How many of you are on NDT instead of levo?

[Ajva]

I am just wondering how many people in the UK take NDT thyroid instead of levo? It is costing me a lot but i took levo for a few days last year and it made me feel awful with heart racing. I do have POTs which makes me sensitive to anything increasing HR.

[SeasideSusie Remembering]

Ajva

You took Levo for a few days, had a reaction then went straight onto buying your own NDT?

Did you discuss your reaction with your GP? Did you try different brands of Levo to see if another one suited you better with no adverse reaction? If not liquid Levo is available. All avenues should have been exhausted, including referall to an endo to see if NDT could be prescribed on a named patient basis before resorting to buying your own medication.

[Ajva in reply to SeasideSusie]

Yes a few days I kept passing out. Every time I stood up levo, tried different dosages and brands but after a few days had to stop. Saw endo they are clueless he said that is not possible that levo could do that. Saw cardiologist he said it is 100% possible as thyroid medication increases HR. If you already (like me) have heart rate issues then that’s going to trigger things.

[shaws Administrator]

Unfortunately Ajva, in the UK NDTs have been withdrawn from the NHS by those we'd expect to be more knowledgeable about how some people cannot improve on levothyroxine.

Patients should be permitted to be prescribed options.

It just goes to show how inept many of those who we'd expect to be more knowledgeable - and able to prescribe options for patients when levo doesn't improve their health, or even makes their symptoms worse.

thyroiduk.org/if-you-are-hy...

[serenfach]

There are many of us here in the UK on NDT, but we have to source it ourselves and dose by ourselves as the NHS is not in agreement that NDT is of any use. Yes, it costs us, but a price cannot be put on your health.

I am sorry you found you could not tolerate levo as life is much simpler if you get on with it. I hope you find something that agrees with you and you feel better soon.