Hi, I have m.e - sadly it is not just badly treated hypothyroidism as inexplicable things come into play - although in the last year I have discovered how big a role my low cortisol v hypothyroid has been playing in my illness. As a result of this discovery I started using T3 only last September with the support of Paul Robinson's facebook page. This took me on a journey where I have ended up being on 60mcgs T3, 4mgs of LDN and anywhere from 25mgs to 60 mgs of hydrocortisone (when stress dosing). However, it was always my aim to try to get on NDT, at least get dome NDT into me as I used it very briefly prior to going T3 only and noticed that my hot flushes went and I started to lose weight - which has always been very hard work since I was diagnosed hypo twenty years ago.
I have to say that I got to a point with the T3 HC combo where my underlying energy was the best it has been since hitting the m.e wall four years ago and my skin on my face and hands and arms was smooth for the first time too. However the flushes and weight gain continued so I still wanted to stabilise my cortisol and try NDT again.
I started by replacing my afternoon 10mcgs dose of t3 with 1 grain, my flushes stopped after a few days, but my skin started drying out and I started getting bad tired eyes and energy level dropped, temps dropped etc. So I thought perhaps I needed to go for a swift switch as the balance of t3 to t4 was so out that any t4 was probably being shunted into RT3. So I have dropped the synthetic t3 and am now on 3 grains of NDT. My sleep is better, flushes gone, blood pressure has dropped, and weight loss happening again - so there is obviously something I need in it that I don't get from T3 alone however much an improvement it was - however, I have lots of hypo symptoms still, dry skin, tired eyes, losing energy, tanking a couple of hours after taking a dose and carpal tunnel pain in my wrists. It appears as if I may need more T3, so may need to take more NDT. But not only is this expensive I am concerned about a build up of RT3, perhaps I am T4 resistant in which case the T4 is not going anywhere useful and may well be being very unuseful. Plus if I end up needing near 6 grains to feel okish for me (bearing in mind my crappy M.e) that would seem to indicate it is the T3 that I need. If only they could extract it from NDT!
So I am torn - do I stick with the NDT and keep increasing?
Do I switch back to T3 quickly before I build anymore RT3 that will need clearing?
Or do I do what I did yesterday and take 2 grains first thing, followed by a third before lunch and then out of desperation took 12.5 T3 in the afternoon which perked me up and appeared to stop the carpal tunnel pain in my wrists?
I would be so interested to hear from anyone else who has traversed this path and how they worked it out.
I am asking here rather than Paul Robinson etc as despite the amazing support I have been given there the focus is purely T3 there.