Hello Elaine

Firstly, can I just say thank you so much for your wonderful forum and your kindness in giving support to so many people struggling with health issues.

I’m feeling quite upset today and wondered if you might be able to offer any advice as to where I’m at now in my hyperthyroidism journey?

Basically, I can hardly believe it, but I’ve relapsed once more, making this my 5th episode of overactive thyroid (over a course of fifteen years).

I have been diagnosed with Graves, although my endo wasn’t sure if my last episode was a Graves’ relapse or COVID thyroiditis (he wouldn’t do antibody testing). That was in March 2021. Seven months of carbimazole, and I moved easily into remission.

Everything was good, symptom free, until this month, April 2023. Latest bloods show my FT4 is now back at 43 (10-21); FT3 24.7 (3.5-6.5); TSH 0.01 (0.27-4.2).

This latest relapse was an extremely sudden event – my thyroid swelled up dramatically over the course of 1-2 days just as I was recovering from a viral bug. It was tender for about one week; following which my hyper symptoms returned.

I feel upset that my latest remission was only 18 months long. It also feels upsetting that both this current episode and my last episode seem quite clearly to have been triggered by viral bugs (one being COVID of course), because I can’t avoid these!

I have an endo appt in ten days’ time – I’ve done well up to now in insisting I don’t want RAI or to have my thyroid removed, but with these continual relapses I’m now unsure of what my future path should be. Honestly, I’m becoming frightened that these relapses are going to cause damage to my heart and bone health (my husband – a paramedic - tells me I should be OK because the episodes are always well managed, but the fear is still there).

One thing I have yet to try on my journey is LDN. I wonder if perhaps that could support my immune system and keep it more stable in future? I think I could obtain it privately in the UK.

Any advice or guidance you could give me would be so appreciated, Elaine. I am really struggling this time around and feeling really quite desperate today.

Thank you and kindest regards
Jennifer

Hi Jennifer,
Viruses can definitely cause relapses. And Covid vaccines can as well. I wouldn't recommend RAI or surgery at this point because it's been an unusual two years with Covid, which hopefully is winding down.
Since you do respond well to anti-thyroid drugs, I'd use this approach again but ask for tests for Epstein Barr or Herpes to see if you have a latent infection that tends to flare up. You might need a course of anti-viral drugs. If you're able to see an infectious disease specialist they would likely be better at helping.
LDN does have antiviral properties so your suggestion is a good one. For thyroid disorders a low dose like 1.5 mg usually works well and over time the dose can be increased if needed.
I'd also use a mushroom complex. I use one now to help my immune system and it does help.
Best, Elaine