block and replace update

[Yoga54]

Wanted to give an update on coming off block and replace medication for Graves’ disease to help anyone else who might be facing the same predicament. Stopped taking carbimazole and levothyroxine 14 days ago after 2 years of treatment, terrified by the thought of it but my specialist said to just stop taking it altogether and see what happens, well I spent 10 days feeling absolutely dreadful convinced every awful symptom was back. So drained, heart palpitations, legs like lead, joint pain, health anxiety and hot flashes. Nearly rang the hospital to put me straight back on it but I managed to get through and after 10 days of feeling awful I’ve finally recovered and feeling so much better I can’t believe it. Got my energy back and all the awful symptoms have vanished. So far so good although I’m trying to stay as healthy and relaxed as possible. Anyway I just wanted to share my experience and thank goodness for all the advice and knowledge I’ve received from everyone here because it helps massively.

[helvella Administrator]

That is thoughtful and helpful of you.

Many thanks.

[asiatic]

Hi Yoga, I too have just stopped Block and Replace and feeling a little apprehensive as I have been on it for seven long years reducing very very slowly. I am now slightly hypo which apparently can happen and may be permanent or temporary. I take 75mcg. Levo to keep fT3 half way through range where I feel well. I hope we are at the start of a lasting remission. If not we have this wonderful forum to come back to for advice. Good luck.

[Yoga54 in reply to asiatic]

Wow 7 years well done to you, I think I might have gone slightly hypo, it was as if my body had just slowed right down to almost a stop it was truly awful but so far so good, I’m in no doubt it could return but hopefully not just yet, good luck with everything.

[Popscicle in reply to Yoga54]

So what’s the plan? Do you stay off all treatment for good or do you monitor and restart treatment as and when needed?

[Yoga54 in reply to Popscicle]

The endocrinologist team take regular blood tests every 12 weeks to see whether you are lucky enough to stay in remission as there’s a 1 in 2 chance of it happening again unfortunately. You have a blood test and a telephone appointment a week later to discuss if you’re going hyper again but I’d know the symptoms anyway. If it returns they will probably push RAI or thyroid removal or it’s back to the drugs so fingers crossed 🤞 I will be monitored by the hospital for 18 months.

[Cavapoochonowner]

I'm so happy for you.Yes,try to eat as well as you can,keep active and I'm sure you will keep feeling good.