T3 - help needed x

[ChelleBelleX]

I've been on T3 for over a year now, from my endo after TT in Aug 2013. I was in a bad way on just Levo and he recommended I try T3. It's worked wonderfully for me, and I feel like me again.

Today I went for 3 monthly check up, and as I thought, he tells me local CCG are removing it from the books. I will no longer be able to get T3 prescribed by endo/GP in the area. He is equally upset about this as I am, but said unless the company lower the price, NHS can refuse to prescribe it. He did say T3 isn't the only drug they have increased, some are lifesaving drugs and have been increased by over 10 times. It's a disgrace.

I'm hoping, whilst I try and fight against this in my area, that someone could advise me where I can get a supply online? If someone could message me or a reputable place, or any details that would be great and very much appreciated xx

[Clutter]

ChelleBelleX,

Does your endo or GP practice issue repeat prescriptions for T3?

[ChelleBelleX in reply to Clutter]

I originally got from a Endo over year back, who wrote to GP in order to take over prescribing it. I have been on repeat prescription ever since.

I see endo every 3 months for check up. He told me bad news today.

I spoke to Pharmacy (it's a small independent one) and I'm the only one on T3 with them. The Boots pharmacy opposite don't have anyone on it

[Clutter in reply to ChelleBelleX]

ChelleBelleX,

Your GP practice should contact you before the prescription is discontinued. Ask for the reasons in writing. Appeal the decision in writing to the CCG. Copy your MP in on the correspondence. Patients are not supposed to be penalised and have drugs withdrawn because costs have risen.

[shaws in reply to ChelleBelleX]

That's only (not prescribing) because doctors have been told not to prescribe and that it is dangerous or some such nonsense. Maybe you also have a gene defect which means you might not be able to take levo whatsoever.

thyroiduk.org.uk/tuk/testin...

[shaws]

I am sorry about your distressing news and the problem is the NHS doesn't seem to worry as the 'Powers that be' say levo is the one and only. For most of us it isn't.

Doctors can prescribe alternative to the NHS (cheaper products and better probably) but they don't want the responsibility. Maybe your Endo (but might not want to jeopordise his livelihood) and I'll link the different T3s which can be on a 'named patient' basis. Bearing in mind that though not licenced in the UK, they have been in other countries without problems.

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

This is an extract:

Dr. Lowe: The physician should call a pharmacy and request the leaflet given to patients when they pick up a Cytomel (T3) prescription. The physician would learn, as the patient leaflet on Cytomel explains, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." Other than Nystatin, he probably will find that no other drug he might prescribe is as free from adverse effects as T3.

web.archive.org/web/2010103...

[ChelleBelleX]

Thank you all for your responses. I will read more later, right now I have a migraine from the stress it's causing already.

I won't be giving up without a fight. I believe in this drug, not just for myself but for others. Why should we sacrifice our health, our lives because of some greedy people out there who don't care.

I will write to as many people as I can, and keep campaigning for EVERYONE. As Endo said to me, it only takes one person to make a change.

[ChelleBelleX]

Can I ask, is there a difference between T3 from NHS (Mercury Pharma) to Tiromel, or Cytomel? I get on well with the Mercury Pharma T3, so looking for a similar replacement

[Hidden]

I was on Mercury pharma until my GP canceled my prescription. Since then I am getting Uni Pharma on my own, by my opinion it's better than Mercury and a bit stronger.