Interested in NDT...

[Bellerin]

Hello, I'm very new here and was just wondering if somebody could give me some more information about NDT. I've been on 75mcg of Levothyroxine for about a year now and feel worse than before!

I've just recently had some bloods done (without my Levo in my system because I didn't know that made a difference!) so I will post me results when they get back to me.

I was interested in trying NDT, but I'm a bit scared about self-medicating. I've just recently changed GP and rarely get to see him, and I'm waiting for an NHS endo appointment but that's two months a way, and I can't afford to go private.

Can anyone recommend where do get some more, basic information, and also dosages, side effects etc. And also does it replace the Levo?

I have also ordered some T3 to try that but I'm unsure of what dose to try with that as well, if somebody could give alittle help please, I will be eternally grateful Thank you much.

[Rosierebel]

I am just about to go onto NDT as I can't tolerate Levo at all now. Thankfully my GP is supportive as there isn't any alternative on the NHS to Levo. They will continue to monitor and do blood tests etc for me. It can be expensive as I am finding out due to having to go to a private GP. I am shopping around re NDT suppliers, am starting with Tollesbury Pharmacy in Maldon Essex who have been very helpful with information prices etc. Also now found <named pharmacy> in Canada where ERFA is manufactured, they will supply ERFA in 500 tablets which would last me about 15 months I think and save me £200 a year. I think if you shop around it isn't too bad. Depends on the private GP as some insist on having regular consultations which can really put the price up. Good luck I will update online as to how I get on.

{ Edited by admin to remove pharmacy name which is NOT in Canada. ]

[Bellerin in reply to Rosierebel]

Thank you, good luck to you as well, I hope you feel better soon

[linlow in reply to Rosierebel]

Actually, extremely difficult as it may be to get hold of, it is possible to get T3 on the nhs and my endo told me (when I asked him for it) my GP might be persuaded to prescribe NDT.  (Since the head of the surgery had point blank refused to prescribe T3 even after the endo had sent him instruction to do so I never bothered to ask.)

[Rosierebel in reply to linlow]

So far my GP Surgery are unable to prescribe it but are supportive with me taking it, from the research I have done it seems that the NHS is stopping DP's and Endocrinologists prescribing NDT, which is ridiculous, this 'one size fits all policy'  is useless.   I go to see an Endo in June but am not hopeful he/she will prescribe NDT for me.  I think it's because it's synthetic that I can't tolerate Levothyoxin so unlikely T3 which I think is also synthetic will actually help, although I would be up for trying just in case.

[linlow in reply to Rosierebel]

Actually I noticed an immediate difference in taking T3 as opposed to T4 - not that my endo was as enthralled as I was so he halved my dosage and popped some T4 back in and my world collapsed (again!).  So that doesn't really help your sensitivities but.....

I keephanding this link out because it goes into how T3 & T4 are absorbed and used within the body and explains why blood levels do not tell the whole story.  Don't know if it will come in handy for you.  nahypothyroidism.org/thyroi...

(Let's face it there is a whole section of the nhs concentrating, not on restoring health to the nation but on ensuring that Big Pharma increases its profits - and hands over the occasional back-hander.)

[Rosierebel in reply to linlow]

I've just been to see a private doctor this morning and got a prescription for NDT, just posted it off to Tollesbury Pharmacy. She thinks the Endo may prescribe T3 for me, my thoughts are if it is synthetic which I believe it is, I may still have side effects, who knows, I am willing to try it though just in case. If not I will stay with NDT. Had an email from <pharmacy name> in Canada to say I can order NDT from there without prescription so looking into that at the moment, thats in bulk 500 tablets ERFA 1 grain. Need to see if I can check them out a bit before I decide on that but it might work. Will keep you updated as to how I feel on ERFA.

[linlow]

Whatever you decide to do in the interim remember to not take your medications (including the levo) for 24 hours before your endo appointment in case he asks for blood tests.  Similarly for any future blood tests as otherwise the test results will be skewed.  My GP nearly flipped his lid the first time I had a blood test after going on levo because I didn't know this   Of course the endo he sent me running off to see knew better but even so.....