thybon and continue to order it as a back up or to switch to it if the NHS wants to change brands again.
Hi, congratulations on getting T3 on the NHS. It`s such a battle.I get Thybon Henning T3 on a NHS prescription. Tesco do a special order for me, so it can be done!
I had problems with various fillers in other brands. My GP agreed that I could have American Perigo instead. When there were supply issues with that, I switched to Thybon. I have been so much better since.
If your GP is helpful he can prescribe Thybon on a named patient basis. It takes a few weeks to set up. Tesco order it in for me. Since Brexit there has been a few delays so I make sure I have a month s supply in hand.
Hi there where are you based, and how did you manage to convince your GP to prescribe Thybon for you? I have been buying it, and GP won't prescribe, although, it's the pharmacist at the practice I spoke with and she said that Liothyronine sodium, ROMA is exactly the same... well, it can't be can it? how do you set up the named basis thing? THank you in advance for your help
Just heard today NHS can’t source Thybon so I am going to have to try something else. They have agreed to blood test after a month to see how I am doing. I am keeping my private endo overseeing my treatment.
Thybon can be sourced by NHS via a named patient request. I am getting it fairly regularly. There are problems occasionally but I have always got it before I ve run out by keeping a month in hand. You are being lies to if you re told NHS can't source it. You do need to find a pharmacy that is willing to source it for you. Some won't get it for you. My local Tesco pharmacy gets it in for me.Not sure what else you can try. Thybon is cheapest as far as I know.
I only convinced my GP to prescribe a non UK lio after months of problems with UK brands. I believe I could not tolerate the mixers used here. I don't know what ROMA is so can't comment on that but Thybon is a different formula to most or possibly all lios. I was very concerned about that. As it turned out, I had no problem at all when I made the change.The named patient thing has to be set up by your GP - he has to request it. You must show him that you can't tolerate UK options. Then he can prescribe an alternative. The pharmacy will request a signed letter from your GP stating that a UK alternative is not suitable for you.
Thybon Henning is much cheaper to buy than UK varieties but fees are added by suppliers.
I am in Scotland. I was prescribed Morningside. I was taking thybon henning privately. I found this to be more effective than Morningside. The same doses with the two different drugs gave me vastly different results with thybon being much better. I'm lucky to be prescribed it so I'm not complaining.
No. I have thought about doing that but not really sure how to go about it. Looking back I think thybon helped my palpitations more than Morningside . I was considering asking endo to prescribe thybon but they don't like me as it is. But nothing to loose I suppose.
Yes, I live in the midlands of England. I think the main problem I had was that the strength varied a lot from month to month with UK brands. It doesn't seem to be a problem for most people. Unfortunately I am really sensitive to everything. I don't know anything about the Scottish NHS other than the big difference - free prescriptions north of the border! I am very happy with Thybon. I was initially on American Perigo - they have tighter rules on strengths to us.
I can get a private prescription from my private endo for Thybon. I then buy it myself from a private pharmacy. I'm in a bit of a quandary about what to do. My NHS GP wants my private endo to oversee my blood results and advice so I have to pay for that perhaps once or twice a year and then I can have T3 on NHS prescription - but not Thybon.
I have fought to get T3 on NHS but if I can't get what I want then perhaps I'd be better off just continuing to buy it rather than having months of feeling unwell. I think I will say to me GP I'll try another brand and if it doesn't work for me I'll go back onto Thybon and just buy it myself privately. You never know I might feel better on another brand!
I think my endo originally prescribed thybon but the pharmacist didn't want me splitting tablets!! I have had a look about to see if it's available in 5mcg but I don't think it does. I don't have my actual prescription yet as they still come from the hospital. Your gp sounds great! Mine was very rude to my private endo who promptly put her in her place with her reply and copied me in!! 😄.You might be ok on another brand. There's no one size fits all with thyroid stuff!!
My gp was willing to prescribe T3 of my choice following loads of problems for me with uk brands. However, he left it entirely to me to arrange. I had to visit several pharmacies before I found one ( Tesco ) that would even try to order a non uk brand. My local pharmacy, which I'd been with for many years was very unhelpful. I returned a batch of tablets because of many side affects and asked them to replace them with a different batch number or a different brand. Their response was that they could offer me a new pack of the same product including the same batch number if I got a new prescription!
I did visit half a dozen pharmacies before I tried Tesco - because of distance and convenience. All told me that I had to have what came in!! They all refused to deal with "named patient" prescriptions. To be fair, it has been a hassle. Then Perigo became unavailable - I was told it had been discontinued when I contacted the manufacturer even though this was not the case! I then had to start again with Thybon. Just when I thought everything was sorted, the pharmacy was audited!! The auditor told Tesco they were no longer allowed to supply Thybon to me. I had to start again!! My gp was very angry about that as Tesco needed yet another signed letter from him before they could continue to issue Thybon to me.
I wonder if it would work if you visited pharmacies and begged them to do a named patient prescription as I did. Then go to your doctor and ask him to do what's necessary for you to get it. He can't refuse if there is a medical need. I did not telephone pharmacies as it made it too easy for them to refuse!! I think it's more difficult to refuse someone standing in front of them who is desperate. Whilst there are obviously differences in policy between England, Scotland and Wales it is still the NHS . The NHS does allow for named patient prescriptions for obvious reasons.
How odd. I’m on 25mcg Thybon with an approved 5mcg to 30mcg whenever I feel I need it. I have to cut my 20mcg tablets in quarters or in half. Never had a problem.
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