switching from t3 only to NDT any advice

[sulamaye]

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.

[Clutter]

Sulamaye, You could try splitting the 3 grains NDT more evenly throughout the day as you may be feeling the T3 wearing off after lunch or it may be the proportions of T4:T3 in NDT don't suit you and you need the extra T3. Some people do need to add T4 or T3 to NDT to tweak the proportions to what suits them.

[sulamaye in reply to Clutter]

Thanks Clutter, the two grains wears off by about 10am! I suppose I'm concerned that if I add more t3 synthetically that the ratio of T3 will so out weigh the T4 that my body will simply shunt it into RT3. I think I will try taking 25mcgs of T3 on waking tomorrow and see hoe that goes, but to be honest as soon as I was on 50mcgs T3 and 1 grain of NDT I started getting an increase in Hypo symptoms. It's such a pain because my BP is high on T3 only and like I say I am enjoying sleeping and not flushing! There is no rest for the wicked!

[Clutter in reply to sulamaye]

Sulamaye, I don't understand. Why will adding synthetic T3 increase rT3? I thought it was unconverted T4 which increased rT3.

[sulamaye in reply to Clutter]

Because your body also converts t4 into rt3 when it senses u have enough t3 in your blood stream, it is part of its checking mechanism. So logically if you are putting 50 or 60mcgs of t3 into ur body and only 38 or 76 mcgs of t4 from NDT the body is far more likely to convert the t4 into rt3 rather than using it as t3 because potentially it senses it already has plenty of t3 so doesn't need to make anymore. Think about it our thyroid glands make far more t4 than t3 and convert the t4 as and when it's needed, when all is working well. if the blood stream is flooded with available t3 it will not sense any need to make more t3 from the t4 that is present and it clears it by making rt3. Obviously none of us knows where R personal tipping point is. Why else would swapping even I grain for 10mcgs t3 have made me feel more hypo? In theory my t3 available to me had not changed, just some of it was sourced from NDT so you would expect such a swap to have made little difference to my symptoms. However I did feel hypo, dry skin, temps dropped, tired eyes, HR dropped below60 etc, which leads me to suspect my body was turning the t4 into rt3 which in turn was not allowing as much t3 into my cells. Do you see what I mean now? I thought if I went all NDT the ratio Wd be better so the rt3 Wdnt be a problem, but I obviously need more t3 than I get from 3 grains.

[Clutter in reply to sulamaye]

Sulamaye, 1 grain is equivalent to 33.3mcg T3 so swapping it for 10mcg T3 you're bound to feel hypo. Why not stick with 3 grains + 12.5mcg for a few days to see how you feel?

[sulamaye in reply to Clutter]

No it's not it's 9mcgs of T3 and 38mcgs of T4 on my bottle. It's only the equivalent to higher levels of T3 assuming all the T4 is converted. I replaced my afternoon dose of 10mcg synth T3 with 1 grain and within 24 hrs my temps etc started dropping. I have held changes for at least 5 days but just get worse, taking the 12.5 in the afternoon gives me a better evening but from wake up until about 5pm I am barely able to think and speak.