T3 stopped due to cost: where to buy privately? and why is NHS being charged so high a price? does this need investigating?

[Dee1]

Like joesmum in her recent post, I've just heard that it's likely that my T3 is going to be stopped due to cost.

Can anyone advise on how to buy it? I am sure I will be able to get a prescription from my GP. Heloise mentioned it should only cost about 10 dollars a month. Is it possible to get it for that price?

Also, why is the NHS is paying so highly for it? I remember reading something years ago about how the NHS was paying something crazy like £20 for a loaf of gluten-free bread. I just looked it up and it was found this from a few years ago:

Newsnight contacted one of the leading manufacturers of gluten-free food, Juvela. They blamed wholesalers for adding "extra charges, sometimes adding a £20 handling charge to a £3 loaf".

'

This is questioned by the British Association of Pharmaceutical Wholesalers, which represents some of the biggest companies.

They told us they would be "keen to investigate any relevant cases of alleged poor standards or distribution practice."

If the NHS can end up paying £23 for a loaf of bread, then it would be interesting to know more about this T3 pricing and whether there is something wrong in their system. It might help our argument for being prescribed T3.

Any thoughts?

[waveylines]

Argghh the posting has disappeared....

So sorry to hear they are going to stop your T3 prescription. Have they suggested an alternative? I notice that you struggled with NDT -well Armour- so am not sure what they are going to suggest. They do need to be careful that their actions don't compromise your health. I would contact Paul Robinson on face book and see what others are doing. Link below.

facebook.com/recoveringwitht3/

An

[Dee1 in reply to waveylines]

Thank you. That is a good idea. Their actions will definitely compromise my health. I don't really function without T3.

[shaws]

That's a very scary proposition if you've been given back your health with T3. It is an astronomical price they charge and there have been many posts on this forum about it. It would appear that they can charge whatever they like but, if your GP is willing, he can prescribe on a 'named patient basis' for the other T3's available by their brand names. Some GPs don't want to do this as they then are responsible if the patient may have some reaction.

It is a horrifying thing for your thyroid hormones to be stopped.

thyroiduk.org.uk/tuk/treatm...

If you look down this list you will come to non-uk liothyronine link.

thyroiduk.org.uk/tuk/treatm...

[Dee1 in reply to shaws]

Thanks, that is v helpful.

[Hidden in reply to shaws]

I'm in exactly the same situation so it's nice to see these links! thanks shaws!

[kjc1tisdell in reply to shaws]

I wonder if its a case of where you live, both my gp and endo prescribe me t3. Unfortunately for me the t3 they give me makes me very ill.. read ingredient..acacia powder..industrial methylated spirit. And so under active.

[shaws in reply to kjc1tisdell]

If it is UK T3 you use ask if they could prescribe Cytomel on a 'named patient basis'. I was fine on UK T3 for a year then had symptoms - once I switched I've had no problems since.

If you look at the two links above you will see info re T3/named-patient. Much cheaper than UK T3. The ingredients are also stated.

[Hidden in reply to shaws]

This is very helpful again and I'm reading these too so thanks!

Can I ask, shaws, do you currently have Cytomel prescribed on a named patient basis by your endo or GP?

[shaws in reply to Hidden]

No - even when UK T3 was withdrawn for a while they wouldn't give me a named-patient T3. They also at times have run out of T3 completely.

Luckily I keep a stock of my own I buy when abroad.

[Hidden in reply to shaws]

OK thanks!

[shaws]

I doubt the NHS really queried about the rises.

Maybe it is the Endocrinology putting their feet down not to have T3 prescribed?

Apparently, as far as I understand, T3 used to have a Brand name then Mercury Pharma/Amdipharm decided to withdraw the Brand and provide a generic so there appears to be no cost control with generics which are usually cheaper than a Brand. Confusing?.........certainly.

[Dee1]

It is the decision of the Clinical Commissioning Group (which I still think of as the Primary Care Trust) in my region. And as they have spoken personally to my dr I doubt they will let her prescribe on a named patient basis either. She was due to have a meeting with them about it, but someone else has told me that our CCG does not permit T3 prescription so that does not bode well. I was prescribed T3 by my endo in the region I have moved from so I am being referred back to him in the hope that I can get it through him. But I am unsure how that would work.

[Musicmonkey]

Can I suggest that everyone affected by this issue contact their local Healthwatch organisation to report it. If Healthwatch receives sufficient complaints about a particular issue it can be pursued with the CCG.

In their leaflet, my local Healthwatch says, "For some big issues, we publish reports with findings and recommendations. This helps health and care service managers to understand what works best from the public's point of view."

Here is the link to Healthwatch's mission and aims:

healthwatch.co.uk/our-value...

[rosetrees]

I've said before. The NHS is the only large procurer that I know of that drives prices up in the procurement process. T3 is available over the counter in many European countries for a few Euros a packet. I personally think that some investigative journalism needs to be done into whoever is in charge of NHS procurement. Large supermarkets are usually accused of paying their suppliers too little. I live in hope of the NHS being accused of doing likewise to the drug companies.

[helvella in reply to rosetrees]

Not come across the Ministry of Defence?

[waveylines]

Am so sorry to hear that instead of the NHS dealing with the ridiculous price hikes on this vital medication they are putting pressure on GPs to stop prescribing it!!

I know this is not the same but I was once told I could no longer have NDT. I wrote to the practise manager asking my letter to be placed on my medical record asking for an explanation, stating the harm to my health that stopping such a medication would do. Pointing out my history of the effect when using standard treatment. I included the other medications I needed on top to counter the side effects not resolved by standard treatment (e.g. Blood pressure tablets, water retention tablets, pain killers, skin emollient etc...) which would be an added cost on top of the standard treatment.

Like many users of NDT many users of T3 have already been through the standard treatment option before arriving at T3 so there is evidence on their medical file that the standard treatment was not effective. After receiving my letter the matter was quickly resolved.

Whether this approach would work if including your local CCG I don't know but it's important not to accept this quietly. GP practises do not have time to look at the wider picture and look at the cost of saving one medication without considering the ramifications of what it will then cost as they try to battle with inferior medication and the multiple additional symptoms and signs that then appear as your health deteriorates requiring increasing medical intervention. A letter like that gives them ammunition to fight such ridiculous decisions at the same time puts on record a warning shot of potential harm to your health that they will be causing by withdrawing effective medication.