I have an appoint this Thursday to discuss the results of my blood tests, so I'm not entirely sure how it's going to go yet or if my doctor will prescribe me NDT (I'm going to ask for it anyway if he offers Levo). I know some folk get on fine with Levothyroxine, but I'd rather start as I mean to go on, or at least trial it. I don't see how T4 only is going to help me, when my T4 is normal but my T3 is low, which is why desiccated thyroid containing both seems like an obvious solution to me.
Could somebody point me in the direction of where I can buy NDT online? Possibly Nature-Throid or Westhroid) I understand it cannot be bought in the UK, so would have to purchase elsewhere which is fine. If my doctor does refuse to prescribe it for me, I may well suggest to him that I can buy it myself if he's prepared to support and guide me whilst on it. Worth a shot anyway! But it might help if I can tell him where I will be buying it from, if it comes to it.
I realise you may not be able to tell me on here so would appreciate it if you could PM me. I'd be very grateful!! x
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I for one would never disclose my source to you if you are going to disclose it to the nhs. There have already been issues with suppliers having to close down site and move elsewhere after picking up problems from people posing as bona fide customers.
Your GP will not care, trust me. The nhs is just happy that it's less work for them. They still get the funding points for you - they do not have to treat you to get the extra funding for you being hypo
Oh ok, I never thought of it like that. I just thought that they'd want to know if I were to ask for their backing - I just thought if I didn't tell them where I was getting it, then they might think it was something dodgy!? They'd be happy if I just took the meds in with me then, without any documents? I certainly don't want to close down any suppliers, so I'll just tell them I'm happy to purchase myself if they don't want to give me a prescription for it. As for GP not caring, I suppose I was just hoping he would but you're probably right.
When you say you want to start as you mean to go on, I'm not sure why ndt is your ultimate goal rather than, say, t3. If your t3 is low, why not try a little t3?
Yes I did wonder about that - I suppose it depends what he suggests. Would I not need T4 at all then, if that's normal? Could it make things worse if I take T4 as well?
The following is just my own humble pov, so attach as much or as little weight as you feel appropriate.
I think it is largely a 'suck it and see' exercise. Your test results are just a snapshot, so using them alone it's hard to say what will work.
He is likely to prescribe levo and if you convert it it will help bump up your t3 and you'll feel better. If your t3 remains too low, you might benefit from a little extra t3, or ndt, which has both t3 and t4.
How unwell do you feel? Although I hate to suggest that you humour him at the possible risk of remaining unwell, you might just want to give levo a try for six months. It will make your life easier if it works - your relationship with your gp will remain untroubled and you'll get free meds and everyone will be happy.
In any case, it often takes a little tweaking regardless of what you try, so it could take as much time to get your ndt right as it would take to get your levo right.
I'm just aware that ndt isn't a panacea, and even if it does work you've no way to know if levo might have done the same thing whilst keeping your gp sweet. x
Well, I feel unwell enough that I've had to stop running (that I did for 4 years, the last year being bloomin awful! 'Treacle wading' springs to mind) and I now I struggle even walking my dogs round the block. I've also cut my work in half because of the tiredness and brain fog - and I'm self employed - I need as much work as I can get lol. My hair has become thinner, and my weight seems to be gradually creeping up.
I think having read the 'stop the thyroid madness' book, it just doesn't inspire me to try Levo at all. I suppose I'm scared of feeling worse, I'd rather not take anything if I'm going to feel worse.
I totally understand. When your resources are so limited it feels like an unbearable risk. The thing is that ndt can also make you feel unwell, and it does often require adjustments.
I think the proportion of people who do badly on levo is quite high here on this forum, because the people who do well sashay off into the sunset and get on with their lives. I think the highest proportion of people who don't succeed with levo is made up of people who don't feel worse but don't feel better. Rather than making them more ill, it just doesn't seem to do very much. I only saw an improvement of maybe up to 20% (warmer, less achey and my hair came back when I finally got on a high enough dose) on levo alone. T3 got rid of the constipation and oedema, and gave me my strength and stamina back (I started running again). For me the energy didn't last more than six months, but my iron and vitamins aren't good, so I need to work on that. There are so many variables.
Anyway, not that anyone needs to know my saga but I thought it might give you an idea of what the zig-zag journey can look like.
If only there was a test to tell you which meds would suit you best, and then you wouldn't get stuck tweaking them for ages before trying something new.
Maybe it would help if you mentioned ndt to your gp to see what his reaction is. If he's horrified, you will come to your own conclusions about how involved you want him to be.
I would do anything to feel well enough to run again!!! I feel like part of me has been taken away, as running was part of who I was and I felt so much better for doing it. The past year, I felt worse doing it and I constantly had to stop and walk - hills were just mountains, and flats were like hills. I could just about manage down hills, but even they felt like flats (confused?!) Now I just feel like a different person, and I absolutely hate it. I actually have to stop myself looking at runners as I feel so jealous! Crap huh.
Anyway.... I totally appreciate your advice. I think what I'll do is, if my GP suggests that I take Levo, then I'll just going to come straight out with it and ask for NDT. See what he says, suggest buying it myself if that helps his decision and then take it from there. If he point blank refuses to support me, then I guess I have no choice but to go with the Levo. I could try finding another doctor, but frankly I don't have the energy and I certainly can't afford to go private (even if that helps). I actually like my doctor (perhaps that's about to change lol) and I do feel he's quite understanding and supportive, so fingers crossed. And if I do feel worse on it, or it doesn't help then I think at that point, I will do everything I can to persuade him to prescribe me NDT. And if he still won't then - I dunno, worry about it then I guess!!
You always have a choice. Knowing that was very helpful for me.
Hopefully he will continue to be helpful and supportive! Mine are not, so I'm already coming from a different place than you and you should take what I say with a grain of salt.
I'm sad that I wasn't able to continue to run, but it was very helpful to my state of mind to know that I could get there. If I could get well once, it can be done! I just have to keep at it.
Good luck! I look forward to hearing what happens.
Do an Internet search for Thyroid S. ... It is NDT and I get it sent to the the US with no issues. ...However, I don't know what other Countries regulations are.
Gingersnap202, 'Do an Internet search for Thyroid S. ... It is NDT and I get it sent to the the US with no issues.'
It's really not advisable to purchase from any vendor found simply by doing an internet search. There are unscrupulous websites offering to sell you medications that take your money but never actually send what you've paid for.
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