Managing medication & follow up appointments

Hey everyone Relaxed

I'm 6 weeks post total thyroidectomy today and am waiting on a date for my RAI treatment, and wanted to reach out and ask when people were assigned an endocrinologist and what their follow up appointments post treatment have looked like?

I'm currently on 150mcg of levothyroxine - I was weighed at my post op appointment a few weeks ago and know I’m on slightly too much medication based on weight, but not enough to lower the dose. I didn’t think much of this but I’ve noticed the last week that my fatigue has increased massively and I’m also getting hot easily and feeling light headed quite a lot. 

I’ll get in touch with my nurse in a few days if this doesn’t ease at all but was wondering when people started seeing their endocrinologist because I feel like I’m not going to get very far with managing my levels until they start doing blood tests etc to check this stuff.

 Thanks in advance for any advice or info Relaxed

  • I had TC 11.5 years ago and have never seen an endocrinologist.

    If you are in the UK, I wouldn't suggest you hold your breath for an endo. 

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous

  • Hi Barbara,

    Thanks so much for responding! Relaxed

    I’m sorry to hear that you’ve had TC too and that you’ve never had an appointment with an endo during that whole time! Have you had blood tests to monitor your levels / has your medication dose been changed if needed done by another dr or just not at all?

    I am in the UK and had been told that these things would be monitored for the rest of my life so am sad to hear that might not be the case! 

  • Yes, you should be monitored for life - just most likely not by an endo.

    I used to see my surgeon and oncologist in rotation - but I had my treatment through BUPA and AXA/PPP. An endo was never considered necessary.

    I get my blood tests done at the GP and - because I've spent years understanding how the medication works - my GP pretty much trusts me to set my dose appropriately. At the 5 year mark, my surgeon and oncologist agreed to relax the TSH suppression and I've just been getting on with it.

    After nearly 12 years, I don't trouble the doctors too much anymore. My onc retired during Covid and my surgeon must be near retirement age by now.

    At your stage, I'd expect somebody - surgeon or onc - to see you every 6 months for the first few years and once a year after that. In the first year - when they are optimising your dose, doing RAI and follow up - you should hope to see them more than that.

    But I didn't do things in quite the 'normal' way, so I hope somebody who has gone NHS all the way will confirm what their regime looks like.

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous