Thyroid UK
84,394 members99,379 posts

Intro and question

Hi I was diagnosed hypothyroid about 8 years ago with a multinodular goitre. 4 years ago I noticed I was having trouble swallowing and felt the nodules in my goitre were getting bigger so I pushed my GP into sending me for an ultrasound. Fast forward 5 months I had a total thyroidectomy for thyroid cancer. I have was discharged from hospital taking Lionine which my GP soon stopped as it was too expensive and I was changed to levothyroxine. I have never felt well since changing and feel completely drained. I have been diagnosed with chronic fatigue, osteoarthritis, hypertension since. I also have cervical spine stenosis, anyklosing spondylitis, degenerative spine disease and depression. I have discussed changing to Lionine with my endocrinologist but he poo pooed the thought of putting me on a T3 medication as well as T4 as a ridiculous idea and unfounded. After reasing Stop the hypothyroid madness I feel I need to be using a dessicated thyroxine and wonder if I can get it on prescription or if I would need to buy it myself. Does anyone have any experience of this medication, and how to get it?

1 Reply

Welcome to our forum,

I am sorry you've been unwell for 8 years and have other unpleasant symptoms to contend with as well.

Members use NDT and it can be sourced but they will send you a Private Message as no info can be put on the open forum.

Why are Enocriinologist so unhelpful with regard to helping patients? Maybe it is just a little bit complicated for them to understand.

New Research has shown that many need T4/T3 combination so it is your Endocrinologist who isn't up to date with Research.

NDT contains all of the hormones our healthy gland would have produced and many get well on it. You'd probably get on better on your own. I will close your post so that a Private Message will be send to you and you will see a red bubble appear on the top line.

The British Thyroid Association have made False Statements about NDT in order that it is no longer prescribed in the UK. They think more of Big Pharma it would seem to me than sick patients desperate for help. It is o.k. for those who take levo and feel well but nearly all our members do not and it is quite a substantial amount of people to remain unwell.

I would edit your heading to read 'Where to source NDT' and ask for a Private Message to be sent to you. To edit press the down arrow along from follow post. I will then close the post so that only private messages can be sent.


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