Men2a genetic diagnosis

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Hello all, I have been on a journey this past year with blood tests to determine that I do have they mutated gene Men2a and I have been through all the testing to find that my levels are good and there is nothing worrying on my scans. But I am still being told that a total thyroidectomy is the only management, my cousins in the same position but under a different consultant and trust are being monitored. I’m conflicted it what to do.. is anyone else here in the same boat?

k9crazy 1 day ago

Hi Safflower, it sounds like you've had a stressful year with all the testing. It can be an anxious time. Good that your scans are NED though.

Presume you've had your calcitonin and CEA tested for MTC? What are your levels?

Just my opinion (after my surgery) I think depending on the levels and on scans being NED, if it were me I'd be tempted for the time being to go for monitoring, (if that's being offered to you as a choice). I'd be tempted to go back to consultant and ask again why they think a TT is necessary at this stage.

Although most people settle very well on synthetic thyroxine after TT, a minority of us find it a real struggle to get suitable T4 and T3 levels and it can be a real battle to get an Endocrinologist who will listen. It's a balancing act that can make you feel quite unwell. But as I said that's a minority but certainly a consideration I'd take into account.

It may be worth you also joining the Neuroendocrine forum? They may have some more opinions to offer.

If I can help in any other way please just ask.

Best wishes going forward. Let us know how you get on. X

Medullary Thyroid cancer dx May 2023

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Men2a genetic diagnosis