Metavive II

[Alfiedog1204]

After having my prescription withdrawn, I'm looking for alternatives. I have graves and had a thyroidectomy 14 yrs ago. I have been on Ndt for 10 yrs and been really well and healthy. I am currently ordering myself but I am wondering if anyone without a thyroid has had success with metavine only?

[pennyannie]

Hello Alfiethedog :

I am truly sorry you have been messed around like this -

I'm with Graves post RAI thyroid ablation in 2005 and self medicating with NDT now some 5 years on as I was refused both T3 and NDT by my surgery and hospital.

I've never tried Metavive and why should you - you had a medical intervention that resulted in your thyroid being removed and deserve the necessary treatment option that has restored your health and well being and enabled you to continue on with your life for these past 10 years or so

Getting angry - better go and walk round the kitchen.

[Hennerton]

I don’t understand. Do you mean your GP practice suddenly decided not to give you a prescription that you have had for many years? How did they justify that and what are they suggesting instead, as you have no thyroid? You must have medication or put simply, you will die. How was that allowed to happen? Did they write to you in advance of stopping it? Did they mention Levothyroxine? Surely they did. It is all they will offer automatically. Have you ever tried it? You could ask for T3 to be added to it and once you have sorted out the correct dose, this might be a solution for you. Nevertheless, it is not a quick fix and getting the dose right takes time.

I am sorry I have no other ideas than having a big gun lawyer start a legal case but I am sure you will not wish that. In my dreams I would love to do it.

Do tell us more please, as we cannot help with the little information given.

[Alfiedog1204 in reply to Hennerton]

Thanks for your reply. Initially after my thyroidectomy I was on levo for about 4 yrs getting progressively iller. I went onto t3/t4 combo for about another year with a slight improvement. Eventually my gp agreed to prescribe me armour and then I switched to nature throid with his agreement. Once nature throid was recalled I could no longer get my prescription so I asked to go back to Armour. My gp told me he couldn't authorise that and that I would need an endo appointment which I attended today. (I might add I have been left without any prescription since nature throid was withdrawn!!!) The endo today agreed with me that levo wasn't an option because it made me so I'll, he also advised me that our local trust has withdrawn any prescriptions for ndt and t3 so he was unable to help me. I'm stunned tbh, I have no thyroid and no prescription. I am currently buying ndt from America as I don't feel well on thyroid s but it is becoming prohibitively expensive so I was looking for alternatives. Any advice is greatly appreciated xx

[Hennerton]

I am so angry for you. What about getting a newspaper involved? They love stories that shame the NHS. There was someone a few years ago fighting the T3 scandal called Billy Kember, (I think that is the spelling). He might be interested if he is still in the business of journalism. One of the members here knew him and I also communicated with him and sent him copies of letters that were relevant to his fight. Worth a try if you can track him down.

[Hennerton]

I just checked and the spelling is Kenber. There is plenty on him if you Google his name and he states that he is interested in cases to investigate etc.

[Alfiedog1204]

Thanks for that, I shall track him down....I'm all for going to the papers if needs be. It is disgusting how we are treated x

[arTistapple]

We get used to hearing tales of woe on this forum. We should not get used to them! However this story takes it to a whole new level. I think I would start very clearly by looking at your necessary ‘actions’ to get this sorted. Get on to to Kenber. Get your endo comments in writing. Go and sit in the department until you get them. Then do the same with your GPs - written replies only. It’s your understanding that if you don’t get a prescription you will end up very ill indeed. These CCGs or ICBs need a letter to the Chairman marked URGENT. You must seriously think about legal action. I am almost certain there are solicitors out there who will do “No Win No Fee”. You should start straightaway. Inform someone you trust close to you what your actions and intentions are. Hopefully once you start this process they will see how determined you are to sort it out. Do not forget your MP. A Labour MP at the moment probably would like to hear about this. It’s your decision whether to explain yourself to the doctors. I would just emphasise the danger to your health to them by this carry on. They should have the intelligence to work out the implications themselves.

[pennyannie]

Hey there again ;

Your doctor should be able to write you a ' named person only ' NHS prescription :

unless this rule / arrangement has disappeared without consultation ?

What this means is your doctor needs to present his case for your need for this life saving medication to your local CCG/ICB management team for funding as this is all about money and T4 is the cheapest treatment option .

But since he has witnessed how ill you became on the synthetic T3 and T4 treatment options he already has the proof of medical need and your request not being ' just a whim ' !!

He can also write you a private prescription and there are pharmacies listed on the Thyroid UK websites - thyroiduk.org who can fill it for you - though read you need ' shop around ' for the best price.

Armour/Efra are the 2 brands of NDT available through the NHs - and still prescribed.

If you go into openprescribing.net and then into analyse you can see by surgery and area where the prescriptions are still being written.

It didn't help me with my request as I as told in my area it was only prescribed to the elderly in care homes or where someone had relocated and it was thought not in the patients best interest to switch them since they were settled of NDT and had been on it for years.

It maybe all hog wash but I was too ill to fight my corner any longer and just gave in and purchased my own NDT which of course suits the NHS purse - 40 + years on a full stamp contribution and o access to medication though the NHS treatment and the assurance that I would be better ?

[Lynneypin]

searching thru posts I found yours and wondered how you are now ?