Liothyronine

[Ralphetts]

Hi ... also new to this community. I was diagnosed some 20-odd years ago. First treatments with Levothroxine were not successful, nor Liothronine/Levothroxine mix, but just Liothyronine has proved the best for me. I have avoided two attempts to stop me using T3 and now I am being forced to reduce my intake. Have others had any similar experiences?

[greygoose]

Quite a few of us, I would imagine - especially those taking T3. There's nothing a doctor likes more than reducing doses of thyroid hormone. Which is why so many of us self-treat. If you're in the UK, it's probably due to the high cost of T3.

[Ralphetts in reply to greygoose]

Thank you ! I am having difficulty with my consultant. Understandably there are no appointments available, but after a teleconsult where I voiced my concerns and adverse effects/symptoms/problems, including accelerated hair loss 🤥. From this he booked an ultrascan and his following letter stated "I found a couple of nodules but have no concerns". No answers to my questions, not even the results of my latest blood test, just that he is satisfied with them. I mailed his secretary repeating my concerns and got a second letter reply. Apparently he took another look at my ultrascan and found more nodules which he is not worried about but again no further comment. I feel lockdown is not helping.

[greygoose in reply to Ralphetts]

I think the first step is to get the actual results from his secretary - with the ranges - and have a look. Nodules are not normally a problem.

[Ralphetts in reply to greygoose]

Thank you ... will do.

[greygoose in reply to Ralphetts]

You're welcome.

[pennyannie]

Hello Ralphetts and welcome to the forum :

I think the current ruling is that only endocrinologists can amend prescriptions of Liothyronine but of course if you are in an area where the CCG have instructed no new patients be prescribed Liothyronine and encouraging established patients on T3 to be switched to T4 - you will face that brick wall, you may well remember and recognise.

If you look into - openprescribing - analyse - you can see by CCG and doctors surgery what is happening in your area so this might help you to know what you are up against.

Would you have a letter anywhere from an endocrinologist stating your need for T3 ?

You could ask for a referral to an endocrinologist on the Thyroid uk list who are reported back by forum members as being " sympathetic " to thyroid patients needs.

Thyroid uk is the charity who support this forum and work tirelessly improving better thyroid hormone treatment for all - check out the website and email for the current list.

[Ralphetts in reply to pennyannie]

Thank you ! Will take a look.