I am totally stunned.
A little about my story: I had to change my GP last year as I didn't feel he was supportive (although he did order lots of tests) of the problems I was having and he intimated that I needed counselling, and even referred to Munchausen's Syndrome in one conversation (!) When I saw the Endo registrar he totally dismissed the idea of T3 or Armour, and pretty much put me back to square one. When I changed GP I went to the local University practice (Reading Uni) as the head doctor there is also head of teh PCT trust (or whatever the Tories have done there). By PURE CHANCE I started talking to a nurse who did my blood test, and she told me that a particular doctor there specialised in thyroid, so I went to see him next. He was very sympathetic, and when I asked about NDT, he said he couldn't prescribe it as he didn't know about it, but he knew another of his patients was under the Head Endo at Reading Royal Berks Hospital (our local), and that he had agreed to put someone on a T3 trial, and if that failed, Armour. He referred me and wrote a letter explaining I was to see that particular Endo, I had to rearrange a few times, but saw him today, all prepared to argue my case as I've been doing with every GP etc.
He took me into his room, asked me what dose of levo I was on, and I explianed that my blood results were now balanced but I still had various symptoms and I didnt think T4 alone was working, and that I'd heard that NDT could work better for some, and I said something like 'every other country in the West has it'. He said 'Well I'm happy to prescribe it, I do about 3 or 4 of these prescriptions a month, but.....'
I can't really tell you exactly what he said next (something about over-replacement and hearts and bones blah blah) as I was so stunned that I'd only been there 2 minutes and hadn't even had to argue or explain or anything!!! In fact I was so shocked I immediately backtracked and said 'I'm happy to do a T3 trial first'. He didn't even really acknowledge that. I asked him some more questions about diet and stuff and within ten minutes I was walking away with an interim script for levo and him writing to the hospital pharmacist to buy me some pig glands!! They think I should have it within a couple of weeks!
I actually nearly cried as I walked out, as the last couple of years have been so difficult at times. I really hope Armour works for me, I know it isn't a magic bullet, but so many people seem happier on it. I feel very very lucky.
Anyway- onto the questions part of the post!
1) Is there a list on here anywhere of endo's and GP's who are sympathetic to NDT and T3? If so, I'd like to add my GP and the endo, as they would be very good for anyone in Berkshire I think. I would say the Endo was rather dismissive of some of my symptoms and he didnt really discuss pros and cons, or success rates etc, but to be fair I didn't push him to either.
2) The doctor said that I can drop levo one day and start on the full dose of Armour the next. This does worry me a little- he says he has an equivalency table, so he will look up my 150mcg levo and work out the equivalent NDT. (I'm assuming it's Armour but it may not be I guess). Is this usual? Would I be better to build up over a month or something? He hasn't asked me to come back for a blood test. He said to have one at the GP 6 weeks after starting.
3) what have other people's experiences been of taking it? Do I need to watch out for any symptoms or downsides?
4) What's the best way to take it? I take levo in the morning an hour before food and the endo advised me to carry on with that. I said I'd heard that some people spread their dose and he said I could split it in two if I wanted?
Any/all advice gratefully received, and also- thank you so much to everyone involved in this forum for showing me there was an alternative, and then giving me the information to pursue it. If anyone wants the details of my GP/endo please feel free to message me.
So happy!