Moving onto NDT

[LexxiiB]

Started some NDT last Saturday, and as per the guidelines on one of the websites advised by a member on here I am still working away at a quarter grain AM and then the same again PM. Aiming to build up slowly!

Can I ask, do you think that I should be still taking some of my Levo whilst building up my NDT as my T4 input will have crashed and I’m starting to feel the effects of this. I know it’s possibly only temporary whilst I let my body get used to the additional T3 but I feel pretty awful at the moment.

I am surprised at how quickly I’ve declined in five days, just shows how reliant we are on the T4 alone.

Any advice would be fab!

Thanks

[LexxiiB]

Thankyou for your help, I concentrated so much on controlling the NDT that I forgot or didn’t consider how the reduction in levo might effect me....doh!!! 🙄

[MaisieGray in reply to LexxiiB]

What dose of T4 were you on? You are on a very low dose of NDT (19 mcg T4 / 4.5 mcg T3) = c37 mcg T4 loose equivalent)

[LexxiiB in reply to MaisieGray]

100mcg levo. I have only recently swapped to NDT (5 days ago) and was advised to build up slowly. I am aiming for much more but I’m being cautious. It’s taken me 5 years of suffering to pluck up the courage to source my own so I’m very cautious....

[MaisieGray in reply to LexxiiB]

With thyroid meds it is often counter-productive to go too low and too slow because of the negative feedback mechanisms within the HPA axis; but in any case, as you were already taking T4 it was only the T3 element that you needed to acclimatise to. If it were me I'd add back in 50 mcg of T4 which at least would bring you up to c 87 mcg T4.

[Hidden in reply to LexxiiB]

When I switched from Levo to NDT I started with one half in the morning and another in the afternoon. I just stopped Levo and went straight onto NDT with no problems. I increased by another 1/2 every two weeks.

[TSH110]

In theory you can stop the T4 which takes about 6 weeks to dissipate away so will still be having an effect as the NDT is built up. Some people stop levo one day and start a full dose of NDT the next but I had heart problems so had to go cautiously. I did as TheCat346 reduced Levo by 25mcg and replacing with 1/4 grain NDT. I used the Thyroid Patient Advocacy guidelines which I will post directly for timing. I had to split the dose or I felt odd. Beneficial effects were almost immediate (within 3 days) and miraculous. I was on 125 Levo and found 1.25 grains ThyroidS returned me to normality after 2 years of feeling rubbish on levothyroxine despite achieving a TSH between 0.2-0.5. I have DIO2 gene mutation making me a poor converter of T4 to T3 which is probably why I felt bad on it but NDT put me right.

Sorry you don’t feel good so far, perhaps like me you react very quickly to medications. I hope the results are in the same league as mine were. I have never looked back. 🍀☘️🍀

[TSH110]

This is the link which is very informative

tpauk.com/main/article/trea...

[Jeannie]

Hi there!!

Glad you got NDT. I note your health is deteriorating when you’ve reduced your T4 which actually tells you that your body is capable of absorbing and doing its thing.

You’re very lucky indeed. I do not seem to respond to T4 Dr Skinner (deceased) used say it was like I hadn’t taken anything!! I would slowly ween yourself off OR could you try both?? I personally think it’s trial and error.

Can I ask who prescribes your NDT ?? I’m Warwickshire West Midlands and need to find a Dr willing to do a private prescription

Wishing you all the best!!!!!!!!!!! We have to keep going! & One day those deaf and blind endocrinologist will start listening to the clinical symptoms of patients not just blood tests!!!!!!!!

[LexxiiB in reply to Jeannie]

Hi Jeanie, I’m afraid no one prescribed the NDT, I have sourced it myself. My doctors won’t talk to me about my issues because I present “in range” and therefore there’s apparently nothing wrong with me. I feel that I have no alternative than to take matters into me own hands, it’s a very sad situation really! X

[silverfox7]

I made a straight swap over as STTM suggested and realised that I should have a store of T4 carrying me through until I got my NDT up to the right area. So in theory your stored T4 reduces as your NDT increases. I was finding though I was wanting to add in more NDT about 1-2 days early which I went with. I think I might have had a slight dip but not too noticeable so I didn't go too mad and did a little bit more resting but itcdoon passed.

[Hidden]

Im always confused by this building up to your prescribed dose I never do this and never had any ill effects and maybe this has a lot to do with me not having a thyroid?

[Hidden in reply to Hidden]

I didn't either. Started at full dose of levo; dropped that and went to a full dose of NDT.

[LexxiiB]

I guess it may depend how quickly you react to drugs???

All I know is that at one point yesterday on the motorway I literally forgot how to drive my car! Brain fog, anxiety, swelling, dry skin and rapid weight gain this week have all been indicators for me.... but that’s the beauty of us, we are all very different!!