As you can guess from the title, my biggest fear has been realised- my old consultant retired recently, and I met the new consultant the other day. She was very sympathetic about how thyroid can have lots of symptoms and that consultants shouldn't go on blood results alone, but then proceeded to tell me that she has no experience of NDT (I'm on Armour), and therefore cannot recommend it as a treatment. She said she's aware there's a few of us in Berks on Armour due to the old consultant, and that her team are trying to work out a plan. She's asked me to have bloods done, and said that if they are ok she will keep me on the same dose, but if I've tipped into hyper, she will half the dose! I'm not quite sure why someone who feels they know so little about it that they can't prescribe it feels ok to half the dose, but there we go! I told her I am refusing to go back onto Levo, and described the difference Armour has made to my life. She said she didn't disbelieve me, but repeated the above. i asked if she could confer with someone in the NHS who did know how to prescribe it and she said no, she had trained in oxford and they didn't recommend it (same old story about no studies etc). I challenged that and said there were studies available outside the UK, and she also said it wasn't standardised, I said that was nonsense and it's been standardised for years, it just wasn't when the NHS started peddling Levo. I find it very worrying that she doesn't even have the facts about a key drug in the area in which she is supposedly a specialist. I asked what would happen if I needed and increase, and she had no answer except that she couldn't confidently increase my dose, and that she could keep my dose the same.
Anyway, I am now on a knife edge, wondering whether my dose will be halved/taken away. This is making me so stressed. My son was diagnosed with diabetes this year (T1) and that is just constant worry, constant medical appointments, and pressure. I seriously do not need this on top. I've posted before I think about the two years of stress I have had with regards to getting repeat prescriptions from the old consultant, which took anything up to a month and involved constant phone calls from me and my doctor, and more trips to the hospital. Neither he nor the new consultant seem to think any follow ups are necessary though. I'm exhausted with it all. I'm beyond exhausted in fact and its starting to affect my work and my mental health. I do not feel my health should be blown about on the winds of the NHS. I any of you saw the money and resources that go into diabetes management which affects a similar proportion of the population, you'd be horrified. They get exemplary care and so many choices. Why don't we?
I think I need to take some form of action now. My health should be the primary goal of the consultant, this drug has changed my life, whether she likes it or not, and if she has other patients on it, she should be educating herself or consulting so that she does have the knowledge to prescribe it and adjust it. We aren't talking about some dodgy backstreet voodoo method, it's prescribed commonly throughout the Western World, including through the FDA in America, who must be the strictest drug testing body going.
I need advice from you lovely people. I am trying to keep all options open currently so I need to find out about
a) any other GPs in Berkshire or neighbouring counties that will prescribe
b) A copy of the patient's charter (I can't even find this online)
c) Any private doctors that will prescribe (worst case)
d) Any information I can use to back up a complaint, eg studies, tables of conversion etc etc (I know such tables exist as my old consultant had one)
e) Any legal precedent for getting an assured supply
f) opinions on who my first port of call should be? PALS? Primary Care Trust? GP? Consultant? My local MP? All of the above?
anything else useful
I have started doing some digging around myself, but in between full time work and my son and his condition, I have so little time, and I'm sure some of you have this information at your fingertips anyway.
I also wondered, has anyone taken legal action against the NHS before, and if not do we know why not? It seems to me that we all play nice and beg our GPs and travel out of area, endure the postcode lottery and the ignorance, but that apart from petitions (which seem to fall on deaf ears) we don't actually FIGHT (probably because we're all so bl**dy ill!). I am wondering if a group of us banded together for legal advice if there would be some way to force the hand of the NHS, since they don't want to listen to reasonable requests. Would EU law be helpful? It's something I want to look into, but not sure where to start.
Anyway, if you've read this far, thank you very much, and I'd love to hear from you about any of this below.
Good luck everyone x