Finding Ndt or t3 not sure where to turn. - Thyroid UK

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Finding Ndt or t3 not sure where to turn.

Tiredgirl02 profile image

Hi everyone, I’m so confused as to where to go next, I have hashimotos, have had for 25 years, my thyroid has been all over the place for the last 3-4 years tsh levels are always 0.08-0.05; and I have the usual problems, exhaustion, dry skin and eyes, pain in my joints, sore gums, weight gain, hair loss, the list goes on. I feel like a 90 year old some days. I have been under an endo for 11 months and they have basically done nothing. In January I was diagnosed with celiac and have been gluten free for 7 months now, touch wood at least my stomach is healing. I recently had an appointment with my endo and asked for ndt, he basically said no, to ndt or t3, he said the ccg in the area won’t let them, I argued the fact that it’s down to the doctor, but he basically said, if he wrote a script, the pharmacy would stop it ( he could still override that if he had the guts) but he said, he agreed that it works and some people need it, he also said it is all down to money! So he told me to buy it and he would keep a close eye on me. I have a few websites where I have found both t3 and ndt, but I’m a bit nervous that I’m getting the real thing and have no idea whether to try ndt or t3 or how much to take, do I stop my Levo, I read that you have to take temperature and have cortisol levels tested and iron and vit d.

Sorry for the long winded post, but I don’t know where to start.

I’m so angry at the state of things with thyroid patients in the nhs, I work in a chemist and the amount of wastage is astronomical, there are numerous drugs on the do not prescribe list, that are being prescribed left right and centre, but not t3 or ndt. Free stuff being given out on minor ailments scheme. Under active thyroid is a serious enough condition to be on a medical exemption, but not serious enough to treat !!!

If anyone can help with places to buy and then what I do once I have it, it would be greatly appreciated thanks in advance.

2 Replies

Perhaps you could post some full thyroid test results with dates, ranges , units. Unusual that you were diagnosed with Hashimoto's 25 years ago, but your' thyroid has been all over the place' only this last 3/4 years, yet your TSH has always been 0.05-0.08. You say you have gone gluten free early this year; have you had VitD, B12, folate and ferritin tested- these have to be optimum for good thyroid/ T4 conversion? Again post your Vit/min results? Perhaps after posting all results, you'll get some replies re T3/NDT- not neceassarily easy meds to introduce! So people are cautious about suggesting you start!

I was only diagnosed recently with hashimotos, the doctor never even suggested it previously, it’s only since I have been fighting for better treatment that they said it was hashimotos, my tsh has been off for approx 4 years now, to be honest, until then I have never even knew I could ask for test results and it’s only the endo who did all the tests, my last t4 was 20.7 nmol, t3 was 5.3nmol, tsh 0.04, my blood count, vit and iron etc were all within “ normal range” the only abnormality was the antibodies and I was then diagnosed with celiac.

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