Should we have to pay for a medicine that the NHS currently prescribe for free, due to it being a potentially fatal condition?

[UrsaP]

I take 50mcg a day - was on 60 but change of Dr -review - reduced it. I'm struggling. Have had stress related adrenal issues so currently trying to get back on track. But I know at 60 I was at best I have ever been - had a life!

My chemist tells me it is nearly £300 a month for mine - tells me all too often! Like I'm to blame for this? Getting fed up of being made to feel guilty and a burden for something that is not of my doing, and if I had had the right treatment 35 years ago -maybe I might not need to be on t3 now!

The big question there is why is it only here in UK that these massive prices apply? In another post on this thread I have outlined my thinking and to me it a plan by 'whoever' to get rid, once and for all of t3 from prescription meds. As I effectively (I hope) said in other post - why would someone buy out the drug and then price it out of the market? Are they aiming to bankrupt themselves - makes no sense.

I would object to paying for this medication on several grounds -

I have a condition deemed serious enough to be listed on the Free Prescription Exemption list. Because it is potentially fatal.

I am not working. 35+ years of Ignorance and mistreatment of my condition left me unable to remain in a job that I struggled, with symptoms, but trained hard to qualify for.

I am lucky in that I have a husband who is earning and supporting me. He has serious health issues too -again much due to misdiagnosis and mistreatments, again for a great many years. He is struggling on. But for how much longer we don't know. Others are not in a position to pay. They must be considered too or only the rich will survive..and where does that end!

I am already, and have been for some years, been paying out quite a sum on a regular basis for supplements - such as adrenal/thyroid, and various recommended vitamins and minerals.

My son is now struggling and getting the exact same responses that I, and his dad, have been getting all our lives, in my case, despite proving for a fact that I do have this condition and that t3, only, is what works best for me. It is generally the only thing I do get on prescription. We are now paying out for supplements to try to help our son too.

I am aware that, financially, as a family we are in a better position than some, but our finances are not a bottomless pit by any standard and far too many people are not in a position to be able to pay for this 'life saving' medicine.

You are right, the powers that be should be sorting out big pharma. Why are they not doing so? I refer to my earlier theory/ideas.

[Clutter]

UPower,

The rationale being used is that there is no evidence that Liothyronine is beneficial and it is therefore a low value drug and Levothyroxine is a cheaper and effective alternative. This has only become an issue since Concordia have raised the price of T3 to extortionate levels.

Levothyroxine only made me extremely ill so I shan't be giving up T3 if my prescription is withdrawn. I won't be paying hundreds of pounds for the T3 I need in addition to Levothyroxine. I will have friends and family bring me Tiromel from Turkey at a cost of €2-€3 per 100 x 25mcg tablets or will buy it online for circa £20 per packet.

[Sarahpk]

I am very much in the same boat. Just found out about T3 and realise I have needed this for at least the past ten years. I am a highly qualified an experienced Counsellor and been unable to work! Twice symptoms got so bad had to give up my job but didn't realise what was at root! Husband just made redundant and this month has been nearly 700 pounds on private Endo to get T3 prescription and all the supplements try and get back on my feet! I don't have a thyroid because of cancer and made to feel like a black market drug smuggler AND it seems that there is nothing we can do but pay for the privilege! My GP refuses to prescribe.

[UrsaP in reply to Sarahpk]

You poor thing!

I gave up my teaching because of the effects of being toxic with t4!

Like I say - I believe that the delays in diagnosing - waiting for positive bloods from useless tests, is a lot to blame for the amount of irreparable damage done.

It sounds like enough of us are proven 'reasonably' intelligent enough people to be able to rationalise our condition, the symptoms we encounter etc - so why are Dr still avoiding listening and treating us like we do not know what we are talking about. Since when did health care become a dictatorship. I think it is downright immoral and neglectful for Dr to refuse to prescribe. I'm sure they are suppose to have some responsibility for 'duty of care'! We must have some comeback somewhere to this!?

How come so little is done about 'hormones' when they have such a massive effect on our systems! I'd bet they would eradicate a lot of other problems by sorting hormone problems, before they cause damage by depriving organs of vital hormones.

When they have managed to stop t3 - what will they go after to remove next...what other minority group will be targeted!

I wish you all the best. And luck!

[UrsaP]

I have been onto the, is it CMG/Or CMA - whoever - brain fog! - filled in the form, and sent a follow up email. I've also emailed my MP and signed every petition I can find. What more can we do? My hubby says if we, all on here, 53000+ of us, all contributed £20 could we get a solicitor to fight our case -would that be enough to pay for one? What a great idea, if only! I think this is the thin edge of the wedge, we are being targeted now, who will be next!

[Glynisrose]

NEVER let your GP or any other doctor lower your meds based on blood tests in isolation. The NHS forbids it. If you fell you need more then take more but do it yourself do not allow any doctor to dictate your health to you .

[UrsaP in reply to Glynisrose]

Thank you Glynisrose... I gave in to a small reduction on the t3 last year, on the grounds that I had lost quite a bit of weight, due largely to the fact that the meds were better balanced, allowing me to lose for the first time in my 55 years! ...and easily!

The question is how do we really stop them - so many have already pulled the plug on t3 for so many hypothyroid patients... How can that be stopped?